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Local myths stall paediatric HIV treatment

A nurse draws blood from an infant at the Baylor Children’s Centre of Excellence in Maseru, Lesotho. Thirty percent of the 1,150 children accessing antiretroviral treatment in Lesotho are receiving it at this clinic Eva-Lotta Jansson/IRIN/IFRC
Local understanding of children’s immune systems may be delaying access to paediatric HIV treatment, according to a study at a rural clinic in northern Malawi, where just 15 percent of children in need of antiretrovirals (ARVs) are receiving the drugs.

Research presented at the 1st International HIV Social Science and Humanities Conference in Durban, South Africa, showed that caregivers were reluctant to start sick, HIV-positive children on ARVs because they believed the children’s bodies were too weak for pills and their blood was “still raw”, but that as it “ripened” with time, HIV-related opportunistic infections would leave them.

The caregivers’ reluctance delayed access to treatment for children and, in some cases, led to poor treatment adherence, according to researcher Laura Sikstrom from the Department of Anthropology at the University of Toronto, Canada.

About 60 percent of children in the clinic’s programme started treatment after at least a year of illness, even though around 13 percent were near death at the time, and about an equal number had lost a sibling to AIDS-related illnesses, Sikstrom added.

“In some families, up to six children died previously at the same hospital,” she told IRIN/PlusNews. “In many cases, the child placed on treatment was the last surviving child in that house.”

The mistaken beliefs about immunity also contributed to non-adherence. Sikstrom cited the case of a young girl who had been taken off ARVs after the death of her mother. “The aunt decided she was so well that her blood had ripened. Within two months, [the child] could no longer walk. Without the intervention of another aunt and five months of judicious care, I’m sure [the child] would have died.”

High child mortality

Sikstrom also found that most HIV-positive children surveyed only received treatment once they were visibly ill. “My daughter was so thin [that] you could easily see … [she was] sick,” said one mother quoted in Sikstrom’s research. “People passing by would tell me to go to the hospital, so I came.”

Just 10 percent of child HIV patients were given ARVs after caregivers sought treatment for severe bouts of diarrhoea that often lasted for months - a leading cause of death among young Malawian children.

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Sikstrom said the local view of the immune system, although incorrect, was understandable in a country where almost 18 percent of children die before their fifth birthday.

“It’s a realistic interpretation of children’s immunity,” she told IRIN/PlusNews. “We often understand that children are quick to heal, that they bounce back [from illness], but that’s not the reality in Malawi -children die all the time.”

According to Malawi’s national HIV guidelines, children under the age of 14 years should be initiated on ARVs when they are sick enough to be classified as stage 3 or 4 in terms of the World Health Organization (WHO) staging criteria, which are used in many countries to gauge treatment need among people in the absence of CD4 count testing to measure the immune system’s strength.

Sikstrom added that the recent rejection of a grant application by the Global Fund to Fight AIDS, Tuberculosis and Malaria has derailed plans for Malawi to begin treating HIV-positive children before they fall ill, in line with current WHO paediatric HIV treatment recommendations.

Without treatment, 50 percent of HIV-positive children will die before the age of two years, according to the UN Children’s Fund (UNICEF).

Addressing local misperceptions of immunity may be critical to facilitating access and adherence to ARVs for children, especially in northern Malawi, where Sikstrom alleged that the members of local therapy management groups, comprised of lay therapy counsellors, often play a larger role than nurses in starting children on treatment.

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This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions

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