How a 25-year-old periodic survey for lesbian, bisexual and queer women responded and adapted to gender diversity: a reflexive analysis

ABSTRACT

Twenty-five years ago, the first Sydney Women and Sexual Health (SWASH) survey sought to generate knowledge about HIV risk for women in contact with Sydney’s gay and lesbian community. SWASH has gone on to become the longest running periodic survey of lesbian, bisexual and queer (LBQ) women’s health. It reflects LBQ women’s lives back to them and makes LBQ women knowable for Australian public policy. But, like all research, the social reality SWASH produces is a partial representation of the target population. As it entered its 12th iteration, it became clear the survey needed to change to better represent trans and gender diverse people’s lives. In this paper, we describe our process of first adding inclusive gender indicators, and then applying a gender diversity lens to all survey questions, data collection and reporting. We reflect on our motivations and fears, and where we can, the consequences on data of previous and new research design choices. Reflexive analysis such as ours, though still rare in quantitative research, promotes accountability to communities we research and the sectors who use the knowledge we produce.

KEYWORDS:

• Gender diverse
• non-binary
• trans
• research methods
• surveys
• reflexivity

Acknowledgments

We acknowledge the many people who have engaged with us on these issues over the last several years: anonymous survey respondents providing written comments, community members seeking conversations with us, and particularly ACON staff who queried SWASH and then worked to revise questions. We are especially grateful to the many trans and gender diverse people who have been patient and generous with their labour; especially the non-binary people who participated in formal consultations. Finally, we thank Karen Price, Cal Andrews and Anna Barker who gave invaluable feedback on this paper. While all these conversations have contributed to our thinking, we take full responsibility for the positions and reflections in this paper.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Notes

1. SWASH is focused on sexuality, so the sample does not include women who identify as heterosexual regardless of gender or intersex status.

2. JMS and RD (both queer cisgender women) have been running SWASH since 2009. AA (a queer non-binary person) has been involved since 2019. None of the researchers prior to 2009 participated in this article. Commentary on the context or intent prior to 2009 are necessarily partial.

Additional information

Notes on contributors

Julie Mooney-Somers

Julie Mooney-Somers is an associate professor at the School of Public Health, University of Sydney. She has a long track record in research on the health of sexuality and gender diverse people, with her recent work focused on tobacco, alcohol, and other substance use. With ACON and Rachel Deacon, she runs SWASH, a periodic survey of lesbian, bisexual, and queer women’s health. Julie has been a Board Director at ACON (Australia’s largest LGBTQ health organisation) since 2012. Twitter: @JMooneySomers

Ania Anderst

Ania, Anderst is a research associate and PhD candidate at The George Institute for Global Health, Sydney. They are a public health researcher, with key interests in equity in health and addressing social determinants of health. They are a community researcher on the SWASH survey and peer worker at ACON’s CheckOUT Clinic. Ania is undertaking a PhD exploring social housing and Aboriginal and Torres Strait Islander health and wellbeing. Twitter: @ania_anderst

Rachel Deacon

Rachel Deacon is an experienced clinical researcher within drug and alcohol (D&A) treatment services based in the South Eastern Sydney Local Health District and Discipline of Addiction Medicine, University of Sydney. Her focus is on improving D&A health data systems, from data collection at the clinical coalface through to reporting outcomes. With ACON and Julie Mooney-Somers, she runs SWASH. Twitter: @LittleBuggerBoo