Eliana Galano

Vulnerability, Human Rights, and Comprehensive Health Care Needs of Young People Living With HIV/AIDS

We sought to identify and understand the health care needs of young people living with HIV/AIDS, particularly in terms of their psychosocial well-being. We conducted a qualitative analysis of HIV-positive young people and their caregivers, focusing on the implications of an HIV diagnosis for health care needs. Stigma was a recurrent issue that arose in the interviews conducted with the respondents, and it was evident that youths had been denied many rights related to health. We concluded that young people living with HIV need comprehensive care based on a human rights approach. In this regard, we offer some practical recommendations for health programs.

A sexualidade de adolescentes vivendo com HIV: direitos e desafios para o cuidado

Sexuality and reproductive healthcare represent relevant issues for comprehensive care of HIV-positive adolescents. However, public policies and health services give this issue insufficient attention. The scope of this article is to assess how HIV-positive young people and teenagers cope with their sexuality, dating and the urge to have children and start a family. In a qualitative study, in-depth interviews were staged with 21 HIV-positive (contracted by vertical, sexual or intravenous transmission) teenagers and 13 caregivers of children and youths living in Sao Paulo and Santos. The interviews revealed the different ways teenagers cope with their sexuality and with the anxiety of HIV disclosure in this context. Lack of information about HIV prevention, lack of support and skills to cope with their sexuality were revealed in the reports. Furthermore, stigma and discrimination were the most frequently reported difficulties. The main challenges to be faced in Brazil in regard to this issue are discussed, especially the need to consider HIV-positive youth as entitled to sexual rights. Recommendations are also made for incorporating the issue into a humanized and comprehensive care approach for HIV-positive children and young people.

Family structure and adolescent sexual behavior in a poor area of Sao Paulo, Brazil

PURPOSE In Brazil, as elsewhere, behavior during adolescence can place young people at risk for serious medical and social problems, including sexually transmitted infections, unintended pregnancy, drugs, crime, and violence. Few studies internationally have examined the influence of family structure on risk behavior among low-income youths. METHODS This cross-sectional study included 296 young people in one of the poorest areas of São Paulo who were recruited through a vocational school and completed an anonymous, self-administered questionnaire. We examined associations between family structure and various risk behaviors. RESULTS Ages ranged from 13-24 years (82%, 15-18); 67% were of Afro-Brazilian ancestry, and 56% were female. Median family monthly income was about US

The International development of PROQOL-HCV: An instrument to assess the health-related quality of life of patients treated for Hepatitis C virus.

200. Less than half lived with both parents, and 14% lived with neither parent. Rates of many risk behaviors, including involvement in crime and violence, drug and alcohol use, and sexual risk, were lowest among those living with both parents, higher among those living with one parent, and highest among those living with neither parent. For example, 26% of females living with both parents, 37% with one parent, and 71% with neither parent were sexually active (p = .003). Family structure and a personal or parental history of drug or alcohol problems were significant independent predictors of sexual activity. CONCLUSIONS The presence of both parents is an important protective factor for Brazilian youth vulnerable to multiple risks. Prevention programs should explore ways to support parents to be present and involved in the lives of their adolescent children.

Entrevista com os familiares: um instrumento fundamental no planejamento da revelação diagnóstica do HIV/Aids para crianças e adolescentes

BackgroundHepatitis C virus (HCV) compromises Health-related Quality of Life (HRQL) with detriments to Physical, Mental and Social health domains. Treatment with interferon and ribavirin is associated with side effects which further impair HRQL. New treatments appear potent, effective and tolerable. However, Patient Reported Outcomes instruments that capture the impact on HRQL for people with hepatitis C are largely non-specific and will be needed in the new treatment era. Therefore, we developed a conceptually valid multidimensional model of HCV-specific quality of life and pilot survey instrument, the Patient Reported Outcome Quality of Life survey for HCV (PROQOL-HCV).MethodsHCV patients from France (n = 30), Brazil (n = 20) and Australia (n = 20) were interviewed to investigate HCV-HRQL issues raised in the scientific literature and by treatment specialists. Interviews were recorded, transcribed and translated into English and French.ResultsFifteen content dimensions were derived from the qualitative analysis, refined and fitted to four domains: (1) Physical Health included: fatigue, pain, sleep, sexual impairment and physical activity; (2) Mental Health: psychological distress, psychosocial impact, and cognition; (3) Social Health: support, stigma, social activity, substance use; (4) Treatment: management, side effects, and fear of treatment failure. The impact of some dimensions extended beyond their primary domain including: physical activity, cognition, sleep, sexual impairment, and the three treatment dimensions. A bank of 300 items was constructed to reflect patient reports and, following expert review, reduced to a 72-item pilot questionnaire.ConclusionWe present a conceptually valid multidimensional model of HCV-specific quality of life and the pilot survey instrument, PROQOL-HCV. The model is widely inclusive of the experience of hepatitis C and the first to include the treatment dimension.

Costs and benefits of secrecy: the dilemma experienced by adolescents seropositive for HIV

The scope of this study was to present the participation of caregivers in creating strategies for disclosure of their condition to HIV-positive children, as well as discussing the interventions that might contribute to overcoming the difficulties that commonly prevent family members from accepting this process. The participants included 23 caregivers of 18 patients referred for diagnosis disclosure, monitored at two pediatric AIDS units in the municipality of Sao Paulo, Brazil. This is a qualitative study and data were collected through semi-structured interviews. The results showed that legitimating reasons why caregivers are reluctant to disclose the diagnosis to the children, as well as their motivations, are interventions that contribute to reduce resistance, facilitating the acceptance of disclosure. The collaboration of caregivers has provided valuable insights for conducting the work, and has enabled the establishment of a receptive and supportive relationship minimizing inhibitions that could be harmful to the continuity of the process.

Revelação diagnóstica do HIV/Aids para crianças: um relato de experiência

ABSTRACT 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.

Diagnostic disclosure of HIV/Aids to children: an experience report

This is an experience report on the conduct and management of the process of revealing the diagnosis of children living with HIV/AIDS in two leading centers located in Sao Paulo, Brazil. The model used to share information about the disease and treatment in the pediatric population was initiated in 2003 and involves 5 steps: gathering patients unaware of their HIV status; referrals for psychological assessment; interviews with family members to plan the disclosure process; open diagnostic and monitoring after the disclosure. Experience has shown that after knowledge of the disease, the children participate and cooperate with treatment, parents feel relieved and professionals are comfortable during consults, to talk openly with young patients about the exams, clinical monitoring and treatment. A detailed description of the work may assist other services in developing actions so that the practice of diagnostic disclosure can be more effectively integrated in the context of the care of children living with HIV/AIDS.

Revelación diagnóstica del VIH/SIDA para Niños: un testimonio de experiencia

This is an experience report on the conduct and management of the process of revealing the diagnosis of children living with HIV/AIDS in two leading centers located in Sao Paulo, Brazil. The model used to share information about the disease and treatment in the pediatric population was initiated in 2003 and involves 5 steps: gathering patients unaware of their HIV status; referrals for psychological assessment; interviews with family members to plan the disclosure process; open diagnostic and monitoring after the disclosure. Experience has shown that after knowledge of the disease, the children participate and cooperate with treatment, parents feel relieved and professionals are comfortable during consults, to talk openly with young patients about the exams, clinical monitoring and treatment. A detailed description of the work may assist other services in developing actions so that the practice of diagnostic disclosure can be more effectively integrated in the context of the care of children living with HIV/AIDS.

P02-295 - Emotional aspects of transiting HIV-infected adolescents to an adult health care in the southeast Brazil: A new challenge

This is an experience report on the conduct and management of the process of revealing the diagnosis of children living with HIV/AIDS in two leading centers located in Sao Paulo, Brazil. The model used to share information about the disease and treatment in the pediatric population was initiated in 2003 and involves 5 steps: gathering patients unaware of their HIV status; referrals for psychological assessment; interviews with family members to plan the disclosure process; open diagnostic and monitoring after the disclosure. Experience has shown that after knowledge of the disease, the children participate and cooperate with treatment, parents feel relieved and professionals are comfortable during consults, to talk openly with young patients about the exams, clinical monitoring and treatment. A detailed description of the work may assist other services in developing actions so that the practice of diagnostic disclosure can be more effectively integrated in the context of the care of children living with HIV/AIDS.