Ground breaking research led by a team of SA 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, is led by Dr Tamsen Rochat from the Human Sciences Research Council and was conducted at the Africa Health Research Institute in KwaZulu-Natal, South Africa.
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.
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; and mothers in the intervention also reported significant improvements in the quality of the parent-child relationship.
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.”
Background: Increasing populations of children who are HIV-exposed but uninfected will face the challenge of disclosure of parental HIV infection status. We aimed to test the efficacy of an intervention to increase maternal HIV-disclosure to primary school-aged HIV-uninfected children.
Methods: This randomised controlled trial was done at the Africa Health Research Institute in KwaZulu-Natal, South Africa. Women who had tested HIV positive at least 6 months prior, had initiated HIV treatment or been enrolled in pretreatment HIV care, and had an HIV-uninfected child (aged 6–10 years) were randomly allocated to either the Amagugu intervention or enhanced standard of care, using a computerised algorithm based on simple randomisation and equal probabilities of being assigned to each group. Lay counsellors delivered the Amagugu intervention, which included six home-based counselling sessions of 1–2 h and materials and activities to support HIV disclosure and parent-led health promotion. The enhanced standard of care included one clinic-based counselling session. Outcome measures at 3 months, 6 months, and 9 months post baseline were done by follow-up assessors who were masked to participants’ group and counsellor allocation. The primary outcome was maternal HIV disclosure (full [using the word HIV], partial [using the word virus], or none) at 9 months post baseline. We did the analysis in the intention-to-treat population.
Findings: Between July 1, 2013, and Dec 31, 2014, we randomly assigned 464 participants to the Amagugu intervention (n=235) or enhanced standard of care (n=229). 428 (92%) participants completed the 9 month assessment by Sept 3, 2015. Disclosure at any level was more common in the Amagugu intervention group (n=204 [87%]) than in the enhanced standard-of-care group (n=128 [56%]; adjusted odds ratio 9·88, 95% CI 5·55–17·57; p<0·0001). Full disclosure was also more common in the Amagugu intervention group (n=150 [64%]) than in the enhanced standard-of-care group (n=98 [43%]; 4·13, 2·80–6·11; p<0·0001). Treatment-unrelated adverse effects were reported for 17 participants in the Amagugu intervention group versus six in the enhanced standard-of-care group; adverse effects included domestic violence (five [2%] in the Amagugu intervention group vs one [<1%] in the enhanced standard-of-care group), sexual assault (four [2%] vs one [<1%]), participant illness or death (four [2%] vs four [2%]), and family member illness or death (four [2%] vs none). No treatment-related deaths occurred.
Interpretation: The lay-counsellor-driven Amagugu intervention to aid parental disclosure has potential for wide-scale implementation after further effectiveness research and could be adapted to other target populations and other diseases. Further follow-up and effectiveness research is required.
Tamsen J Rochat, Alan Stein, Mario Cortina-Borja, Frank Tanser, Ruth M Bland