Ground breaking research led by a team of South African scientists proves that, given the right support, HIV-positive parents will disclose their status to their primary school aged children. This has enormous potential for protecting children’s health in the long term.
In a rigorous randomised control trial, researchers tested a lay-counsellor guided disclosure intervention, called Amagugu, with 428 HIV positive mothers. They found the intervention significantly increased maternal HIV disclosure to children aged six to 10 years. The intervention also led to important benefits including increased health education, custody planning and improvements in the parent-child relationship.
The trial, funded by NIH through the Eunice Kennedy Shriver National Institute of Child Health and Human Development, signals an important milestone for South African-led psychological research aimed at addressing the challenges faced by HIV infected parents raising HIV uninfected children. This is the first trial testing a parental HIV disclosure intervention to show positive outcomes on the African continent.
The research, led by Dr Tamsen Rochat from the Human Sciences Research Council and conducted at the Africa Health Research Institute in KwaZulu-Natal, South Africa, is published in the September issue of the prestigious international public health journal, The Lancet HIV.
Main finding: The trial shows that the Amagugu intervention has efficacy to increase maternal disclosure of HIV to primary school aged children almost tenfold (aOR 9.88 p<0.001). Mothers in the intervention arm had significantly increased rates of disclosure, and disclosed in a much shorter period of time compared to mothers in the control arm of the study.
Additional benefits: That disclosure happened at higher rates and happened quickly is important, as this resulted in the intervention also leading to substantially increased rates of healthcare engagement and health promotion with children.
Other highlights from the study include:
– Mothers in the Amagugu intervention arm were 27 times more likely (p<0.001) to take their child to a HIV-related healthcare visit
– Mothers were five times more likely to develop a care plan for their child in preparation of periods of HIV related illness
– Mothers in the intervention were almost three times more likely to report that that they had discussed their care plan with their child, and were twice as likely to take steps to appoint a legal guardian in the event of their death
– Mothers in the intervention also reported significant improvements in the quality of the parent-child relationship.
Lead author, Dr Tamsen Rochat said: “South Africa has the largest and most successful HIV treatment programme in the world. Amagugu is a great example of how South African researchers can innovate and lead on much needed psychological research aimed at improving the outcomes of HIV infected parents living on treatment, and in providing education to young children about preventing HIV, in an HIV epidemic context where their risk of becoming HIV infected as they reach adolescence is high. The epidemic is evolving, parents are living longer on treatment, and given the success of HIV prevention programmes in pregnancy these parents are raising predominantly HIV uninfected children. We need to address and respond to the parenting needs of this rapidly growing population. Supporting parents to communicate and educate their children about HIV is central to that.”
Senior author, Dr Ruth Bland, from Glasgow University, said: “There is great potential to deliver Amagugu at a larger scale because you are investing in something that you have shown works, using the most rigorous scientific methods. While the question remains whether Amagugu will show effectiveness at a larger scale, the national Department of Health now has robust evidence to support this additional investment in children and families, with a very good chance of success.”
The publication is freely available to researchers in 127 low and middle-income countries on The Lancet HIV website.
For media enquiries:
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A small selection of the materials developed for Amagugu lay-counsellors and participants are available here. Please credit Len Sac and John Bertram.
Web-ready video clips are available for download here. Broadcast quality pre-recorded video and sound clips are available on request.
About the Amagugu model: Amagugu takes a skills building training approach to empowering parents and caregivers to deal with HIV through more direct communication about HIV in the family and with children. Lay counsellors provide mothers with six structured home-based counselling sessions which include training on child friendly activities using age appropriate language about health and HIV. Tools include games and storybooks and the counsellors help mothers to prepare for difficult questions children might ask. Preparation and practice are central to mothers providing a good disclosure experience for their children. The intervention was flexible enough for mothers to adjust content to suit their personal circumstances, level of readiness and family needs. A key principle of Amagugu is that counsellors do not intervene directly with children; instead following training mothers lead activities with their children. This is critically important for ensuring skills transference and sustaining behaviour change, because the purpose of intervening is to strengthen the parent-child relationship and to increase communication about HIV and health in the home. To learn more about the Amagugu intervention, read about the conceptual framework of the intervention here.
What makes Amagugu feasible: The intervention was carefully designed in keeping with the limited resources available within health systems. Amagugu has been developed in a ‘train the trainer’ model, with training materials, supervision schedules and videos already developed to ensure it can delivered at a larger scale by community healthcare workers.
More about the lead author: Dr Tamsen Rochat is a Chief Research Specialist in the Human and Social Development Research Programme at the HSRC in Durban; she is also an honorary Associate Professor at the Developmental Pathways to Health Research Unit, in the Department of Pediatrics at Wits University. Read more about her work here.
About Africa Health Research Institute
The Africa Health Research Institute (AHRI) is one of South Africa’s largest independent, interdisciplinary research institutes. AHRI aims to become a source of fundamental discoveries into the susceptibility, transmission and cure of HIV and TB and related diseases, seeking ways to improve diagnosis, prevention and treatment. AHRI’s principal funders are Wellcome Trust and the Howard Hughes Medical Institute. Its academic partners are University College London and the University of KwaZulu-Natal.
About the Human Sciences Research Council
The HSRC was established in 1968 as South Africa’s statutory research agency and has grown to become the largest dedicated research institute in the social sciences and humanities on the African continent, doing cutting-edge public research in areas that are crucial to development. Our mandate is to inform the effective formulation and monitoring of government policy; to evaluate policy implementation; to stimulate public debate through the effective dissemination of research-based data and fact-based research results; to foster research collaboration; and to help build research capacity and infrastructure for the human sciences. The Council conducts large-scale, policy-relevant, social-scientific research for public sector users, non-governmental organisations and international development agencies. Research activities and structures are closely aligned with South Africa’s national development priorities.
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