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

A5288: MULTIOCTAVE, Management Using the Latest Technologies...

The study is being done to: test a strategy of using a resistance test to choose anti-HIV drugs. Resistance tests look at the...

Read More

A5324: A Randomized, Double-Blinded, Placebo-Controlled...

ACTG A5324 is a phase IV randomized, double-blinded, placebo-controlled study to assess the efficacy of adding Maraviroc (MVC)...

Read More

A5332: Randomized Trial to Prevent Vascular Events in HIV...

REPRIEVE (A5332) is a large double-blind, randomized, placebo-controlled study of pitavastatin or placebo for about 72 months....

Read More

P1070, Dose-Finding and Pharmacogenetic Study of Efavirenz...

Efavirenz (EFV) is an anti-HIV medicine that is commonly used to treat HIV infection in adults and children older than 3 years...

Read More

NWCS 408: Examining Longitudinal Cytokine Profiles in HIV-TB...

Using existing data from A5274 and data obtained from retrospectively testing available biospecimens, we propose the following...

Read More