ABSTRACT

OBJECTIVE:

To understand the social representations of HIV and their repercussions for the healthcare among recently diagnosed youth.

METHODS:

This qualitative research was conducted within PrEP15-19, a study that analyzed the effectiveness of HIV pre-exposure prophylaxis in adolescents aged 15 to 19 years. Semi-structured interviews were conducted with nine participants, of whom eight identified themselves as gay men and one as travesti. All were diagnosed with HIV as this study was conducted in São Paulo and Salvador from 2019 to 2020. The interview guide covered aspects of HIV prevention and repercussions on care. Data were thematically analyzed and interpreted based on social representations theory.

RESULTS:

Participants reported experiences of stigma and discrimination related to their sexual orientation and gender identity and expression. Their diagnosis renewed these painful experiences as it referred to the common-sense social representations of HIV and AIDS based on precarious knowledge of HIV prevention, treatment, and transmission. Analysis of facilitators and barriers to care strongly related treatment adherence to health services welcoming people with information, support, and careful listening. Barriers were related to health services’ constraints, such as lack of privacy, professionals’ hostility, and insecurity regarding diagnosis confidentiality.

CONCLUSIONS:

The social representations of HIV are an important dimension of youths’ experience receiving their diagnosis, especially since it renews stories of violence, homophobia, transphobia, stigma, and discrimination. Understanding this based on youths’ narratives is an important tool to formulate public policies aimed at the needs of this age group. Therefore, building new social representations to mitigate stigma constitutes one of the most important elements to face the HIV epidemic among adolescents and youth.

DESCRIPTORS:
Social Representation; Stigma; Adolescent; HIV; Diagnosis

INTRODUCTION

HIV combination prevention is understood worldwide as a set of programs based on rights and scientific evidence that articulates biomedical, behavioral, and structural interventions in communities to meet the needs of people and communities regarding HIV prevention¹1 Joint United Nations Programme on HIV/AIDS (UNAIDS). Combination HIV prevention: tailoring and coordinating biomedical, behavioural and structural strategies to reduce new HIV infections. 2010. https://www.unaids.org/en/resources/documents/2010/20101006_JC2007_Combination_Prevention_paper
https://www.unaids.org/en/resources/docu... . In Brazil, treatment for all people living with HIV is a biomedical intervention based on antiretroviral drugs that aims to prevent HIV transmission by achieving undetectable viral load and adherence to treatment, improvement in patients’ quality of life, and reduction in hospitalizations and infections due to opportunistic diseases²2 Brasil. Ministério da Saúde. Secretaria de Vigilância em Saúde. Boletim Epidemiológico Especial - HIV/Aids 2022. Brasília, DF: Ministério da Saúde; 2022. https://www.gov.br/aids/pt-br/central-de-conteudo/boletins-epidemiologicos/2022/hiv-aids/boletim_hiv_aids_-2022_internet_31-01-23.pdf/view
https://www.gov.br/aids/pt-br/central-de... . However, several barriers to access and adherence to care in health services must be mitigated so treatment for all people can greatly impact and sustainably respond to the HIV and AIDS epidemic in adolescents and youth since coping with it includes issues that exceed attention to medical prevention and treatment. Fighting against it must include proposals in the social spheres of health, education, science, economics, politics, and social relationships³3 Maia ECA, Junior LPR. Modos de enfrentamento do HIV/AIDS: direitos humanos, vulnerabilidades e assistência à saúde. Rev NUFEN. 2019; 11(1): 178-93. https://doi.org/10.26823/RevistadoNUFEN.vol11.n01ensaio48
https://doi.org/10.26823/RevistadoNUFEN.... .

Various contexts have shown greater HIV and AIDS incidence, higher late diagnosis rates, and worse indicators for HIV care continuum among adolescents and youth than among adults⁴4 Brasil. Ministério da Saúde. Secretaria de Vigilância em Saúde. Boletim Epidemiológico Especial - HIV/Aids 2021. Brasília, DF: Ministério da Saúde; 2021. https://www.gov.br/saude/pt-br/centrais-de-conteudo/publicacoes/boletins/epidemiologicos/especiais/2021/boletim-epidemiologico-especial-hiv-aids-2021.pdf/view
https://www.gov.br/saude/pt-br/centrais-... ^{), (5}5 Enane LA, Vreeman RC, Foster C. Retention and adherence: global challenges for the long-term care of adolescents and young adults living with HIV. Curr Opin HIV AIDS. 2018; 13(3): 212-9. https://doi.org/10.1097/COH.0000000000000459
https://doi.org/10.1097/COH.000000000000... ^{), (6}6 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(3): 128-35. https://doi.org/10.1089/apc.2013.0345
https://doi.org/10.1089/apc.2013.0345... . Youth and adolescents in general find that the diagnosis of the infection includes HIV stigma, traumatic experiences, and lack of a support network, culminating in depression, anxiety, and suicidal ideation⁷7 Martinez J, Lemos D, Hosek S. Stressors and sources of support: the perceptions and experiences of newly diagnosed latino youth living with HIV. AIDS Patient Care STDS. 2012; 26(5): 281-90. https://doi.org/10.1089/apc.2011.0317
https://doi.org/10.1089/apc.2011.0317... causing the postponement or difficulty in adhering to treatment⁸8 Enane LA, Apondi E, Omollo M, Toromo JJ, Bakari S, Aluoch J, et al. ‘I just keep quiet about it and act as if everything is alright’ - the cascade from trauma to disengagement among adolescents living with HIV in western Kenya. J Int AIDS Soc. 2021; 24(4): e25695. https://doi.org/10.1002/jia2.25695
https://doi.org/10.1002/jia2.25695... . Moreover, adult and young people who identify with sexual orientations and gender identity outside the cis-heteronormative standard are more vulnerable to the stigma, discrimination, and violence that negatively impacts their health⁹9 Braga IF, Oliveira WA de, Silva JL da, Mello FCM de, Silva MAI. Family violence against gay and lesbian adolescents and young people: a qualitative study. Rev Bras Enferm. 2018; 71(Suppl 3): 1220-7. https://doi.org/10.1590/0034-7167-2017-0307
https://doi.org/10.1590/0034-7167-2017-0... ^{), (10}10 Magno L, Dourado I, Silva LAV da, Brignol S, Amorim L, MacCarthy S. Gender-based discrimination and unprotected receptive anal intercourse among transgender women in Brazil: a mixed methods study. PLoS One. 2018; 13(4): e0194306. https://doi.org/10.1371/journal.pone.0194306
https://doi.org/10.1371/journal.pone.019... ^{), (11}11 Paulino DB, Pastor-Valero M, Machin R. ‘This family rejection harmed my health as well’: intersections between the meanings of family and health for trans people and family members in a trans healthcare service in Brazil. Glob Public Health. 2022; 17(7): 1330-42. https://doi.org/10.1080/17441692.2021.1924222
https://doi.org/10.1080/17441692.2021.19... ^{), (12}12 Malta M, Gomes de Jesus J, LeGrand S, Seixas M, Benevides B, Silva M das D, et al. ‘Our life is pointless...’: exploring discrimination, violence and mental health challenges among sexual and gender minorities from Brazil. Glob Public Health. 2020; 15(10): 1463-78. https://doi.org/10.1080/17441692.2020.1767676
https://doi.org/10.1080/17441692.2020.17... . Thus, adolescents and youth who belong to sexual minorities and receive an HIV diagnosis face an even more adverse scenario. However, the scarce qualitative literature on adolescent and young MSM and trans women living with HIV has only addressed care adherence and continuity¹³13 Harper GW, Wagner RL, Popoff E, Reisner SL, Jadwin-Cakmak L. Psychological resilience among transfeminine adolescents and emerging adults living with HIV. AIDS. 2019; 33(Suppl 1): S53-S62. https://doi.org/10.1097/QAD.0000000000002174
https://doi.org/10.1097/QAD.000000000000... ^{), (14}14 Harper GW, Bruce D, Hosek SG, Fernandez MI, Rood BA. Resilience processes demonstrated by young gay and bisexual men living with HIV: implications for intervention. AIDS Patient Care STDS. 2014; 28(12): 666-76. https://doi.org/10.1089/apc.2013.0330
https://doi.org/10.1089/apc.2013.0330... ^{), (15}15 Li H, Wei C, Tucker J, Kang D, Liao M, Holroyd E, et al. Barriers and facilitators of linkage to HIV care among HIV-infected young Chinese men who have sex with men: a qualitative study. BMC Health Serv Res. 2017; 17: 214. https://doi.org/10.1186/s12913-017-2158-7
https://doi.org/10.1186/s12913-017-2158-... ^{), (16}16 Sterrett-Hong EM, Crosby R, Johnson M, Mayo-Wilson LJ, Arroyo C, Machinga R, et al. Socio-ecological influences on HIV care engagement: perspectives of young black men who have sex with men living with HIV in the southern US. J Racial Ethn Health Disparities. 2021; 10(4): 1798-1808. https://doi.org/10.1007/s40615-022-01364-w
https://doi.org/10.1007/s40615-022-01364... , with little attention to patients’ recent diagnosis experiences and their meaning and implications.

Based on these limitations, this study highlights how adolescents and youth made sense of receiving an HIV diagnosis according to social representations theory¹⁷17 Moscovici S. Representações sociais: investigações em psicologia social. 11. ed. Petrópolis: Vozes; 2015., which consists of systems of interpretation by which people interact with the world and with others, exchange knowledge, and develop individual and collective relationships and behaviors¹⁸18 Jodelet D, organizadora. Les représentations sociales. Presses Universitaires de France; 2002.. Thus, this study aims to understand the repercussions of social representations of HIV in the care experiences of youth who were recently diagnosed with HIV considering the barriers produced over time by the social representations of HIV and AIDS, their negative aspects (associated with death, promiscuity, and guilt), and the impact of these representations on healthcare processes (testing, diagnosis, and initiation of antiretroviral therapy [ART]).

METHODS

This study was nested in a qualitative investigation on access to services and linkage to care for HIV and sexually transmitted infections within community-based interventions with delivery of testing and HIV pre-exposure prophylaxis (PrEP) to youth and adolescents, in the municipalities of São Paulo and Salvador^aaReport of the research “Trajetórias e processos de vinculação ao cuidado para IST e HIV entre adolescentes e jovens homens que fazem sexo com homens, travestis e mulheres transexuais que participam de intervenções em comunidade para oferta de testagem e PrEP” [Trajectories and processes of linkage to care for STI and HIV among adolescents and young men who have sex with men, travestis, and transsexual women who participate in community interventions to offer testing and PrEP], carried out by the Graduate Program in Collective Health at Universidade Católica de Santos, Santos (SP), which received funding from Conselho Nacional de Desenvolvimento Científico e Tecnológico and the Secretariat of Health Surveillance of the Ministry of Health (grant 404055/2018-4)., participants in the PrEP1519 demonstration study. The main objective of PrEP1519¹⁹19 Dourado I, Magno L, Greco DB, Zucchi EM, Ferraz D, Westin MR, et al. Interdisciplinaridade na pesquisa sobre prevenção do HIV: a experiência do protocolo de estudo PrEP1519 entre HSH adolescentes e mulheres trans no Brasil. Cad Saúde Pública. 2023; 39(13): e00143221. https://doi.org/10.1590/0102-311XEN143221
https://doi.org/10.1590/0102-311XEN14322... was to analyze the effectiveness of PrEP in adolescent and young MSM, transgender women, and travestis aged 15 to 19 years in São Paulo (state of São Paulo), Belo Horizonte (state of Minhas Gerais), and Salvador (state of Bahia). All youth who accessed the services following demand-building strategies²⁰20 Magno L, 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. 2023; 52(2): 703-19. https://doi.org/10.1007/s10508-022-02371-y
https://doi.org/10.1007/s10508-022-02371... -communication and peer education activities regarding the study, PrEP, and combination prevention-and who tested positive for HIV were invited to participate in the component of the study regarding HIV incidence. In São Paulo, diagnosed youth began ART in the PrEP service until they were referred to a public HIV outpatient clinic. In Salvador, diagnosed youth were advised on how to access public health services to begin ART. This analysis was conducted at the São Paulo and Salvador, from 2019 to 2020.

Participants were selected by previous contact with healthcare providers and PrEP service navigators. The selection considered recent diagnosis and its possible negative outcomes to participants’ mental health following data collection. The interviews were conducted by experienced field researchers trained in HIV research and took place in locations that respected youths’ convenience and ensured their privacy. In Salvador, five in-person interviews were conducted on the premises of the PrEP service. In São Paulo, five interviews were conducted at the university or in places chosen by participants. The interviews lasted from about 60 to 90 minutes and were audio-recorded with the youths’ permission.

The interview guide covered themes related to health care, motivations for participating in the PrEP research, testing experience, treatment initiation, repercussions of the diagnosis on personal and social relationships and quality of life, and future prospects.

The interviews were transcribed and reviewed, and the analytical process was organized in two stages. Initially, extensive readings guided the construction of empirical categories that were then grouped into thematic nuclei that were synthesized into three analytical categories addressing stigma, welcoming, and barriers to care. The quotes illustrating the data from the analytical categories are followed by the participant’s pseudonyms, age, and study site.

This study was approved by the Research Ethics Committees of the School of Medicine at Universidade de São Paulo (opinion no. 3,082,360) and the Institute of Collective Health at Universidade Federal da Bahia (opinion no. 3,224,840) and follows Resolutions no. 466/2012 and 510/2016 of the Brazilian National Health Council. Youth signed informed consent forms.

RESULTS

Sociodemographics and living conditions

Regarding gender identity, nine participants identified themselves as men and one as a travesti. They were aged from 18 to 20 years. Regarding sexual orientation, seven youths referred to themselves as gay; two, as bisexual; and one, as pansexual; four declared themselves white; three, as Mixed-race; and three, as Black; five youths had completed high school, two attended high school, and three had begun higher education (Table 1).

Reports on living conditions described greater constant or sporadic socioeconomic difficulties, including housing instability. Some participants were unemployed at the time of the interview, whereas others reported having transactional sex due to financial difficulties. Regarding place of residence, except for one participant from São Paulo who lived in the central region, the other participants lived in peripheral (São Paulo) or working-class neighborhoods (Salvador).

Reenacting previous stigma and discrimination experiences upon being diagnosed with HIV

The narratives of youth about receiving their diagnosis portrayed the difficulties and intensity of this experience due to negative social representations of HIV and AIDS symbolisms that are culturally embedded and widespread in common sense. The symbolic and psychological strength of social representations referred to the fear of losing their gender identity references, which affected the meaning youth attribute to reality and impacted their self-image. Participants expressed feelings of abandonment, loneliness, fear, and rejection, along with uncertainties about their future. These emotions highlight significant personal, social, and professional consequences, particularly concerning the management of their diagnosis information.

The worsening and reenactment of stigmatization, discrimination, and violence at the time participants received their diagnosis referred to vulnerabilities related to disclosing their sexual orientation and gender identity and expression, especially to their families and schools, contexts that gave rise to these feelings.

Participants expressed moments of disbelief upon receiving their diagnosis. In certain instances, societal perceptions linking HIV to death led to conflicting emotions, ranging from self-care and to risky behaviors. The impact of the diagnosis and prevailing social views on HIV were influenced by the information youths received, often perpetuating stigma through associations with deceased artists and family members who had AIDS. Additionally, stereotypes like the “stealthier” phenomenon, in which there’s a deliberate intent to transmit the HIV virus, also played a role in shaping their perceptions.

The acknowledgment of their diagnosis by young people and their apprehension about facing stigma and discrimination from family and social circles highlighted vulnerable aspects related to homophobia, racism, and other forms of violence that preceded their diagnosis. These factors often led participants to delay seeking treatment.

Some interviewees described significant difficulty, and in some cases, impossibility, in disclosing their diagnosis to family members and partners. The tendency to idealize secrecy about their diagnosis emerged as a coping mechanism to alleviate insecurities when facing reality. Consequently, maintaining silence appeared to lessen the fear of having their gender identity associated with an HIV diagnosis. Sharing their diagnosis with partners often evoked feelings of disappointment, frustration, and powerlessness among participants.

Friends, in turn, were those with whom youths managed to share their diagnosis, receiving support and greater comfort around the expected confidentiality.

The experience of the diagnosis combined awareness and reflection on sexual relationships prior to the diagnosis, a time in which participants reported having failed to protect themselves and defined as situations in which they surrendered to pleasure and were unable to control prevention.

Receiving the HIV diagnosis was a very difficult experience for participants to process due to the information they had about HIV, the references linked to the strength of social representations, and the weight of societal stigmas.

Friendly health services and adherence to care as facilitators for building new life projects

Participants deemed health services as important spaces to obtain information, and teams’ service facilitated participants accepting ART and changing their understanding of HIV infections.

Upon reflecting on their lives and future plans, some youths highlighted psychological care as an integral part of their treatment. It provided an opportunity to address various aspects of their mental health beyond their diagnosis, such as dealing with traumatic experiences, relationship challenges, and symptoms like anxiety and depression. Psychological services were crucial in assisting youths experiencing feelings of guilt, loneliness, fear, and uncertainty. At this critical juncture, they needed support rather than being viewed through the lens of societal misconceptions that associate HIV and AIDS with “unnatural sex” or “perversion”.

Constraints in healthcare places

Participants reported negative experiences related to health services, such as tensions around privacy, hostility from professionals, and insecurity regarding the confidentiality of their diagnosis.

Participants also reported the negative aspects of their interactions with service workers, pointing out weaknesses in these services, such as rudeness, lack of ethics, and impoliteness.

The challenges in accessing information and professionals’ tendency to make judgmental assumptions, blaming youths for their exposure to infection risks, were manifestations that reinforce the stigma of HIV linked to promiscuity, whether implicitly or explicitly.

The delay in scheduling appointments also concerned youths due to the possibility of running out of medication.

Despite contextual differences between study sites, participants’ narratives often mentioned negative imagery and perceived barriers regarding HIV and AIDS. Reports showed gaps in family and school environments regarding information on the subject and identified health spaces as the most appropriate for care, despite the mentioned weaknesses.

DISCUSSION

The social representations of HIV constitute an important dimension of the diagnostic experience for youths, especially as they relive stigmatizing experiences of violence, homophobia, transphobia, discrimination, inequality, exclusion, and vulnerability that are loaded with suffering and are renewed by the diagnosis. The AIDS metaphors constructed at the beginning of the epidemic in the 1980s-associated with death, promiscuity, and punishment, loaded with discriminatory aspects, and stressed by the media up to the 1990s-remain strongly present in the symbolic context and in the construction of social representations. These representations disregarded human dignity and its vulnerabilities, occurring in the stigmatization, violence, and discrimination youths experienced in their families, schools, and public spaces and giving rise (as its main consequence) to the notion that these youths, learning of their HIV diagnosis, again find themselves incapable, alone, worthless, and enduring punishment.

The results in this study show that diagnosis is a difficult and intense moment marked by incredulity. Other studies with adolescents and youth in general in other contexts describe diagnosis as a stressful moment that precedes a period characterized by anger, depression²¹21 Jimu C, Govender K, Kanyemba R, Ngbesso M-JO. Experiences of intimate relationships, stigma, social support and treatment adherence among HIV-positive adolescents in Chiredzi district, Zimbabwe. Afr J AIDS Res. 2021; 20(3): 214-23. https://doi.org/10.2989/16085906.2021.1979059
https://doi.org/10.2989/16085906.2021.19... , and a reluctance to believe the result that leads to multiple tests⁷7 Martinez J, Lemos D, Hosek S. Stressors and sources of support: the perceptions and experiences of newly diagnosed latino youth living with HIV. AIDS Patient Care STDS. 2012; 26(5): 281-90. https://doi.org/10.1089/apc.2011.0317
https://doi.org/10.1089/apc.2011.0317... . Other studies with adolescents and youths⁸8 Enane LA, Apondi E, Omollo M, Toromo JJ, Bakari S, Aluoch J, et al. ‘I just keep quiet about it and act as if everything is alright’ - the cascade from trauma to disengagement among adolescents living with HIV in western Kenya. J Int AIDS Soc. 2021; 24(4): e25695. https://doi.org/10.1002/jia2.25695
https://doi.org/10.1002/jia2.25695... ^{), (22}22 Merrill KG, Campbell JC, Kennedy CE, Burke VM, Miti S, Frimpong C, et al. ‘So hurt and broken’: A qualitative study of experiences of violence and HIV outcomes among Zambian youth living with HIV. Glob Public Health. 2022; 17(3): 444-56. https://doi.org/10.1080/17441692.2020.1864749
https://doi.org/10.1080/17441692.2020.18... show how this traumatic diagnosis renews other traumatic and stigmatizing experiences related to physical, psychological, and sexual violence. This study, focused on adolescent and young MSM, trans women, and travestis, found, in addition to the aspects the literature has portrayed, experiences that included a history of stigma, discrimination, and violence related to gender and sexuality that impacted the management of diagnosis and initiation of ART. This finding highlights the importance of conceiving the moment of diagnosis and the initiation of HIV care for this population under potentially different facets of vulnerability.

Social representations of HIV, characterized by stigma and discrimination, play a crucial role as a mediator influencing individuals’ self-confidence and their decision to disclose their diagnosis within social circles. Therefore, the contexts of intimate relationships, family dynamics, and friendships undergo thorough scrutiny, prompting individuals to employ defense mechanisms such as silence and secrecy about their diagnosis. These strategies serve as primary protective measures against potential abandonment and rejection. This finding is aligned with the literature on adolescents and youths in general living with HIV⁷7 Martinez J, Lemos D, Hosek S. Stressors and sources of support: the perceptions and experiences of newly diagnosed latino youth living with HIV. AIDS Patient Care STDS. 2012; 26(5): 281-90. https://doi.org/10.1089/apc.2011.0317
https://doi.org/10.1089/apc.2011.0317... ^{), (23}23 Rao D, Kekwaletswe TC, Hosek S, Martinez J, Rodriguez F. Stigma and social barriers to medication adherence with urban youth living with HIV. AIDS Care. 2007; 19(1): 28-33. https://doi.org/10.1080/09540120600652303
https://doi.org/10.1080/0954012060065230... regarding their avoidance of sharing their diagnosis and/or difficulties disclosing it²⁴24 Zanoni BC, Sibaya T, Cairns C, Haberer JE. Barriers to retention in care are overcome by adolescent-friendly services for adolescents living with HIV in South Africa: a qualitative analysis. AIDS Behav. 2019; 23(4): 957-65. https://doi.org/10.1007/s10461-018-2352-6
https://doi.org/10.1007/s10461-018-2352-... . Participants also often mention fearing rejection after disclosing their diagnosis in their social circles⁷7 Martinez J, Lemos D, Hosek S. Stressors and sources of support: the perceptions and experiences of newly diagnosed latino youth living with HIV. AIDS Patient Care STDS. 2012; 26(5): 281-90. https://doi.org/10.1089/apc.2011.0317
https://doi.org/10.1089/apc.2011.0317... ^{), (25}25 Audi C, Jahanpour O, Antelman G, Guay L, Rutaihwa M, van de Ven R, et al. Facilitators and barriers to antiretroviral therapy adherence among HIV-positive adolescents living in Tanzania. BMC Public Health. 2021; 21: 2274. https://doi.org/10.1186/s12889-021-12323-1
https://doi.org/10.1186/s12889-021-12323... , to which a component of guilt²⁶26 Galano E, Turato ER, Delmas P, Côté J, Gouvea A de FTB, Succi RC de M, et al. Experiences of adolescents seropositive for HIV/AIDS: a qualitative study. Rev Paul Pediatr. 2016; 34(2): 171-7. https://doi.org/10.1016/j.rppede.2015.08.019
https://doi.org/10.1016/j.rppede.2015.08... ^{), (27}27 Marques HH de S, Silva NG da, Gutierrez PL, Lacerda R, Ayres JRCM, DellaNegra M, et al. A revelação do diagnóstico na perspectiva dos adolescentes vivendo com HIV/AIDS e seus pais e cuidadores. Cad Saúde Pública. 2006; 22(3): 619-29. https://doi.org/10.1590/S0102-311X2006000300017
https://doi.org/10.1590/S0102-311X200600... is added to such fear and anxiety. Moreover, considering the scarcity of studies on the repercussions of HIV diagnosis in adolescents and youths belonging to sexual and gender minorities, this study contributes to the scientific literature by explaining that the possibility of disclosure to the family includes the fear of renewed discrimination and abandonment, reproducing their experiences of disclosing or discovering their non-heterosexual orientation. On the other hand, friendships offer the safest circle of disclosure as adolescent and young MSM and travestis can more clearly manage and anticipate which people under what circumstances would better protect their privacy in face of their previous experiences of violence and discrimination associated with gender and sexuality.

The findings in this study show that adolescents and youths lacked knowledge about HIV prevention, which was associated with failures in family and school environments. Studies with young MSM in China¹⁵15 Li H, Wei C, Tucker J, Kang D, Liao M, Holroyd E, et al. Barriers and facilitators of linkage to HIV care among HIV-infected young Chinese men who have sex with men: a qualitative study. BMC Health Serv Res. 2017; 17: 214. https://doi.org/10.1186/s12913-017-2158-7
https://doi.org/10.1186/s12913-017-2158-... and the United States¹⁶16 Sterrett-Hong EM, Crosby R, Johnson M, Mayo-Wilson LJ, Arroyo C, Machinga R, et al. Socio-ecological influences on HIV care engagement: perspectives of young black men who have sex with men living with HIV in the southern US. J Racial Ethn Health Disparities. 2021; 10(4): 1798-1808. https://doi.org/10.1007/s40615-022-01364-w
https://doi.org/10.1007/s40615-022-01364... also show their lack of knowledge about HIV, its diagnosis, and related terms and point to gaps in public health policies regarding the dissemination of technologies to prevent infection and transmission. In this study, after diagnosis, HIV clinics are seen as safe places for obtaining information due to the precarious information on prevention, diagnosis, and treatment in other environments.

Several studies show that psychosocial support for youth living with HIV can increase the chances for the timely initiation and continuation of treatment that aims to achieve undetectable viral loads⁸8 Enane LA, Apondi E, Omollo M, Toromo JJ, Bakari S, Aluoch J, et al. ‘I just keep quiet about it and act as if everything is alright’ - the cascade from trauma to disengagement among adolescents living with HIV in western Kenya. J Int AIDS Soc. 2021; 24(4): e25695. https://doi.org/10.1002/jia2.25695
https://doi.org/10.1002/jia2.25695... ^{), (15}15 Li H, Wei C, Tucker J, Kang D, Liao M, Holroyd E, et al. Barriers and facilitators of linkage to HIV care among HIV-infected young Chinese men who have sex with men: a qualitative study. BMC Health Serv Res. 2017; 17: 214. https://doi.org/10.1186/s12913-017-2158-7
https://doi.org/10.1186/s12913-017-2158-... ^{), (16}16 Sterrett-Hong EM, Crosby R, Johnson M, Mayo-Wilson LJ, Arroyo C, Machinga R, et al. Socio-ecological influences on HIV care engagement: perspectives of young black men who have sex with men living with HIV in the southern US. J Racial Ethn Health Disparities. 2021; 10(4): 1798-1808. https://doi.org/10.1007/s40615-022-01364-w
https://doi.org/10.1007/s40615-022-01364... ^{), (28}28 Grieb SM, Kerrigan D, Tepper V, Ellen J, Sibinga E. The clinic environment as a form of social support for adolescents and young adults living with HIV. AIDS Patient Care STDS. 2018; 32(5): 208-13. https://doi.org/10.1089/apc.2018.0012
https://doi.org/10.1089/apc.2018.0012... ^{), (29}29 Zgambo M, Arabiat D, Ireson D. Uptake of health services by youth living with HIV: a focused ethnography. Int Nurs Rev. 2021; 68(3): 299-307. https://doi.org/10.1111/inr.12638
https://doi.org/10.1111/inr.12638... . In line with other investigations²²22 Merrill KG, Campbell JC, Kennedy CE, Burke VM, Miti S, Frimpong C, et al. ‘So hurt and broken’: A qualitative study of experiences of violence and HIV outcomes among Zambian youth living with HIV. Glob Public Health. 2022; 17(3): 444-56. https://doi.org/10.1080/17441692.2020.1864749
https://doi.org/10.1080/17441692.2020.18... ^{), (29}29 Zgambo M, Arabiat D, Ireson D. Uptake of health services by youth living with HIV: a focused ethnography. Int Nurs Rev. 2021; 68(3): 299-307. https://doi.org/10.1111/inr.12638
https://doi.org/10.1111/inr.12638... , this research shows the need for diagnosis and ART to include psychosocial care. Studies show how the HIV diagnosis means an interruption in the plans of youths, requiring changes in their lifestyle and routine⁷7 Martinez J, Lemos D, Hosek S. Stressors and sources of support: the perceptions and experiences of newly diagnosed latino youth living with HIV. AIDS Patient Care STDS. 2012; 26(5): 281-90. https://doi.org/10.1089/apc.2011.0317
https://doi.org/10.1089/apc.2011.0317... and provoking a process of resignification of their own lives and the construction of new projects for their future³⁰30 Fortenberry JD, Martinez J, Rudy BJ, Monte D. Linkage to care for HIV-positive adolescents: a multisite study of the adolescent medicine trials units of the adolescent trials network. J Adolesc Health. 2012; 51(6): 551-6. https://doi.org/10.1016/j.jadohealth.2012.03.012
https://doi.org/10.1016/j.jadohealth.201... . This underscores the critical role of psychological care within healthcare services in addressing emotional and attitudinal aspects, as well as understanding the defensive and self-blaming mechanisms shaped by societal representations before diagnosis. This therapeutic space offers opportunities to explore feelings of guilt and self-punishment, serving as fertile ground for evolving social representations through the integration of scientific knowledge into common perceptions. In this study, psychological care emerges explicitly linked to healthcare services as nurturing spaces that support deeper introspection on life in the context of diagnosis, and in relationships such as love, family, and work. This perspective reiterates the core essence of healthcare, conceived hermeneutically as a collaborative process in constructing “projects of happiness.” This process unfolds within the clinical encounter, surpassing mere technical success in intervention (in this case, ART)³¹31 Ayres JRCM. Para compreender o sentido prático das ações de saúde: contribuições da hermenêutica filosófica. In: Ayres JRCM, organizador. Cuidado: trabalho e interação nas práticas de saúde. Rio de Janeiro: Cepesc, IMS/Uerj, Abrasco; 2009. p. 129-55..

All participants in this study, except for one young travesti from Salvador, used antiretroviral drugs and stressed the importance of psychosocial support at the time of diagnosis and beginning of treatment. However, adolescents and youth deemed access to and permanence in services as great challenges. The main barriers referred to concerns regarding their privacy and confidentiality and professionals’ hostile approach, all of which were experienced after the beginning of care in the specialized HIV/AIDS network. Thus, two distinct patterns of care experience in the interaction with professionals emerge: a welcoming disclosure of diagnosis (carried out within the scope of this research) and another that included these barriers at the beginning of treatment. Studies with youths living with HIV in other countries, such as China¹⁵15 Li H, Wei C, Tucker J, Kang D, Liao M, Holroyd E, et al. Barriers and facilitators of linkage to HIV care among HIV-infected young Chinese men who have sex with men: a qualitative study. BMC Health Serv Res. 2017; 17: 214. https://doi.org/10.1186/s12913-017-2158-7
https://doi.org/10.1186/s12913-017-2158-... , Malawi,³²32 Kip EC, Udedi M, Kulisewa K, Go VF, Gaynes BN. Stigma and mental health challenges among adolescents living with HIV in selected adolescent-specific antiretroviral therapy clinics in Zomba District, Malawi. BMC Pediatr. 2022; 22(1): 253. https://doi.org/10.1186/s12887-022-03292-4
https://doi.org/10.1186/s12887-022-03292... and South Africa³³33 Woollett N, Pahad S, Black V. ‘We need our own clinics’: Adolescents’ living with HIV recommendations for a responsive health system. PLoS One. 2021; 16(7): e0253984. https://doi.org/10.1371/journal.pone.0253984
https://doi.org/10.1371/journal.pone.025... , also highlight participants’ distrust and insecurity regarding secrecy and confidentiality in services due to professionals’ negative and hostile attitudes as the main barriers to their adherence to care. Other studies have found concerns regarding professionals²⁸28 Grieb SM, Kerrigan D, Tepper V, Ellen J, Sibinga E. The clinic environment as a form of social support for adolescents and young adults living with HIV. AIDS Patient Care STDS. 2018; 32(5): 208-13. https://doi.org/10.1089/apc.2018.0012
https://doi.org/10.1089/apc.2018.0012... being able to maintain confidentiality and the need to share the diagnosis in different services³⁰30 Fortenberry JD, Martinez J, Rudy BJ, Monte D. Linkage to care for HIV-positive adolescents: a multisite study of the adolescent medicine trials units of the adolescent trials network. J Adolesc Health. 2012; 51(6): 551-6. https://doi.org/10.1016/j.jadohealth.2012.03.012
https://doi.org/10.1016/j.jadohealth.201... . As in this study, other reports²⁹29 Zgambo M, Arabiat D, Ireson D. Uptake of health services by youth living with HIV: a focused ethnography. Int Nurs Rev. 2021; 68(3): 299-307. https://doi.org/10.1111/inr.12638
https://doi.org/10.1111/inr.12638... ^{), (34}34 Philbin MM, Tanner AE, DuVal A, Ellen J, Kapogiannis B, Fortenberry JD. Linking HIV-positive adolescents to care in 15 different clinics across the United States: creating solutions to address structural barriers for linkage to care. AIDS Care. 2014; 26(1): 12-9. https://doi.org/10.1080/09540121.2013.808730
https://doi.org/10.1080/09540121.2013.80... point to negative interactions with health teams in building this bond and caring for youths. Therefore, the shortcomings in health services that hinder care, as perceived by adolescent and young MSM and travestis, appear to resonate with the traditional barriers faced by adolescents and youths living with HIV in sexual health settings. Investing in health policies and enhancing the relationships between health teams and recently diagnosed adolescents and youths offer a promising approach to reshaping symbolisms and cultivating new social representations of HIV. These representations can advocate for rights and compassionate care, thereby mitigating processes of stigma and discrimination. A fresh perspective on addressing the HIV epidemic can align with the advancements in scientific innovations, treatment modalities, and overall care practices. This holistic approach aims to foster resilience and inclusivity within affected communities.

FINAL CONSIDERATIONS

The social representations of HIV in the care of recently diagnosed youths underscore the need to consider both the objective and subjective aspects of the health-disease-care continuum when formulating public policies for HIV prevention and treatment among adolescents and youth. Insufficient and often distorted information within social circles, schools, families, and digital media perpetuates social representations of HIV that continue to be strongly associated with stigmatizing and discriminatory notions of death, punishment, and promiscuity.

Furthermore, despite scientific and technological advancements, stigmas, tensions, and conflicts persist in the daily lives of young MSM and trans individuals living with HIV, who are still unfairly perceived as “promiscuous” or inherently “at risk”³⁵35 Silva LAV da, Duarte FM, Lima M. “Eu acho que a química entrou em reprovação”: relações afetivo-sexuais de homens jovens vivendo com HIV/aids e com carga viral indetectável. Sex, Salud Soc. 2020; (34): 25-45. https://doi.org/10.1590/1984-6487.sess.2020.34.03.a
https://doi.org/10.1590/1984-6487.sess.2... . Addressing these tensions and negative social representations necessitates research focused on caregiving and strategies for combating stigma and discrimination. This approach aims to foster new social representations that emphasize human rights and resilience in the face of vulnerabilities.

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