RESUMO

This study explored the experiences of the first generation of adolescents who acquired HIV through vertical transmission when disclosing their diagnosis to friends and romantic partners. The study sample was selected by convenience, with 20 patients (13-20 years old) participating in a qualitative investigation using individual interviews (language: Portuguese; duration: 45 minutes). The participants were followed in specialized clinics for the treatment of pediatric AIDS in São Paulo, Brazil. The results suggest that families who live with HIV tend to keep it a secret, and such behavior is learned and accepted unquestioningly as natural. Respect for privacy and the fear of rejection, coupled with the belief that information about their disease will be spread, are the main beliefs with which participants justify their secrecy. In terms of romantic relationships, adolescents were aware that their HIV status should at some point be shared with current or future sexual partners. However, the decision to reveal an HIV diagnosis in romantic relationships is permeated by anxieties, uncertainties about the right time, and fear of abandonment. In any case, telling the truth requires trust, guarantees of the other's love, and, in some cases, probing romantic partners beforehand to learn their perceptions about the disease. Participants who had experiences disclosing their HIV status shared positive and negative results, including emotional support, acceptance, and understanding, along with ostracism, discrimination, and abandonment by family members. The findings of this paper reinforce the challenges of revealing an HIV diagnosis to third parties. It requires understanding the meaning and importance of the secret for each patient, along with the conflict between the right to confidentiality and the responsibility of treating others exposed to the disease. All these aspects should be discussed extensively with this population and incorporated into clinical practice

Assuntos

RESUMO

This study explored the experiences of the first generation of adolescents who acquired HIV through vertical transmission when disclosing their diagnosis to friends and romantic partners. The study sample was selected by convenience, with 20 patients (13-20 years old) participating in a qualitative investigation using individual interviews (language: Portuguese; duration: 45 minutes). The participants were followed in specialized clinics for the treatment of pediatric AIDS in São Paulo, Brazil. The results suggest that families who live with HIV tend to keep it a secret, and such behavior is learned and accepted unquestioningly as natural. Respect for privacy and the fear of rejection, coupled with the belief that information about their disease will be spread, are the main beliefs with which participants justify their secrecy. In terms of romantic relationships, adolescents were aware that their HIV status should at some point be shared with current or future sexual partners. However, the decision to reveal an HIV diagnosis in romantic relationships is permeated by anxieties, uncertainties about the right time, and fear of abandonment. In any case, telling the truth requires trust, guarantees of the other's love, and, in some cases, probing romantic partners beforehand to learn their perceptions about the disease. Participants who had experiences disclosing their HIV status shared positive and negative results, including emotional support, acceptance, and understanding, along with ostracism, discrimination, and abandonment by family members. The findings of this paper reinforce the challenges of revealing an HIV diagnosis to third parties. It requires understanding the meaning and importance of the secret for each patient, along with the conflict between the right to confidentiality and the responsibility of treating others exposed to the disease. All these aspects should be discussed extensively with this population and incorporated into clinical practice.

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RESUMO

PURPOSE: Antiretroviral therapy medication adherence is a complex phenomenon influenced by multiple factors. This study examines its evolution and predictors among perinatally HIV-infected youths in São Paulo, Brazil. METHODS: During a 1-year longitudinal cohort study, perinatally HIV-infected youths aged 13-21 years taking antiretroviral therapy were recruited in hospitals and HIV/AIDS reference centers. Data were collected at baseline and after 12 months. Variables assessed were adherence, self-efficacy regarding medication intake, social support, stress level, depression, CD4 cell count, viral load, and symptoms. Adherence was defined as taking ≥95% of prescribed HIV medication in the past 7 days. Generalized estimating equation and analysis of variance methods were used. RESULTS: A total of 268 adolescents participated in the study (59% female; mean age of 16 years). At baseline, 63.06% of the sample was adherent to their HIV medication, and 52.99% had an undetectable viral load. All participants, regardless of adherence, reported: low levels of stress and symptoms of depression; high perception of medication self-efficacy and social support; and a mean of 6.8 symptoms related to their HIV medication. Predictors of adherence were: high perception of medication self-efficacy (odds ratio = 2.81; 95% confidence interval: 1.94-4.05) and low number of reported medication side effects (odds ratio = .97; 95% confidence interval: .95-.99]. Between baseline and follow-up, 49.6% remained adherent, 22.3% remained nonadherent, and the adherence level changed over time for 28.2%. CONCLUSIONS: These findings suggest the need to develop interventions to enhance self-efficacy toward medication and to help youth better manage HIV medication symptoms.

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Objective: Explore the meanings attributed by young individuals about "living as an adolescent with HIV" in a group of patients that acquired the infection at birth and the elements involved with the adherence to antiretroviral treatment. Methods: Qualitative study, involving 20 subjects (aged 13-20 years), followed at services specialized in the treatment of pediatric AIDS in São Paulo, Brazil. Semi-structured interviews were carried out of which script consisted of questions about their personal histories, experiences and difficulties they must face while living with HIV/AIDS. Results: Being "normal" and "different" were central issues voiced by the participants. However, a normal life situation is guaranteed by being responsible with one's health, the condition that the diagnosis be kept secret and concerns about HIV transmission and dissemination to a sexual partner. The answers about treatment show that adherence is a dynamic process and involves moments of greater or lesser interest in relation to care for one's health. The adolescents have plans and projects and although HIV is considered a stressor, positive perspectives for the future prevailed. Conclusions: To live as an adolescent with HIV involves subtle dimensions that need to be recognized and legitimized by professionals who follow the trajectory of these young individuals. It is necessary to allow a space in which the adolescents can reflect and find support regarding issues related to the construction of their sexuality and care of one's own body.

Objetivo: Explorar os significados atribuídos pelos jovens a "viver a adolescência com o HIV" em um grupo de pacientes que adquiriu a infecção ao nascimento e os elementos implicados na adesão ao tratamento antirretroviral. Métodos: Pesquisa de natureza qualitativa, com 20 sujeitos (13 a 20 anos), acompanhados em serviços especializados no tratamento da Aids pediátrica em São Paulo, Brasil. Foram feitas entrevistas semidirigidas cujo roteiro foi composto por questões sobre suas histórias pessoais, dificuldades e experiências que enfrentam diante da infecção pelo HIV/Aids. Resultados: Ser "normal" e "diferente" foram questões centrais no discurso dos participantes. Entretanto, a condição de uma vida normal é garantida mediante a responsabilidade com a saúde, a ressalva de que seja mantido o segredo do diagnóstico e as preocupações com a transmissão do vírus e divulgação do HIV ao parceiro sexual. As respostas sobre o tratamento apontam que a adesão é um processo dinâmico e envolve momentos de maior ou menor interesse em relação aos cuidados com a saúde. Os adolescentes têm planos e projetos e, apesar de o HIV ser considerado um agente estressor, prevaleceram perspectivas positivas diante do futuro. Conclusões: Viver a adolescência com o HIV envolve dimensões delicadas, que necessitam ser reconhecidas e legitimadas pelos profissionais que acompanham a trajetória desses jovens. Trata-se de possibilitar um espaço no qual o adolescente possa refletir e encontrar apoio para as questões relacionadas à construção de sua sexualidade e cuidados com seu próprio corpo.

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RESUMO

OBJECTIVE: Explore the meanings attributed by young individuals about "living as an adolescent with HIV" in a group of patients that acquired the infection at birth and the elements involved with the adherence to antiretroviral treatment. METHODS: Qualitative study, involving 20 subjects (aged 13-20 years), followed at services specialized in the treatment of pediatric Aids in São Paulo, Brazil. Semi-structured interviews were carried out of which script consisted of questions about their personal histories, experiences and difficulties they must face while living with HIV/Aids. RESULTS: Being "normal" and "different" were central issues voiced by the participants. However, a normal life situation is guaranteed by being responsible with one's health, the condition that the diagnosis be kept secret and concerns about HIV transmission and dissemination to a sexual partner. The answers about treatment show that adherence is a dynamic process and involves moments of greater or lesser interest in relation to care for one's health. The adolescents have plans and projects and although HIV is considered a stressor, positive perspectives for the future prevailed. CONCLUSIONS: To live as an adolescent with HIV involves subtle dimensions that need to be recognized and legitimized by professionals who follow the trajectory of these young individuals. It is necessary to allow a space in which the adolescents can reflect and find support regarding issues related to the construction of their sexuality and care of one's own body.

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