Perspectives on disclosure among children living with HIV in India

Background Following the widespread uptake of anti-retroviral therapy (ART), young children living with HIV are entering adolescence and beyond, necessitating disclosure of HIV status. However, few studies have described children's experiences following disclosure. Methods We assessed disclosure status among children attending HIV clinics at two tertiary-care centers in southern India. Children who had disclosure were administered a pre-tested questionnaire assessing their knowledge about HIV, ART, experiences following disclosure, perceived stigma and ideas about their future. The association of the children's responses with social desirability bias was examined using a modified social desirability scale. Results Twenty-four caregiver-child dyads participated in this study. They constituted a subset of children who had been told of their HIV diagnosis from a larger study of 247 dyads. Mean age at disclosure was 10.9 ± 2.5 years. Medical personnel were responsible for disclosure to 14 children, parents/caregivers to 3 children, both medical and care personnel together to 4 children and other relatives to remaining 3 children. Disclosure was met with acceptance by one-third of the children. Despite disclosure, five children did not know how HIV spreads, and three were unaware about how infection could be prevented. Notwithstanding their positive status, 20 children felt that they were treated well at school and by their immediate relatives, although 11 children mentioned that they needed to hide while taking ART. Social desirability bias did not play a role in the responses given by these children. Conclusions The rate of disclosure of HIV status among children living with HIV in India was low, even among older children. Most children accepted their status, but knowledge about HIV and ART was inadequate. Disclosure was predominantly performed by medical personnel, rather than the primary caregiver. Incorporating disclosure into the care process for older children is likely to be beneficial, and should be recognized as an iterative process with a need for incorporating cultural sensitivities and a comprehensive approach to health education.