Abstract
Advances in access to HIV prevention and treatment have reduced vertical transmission of HIV, with most children born to HIV-infected parents being HIV-uninfected themselves. A major challenge that HIV-infected parents face is disclosure of their HIV status to their predominantly HIV-uninfected children. Their children enter middle childhood and early adolescence facing many challenges associated with parental illness and hospitalization, often exacerbated by stigma and a lack of access to health education and support. Increasingly, evidence suggests that primary school-aged children have the developmental capacity to grasp concepts of health and illness, including HIV, and that in the absence of parent-led communication and education about these issues, HIV-exposed children may be at increased risk of psychological and social problems. The Amagugu intervention is a six-session home-based intervention, delivered by lay counselors, which aims to increase parenting capacity to disclose their HIV status and offer health education to their primary school-aged children. The intervention includes information and activities on disclosure, health care engagement, and custody planning. An uncontrolled pre–post-evaluation study with 281 families showed that the intervention was feasible, acceptable, and effective in increasing maternal disclosure. The aim of this paper is to describe the conceptual model of the Amagugu intervention, as developed post-evaluation, showing the proposed pathways of risk that Amagugu aims to disrupt through its intervention targets, mechanisms, and activities; and to present a summary of results from the large-scale evaluation study of Amagugu to demonstrate the acceptability and feasibility of the intervention model. This relatively low-intensity home-based intervention led to: increased HIV disclosure to children, improvements in mental health for mother and child, and improved health care engagement and custody planning for the child. The intervention model demonstrates the potential for disclosure interventions to include pre-adolescent HIV education and prevention for primary school-aged children.
Highlights
Children living in Southern Africa are rarely left unaffected by the HIV epidemic [1]
Through the results of the Amagugu intervention, we provide evidence to support our conceptual and intervention model
We have demonstrated that children in this context have the capacity to understand and engage with the concept of HIV as a disease from a young age
Summary
Children living in Southern Africa are rarely left unaffected by the HIV epidemic [1]. A growing body of evidence suggests that HIV-exposed children face a range of risk factors (parental ill health, hospitalization, and possible death and loss), which impact negatively on their psychological well-being [6, 7]. This presents longer-term challenges for the ongoing care and support of HIV-infected parents and their largely HIV-uninfected children over the family lifespan [8,9,10]. An important opportunity exists to provide and empower HIVinfected parents with the skills and capacity to educate their children about health (including HIV); to teach their children about HIV prevention and the health services available to them; and to actively plan for their child’s future, all of which have been shown to improve children’s outcomes in the literature outside the context of HIV
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