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Involving children in issues raised by HIV/AIDS

The fine instance of Rodrigue Koffi in Ivory Coast

BOUAKE, 22 Jun 2006

As co-founder of a shelter for children orphaned by the HIV/AIDS pandemic, Rodrigue Koffi knows that children should never be shut out of the complex problems faced by families living with HIV/AIDS.

But Koffi winces when tagged an AIDS orphan himself. Instead, the 20-year-old chairman of the Nzrama home housing 50 HIV/AIDS orphans describes himself as a defender of children’s rights.

"There are no pre-defined criteria for orphans and vulnerable children," he told IRIN in the rebel stronghold city of Bouake, in divided Cote d’Ivoire. "You can find orphans everywhere : in prisons, on the streets, in villages or working as a prostitute."

His own life changed dramatically in 1996, when his father died of acute tuberculosis coupled with skin cancer. Until then, his mother, sister and three brothers had an income and lived comfortably.

"Everything changed after my father’s death," Koffi said. "And because I didn’t understand what was happening, things between my mother and I became very tense. I started to resent her."

But things got even worse when his mother fell ill too. Koffi, who was involved in a health discussion group at school, used to accompany her to the offices of an association set up for people living with HIV/AIDS called SAS, an acronym for Solidarity Social Action.

"I didn’t like going there," he said. "There were a lot of patients, there were all sorts of posters about AIDS, and I felt they were hiding things from us. Nobody talked to me because I was only a child."

SAS, whose premises are in a narrow two-storey building in Bouake, which before the war was the country’s second biggest city, provides assistance to nearly 3,000 children and supervises antiretroviral (ARVs) medication to 300 HIV-positive people.

There, the boy who had always wanted to become a doctor, was kept in the dark about his mother’s illness. Exasperated by the silence surrounding her condition, he repeatedly visited the centre until one day he simply refused to leave, demanding an explanation.

SAS director Penda Toure, who heads a team of four social workers and a medical doctor, remembers the fragile 11-year-old well. "One of the social workers came to see me because she didn’t know how to get rid of him," she said. "He insisted we tell him what his mother had. It was an awkward situation."

Finally, the social workers gave in and told Koffi his mother was HIV-positive.

Pretending it was a witchcraft

At SAS, a child is told whether he or his parents have HIV/AIDS as soon as he feels ready to know the truth. Test results are always disclosed to adults and to parents.

But Koffi’s mother never found out her son knew about her illness - not even on her deathbed in 2000.

"My brothers and sister kept talking about witchcraft and my mother encouraged them," Koffi said. "She was afraid we’d abandon her if we discovered the truth."

The continuing and widespread fear of talking openly about the disease is something he leant to understand from bitter experience. "When my mum fell seriously ill, our landlord evicted us. For three nights, we slept outside in the rain. Our family, our friends from church, they all turned their backs on us."

"AIDS is still far from being accepted in Côte d’Ivoire," he said. "People have very backward ideas and believe it is something dirty. Many still remember the first awareness campaigns of prevention posters featuring extremely skinny people. Just like my mother."

So from 1997 to 2000, Rodrigue Koffi remained silent. A small loan from SAS enabled him to make a little money hawking paper handkerchiefs during the school holidays. But never did he say a word about his mother’s disease. Like everyone else, he pointed at witchcraft, protecting her as she had protected herself.

The children took turns to help their mother - often on empty stomachs as the family barely managed to get by. "She even suffered from having to take 24 pills every day. Sometimes she couldn’t take it anymore," he said.

Nzrama was created the year his mother died. Convinced of the need for children to be involved should their parents test positive, Nzrama tries to teach parents about the importance of dialogue, whether children are infected or not, through house visits and meetings with social workers.

It was a mistake to consider children separately from their parents, Koffi said. "If the parents decide to keep silent, there is nothing we can do. But the best way to help children is to involve them and find an approach that’s beneficial to the entire family."

Children can understand

Koffi said it was understandable that parents try to protect their children by not telling them they have HIV/AIDS. But he insisted parents should open up to their children and encourage dialogue. Children are capable of understanding a lot of things, he said.

"Children don’t want to be different. They don’t like to feel that something is wrong with them. Sometimes they can’t handle their suffering, the medication they have to take, the fact that they have to have special food or can not partake in sports."

"It’s better if children know their status and learn to deal with the ups and downs of daily life," he added.

Cote d’Ivoire is one of the most badly HIV/AIDS affected countries in West Africa, with nearly 10 percent of cases reported in the region, including 600,000 orphans, according to a report published by the Health Ministry of Cote d’Ivoire.

When parents cannot muster the courage to tell the truth, Nzrama steps in to inform adolescents about health and reproduction issues, sex, and ways of transmission to make sure that the virus won’t spread.

Raising awareness is a long-term project, but Koffi believes it can be done. "When children are in trouble, it should concern the entire community," he said.

Paradoxically, Koffi, who only went for a test himself this year, has never told his 16-year-old brother what caused their parents’ death. The past remains a taboo subject in his family, and AIDS is never mentioned.

"I try to contribute my share," he said. "I discuss sex with my younger brother, who asks me all kinds of questions. I actually think he might suspect something. But I couldn’t help smiling when one day I saw him wearing a red ribbon pinned on his shirt."

Publié sur OSI Bouaké le vendredi 23 juin 2006