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I heard about Aimable,* a smiling eight-year-old boy who loves soccer, from a health provider at Rwanda’s Rubungo Health Center. He is one of 40 children who receive HIV treatment and care at the center’s pediatric palliative care ward.
Five years ago, Aimable’s mother died from an AIDS-related condition. He was tested and found to be HIV-positive. Aimable’s father assumed his son would soon die like his mother, so he took Aimable’s siblings and moved to Uganda. Aimable’s grandmother took him to the Rubungo Health Center, where he was diagnosed with malnourishment, rashes, a respiratory infection, and other health complications. He was also immediately started on antiretroviral therapy (ART), and his condition quickly improved.
Today Aimable is as healthy and energetic as many of his peers. He has not yet been formally told, however, that the medication he takes every day is for HIV and what this means for his life.
“When I ask the children to explain in their own words why they are taking medicine, they say it is because of a cough, intestinal worms, or some other ailment. It’s not time to explain the real reason,” says Jeanine Umutoni,* a health provider at Rubungo Health Center, adding that they aim to tell children about their diagnosis around age eight, depending on the child’s capacity to comprehend.
Last year, Marie Donahue, a pediatric nurse practitioner with a passion for pediatric HIV care and 20 years of experience, visited the Kibagabaga Hospital here in Rwanda with me and several of my colleagues. Afterward, she wrote a blog, “How, and When, Do You Tell a Child She is HIV-positive?” affirming the guidance offered by the Rwandan pediatric guidelines, which advise disclosing a child’s HIV-positive status when the child is eight years old.
For Aimable that means this year he will learn his HIV-positive status at a group session that will include his grandmother and other HIV-positive children and their guardians.
For Jeanine, it is one of the hardest parts of her job.
“When I tell children they are HIV-positive, I have to prepare myself for reactions from both the parents and children. It’s hard for everybody,” Jeanine says, explaining that many parents cry quietly at the back of the room during disclosure. Initially, some children will ask many questions but later may become withdrawn and depressed in the following days and weeks.
Jeanine explains the importance of telling children about HIV in a way they can understand. In Rwanda, health providers use a picture book to help children learn about good cells, or antibodies, and how they protect us from getting sick. The book also teaches children about a virus called HIV that can get into the blood, multiply, and attack the good cells that protect people. The children are taught that people with HIV, like them, take medicine to help their good cells fight the virus. If the children take their medicine every day they will be healthy, but if they stop taking the medicine, the virus will multiply, attack their good cells, and make them sick.
The picture book also explains where HIV comes from, how it is transmitted, and the importance of confidentiality—telling only one’s guardians and health provider about the virus. During the session and in subsequent conversations, Jeanine reassures the children that they can still greet family and friends with a handshake, hug, or kiss; share food; go to school; and live happily.
Before the pediatric palliative care ward opened at Rubungo Health Center, Jeanine says that HIV-positive children and adolescents only visited the center for medication. Many had little support in coping with the realities of living with HIV.
Now, the center hosts two monthly support groups. When the groups gather, the children play, dance, share food, and talk about their hopes and fears with their friends in the group. Health workers use these gatherings as an opportunity to check in on each child and record their height and weight. Jeanine says a support group helps these children “feel valued and loved…It gives them courage to take their medicine, to continue their studies, and to hope for a better future. It motivates them.”
During the support group meetings, children and adolescents are taught the importance of keeping their monthly ART appointments and are encouraged to visit the health center more frequently or contact health providers between appointments, if they have questions.
For Aimable, the medication and the support groups have completely changed his life. “It makes me so happy to see Aimable today. He is a radiant, happy child with so much hope for the future,” Jeanine says.
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