Living with AIDS: children's accounts

Twelve children from South Africa who helped to shape the work of Oxford University researchers studying AIDS-affected families have made their own film. The 14-minute film will be launched at the international AIDS conference 2012, which starts in Washington DC on 22 July.

The children, who live around Cape Town, are the teen advisory group for an Oxford research team led by Dr Lucie Cluver from the Department of Social Policy and Intervention. She has visited the teen advisory group (TAG) team and met their families many times over the years to seek advice on how to develop a pioneering study of AIDS-affected children in which their progress is followed-up a year after an initial interview. When the children said they would like to make a film about their own experiences, the Oxford research staff donated cameras and facilitated the project.

Watch the video here.

All 12 had a hand in the making of the film, but five of them feature on camera. The resulting film is very moving: it gives the viewer a sense of what it is like living with sick adults with AIDS, and how they deal with the stigma, and the bullying and isolation.

Although the children featured in the film are not research subjects, many of the researchers’ statistics have been played out in their lives too. The Oxford research found that children orphaned by HIV/AIDS or with AIDS-ill parents are twice as likely to suffer depression, anxiety and feel suicidal than other children. More than a third miss school regularly to help with medical care and 37% go to bed hungry more than twice a week. The stress of poverty and HIV leads to three times more child abuse. The researchers also found even more dangerous risks: girls with Aids-ill parents, living with abuse and in poverty, have a 57% chance of having sex in exchange for food, school fees or shelter.

Dr Cluver said: 'We are hoping to collect 5,000 messages of support to challenge the stigma experienced by children affected by Aids. We have set up a Facebook page and a page on our 'Young Carers SA' website where people can leave their messages of support. This film gives a chance to show them – and other children in their situation – that people worldwide support them and wish them well.'

Dr Cluver and her colleagues are developing a pioneering study of AIDS-affected children. In 2005 they started to follow more than 1,000 children over four years in highly deprived townships in South Africa. Since 2009, the team has been engaged in a larger national study, interviewing 6,000 children and 2,600 guardians or parents as part of the National Young Carers Study. Their first findings already suggest that children caring for adults with AIDS are just as likely, if not more likely, to have lasting psychological disorders, as well as other problems, such as tuberculosis, as children orphaned through AIDS.