HIV positive adolescents want to be accepted as they are
April 2013 - The fig trees blossoming bright white and yellow flowers are not real, but what they symbolise is real.
“We call them trees of hope,” says 18-year-old Tina. “They were hard work to make. We used wires for the trunks and antiretroviral drug boxes for the flowers. The flowers are our future.”
Tina stretches out on the sun burnt lawn, looking like a carefree teenager. She has taken time to colour coordinate her clothes, which fit her well. The sky-blue hair band holding her neatly combed hair matches the top which she wears with a black layered skirt and black canvas flat shoes.
She appears more confident than most girls her age. “I want to have five children; it’s not that many really,” she says with a smile. “And I want to be a human resources manager. I just love strategising and organising.”
Yet Tina, not her real name, is HIV positive and is now on antiretroviral treatment (ART).
Zimbabwe’s HIV prevalence rate is 14.3 per cent. There were an estimated 105,740 children living with HIV in Zimbabwe at the end of 2009, with about14,957 children (0-14 years) newly infected in the same year. It is believed that 3.2 per cent of the HIV cases are vertically transmitted, which is how Tina became infected with the virus.
Tina needed support to allow her vibrant personality to emerge. She gives credit to a project run by an NGO called AFRICAID, assisted with funds from UNICEF, set up in 2004. Some 1,300 children and adolescents (aged 7-22 years) living with HIV from over 17 communities in Harare, Zimbabwe’s capital, have benefitted from counselling and medical care by specially trained professionals. They also have the opportunity to join support groups in their areas where they can share their experiences with peers. In addition they receive visits in their own communities by trained peer educators, who are also HIV positive. “My life became a lot easier when I came here,” Tina says, referring to Zvandiri House, the resource centre where the supports group meet and receive training. Its name means “As I am” in Shona.
“Many young adolescents benefitting from AFRICAID became infected through vertical transmission (from mother-to-child),” points out Judith Sherman, UNICEF HIV and AIDS officer. “It is a challenging time in their lives and they need extra support. This project is particularly effective because it is led by HIV positive adolescents themselves.”
Mather Mawodzeke, the coordinator of the project, outlines some of their special needs. “Many are orphans living with extended families who feel that their responsibility to provide for them ends at 16 years of age.” Yet, like Tina, these adolescents often perform poorly in their exams due to sickness and lack of resources, so they have limited job opportunities.
Disclosure of status is another difficult issue. “We tell them the advantages of disclosure, as well as the importance of using condoms, or abstinence. Most of them want to have children, so we advise them about the PMTCT programmes and safer sex when their viral load is low.” She adds, “We equip them with knowledge on HIV treatment, nutrition, sexual and reproductive health and positive living. If you have HIV you need to be in control.”
Felicitus Ngubo, the nurse at Zvandiri House, notes that it is often hard for the young people to achieve control over their lives. “They sometimes don’t get love where they are living. They don’t really want to have sex, but they want love, so they don’t disclose their status.”
There are now 16 pregnant teenagers and two young mothers in the Zvandiri support group. “Others have lost their babies due to lack of parenting skills. They have had a disrupted childhood themselves, and often have problems with shelter and food.”
The nurse, who sees about 30 HIV positive adolescents a month, says that many are poorly nourished even though they should have extra nutritious food due to their status and especially if they are on treatment, pregnant or breastfeeding.
In addition, nurse Ngubo says that some find it difficult to adhere to treatment. “Many walk long distances to get their monthly drug supply or have to travel with their family and think they will get home in time before their supply runs out, but they don’t. As a result, an increasing number experience problems with resistance to their drugs and have had to go on to second line treatment.”
“They also suffer from skin conditions because of poor personal hygiene due to lack of soap and limited water in their homes.”
Once referred to the project after testing HIV positive, the adolescents who “show enthusiasm”, like Tina, are trained as peer educators, explains Mawodzeke, who is also a social worker. “The peers are best placed to tackle the many issues that HIV positive children and adolescents have to deal with.”
Tina is proud of a colourfully illustrated book called “Our Story”, in which she and her peers have written about their experiences. It also contains child-friendly information about HIV and AIDS. More than 10,000 copies have been distributed through clinics.
Mawodzeke comments that Tina is a “good peer educator”, adding “when she was referred to the project in 2005, Tina was withdrawn and lacked confidence; she had lost hope. Now she is bubbly and has dreams.”
Tina regularly visits 15 HIV positive adolescents in their homes, using age-appropriate illustrated books and games about issues such as disclosure of status, treatment and adherence to antiretroviral (ARV) drugs. Tina also checks their pill boxes to see whether the pills are being taken correctly and that the right number of pills for a month’s supply is left. In addition she informs them about “HIV positive adolescent-friendly corners” set up in clinics throughout Harare. There, they can talk to peers about health issues and watch programmes on television about reproductive health while they wait to be treated by a specially trained nurse.
It is easy for Tina to empathise with her peers. She has her own problems, the main one being her home life. “My father died when I was still at crèche, my mother died when I was in grade five (primary school) and my brother (her only sibling) died one week later.”
Since they died, all probably due to AIDS-related illnesses, Tina has been on the move. “I’ve been living with an aunt for two weeks, but in two weeks time I have to move again to my uncle’s home.” She hesitates. “There are issues. I guess... nobody really wants me.”
“I also don’t want to be with my uncle. He shouts at me in front of strangers, like the lodgers in the house. He says the reason I’m so confused is because of the antiretrovirals. This is involuntary disclosure of my status,” Tina says, adamantly.
Tina is at her happiest when she talks about Zvandiri House and the support group there. She points to a group photo of them on the wall. “She is now a mother and he has passed away,” she comments. “All my friends are at Zvandiri House. I don’t have friends from outside, only from here.