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SOUTH AFRICA: Trauma of Children Caring for HIV-Positive Parents

Laure Pichegru

JOHANNESBURG, Jul 16 2010 (IPS) - Nine-year-old Nomasonto* had no choice but to switch roles with her mother and care for the HIV-positive woman who gave birth to her. Instead of worrying about homework and going out to play with her friends, Nomasonto’s daily concerns were now a matter of life and death.

Suddenly the child had to wash her mother, change and feed her. She even had to take her ill mother to hospital for checkups and to collect her medication.

Nomasonto cared for her mother until she was 10. That year her mother died of an AIDS-related illness. It is now four years later, but when Nomasonto tells IPS her story, she does so in a tiny voice, which seems to contain some anger. It is hard for her to talk. She still remains traumatised by suddenly having to care for her parent.

But sadly Nomasonto is not the only child in South Africa traumatised after being forced into the role of becoming a care-giver to HIV-positive parents. According to the preliminary results of a pioneering study conducted by Oxford University’s researchers in South Africa, children caring for parents sick with HIV/AIDS report similar levels of psychological distress as those orphaned by AIDS.

The study is being conducted across the country in collaboration with three South African universities, a number of NGOs, and with the support of the South African government.

By interviewing 6,000 children and teenagers, and 1,500 adults, parents or guardians who live with them, researchers are investigating the educational, mental and physical health of children taking care of HIV-positive relatives.

The Young Carers South Africa Project aims to build a database to inform governments, NGOs, hospital staff and social workers about the needs of these children and identify potential areas of intervention.

“There has been much work on AIDS-orphaned children in the past decade, but these particular groups of children, whose parents are still alive but sick, are very little understood,” said Dr. Lucie Cluver, project leader, whose doctoral research at Oxford’s Department of Social Policy and Social Work has led to the national study.

Cluver said it was really important that policies and programmes are based on accurate information, so that issues can really be addressed. “We didn’t even know whether these kids were more at risk, or what kind of risks they had, or what we can do to help them.”

According to the study these children face significant hurdles. When Nomasonto was caring for her mother, she was still required to attend school daily.

“At school, when I made a mistake or was late, because I have had to take care of my mother, the teachers used to hit me,” Nomasonto said. “I tried to explain to my teachers that my mother was sick but they did not want to listen to me.”

Eventually she had to drop out of school because the burden of caring for her mother. Nomasonto is now HIV positive after being raped by her uncles and two of her elder sister’s boyfriends. She has since been informally adopted by a welfare worker.

Previous research reveals that a quarter of children caring for adults with AIDS provided over three hours of care per day. Nearly a third of the children said they helped adults to the toilet, cleaned wounds or dealt with soiled bedclothes.

“Aside from these physical demands, we have indications that the emotional demands are more lasting. In particular, should a parent pass away, this may lead these children to believe that they have contributed to this, impressing on them a sense of guilt that is unwarranted,” said Johriaan de Beer, the chief executive officer of Tholulwazi Uzivikele, an NGO which works with orphans and vulnerable children.

One major part of the Young Carers study is to determine whether a parent becoming sicker with AIDS can be directly linked to the children feeling more depressed or more traumatised. According to Cluver, stigma associated with AIDS is one of the major causes of the children’s distress.

“Stigma is such a terrible issue, and it hurts these kids so much when people are gossiping about them behind their backs, teasing them and treating them differently. One child said to me that people yelled at her in the street and called her mother a prostitute because she was HIV-positive,” Cluver said. She added she thought that at the root of this stigma lay fear, worry and misunderstanding.

Moreover, when a parent becomes sick, children often have to cope with financial difficulties.

Selestina’s* HIV-positive mother was the only one in their household who had a job until she became ill three years ago. “Since she can’t work anymore, we have no income.”

The family receives a child grant for each child living in the household, which is about 100 dollars per month. But the money is not enough to feed and care for a family of six.

“Sometimes we do not have the money to buy books for school and sometimes the kids go to school hungry. They have soup at school, and it is the only meal they get during the day,” the 23-year-old, who has a baby herself, said.

According to De Beer, although social support grants may be available for children in need, it does not guarantee they get this money as accessing these grants as minors are not permitted to receive grants directly.

The government aims to use high quality scientific evidence to inform our decisions about policy for Children affected by AIDS said Jaconia Kobue, spokesman for the Department of Social Development.

The study will be completed in 2011.

*Names have been changed.