Disclosing HIV diagnosis to infected children: A health care team's approach

Abstract

Telling children that they have HIV is a one of the most difficult psychosocial issues for parents and professionals caring for children with HIV. The literature presents three primary reasons for this: concerns for children's emotional well-being, fear that children will not be able to keep the secret within the family and maternal fear of blame when the virus is transmitted from mother to child. Through research and clinical experience, our HIV team has developed strategies for balancing the needs of parents and children through the three major stages of disclosure: pre-disclosure preparation; the disclosure event and immediate support; and post-disclosure: ongoing assessment, support and information. Before children are told about their HIV, we provide them with health information through partial truth-telling, building gradually upon their knowledge about their health while supporting their parents as they move towards disclosure. We provide support and information during the disclosure event, as planned with parents, and ongoing support after disclosure, as children gain knowledge and understanding of their health and HIV issues. We discuss issues such as multi-disciplinary communication and delayed disclosures.

Keywords:

• Children
• disclosure
• HIV

Acknowledgements

This paper was prepared with the research assistance of Elizabeth Seary, The Hospital for Sick Children, Toronto, Ontario, and the editorial assistance of Sharon Nancekivell, Guelph, Ontario, Canada. Maria McDonald LLB, MHSc (Bioethics) provided consultation on ethical issues.