Current practices around HIV disclosure to children on highly active antiretroviral therapy

Abstract

Background. The introduction of antiretroviral therapy (ART) for children has resulted in survival into adolescence. This is associated with the challenge of disclosing HIV status to infected children.

Objectives. To establish whether HIV disclosure had occurred, the process of disclosure or reasons for non-disclosure, and the effect of disclosure on the child’s understanding of their disease and adherence.

Methods. Interviews were conducted with the caregivers of 100 HIV-positive children, aged 8 - 14 years, who were on ART for >1 year to determine if disclosure had occurred. Where disclosure had occurred, these children were interviewed.

Results. Disclosure had occurred in only 27 patients. The age and gender of the caregiver and their relationship to the child did not influence the likelihood of disclosure. The educational level of the caregiver and the number of admissions of the child were both associated with disclosure. Disclosure did not improve adherence, as reflected by an increased CD4 count or reduced viral load.

Conclusion. HIV disclosure to children on ART remains less than optimal despite the presence of both national and international guidelines. Caregivers cited fear on the part of the child and fear of being blamed for their illness as the main reasons that they do not disclose. Of the children who knew their status, 76.9% had already suspected that they had HIV.