‘Diagnosis, disclosure and stigma: The perspectives of Indonesian children with HIV and their families’

Abstract

This grounded theory study aimed to explore the subjective experiences of children living with Human Immunodeficiency Virus (HIV) from the perspective of children and their families in Indonesia. Twenty participants were interviewed, consisting of 12 children aged 9–18 years and eight family members. Using grounded theory analysis, this study identified three categories: ‘coping with diagnosis’, ‘disclosing their status’ and ‘living with the stigma of HIV’. Participants responded with shock, denial, sadness, secrecy and often had misconceptions about the virus to the diagnosis of themselves or their children. After diagnosis, children with HIV and their families continuously lived with stigma stemming from individual and societal beliefs about the virus. This stigma manifested in actions such as isolation, disclosure avoidance, secrecy, deception and social rejection. Because of these stigmatisations, many of the participants decided not to disclose the child’s HIV status and used status strategies such as telling lies, keeping secrets and keeping their distance. The participants offered insight into the need for comprehensive programs to address care gaps. This study highlights that health professionals need to develop practical guidelines to support families during the disclosure process, provide psychosocial care for children, and create stigma reduction interventions for children with HIV.