Worldwide about 2.5 million children younger than 15 years of age are living with HIV, and more than 2.3 million of them live in sub-Saharan Africa. Antiretroviral therapy has reduced mortality among HIV-infected children, and as they survive into adolescence, disclosing to them their diagnosis has emerged as a difficult issue, with many adolescents unaware of their diagnosis. There is a need to build an empirical foundation for strategies to appropriately inform infected children of their diagnosis, particularly in South Africa, which has the largest number of HIV-positive people in the world. As a step toward developing such strategies, we conducted a study in Eastern Cape Province, South Africa to identify beliefs about disclosing HIV diagnosis to HIV-infected children among caregivers, health-care providers, and HIV-positive children who knew their diagnosis. We implemented 7 focus groups with 80 participants: 51 caregivers in 4 groups, 24 health-care providers in 2 groups, and 5 HIV-positive children in 1 group. We found that although the participants believed that children from age 5 years should begin to learn about their illness, with full disclosure by age 12, they suggested that many caregivers fail to fully inform their children. The participants said that the primary caregiver was the best person to disclose. The main reasons cited for failing to disclose were (a) lack of knowledge about HIV and its treatment, (b) the concern that the children might react negatively, and (c) the fear that the children might inappropriately disclose to others, which would occasion gossip, stigmatization, and discrimination towards them and the family. We discuss the implications for developing interventions to help caregivers appropriately disclose HIV status to HIV-infected children and, more generally, communicate effectively with the children to improve their health outcomes.
When people know their HIV serostatus, they can take steps to manage their health and the risk of transmitting HIV to others. Mounting evidence indicates that caregivers often do not disclose to HIV-positive children that the children are living with HIV, but little is known about the modifiable determinants of pediatric HIV disclosure. The present study examined theory-of-planned-behavior predictors of the intention to disclose to children their HIV diagnosis. The participants were 100 caregivers of HIV-positive children in Eastern Cape Province, South Africa. Proportional-odds logistic regression analysis revealed that normative support for disclosure and caregiver-child communication predicted the intention to disclose, whereas behavioral beliefs regarding the consequences of disclosing and self-efficacy to disclose did not. The results suggest that interventions to increase pediatric HIV disclosure in South Africa should help caregivers enlist support for disclosure among important referents and improve communication with their HIV-infected children.
Retention of participants in clinical trials is a central concern of HIV/STI behavioral researchers and research sponsors. This article describes the strategies used for addressing the challenges in retaining South African adolescents for a 54-month longitudinal study. The objective of the South African adolescent health promotion long-term follow-up trial was to test the sustainability of the effects of an HIV/STI risk reduction intervention, “Let Us Protect Our Future,” on young adolescents as they aged into middle and late adolescence. Inaccurate contact information, invalid mobile telephone numbers, lack of transportation, transitory family addresses, and family relocation were among the challenges to retaining participants. Despite a significant gap in time of 36 months between the main trial and the long-term follow-up study, 99.2% of 1,057 participants were retained. Solutions used for retaining the adolescents are discussed with suggestions offered for retaining adolescents in longitudinal HIV/STI prevention clinical trials in low resource countries.
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