# Disclosure Intervention to Support Caregivers (DISC)

> **NIH NIH R33** · MASSACHUSETTS GENERAL HOSPITAL · 2024 · $336,391

## Abstract

ABSTRACT
Over 16 million children are HIV-exposed and uninfected (HEU) globally, many of whom were
also exposed to maternal antiretroviral drugs in utero and/or during breastfeeding. Over a quarter
of all adolescents ≥10 years of age in Botswana are HEU. Children and adolescents who are
HEU experience increased risk of infectious morbidity, mortality, poorer growth and
neurodevelopmental delays compared to those born HIV-unexposed uninfected (HUU). Yet,
much of the research to date following outcomes in this population has focused on assessing
health and neurodevelopmental disparities occurring in infancy, childhood, or adolescences. Little
is known about associations between gestational exposure to HIV and antiretroviral (ARV) drugs,
growing up in a household affected by HIV and adult health outcomes, including cardiometabolic
health, reproductive health, cancer risk, or mental health. We have the potential to follow
adolescents who are HEU into young adulthood, with detailed prospectively collected data on
their in utero exposures, including maternal viral load and specific ARV drugs in the Botswana-
based FLOURISH study (R33 HD103099) . However, only 41% of caregivers participating in the
FLOURISH study had disclosed their HIV status to their adolescents who are HEU. Contextually
appropriate tools and approaches are urgently needed to support caregiver disclosure of HIV
exposure status to their adolescents, creating the opportunity for longitudinal surveillance of
health and wellbeing outcomes into adulthood. Employing a multi-methods study design. the
Disclosure Intervention to Support Caregivers (DISC) study will advance an understanding of the
benefits of disclosure while facilitating the development of a contextually appropriate disclosure
tool designed to prepare caregivers for a disclosure discussion and provide caregivers with skills
for assessing their adolescent’s wellbeing post disclosure through the three scientific aims,
including 1) evaluating whether caregiver disclosure of HIV status is associated with lower
prevalence of depression and anxiety for both caregivers and adolescents, as well as improved
parent-adolescent relationships, where disclosure has occurred compared to dyads where
disclosure has not occurred; 2) developing tools to support caregiver disclosure of HIV status to
adolescents who are HEU, relying on in-depth interviews, focus group discussions, and human-
centered participatory design workshops with FLOURISH caregivers and adolescents; and 3)
assessing acceptability, feasibility, and appropriateness of the newly designed disclosure support
tool among a subset of FLOURISH caregivers who have not yet disclosed to their adolescents.

## Key facts

- **NIH application ID:** 11067363
- **Project number:** 3R33HD103099-05S1
- **Recipient organization:** MASSACHUSETTS GENERAL HOSPITAL
- **Principal Investigator:** Jennifer Jao
- **Activity code:** R33 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $336,391
- **Award type:** 3
- **Project period:** 2020-08-17 → 2025-12-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/11067363

## Citation

> US National Institutes of Health, RePORTER application 11067363, Disclosure Intervention to Support Caregivers (DISC) (3R33HD103099-05S1). Retrieved via AI Analytics 2026-05-30 from https://api.ai-analytics.org/grant/nih/11067363. Licensed CC0.

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