Major study into workforce of children caring for AIDS-sick adults in South Africa

A pioneering study, led by Oxford University, is to examine the plight of children in South Africa who look after parents or relatives who have AIDS. Despite the prevalence of the disease in this region, there is very little research into this 'invisible' workforce and the toll that the caring role takes on them. The findings will inform social policy for South Africa and other parts of the world where there are high rates of AIDS and HIV.

The two-year study, the first major study to be carried out into child carers of AIDS sick adults, started earlier this year. Researchers are interviewing 6,000 children and adolescents - caring for adults with AIDS, caring for adults sick with other diseases, and those living with healthy adults. They will also interview 1,500 adults - parents or guardians who live with the children. Their work is centred on three cities and three rural areas in three South African provinces. A key part of the study is to examine whether a parent becoming sicker with AIDS can be directly linked to the young carer feeling more depressed or more traumatised, and a resulting level of absenteeism from school.

Through questionnaires and face-to-face interviews, the researchers will find out more about what the children are expected to do in the way of domestic duties: for example, whether they have to care for sick people, administer medication, and look after younger siblings. The study will look at the impact on their education and their mental and physical health. They will also look at whether this group is more likely to engage in risky sexual behaviour and contract HIV themselves.

Project leader Dr Lucie Cluver, from the Department of Social Policy and Social Work at Oxford University, said: 'We need to move beyond 'AIDS-orphanhood' - and to understand the impacts of living within an AIDS-sick family. Sometimes children as young as eight are tackling huge responsibilities in caring for family members suffering from AIDS. The South African government is committed to using the research findings to inform future policy.

'Other Oxford studies of AIDS orphans and child carers
A pilot study into child carers of adults with AIDS, also carried out by the Oxford-led team in 2009, found that a quarter of children caring for adults with AIDS were providing daily care of three hours or more - with children living in rural areas reporting that they spent even longer caring for adults. Nearly a third of the children said they helped adults to the toilet, cleaned wounds or dealt with soiled bedclothes. Lack of schooling was a major problem for young carers with nearly half (41 per cent) missing school to care for the sick person and (43 per cent) being unable to concentrate in lessons because they were worried about the sick person at home. One in five (22 per cent) also reported being hungry at school. Young carers also reported being bullied or teased at school because of their parents' illness, and having problems socialising with their peer groups.

Children's accounts from the 2009 study:'When she is in pain I call the ambulance. We go together to the hospital; then I don't go to school until she comes back. I take care of my mother, always, when she needs me to help.'  (Girl, 8)
'I take my mother to the clinic in a wheelbarrow. I bring her a glass of water because she cannot get out of bed.' (Girl, 11)
'At school when other scholars are eating I just fold my arms, or I ask them for food because we don't have money to buy food now that my mother cannot work.' (Girl, 13)
'I look at my mother and I see she is sick. I worry that she is going to die just like my father did.' (Boy, 17)

The Oxford researchers have also carried out research into AIDS orphans specifically. The study in 2006-7 found a high risk of AIDS-orphans suffering from symptoms of depression, anxiety and PSTD (post-traumatic stress disorder). That study of 1,200 AIDS-orphaned children and other children suggested that the distress stemmed from feeling trapped in a cycle of poverty, hunger and the stigma of having a parent with AIDS.

Project leader Dr Lucie Cluver said: 'Eight out of every ten children who also experiences the associated stigma and hunger, showed signs of depression, anxiety and PSTD. However, from our preliminary study we found this number could be reduced to around 19 per cent or two out of ten children if those children had enough food on the table five days of the week and did not feel discriminated against. These changes could make a stark difference to the lives of these young people.

' In previous studies, children of adults with AIDS have been asked to express their lives through drawings. These drawings are available for media use on request.

For more information, please contact the University of Oxford Press Office on + 44 (0) 1865 280534 or email press.office@admin.ox.ac.uk

You can contact Dr Lucie Cluver at lucie.cluver@socres.ox.ac.uk