During the month of May, IMPACT will be highlighting USAID’s work in Global Health. From May 18-27 we will be focusing on an AIDS-Free Generation.
As a public health practitioner and as a physician, I have seen the challenges that pediatric HIV brings to communities and to families. But I have also seen first-hand the positive, transformative effect that disclosing an HIV status can have. One case from my medical practice stands out as an example:
A grandmother brought in her seven-year-old grandchild, who had been orphaned by AIDS, for emergent care. At the clinic, we discovered that the child was HIV-positive, and we provided the grandmother with medication and dosing instructions. Not long after, the grandmother and her grandchild returned to the clinic. Because she did not know she was HIV-positive, the child was beginning to rebel against taking her medication and was getting very sick again. After careful consideration, it became clear to me, as her physician, and to her grandmother, that it was time to disclose her HIV status to her to help this child become adherent to her medications. Through a collaborative process, the child’s grandmother and I were able to help her understand that she had an illness and that it was very important to take medication so that she would continue to feel good. It was through this process of disclosure that the child was able to begin living positively.
Statistics from the World Health Organization show that across the world there are approximately 1.3 million children under the age of 15 living with HIV. These children will need anti-retroviral therapy and medical care for their entire lives to stay healthy. There’s a conflicting factor, though—many of these kids don’t even know they have HIV.
Children and adolescents knowing their HIV status is important for the global goal of “getting to zero.“ Some studies show that pediatric HIV disclosure at a younger age decreases mortality due to HIV by half among adolescents. Other studies show that disclosure can increase medication adherence by 20 percent. These positive results highlight the importance of pediatric disclosure for living longer, healthier lives.
Disclosure can also play an important role in the psycho-social development of children living with HIV. Early disclosure may decrease anxiety and depression in kids, and make them feel more normal. Overall, disclosure holds great benefits for a child’s ability to engage and maintain medical treatment.
Although the process of pediatric disclosure is important for a child’s health, it is also complex. Many children who are HIV-positive live with other family members who are also positive. This makes disclosure very sensitive and personal. Disclosure also makes a child’s role in his or her own treatment important, and not all children are ready for this kind of responsibility. For these reasons, disclosure must be tailored to children’s own understanding of their illness and its impact on their life.
The AIDSTAR-One Pediatric and Youth Disclosure Materials (examples below) are designed to help tailor the disclosure process to a child’s specific needs. They are intended to be interactive and to encourage discussion among the child, his or her caregivers, and health professionals. The color booklets and accompanying cue cards are easy-to-read, and suited for children of varying ages. They will be printed in French, Portuguese, and Xhosa.
HIV programs can also use these materials as guidelines for establishing HIV disclosure interventions for their own populations. The materials can be used by health care workers, parents, caregivers and children together, throughout the disclosure process to ensure disclosure is completed appropriately and supportively. Just like the seven-year-old grandchild and her grandmother, all children and their caregivers deserve an appropriate disclosure experience; these materials will help other children with disclosure and encourage them to live longer, healthier lives.
AIDSTAR-One is funded by PEPFAR through USAID’s Office of HIV/AIDS. The project provides technical assistance to USAID and U.S. Government country teams to build effective, well-managed, and sustainable HIV and AIDS programs.
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