Swaziland Adolescents Work Toward an HIV-free Generation
By Heather Mason
“Now that I am growing up, or have grown up already, I might be starting dating,” says Mbongeni Dlamini, a 21-year-old living with HIV in rural Swaziland. During most of his teen years, Dlamini wondered if he would ever ask a girl to go out with him.
When he was 17, Mbongeni became a founding member of a support group for young people living with HIV. Sponsored by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), the Mkhuzweni psychosocial support group began in 2010 with three members—and has since grown to more than 100.
Psychosocial support (PSS) groups are open to children and adolescents between the ages of 8 and 19, as long as the children are aware of their HIV status. Over the years, older participants have begun to take on leadership roles, teaching the younger children about HIV/AIDS stigma, adherence to antiretroviral medications (ARVs), nutrition, disclosure of HIV status, and other issues.
Mbongeni continues to attend the group today and acts as a role model for younger participants.
“I always teach the youngest and say, ‘you should take care of yourself and continue living. It doesn't matter that you're HIV-positive, life is still going on,’” says Mbongeni.
Mbongeni learned about his HIV status in 2008, when he was 16 years old. “Some people would put me down and be scared of me,” Mbongani explains. But joining a children support group, even though the group was small at first, gave Mbongeni and the other members a chance to share with each other and understand that they were not alone.
“It has really helped me to attend the support group,” says Gcebile Tsabedze, 19, also one of the original members of the Mkhuzweni PSS group. “At first, I felt like, ‘why am I the only child [living with HIV]?’ Even in the community I did not know any other child living with HIV. But by attending the support group I came to know that I am not the only one. This encourages me to say I should press on.”
“The main goal for EGPAF is PMTCT [prevention of mother-to-child transmission of HIV],” says Fikelephi Mazibuko, program officer at EGPAF-Swaziland. “But we are very aware that some kids still get infected, for many reasons. We go an extra mile to take care of those kids.”
“We are aware that there is still stigma and discrimination out there,” says Mazibuko. “But we are capacitating [the children] on how to address people who are looking down on them because of their HIV status.”
In addition to the monthly PSS meetings, EGPAF—along with the Baylor Pediatric AIDS Initiative and Young Heroes—organizes residential camps for HIV-positive kids during school holidays. The camps give children from the PSS groups a chance to get away from their home environments and share experiences with other HIV-positive children from around the country.
“We try to have fun with them, play with them, and give them the opportunity to just be a child, for once in life,” says Fikelephi, who the children call “Auntie Fikso.”
“We know that most of these kids are parentless, so they haven't experienced the love of a parent. That is what we are trying to restore in their lives.”
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Equipping the Caregivers
In order to have the greatest impact on the lives of children living with HIV, EGPAF must also reach the children’s caregivers, many of whom are living with HIV themselves, and many of whom lack critical information about how to take care of kids with HIV.
“Educating the children alone will not have that much impact in the child's life, because the child is going home to live with the caregiver who is not knowledgeable like the child,” says Fikelephi. “We want full support from that parent or caregiver, to update them on how best they can take care of the child who is living with HIV.”
Through the children who attend PSS meetings, EGPAF sends home invitations to quarterly support meetings for the children’s caregivers. In this way, entire families are educated about HIV stigma, adherence to ARVs, disclosure, nutrition, and other issues surrounding life with HIV.
“Having the PSS program has really helped me with my child,” says Mbongeni’s mother, Fikile Dlamini, 52. “I encouraged him to join the children's support group and explained how it was going to help him.
He went there and ever since he started attending the children support group, he never gave me any problem. He understands more than what I know from attending the childrens' support group.” Fikile, who is also HIV-positive, has attended the EGPAF caregiver support group.
“Gcebile is getting lessons at the support group, and when she comes back she gives us feedback on the things she has been discussing,” says Girlie Mokoena, 64, Gcebile’s grandmother. “Some of the issues are issues that we as grandparents cannot address.”
Girlie and her husband, Jackson Shabangu, 59, have been Gcebile’s caregivers since Gcebile’s mother died in 2006. Both Girlie and Jackson are also living with HIV.
“The support group has been of great help even to me, because we are so united as a family,” Girlie says. “ We tend to remind each other when it is time to take meds.
“I have learned something, because my grandchild told me we shouldn't fear telling people about our status. Every time Gcebile is with other kids, she opens up a lecture saying it is very important to tell people about your status. It is very encouraging.”
Student Becomes Teacher
Today, five years into the PSS program, teenagers who were among the original members of the PSS groups have become young adults. Lessons that the older PSS participants learned as children are staying with them as they enter adulthood.
“I am very aware that before doing anything with my partner, I need to disclose [my HIV status] to her,” says Mbongeni, “but only once I'm very sure that I'm going somewhere with this person. If she accepts me for who I am, it's fine.”
While the PSS program is still focused on issues relating to young children and adolescents, Fikelephi acknowledges that the program will positively impact Swaziland’s PMTCT program as these HIV-positive adolescents grow into adults. If young adults with HIV are properly educated and supported, they will not pass HIV on to their own children.
“From my own experience, I can tell that this program has a positive impact on these children's lives. You know that they have the facts. Moving forward, in five years to come, I'm seeing an HIV-free generation,” says Fikelephi.
“We are hoping that the information that [the adolescents] have, and the knowledge that they have relating to HIV issues, will help them when they are adults. These young couples will be able to know what is expected of them and they will know that they need to support each other as a couple, throughout their lives.”
Leadership in the PSS Program
As the PSS program grows and evolves, EGPAF is working to ensure it becomes sustainable in the long term. Older members, like Mbongeni and Gcebile, are taking on more responsibility at the PSS meetings, facilitating activities and acting as role models to younger children. Fikelephi foresees a day when EGPAF will be able to step back from the PSS groups, handing leadership over to the young adults who have “graduated” from the program.
“[Mbongani and Gcebile] have taken it upon themselves to say, ‘I can't miss the meeting,’” says Fikelephi. “Even if they are held up they will call to say, ‘Auntie, I can't make it, how best can we handle this? They are prioritizing the children's meetings above any other thing.”
Fikelephi also notes that young children in the PSS groups often connect more easily to the older youth, rather than to EGPAF program officers or facility staff members, as they know the teenagers are speaking from experience. “When [the children] hear another child, especially a teenager, talking the facts, they take it so positively,” Fikelephi says.
“The children think, ‘If Mbongeni is saying and doing this, then I can also say and do it.’ They don’t know if we—the officers who are helping them—are also HIV-positive. But having someone of their age, someone whom they know is living with HIV and taking medication—they feel like he or she is a life testimony.”
Gcebile recently attended a leadership training course, sponsored by Baylor, where she trained to become a teen leader for PSS group meetings.
“I want to get more knowledge about HIV and other issues so I can help other kids out there, like Auntie Fikso is doing,” says Gcebile. “I want to work with an organization that will pay back to the community by helping children with HIV… so they understand that being HIV-positive doesn't change who you are. There is still life after knowing your HIV status. It is up to the individual to choose life.”
In 2010 as part of its Community Linkages program, EGPAF-Swaziland began forming psychosocial support (PSS) groups for children and adolescents with HIV. Today, EGPAF is supporting eight children’s PSS groups – some of which have more than 100 members – around the country. The PSS groups, which Fikelephi oversees, meet once a month at EGPAF-supported health clinics, and help HIV-positive children and their families to deal with the challenges of living with HIV.
Eliminating mother-to-child transmission of HIV, with the ultimate goal of creating an HIV-free generation, is the primary focus for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) in Swaziland. However, creating an HIV-free generation in Swaziland will require much more than counseling pregnant women and administering antiretroviral drugs.
To create a long-term, sustainable impact on the HIV epidemic in the country with the highest HIV prevalence in the world, EGPAF must work not just with pregnant women, but with entire communities.
To this end, EGPAF-Swaziland’s Community Linkages program seeks to engage communities in dialogues about HIV. In addition to women, EGPAF’s outreach targets community leaders, male partners, caregivers, and children, who hold the keys to Swaziland’s future.