Therapeutic factors influencing the disclosure process of human immunodeficiency virus (HIV) status on perinatally infected children and adolescents in Manitoba

Abstract

Most cases of pediatric human immunodeficiency virus (HIV) are perinatal infections that are vertically transmitted from mother to child. Since these children can live longer with antiretroviral therapy, more emphasis has been placed on increasing their quality of life. In Manitoba, children born with HIV are typically from immigrant or refugee families, Indigenous communities, and/or in the foster care system. Health care providers disclose the child’s HIV status on a case-by-case basis, but there are no specific guidelines for this Manitoban population. The World Health Organization (WHO) and the American Academy of Pediatrics (AAP) provide the current recommendations for disclosure to children and adolescents with HIV, but do not provide specific information regarding culturally diverse populations. Phone interviews were conducted in a subset of children perinatally infected with HIV in Manitoba to determine therapeutic factors that influence the HIV disclosure process. A comparison of the results to the WHO and AAP guidelines showed similar aspects. Each participant had a unique disclosure process that was tailored to their situation. However, it was difficult to determine the exact factors that contributed to the disclosure process due to the limited data collected. Sufficient supports appeared to be in place for these children throughout the disclosure process as no major concerns were voiced. Due to logistics and time constraints, interviews with Indigenous participants were not completed. Further research with the caregivers and health care providers are needed to provide additional perspectives in the disclosure process.