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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.
In the early stages of the development of this intervention, we used the UK Medical Research Council guidelines for developing complex interventions (27) and undertook phased research work to fully develop and test our intervention model. The design was informed by an extensive review of existing evidence and this was followed by piloting and refinement of the intervention with community consultations. Our review on maternal HIV disclosure to HIV-uninfected children is published elsewhere (28) and summarizes 58 studies, including two literature reviews (11, 12) and a recent systematic review (13). In addition, we reviewed the recent guidelines from the World Health Organization on HIV disclosure to children (29), which included the available evidence on maternal disclosure to HIV-uninfected children of primary school-age, and highlighted the lack of studies in this area. Following this review of the evidence, and given the lack of intervention models available for adaptation, we undertook the development of a clear conceptual framework that would guide intervention design. First, we identified the risk pathways outlined in the literature and formative work; second, we identified potential modifiable intervention targets to establish an intervention pathway that could disrupt these risks. Finally, we designed sessional content that we hypothesized would result in the changes sought through maternal HIV disclosure. Importantly, the conceptual framework has been informed not only by what we know about how HIV impacts on parenting behavior and child outcomes but also our understanding of parenting capacities and stressors in the context of other parental terminal illnesses. The development of the model has been influenced by family resilience literature and the socio-cultural context within which the intervention was to be tested and delivered. Our intervention targets HIV-infected mothers (as opposed to fathers or other caregivers) for pragmatic reasons, as the vast majority of children are resident with, and cared for, by their biological mothers in our context (30). The intervention is, however, highly adaptable to use with fathers and other caregivers, as outlined in the section on the intervention principles.
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