by Lucie Cluver
Our work often feels like a series of battles against an enemy that outwits us.
Despite real global progress in preventing and treating HIV/AIDS (PDF, UNICEF website), children and adolescents remain left behind. Every hour, 30 adolescents are infected with HIV. The situation is most severe in Southern and Eastern Africa, which accounts for nine in 10 of adolescent AIDS deaths. AIDS is the leading cause of death amongst adolescents in the region.
We have realised that if we are to have any chance of winning the battle, academics need to work in close partnership with governments, UN agencies and policymakers – and with teenagers themselves. Our research studies are developed together with these groups, which often leads us to unexpected questions and findings.
Following the lives of children affected by HIV/AIDS
The Young Carers study, which was funded by the ESRC and South Africa’s National Research Foundation, is the world’s largest longitudinal study of AIDS-affected adolescents. It was planned with UNICEF, UNAIDS, WorldVision, and with PEPFAR-USAID, with the explicit aim of ‘science for policy’. In three South African provinces, we randomly selected areas and interviewed every household with an adolescent – totalling over 6,000 young people in five languages. A year later, 97% spoke with us again.
During this study, a 12 year old HIV-positive girl died because of her daily struggle to take her medication. She was not the only one. We started a sister study, Mzantsi Wakho (‘our Africa’), supported by the Nuffield Foundation, UKAID and ESRC IAA funding. Of this cohort, 94% of the 1,500 HIV-positive teenagers have stayed with the study for the past three years, allowing us for the first time to understand how we can support teenagers living with HIV.
The effect of ‘cash plus care’
Together, these studies have had massive impacts on new services for teenagers in Africa. With UNICEF, we found that social welfare – small child support grants provided by the South African government to poor families – allowed teenage girls to avoid having a ‘sugar daddy’ older boyfriend to support the family, and in this way prevented a major route of HIV-infection. We also found that combining ‘cash plus care’ – social welfare and parenting support – reduced HIV risk behaviour by 50% for both boys and girls. Three programmes combined – child grants, free schools and good parenting – reduced HIV-risk incidence from 11% to 2% in teenage girls. We also found that cash plus care could improve adherence to lifesaving medication, and reduce risky behaviour for teenagers living with HIV.
As a result, cash plus care programmes are being delivered to two million teenagers in 10 countries in Southern and Eastern Africa, led by USAID-PEPFAR, UNICEF and national governments. The research team were asked to write South Africa’s National Adolescent and Youth Health Policy (2017-2022) and the Global Fund awarded $50 million to the South African government to provide cash plus care services. Cash plus care is included in UNAIDS, UNICEF and UNDP policy guidelines.
Being recognised for this work and winning the ESRC Impact Prize for Outstanding International Impact last year was brilliant, but it didn’t feel like I deserved to be on that stage.
The research only happened because of a team of hundreds of postdoc students and local staff, who worked over years through floods, fires, server crashes and riots.
And it was really only possible because of thousands of teenagers who were willing to talk to us about these most personal aspects of their lives.
And so we are spending our prize money on making sure that their trust in us is not wasted. We have met with the World Health Organisation, the Global Fund, the UN Development Program, UNICEF, UNAIDS, the Gates Foundation, UNFPA and the International Rescue Committee, to plan the essential next steps in research to support Africa’s adolescents. We have also added to our Teen Advisory Group in South Africa, with new groups in Uganda and Sierra Leone, to understand needs and solutions from their perspectives.
And – as ever – these partnerships have led us to questions that we had never expected. We are about to start a major new study to understand how we can best help adolescent mothers and fathers in Southern Africa. We are bringing together data from 10 countries across Africa to identify how parenting support programmes may work differently across contexts. And we are planning a major new collaboration to take cash plus care a step further. We need to understand what combinations of services can support Africa’s teenagers not only to avoid HIV-infection, but also to succeed across a range of the Sustainable Development Goals.
At every point, I worry that our plans are too ambitious and that the research sites are too dangerous. But at every point we realise that there are new challenges where policymakers lack the evidence to know how best to act. With 435 million teenagers living in Africa by 2050, we’ll carry on fighting this battle.
Lucie Cluver is a Professor at Oxford University and at the University of Cape Town. She works closely with a superb team of partners, postdoctoral, doctoral and master’s researchers. Together, they collaborate with the South African government, USAID-PEPFAR, UNICEF, UNDP, the World Health Organisation and Global Fund, and with other international NGOs, to provide evidence that can improve the lives of children and adolescents in Sub-Saharan Africa.
In 2017 Lucie won the ESRC Celebrating Impact Prize for Outstanding International Impact.