Experiences of, and motivations for, disclosing HIV to social and familial networks: considering the social and relational domains of HIV disclosure

Abstract

For people living with HIV, decisions about when, how and who to tell about their HIV status can involve navigating complex social, legal and health domains. With a focus on disclosure to broader social and familial networks, we explored the experiences of, and motivations for, HIV (non-)disclosure among recently diagnosed people living with HIV in Australia. Semi-structured interviews were conducted with 35 people diagnosed with HIV from 2016 onwards, of whom 25 completed follow-up interviews. Participants commonly reported anticipating negative responses and rejection from others when considering whether to disclose their HIV status. Some participants also took on the role of ensuring others’ wellbeing when disclosing (or not), even as they themselves needed emotional support. Finally, some participants felt it important to be open about their HIV status to raise awareness of HIV and challenge HIV-related stigma. Our findings highlight the complex relational and social contexts that shape HIV disclosure. In addition to supporting individual people living with HIV when disclosing, we argue that educational programmes that target the broader, HIV-negative population are needed to shift the social landscape in which people living with HIV disclose.

Keywords:

• HIV
• disclosure
• non-disclosure
• social relationships
• stigma
• moral labour

Disclosure statement

All the authors declare no conflict of interest.

Additional information

Funding

The RISE Study received funding from the Australian National Health and Medical Research Council (NHMRC) and the health departments of the Australian Capital Territory, New South Wales, North Territory, Queensland, South Australia, Tasmania, Western Australia, and Victoria.