Abstract

Children living with HIV are not routinely informed of their HIV diagnosis: open communication is not yet standard global practice (Warburton et al., 2022). This article presents data from a qualitative study aimed at establishing an evidence-based approach to telling children they are HIV positive. An arts-based narrative inquiry methodology was used. Sixteen young people and ten parents were recruited via voluntary sector organizations in the United Kingdom and shared their experiences through focus group participation. Participants used arts resources to create something of their choice as a vehicle to share their untold stories. Creative pieces made by participants included masks and boxes illustrating the experiences of stigma and self-stigma and highlighting the need felt by participants to hide HIV. Stigma prevents HIV-related conversations and creates self-stigmatization. Secrecy in family homes exacerbates self-stigma and a cycle of intergenerational stigma, as a new concept, was identified in the narratives. The burden of hiding a health diagnosis is an overwhelmingly negative experience for children and their families. Early naming of HIV and open communication will reduce the weight of self-stigma and intergenerational stigma experienced by children and families. It is time to break the cycle of stigma.