Do Chinese parents with HIV tell their children the truth? A qualitative preliminary study of parental HIV disclosure in China

Background With the extended lifespan of people living with human immunodeficiency virus (HIV) due to the advent of antiretroviral therapy, the disclosure of HIV serostatus to their uninfected children is becoming more critical. However, limited data are available regarding parental HIV disclosure to children in China. We explore patterns of parental HIV disclosure and the reasons for disclosure or non-disclosure to children. Methods A preliminary study was conducted using open-ended questions in Guangxi, China in 2011 with 39 parents living with HIV. Results A majority of participants (77%) had not disclosed their HIV serostatus to their children. Participants who voluntarily disclosed tended to be older and were more likely to disclose to their adult children. Among parents who disclosed, reasons included a need for emotional and financial support, as well as feelings of obligation to their children. Among non-disclosing parents, primary reasons included concerns that children were too young to understand, fear of being stigmatized, and fear of increased psychological burden to children. Conclusions Few parents with HIV disclosed their HIV status to their children. These data indicate the need for future research to explore disclosure issues in relation to children's age and the implementation of developmentally appropriate interventions and support systems for parents and children affected by HIV in China.