The Amagugu Intervention: A Conceptual Framework for Increasing HIV Disclosure and Parent-Led Communication about Health among HIV-Infected Parents with HIV-Uninfected Primary School-Aged Children

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.

Communication about HIV and death: Maternal reports of primary school-aged children's questions after maternal HIV disclosure in rural South Africa

“…The content and intervention approach (Rochat et al., 2013), and the conceptual framework (Rochat et al., 2016), have been described elsewhere and are summarised in Supplementary Fig. S1.…”

“…The conceptual framework of the intervention is described in open access format elsewhere (Rochat et al., 2016) and includes a focus on increasing parent-child communication about HIV (generally, and through parental HIV disclosure) and assisting mothers to prepare for periods of illness. Mothers were encouraged to make either full (using the words ‘HIV’) or partial (using the word ‘virus’) disclosures (Qiao et al., 2013).…”

The Amagugu intervention for disclosure of maternal HIV to uninfected primary school-aged children in South Africa: a randomised controlled trial

“…4 While parents often avoid disclosure about HIV in an effort to protect children, 6,16 by primary school-age children are likely to be aware of parental HIV, particularly in epidemic areas. 12,16,19 Rates of disclosure in the Amagugu intervention were higher than those recorded in other research across the globe, including in Africa: Uganda (50%); Asia: Thailand (35%); North America: Canada (31%) and Europe (11%). Likewise, participants were willing to disclose to children at younger ages than has generally evidenced in LMIC literature.…”

“…24,25 The primary and secondary outcomes of this trial suggest that without the benefit of an intervention which actively encourages parents to deal with communication about HIV, health education and care planning, the rates of these remain low, which is concerning since the absence of these are known to confer risks. 5,19 We found that enhanced standard of care mothers were more likely to disclose to girls than boys, 6,7 possibly linked to expectations that girls will assist with caregiving during illness.…”

Psychological morbidity and parenting stress in mothers of primary school children by timing of acquisition of HIV infection: a longitudinal cohort study in rural South Africa

“…Adherence to ART, 24 support for breastfeeding, 55 such as that delivered by lay counsellors VTS, 35 and providing child stimulation, such as is provided by lay professionals in the WHO Child Care for Development, may be particularly suited to the early years of life. 56 In later years, mothers may face challenges related to periods of illness often coinciding with middle and later childhood where support for parent-child communication about HIV and HIV disclosure may then become particularly salient, 13,57 likewise successful interventions have been documented using lay counsellor home visiting models. 19,58 We show, for the first time in a Southern African population of parents of primary school-aged children, that parenting stress (above the clinical threshold) rather than depression or anxiety, contributes most to psychological distress in all mothers.…”