Stigma-Related Lived Experiences of Families Caring for Children with HIV in Indonesia: A Phenomenological Study

Abstract

Human immunodeficiency virus (HIV)-related stigma remains a significant concern in Indonesia, where misconceptions about transmission, moral judgment, and concerns about family reputation may expose children living with HIV and their families to rejection, concealment, and social exclusion. This descriptive phenomenological study aimed to gain a deeper understanding of the lived experiences of parents and primary caregivers caring for children living with HIV in the context of stigma. Seventeen parents and primary caregivers were purposively recruited from three Indonesian regions: Lampung Province, Semarang in Central Java Province, and the Special Region of Yogyakarta. Data were collected through in-depth, semi-structured interviews and analyzed using Colaizzi’s seven-step phenomenological method.

Three themes and seven subthemes emerged: anticipating negative judgment from others, concealing the child’s HIV status to avoid discrimination, and withdrawing from social engagement and restricting interaction; these findings demonstrate that caregivers actively protected children through secrecy and restricted social exposure, although these strategies increased emotional burden, constrained communication, and reduced opportunities for social support. Nurses can apply these findings by providing confidential, family-centered, and stigma-sensitive assessments; therapeutic communication; psychosocial counseling; individualized disclosure support; referral to peer and community resources; and culturally responsive HIV education that strengthens family confidence and promotes safe social participation.