Education: "People Are Afraid to Touch Them"

Oxford University and South African researchers are working on a two-year study of child caregivers in families affected by HIV/AIDS. More than 7,000 people in three South African provinces -- about 6,000 children and 1,500 guardians -- will be interviewed to assess the youths' mental health, education, social and government support.

"We interview children face-to-face, somewhere private -- at home, at school, sometimes in the yard, even though some of the sites are only accessible by tiny 20-seater planes or 4x4 vehicles," said study leader Lucie Cluver of Oxford's social policy and work department. The Young Carers South Africa project is supported in South Africa by the government, three national universities, numerous nongovernmental organizations (NGOs) and 35 field staff.

Questionnaires developed with the help of local teenagers are used to ask child caregivers about stigma, bullying, parental relationships, and access to antiretroviral therapy. Preliminary data suggest that young AIDS caregivers experience as much mental distress as AIDS orphans.

"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." "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,'" she said. A 13-year-old boy told of folding his arms during lunch, "'because we don't have money to buy food now that my mother cannot work.'"

About 40 percent of AIDS caregivers surveyed are missing classes or have dropped out of school, compared with 22 percent of youths providing care for persons with other conditions and 5 percent of non-caregivers. Almost one-third reported assisting with personal care such as washing, using the toilet and wound cleaning.

Project researchers are giving regular briefings to the South African government and NGOs. They also hold community meetings and discuss issues brought up by the kids with school officials, social workers, and hospital staff. In addition, the kids themselves are making two movies about their experiences, Cluver said.

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