Barcelona 2013
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| Abstract #199 - Disclosure | ||||
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Session: 37.6: Disclosure (Parallel) on Tuesday @ 14.30-16.00 in Mirador Chaired by George Palattiyil, Ashraf Kagee Authors: Presenting Author: Dr Sophie Le Coeur - Program for HIV Prevention and Treatment, Thailand |
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| Additional Authors: Mr. Michael Olaogbebikan, | ||||
| Aim: Children born with HIV infection receiving antiretroviral treatment (ART) are now entering adolescence and adulthood. They are reaching an age at which they may wish to become sexually active, so they need to be aware of their HIV status. However, the disclosure process can be traumatic for children, and there is no consensus today about who should disclose this information, at what age, and how. The objective of this analysis is to describe the disclosure process before adulthood among children born with HIV. | ||||
| Method / Issue: Data derive from the TEEWA (Teens living with antiretrovirals) survey in Thailand. All adolescents born with HIV and receiving ART were interviewed in 20 hospitals across Thailand. A self-administered questionnaire was completed by the adolescents, not mentioning HIV since they may not yet have been informed. In addition, for adolescents living with their family, caregivers were interviewed about the adolescents family and medical/HIV histories. Caregivers were also asked about the disclosure process: age and circumstances of disclosure, who provided the information and the reason for disclosure at this particular time, and the adolescents reactions. | ||||
| Results / Comments: We provide the results for the 576 adolescents living with their family. Their median age was 14 years with 24.1% of them having lost their mother, 17.7% their father and 42.9% both. Grandparents were most often the caregivers (37.5%), followed by the parents (32.4%) and other relatives (31.0%). 496 (86.3%) caregivers reported that the adolescents in their charge knew that they were HIV-positive, 60 (10.4%) reported that they did not know and in 19 cases (3.3%) they were not sure. A formal disclosure had been made for 351 (61.0%) of the adolescents, while the others had found out as they grew up. The median age at disclosure was 10.5 years (IQR:9-12) and the median time from diagnosis to disclosure was 4 years (26.8% the same year, 22.1% after 1-4 years, 34.1% after 5-9 years and 34.1% after 10 years. The timing and circumstances of disclosure can be explored in detail since the answers range from The child was not formally told but found out by him/herself to The doctor thought it was the right time. The adolescents were most often informed of their status by the medical staff (35.6%), the parents (26.5%), the grand-parents (20.5%), or other relatives (14.0%). Caregivers reported that, following disclosure, children experienced sadness or depression (15.1%), anger (1.4%), or were relieved to know (3.1%). Finally 76.1% of caregivers reported an improvement in treatment adherence after disclosure. | ||||
| Discussion: Contrary to adults who are rapidly informed of their test results by the medical staff, children who are born with HIV rarely learn their HIV result at the time of diagnosis. Parents may be reluctant to disclose an HIV positive status to their children because of guilt, but other caregivers are also uncomfortable to inform them. The majority of adolescents know about their HIV status but the process is often progressive. Disclosure appears to have positive consequences in terms of adherence, while adverse consequences of disclosure are uncommon. | ||||
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