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ZAMBIA: Parents’ Fears Slowing Uptake of Paediatric AIDS Treatment

LUSAKA, Jul 6 2010 (IPS) - Diana Banda* is quickly running out of excuses to give her six-year-old son about why he has to take a schedule of drugs every day.

Her son David* is HIV-positive and has been on anti-retroviral treatment (ART) for two years. But he may not learn the truth about his HIV status anytime soon as his mother thinks up one excuse after another as to why he has to religiously take the drugs.

“He asks me almost every day why he has to take these same drugs all the time. At first, I told him that he had a persistent headache but when I went away for a week, he skipped (the medication) for two days and then protested that he had had no headache,” said Banda, a housewife in the Zambian capital, Lusaka.

“So as a family, we have now had to convince him that according to the doctor, his head will start enlarging if he ever stops taking the medicine; but he seems to question everything we say and do,” she said.

Banda is by no means the only parent shielding her child from knowing his HIV status. There are thousands other Zambian parents and guardians who are too scared to reveal the HIV status of their kids to them – for reasons ranging from the uncertainty of a child’s reaction, to the fear of stigma, and even from the fear being judged as promiscuous by their children.

But health experts say families and communities who shield children in their care from knowing their HIV/AIDS status are undermining the country’s attempts to promote paediatric anti-retroviral (ARV) uptake and adherence.

“The uptake of paediatric ARV treatment is still very low as compared to the adults and mostly this is because some parents are not very keen on bringing their children for testing. (But then) even those who test and are put on treatment in most cases do not seek the co-operation of the child in the treatment process, which affects adherence,” Dr Mutinta Nalubamba, a paediatric ART co-ordinator in the health ministry, said.

She said that at the end of 2009, just over 30,000 children were tested for HIV, though over 70,000 needed the test based on the number of HIV-positive mothers who delivered. “We are asking all families with HIV-positive children to be more open about the problem, because hiding the truth puts a child’s life at greater risk,” Nalubamba said.

About 40,000 children are born HIV-positive each year in Zambia but only 21,000 are currently receiving ARVs.

“Over 90 percent of the HIV-positive children acquire the virus through mother to child transmission and the unfortunate part is that over 50 percent die before age two because of no treatment or non-adherence,” Nalubamba told IPS.

But it’s not such an easy thing to do. Banda says she cannot stand the thought of her son finding out that he is HIV-positive.

“It will hurt me so much as an adult because there are days when I feel like I will die any minute – but what about a child?” asks Banda, whose husband died of an AIDS-related illnesses in 2007.

Matildah Mwamba, a traditional birth attendant and marriage counsellor, says most Zambian families fail to talk to their children about their HIV status because of cultural norms that encourage elders to filter the information passed onto children.

“The biggest problem is that HIV/AIDS is still stigmatised as the deadly or incurable pandemic, which is like a death sentence. Before breaking the news to a child, it’s like we all have to wonder how the child would take it … and this is why people prefer to tell a child lies or deny the child any possible access to information on the disease,” Mwamba said.

Banda is so afraid that her son may accidently discover that his drugs are ARVs that she does not allow him to watch TV alone or even attend functions where people may be talking about HIV. “(It is) just in case he stumbles on some programme that may make he suspect the drugs (he is taking) might be AIDS drugs. We always change TV channels whenever we see an HIV advert or just any programme on HIV/AIDS,” Banda said.

The ministry of health is currently developing guidelines on paediatric counselling. And a number of non-governmental organisations have embarked on intervention programmes to raise HIV/AIDS awareness and combat the non-disclosure approach adopted by many families with HIV-positive children in their care.

Felix Mwanza, a spokesperson for one NGO, the Treatment and Advocacy Literacy Campaign tells IPS: “We want children to develop a keen interest in knowing their HIV status, to be able to relate with their peers, to be able to open up about issues of HIV and AIDS. It’s only fair that they (children) know the truth so that they can even help in reminding the parents on the aspect of medication.”

*Names have been changed