SWASH is a repeated cross-sectional survey of the health and wellbeing of community-engaged lesbian, bisexual, queer (LBQ) and other non-heterosexual identifying women in Sydney. It provides a snapshot, and allows us to track changes, demographics including sexuality and gender; community engagement; sexual practice, sexual partners, relationships; cervical cancer/breast cancer/STI/HIV screening, HPV vaccine uptake; smoking, alcohol and other drugs use, help seeking for AOD use; mental health, psychological service access; general health, GP satisfaction; experience of DV and anti-LGBT violence & abuse. SWASH first ran in 1996 and has run every two years since, generating data from 600-1200 respondents at each iteration. It is the longest running periodic survey of LBQ women’s health in the world.
SWASH is also a community-engaged project, run by a collaboration of researchers (Julie Mooney-Somers at Sydney Health Ethics, University of Sydney) and Rachel Deacon at (Langton Centre, South Eastern Sydney Local Health District and Central Clinical School, University of Sydney), and ACON Health (Australia’s largest community health organisation specialisaing in LGBTQ health). Let’s go back to the beginning with an extract from the very first SWASH report (circa 1998):
Nonetheless, sex with a man remains the main risk for HIV transmission to women. During 1997, 66 women were newly diagnosed with HIV infection in Australia, 58 of them through heterosexual contact and 7 through injecting drug use (Australian HIV Surveillance Report April 1998). However, it is important to remember that for a case of ‘heterosexual’ transmission of HIV to occur, neither party need be heterosexual.
There is a tendency among some clinicians, the popular media and members of the general public to assume that lesbians are by definition ‘women who do not have sex with men’, and thus to disregard any possibility of their exposure to HIV or other sexually transmitted infections. Such an assumption equates epidemiological or behavioural categories with social identities and disregards the fact that women who identify as lesbians have often had sex with men in the past and may continue to do so intermittently or even frequently, just as some gay-identified men may have sex with women. Further, because of the social circles in which they move, lesbian-identified women and other women associated with gay/lesbian/queer community who do have sex with men are more likely to have sex with homosexually active men than are women randomly selected from the community at large. If they inject drugs in the company of gay or homosexually active male friends, they are more likely to come into contact with HIV, especially if they share injecting equipment.
Both the Gay and Lesbian Injecting Drug Use Project (GLIDUP) and the Women Partners of Gay/Bisexual Men Project at the AIDS Council of NSW [now ACON] are accessed by women who are connected to Sydney’s gay and lesbian communities. Some of these women have reported having sexual contact with and/or injecting drugs with gay or bisexual men. Women also access GLIDUP’s needle exchange services at major gay and lesbian parties. Late in 1995 the Sydney Men and Sexual Health (SMASH) project released a report on men in the gay community and their sex with women (Prestage et al. 1995). This preliminary report raised issues about women in contact with the gay community which needed to be addressed more directly. These circumstances prompted project officers with GLIDUP and the Women Partners of Gay/Bisexual Men project to initiate research into the contact these women have with community-attached gay and bisexual men. The result was this survey, carried out for the first time in 1996 and again in 1998. It is based on convenience sampling and was initiated in order to estimate risks to women in contact with Sydney’s gay and lesbian community, with the primary aim of finding whether further work was necessary, either in research or targeted prevention campaigns.
SWASH came about because the community was concerned about a lack of visibility of the health issues for LBQ women and the consequences of this invisibility. Front-line community-based health workers and advocates, supported by researchers, initiated a research project to generate evidence for action. Over it’s 22 year history, SWASH has always using this model: community-based health workers and university researchers bringing their different skills, capacities, connections to a research collaboration that is characterised by a shared commitment to producing high quality relevant data to inform action. The individual (and institutional) skills, capacities, and commitments have ebbed and flowed over the time but the collaboration persisted and ever two years a survey was run. Rachel Deacon and I became ‘the university researchers’ in late 2009, taking over from Juliet Richters (and Garrett Prestage).
Being part of the SWASH collaboration for nearly a decade means I take for granted what makes SWASH special as an example of a community-engaged research project. This is the first in a series of blogs about how SWASH works (from my perspective). It would have made sense to start with the review of the survey and planning data collection, but you’ll just have to make do with me jumping into the middle: producing the SWASH report.
Some context: We collected paper survey data at events and venues in Sydney during the Sydney Mardi Gras season in February 2018, followed by an online survey. We used a professional company to data enter the surveys this year (in the past we used a casual research assistant, community volunteers or students), and it really sped things up. Their data quality processes were great so we got a very tidy data set (I highly recommend Paper House). Seven months after data collection, we have a draft report. We’ve hit this point in the cycle much earlier than usual – in large part due to the smooth data entry processes. Despite this being the 5th report Rachel and I have done, it always takes many more hours then I expect/remember to produce the report (note to self for 2020!).
Tomorrow we present the highlights of this year’s draft report to relevant front-line and policy staff at ACON through a formal feedback session. We will also have informal conversations and a few staff will undertake a detailed read. We want to know if what we have found resonates with their recent experiences with the community – for example, have they noticed a change in the drugs people are talking about using or more talk about mental health concerns. We will test out our interpretations of trends in repeated questions or findings for new questions. We will talk about how new or persistent issues connect with ACON’s policy and program work. These conversations make ACON staff aware of the findings so they can feed them in to existing or use to build new programs or advocacy. We’ve already provided early access to sexual practice data for a staff member reviewing an ACON program. We will provide feedback on where LBQ women seek support for their own alcohol and other drug use to add to an evaluation they are already undertaking of their own services. ACON asked us to include a question on mammography for the first time, as they are currently undertaking a program of breast cancer awareness.
We also talk about political and ethical issues around how we report SWASH findings – how to be careful of language so we don’t (further) stigmatise community or behaviour or inadvertently exclude people. This year we’ve changed the way we capture gender identity, using ACON’s suggested gender indicators. We will talk to staff about how to best describe who responded to the survey; this is part of continuing work on the survey itself to meet community expectations around capturing the diversity of ways people describe their experiences, practices or identities, and in some cases, their partners’ identities. When we first asked about weight and height, ACON staff expressed concern about fat stigma and normative ideas around body shape. They presented specific and well informed critiques about how BMI is mis/used and in particular how it does not recognise differences in height and weight proportions which may be related to cultural heritage. We worked together to craft language that reflected these concerns.
After nearly a decade of working together we have a report that reflects the collaboration members’ needs, values and preferences. The language and interpretations are thoughtful and grounded in community perspectives, as well as precise and technical. The final report looks professional – the ACON Design Studio transforms our WORD document into a highly polished output. The report is not a purely technical report – it has the methods and tables but too much commentary and discussion of other literature. At 50 pages it is far too long to be a community report – we have a table for every survey question, and barely any infographics.
We send hard copies of the final report to mainstream health providers, state and federal government politicians and policymakers, and community partners. We get copies deposited in the National Library of Australia, State Library of New South Wales, NSW Parliamentary Library, and University of Sydney library [because I get an ISBN]. I bring copies to any LGBT health event I attend across the country, ideally getting a copy to every conference attendee (see photo), or leaving copies at an ACON stall or under my conference poster at a mainstream conference. My university would prefer me to put all this effort into a peer reviewed journal article, but I think the report makes a substantial practical difference to addressing the invisibility of health issues facing LBQ women and providing evidence for action.
The SWASH report is just the start as it triggers a range of community engagement activities, that’ll be the subject of my next blog.
Click here to access the published reports – and the peer reviewed journal articles 🙂
Julie Mooney-Somers 
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