Negotiating trust and struggling for control: everyday narratives of unwanted disclosure of HIV status among people with HIV in Australia

ABSTRACT

Despite the frequent occurrence of unwanted disclosure of HIV status in Australia, there is little understanding of its determinants and consequences. This paper offers an analysis of lived experiences of unwanted disclosure amongst 28 people with HIV in urban settings in Australia. Of the 28 individuals interviewed, 17 men and 8 women had experienced unwanted disclosure of their HIV status by other people in work, health, social and other settings. Through the lenses provided by the concepts of habitus and agentic practice, this paper focuses on unintentional and deliberate practices of unwanted disclosure, and the consequences that may arise from this. Findings reveal how unwanted disclosure may lead to reflexive and agentic action among people with HIV as they struggle to reclaim control over their lives and how they are perceived. Despite what is sometimes assumed, the negative social responses the HIV epidemic has given rise to persist in Australia. Some 30 years into the epidemic, findings highlight the need to establish a social climate that is intolerant of unwanted disclosure, and which recognises the damage it may cause.

KEYWORDS:

• Disclosure
• HIV
• people with HIV
• Australia
• reflexivity
• agentic practice

Acknowledgments

The authors would like to thank John De Wit and Loren Brener for their involvement in the research study. We also thank Jeanne Ellard for training the community researchers, and Jane Costello, Kristin Elliott, Lance Feeney, Ash Jones, Lara K and Neil McKellar-Stewart for carrying out the interviews.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1 We use the term agentic practice to account for the ways in which human agency is expressed, made visible and achieves its effects (Maxwell & Aggleton, 2014, p. 2).

2 At the time of the study, the Centre for Social Research in Health was named the National Centre in HIV Social Research.

Additional information

Funding

This work was supported by the Commonwealth Department of Health, and The Levi Strauss Foundation.