HIV-positive kids get by with a little help from their friends

IRIN PlusNews | December 31, 2010

IRIN Plus News highlights a support group for children and adults living with HIV. "Zingatia Maisha," a Swahili phrase meaning "carefully consider life," is a project run by several organizations, including the Foundation, that aims to involve people living with HIV/AIDS and their communities in treatment, adherence, and support.

When Yona, 12, went to live with his grandmother after his parents died several years ago, she told the neighbors he was HIV-positive, hoping he would get some sympathy. Instead, the boy found himself ridiculed and alienated from his playmates.

"My grandmother told them, because I was always sick. Many children who know, fear me and don't want to play with me," he told IRIN/PlusNews at his home in Vihiga District, western Kenya. "They think I can give it to them, but I know I cannot. I tell them I am like them but they don't agree."

Some of the kids in his neighborhood still refuse to hang out with him, but three years ago, Yona found a new set of friends. A support group for children living with HIV has given him the chance to regularly meet children his own age to play or share personal experiences.

"Since I started meeting my friends, I am not afraid of HIV, because I see them and I see myself and we are very fine," he said. "When I come here and meet with my friends, we play and somebody asks me if I have taken my drug then I remember I should take my medicine."

The support group is part of Zingatia Maisha (“carefully consider life” in Swahili) - a project run by the government and NGOs, including the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) and the African Medical and Research Foundation, AMREF. The programme aims to involve people living with HIV and their communities in treatment, adherence and support.

There are currently 20 pediatric psychosocial support groups in Vihiga, catering for 600 HIV-positive children; about 80 percent of these children are not only HIV-positive but also total orphans. They meet independently every weekend and once a month with a healthcare provider who gives them health talks.

The programme is helping fill a large gap in the care of children living with HIV nationally. The Kenya National AIDS and Sexually Transmitted Infections Control Programme says there are just 1,800 health workers trained to care for the estimated 170,000 Kenyan children living with HIV.

I know how to use a condom ... I have accepted my condition and I try to make other children and adults also just accept our condition.

According to Faith Oriwo, a field coordinator at EGPAF, the support groups have been instrumental in addressing the special needs of children living with HIV. "HIV-positive children have different psychosocial support needs from those of HIV positive adults; they need a platform to play freely with people they are comfortable with, especially when they are children whose HIV-positive status is known to many people and which might create stigma," she said.

"Giving them the opportunity to share, helps to reduce stigma amongst them because they realize they are not alone and they are not any different," she added.

Oriwo noted that the behavior change communication imparted to the children would hold them in good stead as they transitioned to adulthood and began to deal with sexual matters.

Fourteen-year-old Patience*, who says she is already sexually active, has received education on reproductive health and condom use, and is a peer educator at her school.

"The counselors have taught me things about how I can stop being pregnant... I know how to use a condom," she said. "I have accepted my condition and I try to make other children and adults also just accept our condition."

Frederick Nyumba, officer-in-charge of the Mulele health centre, a government health facility in Vihiga, says the benefits of the groups extend beyond the psychological.

"When children are in such support groups, drug adherence is extremely good because the children act as guardians to each other by reminding their fellow children to take their medicine or remind their old grandmothers to give them drugs," he said. "This networking amongst them means it is not only easy to trace defaulters but also to keep tabs on one another's wellbeing."

The groups also aim to foster economic independence among the children; every time they meet, the children contribute a shilling (1.2 US cents) each and their guardians contribute what they can; the money is used to buy goats that are given to the children's foster families on a rotational basis.

"Now I have a goat at home and my grandmother is happy with it. I know it will produce some more children and then I can sell [them] and pay my school fees when I reach secondary," said Cedric.

To ensure the children are raised in healthy environments, Zingatia Maisha also teaches foster families how to care for HIV-positive children - from adherence to drugs, to how and when to disclose a child's HIV status to them.