Disclosure of HIV status to HIV-positive children 12 and under: A systematic cross-national review of implications for health and well-being

Abstract

WHO estimates that 3.4 million children were living with HIV at the end of 2011, 91% of them in sub-Saharan Africa. Until recently, a largely descriptive literature documented wide variability in the practice of disclosure to children and youth, describing both positive and negative effects of disclosure on children, inconsistency in the mean age of first disclosure, and indicating a variety of health- and non-health-related rationales for disclosure or non-disclosure. While several reviews have described disclosure practices, to our knowledge, none has systematically examined the outcomes of disclosure, pre- to post-disclosure, or comparing outcomes for children disclosed to with those for children unaware of their HIV status. Such a review may identify variability or consistency in outcomes across cultures and identify gaps in the literature to date. A systematic review of cross-national, peer-reviewed literature was undertaken to clarify effects on children's health and well-being of disclosure of their HIV status to them. Summarizing 14 studies representing over 3300 HIV-positive children from 10 countries or commonwealths, there is evidence of health benefit and little, if any, evidence of psychological or emotional harm for disclosure of HIV status to HIV-positive children. In at least one longitudinal study, the age at which disclosure occurred dropped as treatments advanced, to age 6–7, with age 7 as the universal age for informed assent and the cognitive and emotional school age recommended for disclosure of many serious illnesses. Despite significant gaps in the review that limited the extent to which comparisons across studies could be made, our findings show that there is evidence of health benefit and little, if any, evidence of harm for disclosure of HIV status to HIV-positive children.

Keywords:

• disclosure
• HIV
• AIDS
• children
• pediatric

Acknowledgements

The authors thank research assistants Jamille McLawrence, Esther Muslumova and Chioma Okoro and health librarian John Carey of Hunter College, City University of New York, for their work on this project.

The current systematic review was part of a series of qualitative and quantitative investigations, and expert research, clinical review and consultation that supported development of World Health Organization guidance on disclosure of caregiver or child HIV status to children 12 and under. The authors are grateful to Anniek De Baets and Julie Murugi, WHO Consultants, for the work they did on this project. Appreciation is extended to the chair, Lorraine Sherr, and all members of the WHO guidance group that worked on the disclosure guidelines (see list of members on http://www.who.int/hiv/pub/hiv_disclosure/en/index.html).