title: 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.
authors.affiliation: Human and Social Development, Human Sciences Research Council, Durban, South Africa; Africa Centre for Population Health, University of KwaZulu-Natal, Somkhele, South Africa; MRC/Developmental Pathways to Health Research Unit, School of Clinical Medicine, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa; Section of Child and Adolescent Psychiatry, Department of Psychiatry, University of Oxford, Oxford, UK.
authors.forename: Tamsen J
authors.initials: TJ
authors.lastname: Rochat
authors.affiliation: Africa Centre for Population Health, University of KwaZulu-Natal , Somkhele , South Africa.
authors.forename: Joanie
authors.initials: J
authors.lastname: Mitchell
authors.affiliation: Section of Child and Adolescent Psychiatry, Department of Psychiatry, University of Oxford, Oxford, UK; MRC/Wits Rural Public Health and Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa.
authors.forename: Alan
authors.initials: A
authors.lastname: Stein
authors.affiliation: Africa Centre for Population Health, University of KwaZulu-Natal, Somkhele, South Africa; School of Public Health, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa; DST-NRF Centre of Excellence in Human Development, University of Witwatersrand, Johannesburg, South Africa.
authors.forename: Ntombizodumo Brilliant
authors.initials: NB
authors.lastname: Mkwanazi
authors.affiliation: Africa Centre for Population Health, University of KwaZulu-Natal, Somkhele, South Africa; School of Public Health, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa; Institute of Health and Wellbeing and Royal Hospital for Sick Children, University of Glasgow, Glasgow, UK.
authors.forename: Ruth M
authors.initials: RM
authors.lastname: Bland
keywords: HIV disclosure; South Africa; children; conceptual framework; intervention