Talking to children about HIV: advantages of HIV disclosure
Anggraini Alam
Infection Tropical Diseases of Child Health Department, Hasan Sadikin GHFaculty of Medicine Universitas Padjadjaran HIV Task Force of IPS
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. 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%. 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.
HIV disclosure is widely known to be challenging for HIV-positive parents and healthcare professionals. Understanding and executing the disclosure process appropriately is key to assuring good outcomes in both parents and children. Some key models for disclosure of a child’s HIV status include the four-phase model (Tasker, 1992), the Blasini et al. (2004) model, and a recently published model by Lowenthal et al. (2014). The World Health Organization (WHO) has developed guidance for health care workers on how to support children up to 12 years of age and their caregivers with disclosure of HIV status (2011). Partial disclosure is appropriate for children up to early adolescence. Full disclosure is suitable for adolescents.
Most studies in are country-specific, indicating a need for a regional scope. For these reasons, disclosure must be tailored to children’s own understanding of their illness and its impact on their life.
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