Challenges to disclosure of HIV status to perinatally infected children: a study of caregiver perspectives in Pune, India

Effective guidelines around disclosure of HIV status are lacking and limited data from India reveal low rates of HIV disclosure to perinatally infected children. This study, conducted in Pune, India, attempts to understand the experiences of caregivers of perinatally infected children around the HIV disclosure process. We interviewed 98 caregivers whose children were receiving care at the ART clinic of a large government hospital. Caregivers report that 23% of HIV+ children had been told of their HIV status. Older caregivers had higher odds of disclosure as well as those who were widowed, had limited formal education, and who worked as maids/servants. Older children (14 years+) had higher odds of being disclosed to. Major themes from qualitative data included uncertainty among caregivers about disclosure, concerns about the child's well-being after disclosure, and an overall lack of guidance around disclosure. Significant concerns related to perceived and experienced stigma and discrimination as well as the child's marital future contributed to caregivers' willingness to disclose. There is need for the development and testing of behavioural interventions in India to guide health care workers and caregivers in appropriate disclosure to HIV-infected children, with the ultimate goal of informing national guidelines for pediatric HIV disclosure in resource poor settings.