Child, Caregiver, and Health Care Provider Perspectives and Experiences Regarding Disclosure of HIV Status to Perinatally Infected Children in Lima, Peru

Abstract

Background: Despite recommendations for disclosure of HIV status to children living with HIV (CLHIV), fewer than half of CLHIV at the Instituto Nacional de Salud del Niño (INSN) in Lima, Peru, have had disclosure. How and when the disclosure process for CLHIV should take place in Peru has not been studied. Methods: We conducted a qualitative study at INSN to explore perceptions and experiences of 6 health care providers (HCPs), 14 disclosed and nondisclosed CLHIV (8-17 years), and their 14 caregivers regarding knowledge of illness, disclosure of HIV status, and appropriate disclosure approaches. Results: Disclosed children wanted to be told their diagnosis earlier. Nondisclosed children expressed frustration taking medications. Caregivers and HCPs discussed motivations to disclose, including educating, honesty, improving medication adherence, and preventing secondary transmission. Conclusion: Culturally appropriate guidelines and training for HCPs and caregivers are needed to support disclosure of children’s HIV status and ongoing support for CLHIV.