Stigma and discrimination against adolescents living with perinatal HIV in Thailand: caregivers' perceptions

Background: Thailand has been particularly affected by the HIV epidemic in the middle of the years 1990s. Thousands of children living with perinatal HIV have been exposed to HIV-related stigma/discrimination, but its frequency and expressions have been little studied. Our objectives were to assess, among adolescents living with perinatal HIV, the prevalence of stigma/discrimination, the factors associated with it and its expressions. Methods: All caregivers of adolescents aged 12-19 years living with perinatal HIV and receiving antiretrovirals in 20 hospitals throughout Thailand were invited to complete a face-to-face questionnaire on their adolescent's life, and to report their adolescents' experiences of stigma/discrimination. Stigma/discrimination as perceived by the caregivers was analyzed using both quantitative and qualitative approaches. Results: A total of 712 adolescents living with perinatal HIV and their caregivers were interviewed as part of the TEEWA study between March 2010 and November 2012. Of the 572 adolescents living in family settings, 464 had their HIV-status known in the community. Among them, the overall stigma/discrimination prevalence was 46%. The multivariable analysis showed that the risk of being stigmatized was nearly 3 times higher in the northeast region (OR: 2.93, 95%CI: 1.36-6.45) and when having a low intellectual ability (OR: 3.35, 95%CI: 1.66-7.10). It was nearly twice higher in case of conflicts with caregivers (OR: 1.81, 95%CI: 1.17-2.79) and when caregivers were members of a support group (OR: 2.28, 95%CI: 1.48-3.53), while having a BMI >18.5 was associated with a lower risk of stigma/discrimination (OR: 0.61, 95%CI: 0.37-0.98). Expressions of stigma/discrimination included bullying, social isolation, behavioral discrimination and public disclosure. Consequences of stigma/discriminations included voluntary withdrawal from school, painful awareness of HIV status, marginalization from the community, and separation of drinks and food. Conclusion: We found that the prevalence of stigma/discrimination among adolescents living with perinatal HIV was high. Despite existing policies, stigma eradication remains necessary to normalize their life as they grow into adulthood and may face the consequences of past/current discrimination in terms of access to university studies or occupation, at work, in the community or in their romantic life.