Assessing the Lives of Adolescents born with HIV in Thailand: A Coupled Life-Event History Approach to Adolescents and their Caregivers

Children born with HIV infection who receive antiretroviral therapy have an increasingly high survival rate and are now entering adolescence. However, reports suggest higher rates of mortality in this age group. The objective of the “Teenagers Living with Antiretrovirals” (TEEWA) study is to assess the situation and needs of these adolescents. Adolescents born with HIV and receiving antiretroviral treatment, living in families or in orphanages, are recruited in 18 hospitals across Thailand. Self-administered questionnaires completed by the adolescents are linked with face-to-face interviews (life-event history approach) of their caregivers. The adolescent questionnaires explore household composition, school/employment, perceived health, reproductive health, relationships with adults/peers, leisure activities and plans for the future. Since some adolescents may not be aware of their HIV status, the self-administered questionnaire does not mention HIV or AIDS. The caregiver questionnaires assess the adolescents' family history, medical/HIV history, disclosure of HIV status, discrimination and household economic situation. A control group of adolescents randomly selected in the general population (matched on sex, age and residence with the HIV-infected children), and their caregivers, is also interviewed using the same approach. As of January 2012, 454 adolescents born with HIV, living in family settings and their caregivers have been interviewed. Preliminary results indicate that most adolescents have lost one (40.5%) or both parents (45.2%) suggesting complicated and potentially disruptive childhood histories and that the majority of caregivers (47.3%) are grand-parents. The survey design, its implementation and first results on the adolescents' family and living circumstances will be presented.