KENYA: No guidance on caring for HIV-positive children
NAIROBI, 23 June 2009 (PlusNews) - James Samo* is finding it harder and harder to deflect the persistent questioning of his six-year-old niece, Mary, he looks after, as to why she needs to take her antiretroviral medicine every day when she is not sick.
"How do I start explaining it to her? Even if I gathered the courage to do it, what would be the impact on her life? It is a question that haunts me," he told IRIN/PlusNews.
Up to 170,000 Kenyan children are infected with HIV, so many parents and guardians have the same problem, yet there is little or no guidance.
"Caregivers face the dilemma of how to disclose status to ... [HIV-positive] children, and to whom. Do you ... disclose the child's status to the teachers? Will it be infringing on their right to privacy? Who gives the consent for, say, a child of 15 to be tested? Is it the caregiver or the child, and what does the law say?" said Mabel Ngoe Takona, HIV/AIDS Coordinator for Africa at ActionAid, a global anti-poverty agency.
Governments should also put in place policies on disclosing the status of children that took into account societal norms, she suggested.
"Parents and other guardians ... should have some training forums ... [on how to] care for these children," noted Samo, who has looked after Mary since her parents died, in the informal settlement of Dandora, in Kenya's capital, Nairobi.
The 2008 Kenya country progress report presented to the UN Special Session on HIV/AIDS noted that paediatric psychosocial support and awareness on the part of caregivers - very often grandparents - was poor. Caregivers also had to deal with stigma and discrimination from peers, and even health workers.
"I find it difficult to cope because people say my child is paying the price of my promiscuity," said Diana Wairimu, a single mother in Dandora. "She cannot even play with other children here because they feel she will infect their children."
Buckling under the strain
There are other practical problems. Zaina Jamah, a counsellor at the international medical charity, Médecins Sans Frontières, said ensuring drug adherence was tricky and could not be delegated.
"Caregivers are oftentimes faced with other demands [like working late, so] ... the children ... [are not given their] drugs," she said.
"If the stigma in the society was addressed adequately, then the caregiver could simply leave the child in somebody's care," Jamah said.
One of the ways to ease the burden would be to encourage caregivers to seek advice on sensitive and appropriate ways to disclose the status of a child, either to older HIV-positive children, or to a trusted relative who could help when the primary caregiver was away.
However, such advice is not easy to come by. Paediatric health workers and counsellors are in short supply; according to the National AIDS and Sexually Transmitted Infections Control Programme, only 1,800 Kenyan health workers have received training in paediatric HIV.
"The training in how to counsel children living with HIV has been very scanty," said Diana Mburu, a nurse at the paediatric unit at Kenyatta National Hospital, Nairobi, Kenya's largest referral hospital. "It is important for the government to provide training not only in treatment but also in how to counsel these children."
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* Not his real name
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