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

Citation: Suryavanshi N, Raval G, Kanade S, Nimkar S, Nadgiri V, Sahu P, Kadam D, Khadse S, Mave V, Gupte N, Gupta A. Challenges to disclosure of HIV status to perinatally infected children: a study of caregiver perspe study of caregiver perspectives in Pune, India. Journal of Pediatric Infectious Diseases, 9(2), 71-84. DOI: 10.3233/JPI-140418. 

Access full article:

https://jhu.pure.elsevier.com/en/publications/challenges-to-disclosure-of-hiv-status-to-perinatally-infected-ch-5

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.

J Ped Infect Dis 2014; 9(2):71-84  doi:10.3233/JPI-140418

Categories

CRS
Topics

Clinical Trials

A5225: Phase I/II Dose-Finding Study of High-Dose...

A5225/HiFLAC is a Phase I/II dose escalation and validation study of the safety, tolerability, and therapeutic effect of an...

Read More

A5273: Multicenter Study of Options for Second-Line...

The study is being done with people who are taking their first anti-HIV drug regimen (including an Non-Nucleoside Reverse...

Read More

P2010: Phase III Study of the Virologic Efficacy and Safety...

IMPAACT 2010 is a Phase III, three-arm, randomized, open-label study of HIV-1-infected pregnant women initiating either a...

Read More

P2005: A Phase I/II Open-Label, Single-Arm Study to Evaluate...

This study is currently on hold. The study is designed to characterize the pharmacokinetics of DLM using a model-based...

Read More

P1077FF: Formula Feeding Version of the PROMISE Study...

1077FF is a randomized strategy trial, which is part of the PROMISE studies (1077BF, 1077FF, P1084s, and 1077HS). The Promoting...

Read More