Abstract
Caregivers of HIV-positive children were interviewed in the Mbarara and Isingiro districts of Uganda to identify current trends in practices related to HIV testing and the disclosure of HIV status to the child. A total of 28 caregivers of at least one HIV-positive child participated in semi-structured interviews exploring when and why they tested the child for HIV, when the child was informed of their positive status, and what the caregiver did to prepare themselves and the child for status disclosure. For a majority (96%) of respondents, the decision to test the child for HIV was due to existing illness in either the child or a relative. Other common themes identified included the existence of stigma in the caregivers’ communities and doubt that the children truly understood what was being explained to them when their status was disclosed. Most (65%) children were informed of their HIV status between the ages of 5 and 9, with the mean age of disclosure occurring at the age of 7. General provision of HIV information typically began at the same age as disclosure, and as many as two thirds (64%) of the caregivers sought advice from an HIV counsellor prior to disclosure. How a caregiver chose to prepare themselves and the child did not affect the caregiver’s perception of whether the disclosure experience was beneficial or not. These findings suggest that the HIV disclosure experience in Mbarara and Isingiro districts differs from current guidelines, especially with respect to age of disclosure, how caregivers prepare themselves and the child, and approaching disclosure as an ongoing process. The doubts expressed by caregivers regarding the child’s level of HIV understanding following the disclosure experience suggest the children may be insufficiently prepared at the time of the initial disclosure event. The findings also suggest that examining the content of pre-disclosure counselling and HIV education, and how health care professionals are trained to facilitate the disclosure process as important avenues for further research.
Highlights
As the global HIV epidemic enters its fourth decade, significant advances have been made in HIV prevention and treatment in the developing world
The Mbarara and Isingiro districts in western Uganda are attractive sites in which to conduct HIV research: their HIV prevalence has historically been greater than the nation overall and has an HIV prevalence most recently estimated at 8.0% [5] and they possesses a variety of both remote rural and municipal settlements
The second criteria served two purposes; it ensured that participating caregivers had experienced the disclosure experience at least once, while enabling caregivers of multiple children to discuss the experiences they had with children who may not know their status
Summary
As the global HIV epidemic enters its fourth decade, significant advances have been made in HIV prevention and treatment in the developing world. While sub-Saharan Africa remains the hardest-hit region (accounting for the majority of HIV-related deaths, new HIV infections, and greatest HIV prevalence worldwide), the outlook for the area is beginning to show signs of improvement [1]. The hardest-hit of the Sub-Saharan African nations can have HIV prevalence rates as high as 20%, with significantly higher rates of HIV incidence, mother to child transmission, and child mortality due to AIDS [1]. For this reason, the challenges encountered by Uganda today may likely be encountered in the future by other nations as their own HIV epidemics stabilize. The Mbarara and Isingiro districts in western Uganda are attractive sites in which to conduct HIV research: their HIV prevalence has historically been greater than the nation overall and has an HIV prevalence most recently estimated at 8.0% [5] and they possesses a variety of both remote rural and municipal settlements
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