Disclosure of HIV/AIDS diagnosis to HIV-infected children in Thailand

BACKGROUND: With the availability of highly active antiretroviral therapy, more HIV-infected children have lived longer. Many children are at the age that they should know the diagnosis. AIM: To identify the prevalence and patterns of disclosure of HIV/AIDS diagnosis to HIV-infected children. METHODS: A cross-sectional study was conducted among 103 main care givers of HIV-infected children aged > or =6 years who received highly active antiretroviral therapy at Chiang Mai University and Sanpatong district hospitals, northern Thailand. RESULTS: One-third (30.1%) of the children knew their HIV/AIDS status at an average age of 9.2 years. The care givers' understanding of 'knowing' did not always mean that the children were told the name of 'HIV' or 'AIDS'. Many of those care givers (84.3%) who reported that the child did not know their diagnosis had inaccurately explained to the child that he or she had some kind of disease such as allergy, lung, or liver disease. The most common reason for non-disclosure was the fear that disclosure might have negative psychological consequences to the child (53.4%). Almost all (88.7%) agreed that they should tell the children their diagnosis in the future but half needed health-care providers to help them at the event. CONCLUSION: There is a need for the development of disclosure guide-lines and models for health-care providers and care givers as there was a high rate of inaccurate disclosure and, in addition, care givers expressed their need for assistance from health-care providers for the future disclosure.