Diagnostic Disclosure to HIV-Infected Children: How Parents Decide when and what to Tell

Abstract

The objective of this study was to assess parental decision-making about illness disclosure to human immunodeficiency virus (HIV)-infected children. This is a cross-sectional study of 51 children with HIV infection based on parent interviews, child cognitive testing, clinical assessments and medical records. Only 43% of children had been told their HIV diagnosis. Qualitative analysis of parental decision- making about illness disclosure varied by child developmental level. Factors influencing parental decision to disclose the child’s HIV status including parental communication style, parental illness, child’s rights, treatment adherence, child questions and provider pressures, whereas concerns about HIV stigma and potential emotional distress were most frequently identified as reasons for non- disclosure. Central decision-making factors for parental HIV disclosure and reported outcomes of disclosure are described. Pediatric HIV disclosure represents a complex task for parents caring for the HIV-infected child, one in which the child’s development and the family’s community should be considered in the setting of a potentially stigmatizing infectious illness.