LUSAKA , 25 January (IRIN) - Zambia's attempts to promote paediatric antiretroviral (ARV) drug adherence are being undermined by families and communities who shield children in their care from knowing their HIV/AIDS status, health experts say.

"Disclosing their status to an HIV-positive child is a difficult process and it requires specialised skills in paediatric counselling but, unfortunately, many affected communities and families are lacking such counsellors and skills," Canisius Banda, a spokesperson in the Zambian Ministry of Health told IRIN.

"We are very much encouraging families, wherever possible, to ensure that they involve health workers when working towards disclosing the status to children living with HIV. But it's still a challenge, in that we have very few specialised paediatric counsellors in the country at the moment."

About 40,000 children are born HIV-positive each year in Zambia but only about 5,000 receive ARVs, while UNAIDS estimates that 17 percent of adults are infected with HIV/AIDS, one of the highest rates in the world.

It is easier to counsel adults living with the virus, but families caring for HIV-positive children often hide the truth from the child. "We have had to come up with so many things in our home because we don't know exactly how she will react once she finds out that she is actually HIV-positive, Jonathan Mwambazi, who cares for an orphaned four year-old girl in the capital Lusaka, told IRIN.

The girl, whose parents died of an AIDS-related illness in 2004, has been on antiretroviral therapy for two years and constantly asks why she has to take so many drugs, Mwambazi said. "At first, we told her she had a prolonged cough, but when she later protested against taking the drugs [ARVs] after recovering from the cough, we had to convince her that, according to the doctor, her heart would start enlarging, but she doesn't seem to believe a thing."

He said the family even monitored the television, to ensure that the child was not given clues about her HIV-positive status. "We don't allow her to watch TV alone, just in case she stumbles on some programme that may make her suspect the drugs she is taking could be AIDS-related. In fact, all of us in the house have agreed to always change TV channels whenever we see an HIV advert or just any programme on HIV/AIDS."

Mulenga Kapwepwe, a culture anthropologist and consultant on child affairs in the government's youth ministry, said most Zambian families failed to disclose their status to infected children because of cultural norms that encouraged elders to "sieve" the information passed to children.

"While our colleagues in Western countries promote a culture of open communication about many issues, we tend to be more cautious, especially when we feel the information might break the child emotionally. The major problem is that, at first, society started by stigmatising HIV/AIDS as the deadly or incurable pandemic and equated it to a death sentence, maybe to deter others from indulging in risky behaviours that may expose them to contracting the virus," Kapwepwe said.

"Therefore, it has now become difficult to convince people otherwise, despite AIDS being manageable. Before breaking the news to a child, it's like we all have to wonder how the child would take it, considering that society still views HIV/AIDS as the deadly pandemic, and this is why people prefer to tell a child lies or deny the child any possible access to information on the disease."

According to Annie Kamwendo, a child protection officer at the United Nations Children's Fund (UNICEF) in Zambia, "it is advisable, as early as possible, to make the child fully aware of the fact that their life entirely depends on the life-long drugs they are taking. Instead of just bombarding them with drugs and telling them lies, it is important that children understand the truth - it will help them to accept the status, become responsible and adhere to the drugs.

"When children find out on their own that you have been hiding the truth from them, which unfortunately is bound to happen at some point, they get hurt, lose trust, begin to live in isolation or slip into depression and may eventually die," she said.

A host of humanitarian organisations, including UNICEF and the Federation of Red Cross and Red Crescent Societies, have embarked on intervention programmes promoting HIV/AIDS awareness to combat the approach of non-disclosure taken by many families with HIV-positive children in their care.

UNICEF is providing specialised training in child counselling, because "we want these community members to understand at what point they should tell the child the truth, and how best they can help the children who need to know their status," Kamwendo said.

The Zambian Red Cross Society has set up youth-friendly corners in their branches across the country, specifically to address the issue of HIV/AIDS among young people and children.

"Our aim is to ensure that children develop a keen interest in knowing their HIV status. The training we are offering to young people will enable them to go into communities and hold peer-to-peer meetings to share information and experiences," said James Zulu, a spokesperson for the society. "We want to take our youth programmes closer to the communities, because our existing OVC [orphans and vulnerable children] support groups have mostly been concentrating on the children ... who are also on ARVs."

Zulu said the youth-friendly corners would encourage discussions about sexual matters and encourage more HIV testing among young people. "We have realised that finding out the status is the starting point to a child ... [adhering] to [ARV] drugs, so that even if the guardian leaves the child in the custody of another person it won't disturb the drug uptake programme."

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