My mum has AIDS: the vulnerability of AIDS-affected children in South Africa

When she started her DPhil on the plight of children in Cape Town who had lost a parent to AIDS, Lucie Cluver focused on the impact on their mental and emotional well-being. A decade later, Dr Cluver's research on children who are caring for a parent with AIDS has revealed serious impacts on their sexual and physical health in addition to shocking levels of psychological disorder. 'Children who look after an AIDS-sick parent are more likely to get TB', she says, 'while those orphaned by AIDS are at three times greater risk of sexual abuse, and of engaging in transactional sex.' This puts them at high risk of becoming HIV-infected themselves.

Studies of AIDS-affected children are a major programme within the Centre for Evidence-Based Intervention in the Department of Social Policy and Intervention. Between 2005 and 2011, researchers including Dr Cluver and Professor Frances Gardner collected interviews from over 1000 children throughout urban South Africa. They found that not only did AIDS-orphaned children have higher levels of psychological disorder than non-orphans, but that losing parents to AIDS produced worse outcomes than losing them to any other cause. 'Stigma, bullying and a feeling of being alone and unsupported add to the pressures on these children', says Dr Cluver.

Importantly this and a more recent study of 6,000 children including young carers has been run in collaboration with the South African ministries of Social Development, Health and Basic Education. 'They wanted us to run a set of projects that would inform policy and programming for these children', says Dr Cluver. 'We also work with NGOs such as UNICEF and Save the Children.'

The study benefits from a Teen Advisory Group of 14 AIDS-affected young people who advise on the design of questionnaires and other aspects of the studies. Members of the group have made a starkly moving film about their experience of living with an AIDS-sick parent and their hopes for the future. Dr Cluver has met many such children, though today most of the interviewing is done by a team of 70 students, local staff and volunteers in South Africa. 'It was incredibly hard at the beginning', she says. 'Even now, I can see how hard it is for my students.'

These studies have already provided the evidence base for National Action Plans developed by governments in South Africa and other African countries, as well as donor organisations such as USAID. The Southern African Development Community has used the findings to develop a minimum package of services for children orphaned or made vulnerable by HIV/AIDS.

'Above all these children need to believe that someone cares about them', says Dr Cluver. 'That will make a huge difference to their mental and physical health in the future.'