Affiliations: Byramjee-Jeejeebhoy Medical College, Clinical Trials
Unit, Pune, India | Byramjee-Jeejeebhoy Medical College, Pune, India | Johns Hopkins School of Medicine, Baltimore, MD,
USA
Note: [] Correspondence: Nishi Suryavanshi, PhD., Pathology Museum, 1st
Floor, BJ Medical College Jai Prakash Narayan Road, Pune, Maharashtra 411001,
India. Tel.: +91 20 26052419; Fax: +91 20 26125432; E-mail:
nishisuryavanshi@hotmail.com
Abstract: 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.
