Many HIV-infected children in Kenya not told of their status

Low rates of children in western Kenya are being informed of their HIV status, according to study findings published in the Journal of the Pediatric Infectious Diseases Society.

“Disclosure is a necessary component of the transition from childhood to adulthood for HIV-infected children, yet resource-limited settings may not be prepared for the process of telling HIV-infected children and adolescents that they have HIV,” researchers wrote.

The study included 270 HIV-infected children aged 6 to 14 years enrolled in HIV care at a large referral clinic. Questionnaires were given to participants and their caregivers to assess disclosure status, ART adherence, stigma and depression.

Researchers found that 11.1% of participants were informed about their HIV status. Of those, 3.3% aged younger than 10 years knew their status, and 9.2% of participants aged 10 to 12 years and 39.5% of those aged 13 to 14 years knew they had HIV.

Rachel Vreeman

“In this large HIV care system in Kenya, we found that few children had been informed of their HIV status,” Rachel Vreeman, MD, MS, of Indiana University School of Medicine told Infectious Diseases in Children. “Disclosure was more common as children got older, but most of the adolescents still did not know they had HIV. Disclosure was not associated with negative emotional or social effects on the children, but this needs to be investigated further.”

Dr. Vreeman also notes that long-term pediatric HIV management requires guiding families through a gradual, developmentally and culturally appropriate disclosure process. In an accompanying editorial, Elizabeth D. Lowenthal, MD, MSCE,of The Children’s Hospital of Philadelphia, and Tafireyi C. Marukutira,MD, MPH, of Botswana-Baylor Children’s Clinical Center of Excellence, said although there are known benefits of disclosure of HIV status to infected children enrolled in care does not routinely occur.

“Barriers to disclosure to the child include lack of disclosure to other adults within the family, concerns about the child’s ability to cope with the information, and fears about isolation and stigmatization if disclosure to the child were to lead to others in the community being aware of the child’s/family’s status,” they wrote. “Prior to disclosure to the child, potential risks to the family must be recognized, evaluated and minimized. Health care professionals must be trained to support families during the disclosure process.”

For more information:

Lowenthal E. J Pediatr Infect Dis Soc. 2013;doi:10.1093/jpids/pit026.

Turissini ML. J Pediatr Infect Dis Soc. 2013;doi:10.1093/jpids/pit024.

Disclosure: The researchers report no relevant financial disclosures.