Paediatric HIV disclosure in South Africa -- caregivers' perspectives on discussing HIV with infected children.

Abstract

Most paediatric HIV infections in South Africa are transmitted perinatally. Lack of widely available HIV treatment means that most children do not survive to an age at which disclosure becomes a relevant concern. However with the expansion of HIV treatment programmes the proportion of HIV-infected children surviving to an advanced age is likely to increase substantially during the next 5-10 years. A similar phenomenon was observed in Europe and North America with the advent of antiretroviral therapy (ART) in the mid-1990s and in resource-rich settings approximately half of perinatally infected children are expected to survive beyond 13 years of age. While guidelines on the discussion and disclosure of HIV infection among adult patients have received considerable attention there are no such guidelines focusing on the disclosure of paediatric HIV infection in South Africa and other resource-limited settings. Yet in many respects disclosure and discussion of paediatric HIV infection may be more complex than with adult infection. Research from the USA and Europe has shown that when and how a parent discloses to a child can affect the provision of care for the child and may influence the childs psychosocial adjustment and development. Beyond the parent-child relationship public disclosure of a childs HIV status can have significant impact on children and families. Particular sensitivity is required in the case of larger families or households that include both HIV-infected and uninfected members. As HIV infection remains highly stigmatised in many communities disclosure of paediatric HIV infection may also be accompanied by threats to the childs physical and/or psychological health. (excerpt)