Disclosure of the diagnosis of HIV/AIDS to children born of HIV-infected mothers

AIDS Patient Care STDS. 1999 Jan;13(1):41-5. doi: 10.1089/apc.1999.13.41.

Abstract

HIV disease in perinatally infected patients is now treated as a chronic illness of childhood. The effective use of highly active anti-retroviral therapy has contributed to the improvements in the prognosis of this illness. As this population matures, the issue of disclosure of diagnosis becomes more significant and part of their comprehensive medical care. The importance of disclosure relates directly to medication adherence, treatment compliance, sexual exploration, fears associated with premature death, and the child's developing autonomy. disclosure of HIV disease to an infected child poses complex issues, such as transmissibility, maternal guilt, more than one family member with the virus, and the potential for social stigma and isolation, among others. A change in perspectives is currently taking place regarding the process of disclosure, whereby it may be approached as a gradual discussion process over the life of the child. A method of gradual and partial disclosure to the child with consistent support by a multi-disciplinary team of providers has been a successful strategy for many children cared for at the New York Hospital-Cornell University Medical Center. Of 73 perinatally HIV-infected children who are 6 years of age or older, 41% have had complete disclosure and another 19% are partially disclosed. Continuous communication and negotiation among the members of the team, which includes the parents and caregivers, are vital to the gradual process leading to complete disclosure.

MeSH terms

  • Child
  • Guilt
  • HIV Infections / psychology*
  • Humans
  • Parent-Child Relations
  • Prejudice
  • Truth Disclosure*