Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the Era of HAART in South Africa

The aim of the study was to explore the decision to and the process of disclosure of parental HIV status to children. Focus group interviews were conducted with 21 parents of 39 children aged 7 - 18 years. Participants were recruited from a highly active antiretroviral treatment (HAART) program of an academic hospital in South Africa. Parents disclosed more to older children than to younger children in the same family, and the breadth and depth of the information shared was depended on the age of the child. Communication with adolescent children included topics on HIV prevention and unsafe sexual practices. For parents with a long history of sickness, disclosure occurred soon after the diagnosis was made, when they had not commenced with antiretroviral treatment (ART). They disclosed to prepare their children for HIV related emergencies and imminent death. Parents also expected support from their older children after disclosure. Some parents were forced to disclose because children suspected their HIV status, and parents could not continue to hide symptoms like severe weight loss. In addition, parents disclosed to educate children on how to protect themselves from HIV infection. For most parents, disclosure was unplanned, emotive, and burdened with anxiety and fear of rejection by their children. However, when the decision to disclose was made, parents were honest and open and informed their children that they were HIV positive. Parents may benefit from disclosure support services, and health care providers can assist parents in deciding when and how to disclose.