Policy | Health

22 Jun 10

A pioneering study in South Africa, led by Oxford University, is examining the plight of children who care for parents or relatives who have AIDS.

Despite the prevalence of the disease in this region, there is little research into this ‘invisible’ workforce of carers and the toll that it takes on them. 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 whether it leads to them missing school.

The two-year study, the first major study to be carried out into child carers of AIDS sick adults, will involve interviews with 6,000 children and adolescents. The research team is talking to child carers of adults with AIDS and adults who are sick with other diseases, as well as children living with healthy adults. The researchers are to interview 1,500 adults – the parents, relatives and guardians of the children. The South African government is committed to using the research findings to inform its social welfare policy.

The research is centred on three cities and three rural areas in three South African provinces. Through questionnaires and face-to-face interviews, the researchers are trying to find out more about what the children are expected to do in the way of domestic duties: whether they have to care for sick people, administer medication, and look after younger siblings. The study also examines the impact on their education and their mental and physical health and looks at whether this group is more likely to engage in risky sexual behaviour and contract HIV.

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.’

A previous pilot study in 2009, conducted by the Oxford team, found that a quarter of children caring for adults with AIDS said they looked after adults for at least three hours a day – with children living in rural areas reporting that they provided even more daily care. 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. An 11-year-old girl said: ‘I take my mother to the clinic in a wheelbarrow. I bring her a glass of water because she cannot get out of bed.’ One 17-year old boy said: ‘I look at my mother and I see she is sick. I worry that she is going to die just like my father did.'

In a study in 2006-07, Dr Cluver focused on AIDS orphanhood and found a high risk of depression, anxiety and PSTD (post-traumatic stress disorder) in a sample of 1,200 children of AIDS-orphaned children and children who had not been orphaned. The research suggested that their distress stemmed from feeling trapped in a cycle of poverty, hunger and the stigma of having a parent with AIDS.

The study is funded by grant between the UK Economic and Social Research Council (ESRC) and the South African NRF. The study is also supported by the University of KwaZulu-Natal and by the John Fell Fund, combining South African and British funders.