Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil
Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil
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DOI：
10.1016/j.socscimed.2005.07.006
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发表时间：
2006-03-01
影响因子：
5.4
通讯作者：
Castro, A
中科院分区：
文献类型：
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作者：
Abadía-Barrero, CE;Castro, A
本研究描述和概念化的经验，在一组艾滋病毒感染儿童生活在圣保罗，巴西的耻辱，并评估获得高效抗逆转录病毒治疗（HAART）的艾滋病的社会过程中的影响，并在儿童的耻辱的经验。通过1999年至2001年在圣保罗进行的民族志研究，对50名1-15岁感染艾滋病毒或受艾滋病毒影响的儿童的生活轨迹进行了研究。资料收集通过参与观察和半结构化的非正式访谈，并使用疾病经验和社会不平等的社会理论进行分析。我们的研究结果表明，艾滋病相关的耻辱发生在复杂的歧视过程中，随着儿童进入青春期而发生变化。我们发现，以贫困、种族主义和社会地位、性别和年龄不平等为形式的结构性暴力加剧了儿童的耻辱感。我们还描述了如何获得HAART改变儿童的生活经验，减少耻辱，并带来了新的挑战，艾滋病护理，如青少年的性行为和治疗依从性。基于这些结果，我们提出结构性暴力的框架来研究耻辱，并认为，干预措施，以减少耻辱，只针对艾滋病毒感染者的看法和态度是有限的。相反，在巴西，普及高效抗逆转录病毒疗法是一项减少耻辱感的有力干预措施，因为它将艾滋病从一种使人衰弱和致命的疾病转变为一种慢性和可控制的疾病，属于确保公民权利的更广泛机制，并减少在获得保健方面的社会不平等。(c)2005爱思唯尔有限公司保留所有权利。
This study describes and conceptualizes the experiences of stigma in a group of children living with HIV in Sao Paulo, Brazil, and evaluates the impact of access to highly active antiretroviral therapy (HAART) over the social course of AIDS and over the children's experiences of stigma. Through ethnographic research in Sao Paulo from 1999 to 2001, the life trajectories of 50 children ages 1-15 living with or affected by HIV were studied. Data were collected via participant observation and semi-structured informal interviews and analyzed using social theories on illness experience and social inequality. Our results demonstrate that AIDS-related stigma occurs within complex discrimination processes that change as children reach adolescence. We found that structural violence in the forms of poverty, racism, and inequalities in social status, gender, and age fuels children's experiences of stigma. We also describe how access to HAART changes the lived experience of children, reduces stigma, and brings new challenges in AIDS care such as adolescents' sexuality and treatment adherence. Based on these results, we propose structural violence as the framework to study stigma and argue that interventions to reduce stigma that solely target the perception and attitudes toward people living with HIV are limited. In contrast universal access to HAART in Brazil is a powerful intervention that reduces stigma, in that it transforms AIDS from a debilitating and fatal disease to a chronic and manageable one, belongs to a broader mechanism to assure citizens' rights, and reduces social inequalities in access to health care. (c) 2005 Elsevier Ltd. All rights reserved.