Not far from the manicured pitches where millionaire footballers are capturing the world’s attention, researchers are investigating a reality that will linger long after the World Cup circus has left.
They are interviewing more than 7 000 people in some of the country’s poorest townships to evaluate the mental health and education of a generation of South African children who are growing up caring for relatives with HIV and Aids.
This is the Young Carers South Africa project, a collaboration between Oxford University, the South African government, three South African universities and many NGOs. The two-year study, involving 35 field staff, including local managers, interviewers and volunteers, is collecting data that should inform social policy for South Africa and other countries with high rates of Aids and HIV.
The project is being spearheaded by Lucie Cluver, of Oxford’s department of social policy and social work, whose inspiration was her PhD research — a study of 1 000 children who had been orphaned by Aids. She discovered that the children suffered from higher levels of psychological distress than orphans whose parents had died of other causes and were also more likely to contract HIV themselves.
To raise awareness of the findings, Cluver sent her research to a South African professor, who introduced her to the government’s then-minister of social development, Zola Skweyiya. The next day he called her to a meeting and said her research ‘needed to become a national study”, Cluver said.
Two years on the Young Carers project now has teams in three provinces, interviewing 6 000 children and 1 500 of their parents or guardians about their access to social welfare grants, health visitors and free school meals. With the help of local teenagers, they have drawn up questionnaires that also ask about issues such as stigma and bullying, social support, parent-child relationships and access to antiretroviral medicine.
‘We interview children face to face, somewhere private — at home, at school, sometimes in the yard,” Cluver said, ‘even though some of the sites are only accessible by tiny 20-seater planes or 4×4 vehicles. The interviews are amazing — the kids are often so happy to have someone to talk to about the secret illness in their family.
‘What’s difficult is the circumstances in which they live. We’ve worked through taxi wars and riots in Cape Town, gangsters in Durban and cholera outbreaks in Mpumalanga. Our researchers walk through open sewers and over rubbish heaps, into homes that desperately poor people keep spotlessly clean.”
So far, the research suggests children who live with Aids sufferers have as much psychological distress as those who have been orphaned by Aids. ‘It’s because of the stigma that comes with having HIV in the family,” Cluver said. ‘Kids report being gossiped about and teased and having people scared to touch them.”
The early findings show that about 40% of children in Aids-sick homes are missing or have dropped out of school, compared with 22% in homes affected by other illnesses and 5% in healthy homes. Almost a third of the young carers — sometimes as young as eight — report carrying out intimate care, such as washing sick people, helping them to go to the toilet and cleaning their wounds.
‘The kids aren’t passive victims, they’re kids just like all others, wanting to be Beyonce or Usher. They’re so excited about the World Cup that when they chose pseudonyms for their stories to be reported in our research, half of them used football players’ names,” Cluver said.
‘They worry about the same things as First-World kids — one 13-year-old girl cried throughout her interview because kids at school were calling her ‘baboon face’.”
But when these children get home, ‘they wash blankets, feed younger siblings, rub the backs of people with tuberculosis, make sure their parents take their antiretrovirals, miss school for hospital trips and queue to get medication for their carers who are too sick to stand,” Cluver said.
‘When they get to school they’re so worried about the sick person at home that they can’t concentrate.” More children will face this situation. In 2008 1.4-million South African children had lost a parent to HIV/Aids; that’s expected to rise above two million by 2015.
When asked what Cluver hoped the impact of her study would be, her response was passionate: ‘We don’t hope — we’ll make something happen: this study is science to serve policy.” The researchers are already giving regular updates to the South African government and NGOs such as USAid, Unicef and Child Welfare South Africa.
They hold community meetings and speak to schools, social workers and hospital staff about the issues the children raise, and how best to support them. ‘We’re also making two movies — directed, filmed and edited by the kids and their carers — to deal with the stigma surrounding Aids,” said Cluver.
The study aims to reveal the scale of the difficulties faced by HIV/Aidsaffected families. ‘There has been no large-scale research in the developing world to understand how much work these kids are taking on in the home and the effects,” Cluver said.
‘We need to understand if these kids are more depressed, traumatised or anxious than other children and whether they are struggling at school. We need to know if they’re unable to access health services, or are catching illnesses like TB from people they’re looking after. Then, we need to know what can help them.”
Both the government and NGOs were eager for the findings, Cluver said, to adapt their policies to help these children. She is hopeful about the study’s impact, but admits that, in the meantime, the researchers feel powerless.
One 13-year-old told of just folding his arms at lunchtime at school, ‘because we don’t have money to buy food now that my mother cannot work”. An 11-year-old girl described pushing her mum to the clinic in a wheelbarrow and ‘bringing her a glass of water because she cannot get out of bed”.
‘The parents tell our researchers about horrific experiences and expect to receive help for their situation, but but all we can do is give them a biscuit and a certificate.
‘There’s nothing we can do but research,” Cluver said. ‘It’s hard to face families who have shared their life stories and then have to walk out of the door.” —