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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 - with enormous potential for protecting children’s health in the long term.

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In a rigorous randomised control trial, with support from the Department of Psychiatry's Professor Alan Stein, researchers tested a lay-counsellor guided disclosure intervention, called Amagugu, with 428 HIV positive mothers.

The study, published in The Lancet HIV, 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 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 the first trial testing a parental HIV disclosure intervention to show positive outcomes on the African continent.

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:

  1. Mothers in the Amagugu intervention arm were 27 times more likely (p<0.001) to take their child to a HIV-related healthcare visit
  2. Mothers were five times more likely to develop a care plan for their child in preparation of periods of HIV related illness
  3. 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
  4. 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.”

The publication is freely available to researchers in 127 low and middle-income countries on The Lancet HIV website.

 

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.