Seeking a researcher to conduct semi-structured interviews with clinicians and LGBTI people

Study: LGBTI Comorbidity study

Background: LGBTI people experience a number of specific risk factors for substance use and mental health problems, including elevated social stigmatisation and social stress, lower levels of parental support, and higher rates of abuse and victimisation. LGBTI people have higher rates of substance use and mental health problems, and are more likely to have comorbid disorders. However, we know little about LGBTI people’s experiences of seeking and receiving treatment.

This study aims to engage substance use services with a high caseload of LGBTI people to explore service users’ and clinical staff experiences with receiving and providing treatment for substance use and mental health problems. We are conducting this research to improve access and delivery of substance use and mental health treatment for LGBTI people. The research is being conducted by researchers at University of Sydney and The National Drug and Alcohol Research Centre, in partnership with ACON.

Tasks: The researcher will be responsible for managing and conducting data collection, specifically:

  • Conducting interviews with 10 x LGBTI AOD service users and 10 x AOD treatment providers
  • Screening potential participants using eligibility screener questionnaires
  • Scheduling interviews and arranging travel reimbursement (for service users)
  • Consenting participants, referring to additional support services if required (referral list supplied)
  • Managing interview transcription and quality checking
  • Monitoring recruitment targets and liaising with the research team
  • Ensuring contact details and interview records are kept secure and confidential

Selection criteria:

Essential experience:

  • Qualitative social/health research
  • Semi-structured or narrative interviews
  • Mental health or alcohol and other drugs service provision or research (ideally interviewing)

Desirable experience:

  • Interviewing or working with LGBTI people

Pay rate: $50.20 per hour (Level 5/1 professional staff)

Duration: 100 hours in total across June, July, August.

Contact: For further details please send me your CV and brief responses to the selection criteria – Julie.MooneySomers AT

Applications must be received by 9am Monday 20 May 2019

Critical data on lesbian, bisexual and queer women’s health – two SWASH reports

2018 was a big year for SWASH. The largest number of lesbian, bisexual, and queer women and non-binary people ever completed our health survey across 24 venues and events during the Sydney Gay and Lesbian Mardi Gras season. This was the 16th iteration – 16th! I have complete confidence in our claim that SWASH is the longest running and most comprehensive periodic survey of this kind in the world! We also ran our first regional site in the Northern Rivers and Mid North Coast region of NSW.

So, on International Women’s Day 2019 we launched the main report, with findings from 1272 respondents on a whole range of health issues including sexual health, preventive health practices, mental health and illicit drug use. Download the full report of the 2018 SWASH survey here, or check out our overview video.

A group of women and non-binary people holding up copies of a reportExactly a year after we started data collection at  the Lismore Women’s Festival, we returned to launch our regional report. Based on surveys from 245 respondents living in the Northern Rivers and Mid North Coast of NSW, this is a comprehensive snapshot of critical health indicators; download the full regional report here. We ran a roundtable for local health providers to provide key findings and facilitate conversations about responding to priority health issues. We ran a lively community forum at the Country Women’s Association Tea Rooms (where the 2018 survey was launched during our sexual health workshop).

There is a lot of work ahead of us now to get these findings out into the world so they can activate and shape actions to improve the health of lesbian, bisexual and queer women and non-binary people’s health.


What I learnt from Academic Writing Month #AcWriMo

November is Academic Writing Month #AcWriMo when academics set outrageously optimistic (and often public) writing goals. The idea is to write like there is no December.

My goal was to write for one hour every work day on first author peer review papers. I had three papers I wanted to work on and I identified what I needed to do for each:

  1. For my mass media anti-smoking campaigns paper I needed to tweak the intro, polish the results, trim the methods, write the discussion and submit it.
  2. For my PDPT chlamydia paper I needed to write the discussion and circulate to co-authors.
  3. For my student centered assessment paper I needed to write a spew draft.

acwrimoI wrote this plan on my office door, and added a note inviting people to ask me about my progress. I shut my door when I was working so everyone knew they would be interrupting my writing hour.

This is what happened:

I produced a spew draft of paper 3. I did a lot of thinking and writing for paper 1 but it is not ready to submit. I read paper 2 and marveled at how close to submission it was then failed to finish it.

I remembered how much I love writing. I was enjoying myself and keen to use my writing and thinking muscles where ever I could. I wrote several blog posts and the draft of my promotion application (tbh this took a lot of my writing time). I wrote lots of tweets and sketched out plans for new papers. I finished a report. Ideas flowed and my one hour commitment meant I had the space to pursue them. It was bliss.

Here’s the ‘but’

When I’m writing I have a highly developed ability to pretend nothing else in the world needs doing. Once I’m in the flow, all my deadlines and obligations melt away. I was often writing for more then my set hour, occasionally all day, and often quite intensively for several days. This was bad; while I was highly productive with my writing I got way behind on other important things (marking anyone?). Two weeks in and I was buzzing but exhausted. I was getting home in the evening and feeling like a zombie (and shamefully directing my toddler to activities that required little input from me). By week four I’d fallen over: my other work demands caught up and I was unable to muster the energy to do my hour of writing. I felt great and now I feel flat.

So at the end of November let me say this: AcWriMo is a terrible idea. AcWriMo is about binging. Binging is writers’ crack.

The writing books and experts tell you that binging is bad. Binging can be a delaying tactic – I can’t write until I have a free day/week, and what academic has that kind of free time? It is exhausting, then every time you think about writing you remember how exhausted you felt the last time so now you feel you don’t have the energy to write. And of course binging means you’re not doing the other things you do need to do. I love this quote from Paul Silva (How to Write a Lot: A Practical Guide to Productive Academic Writing; 2007)

parker yawning“Binge writers foolishly search for big chunks of time, and they “find” this time during the evenings and weekends.  Binge writing thus consumes time that should be spent on normal living. Is academic writing more important than spending time with your family and friends, petting the dog, and drinking coffee? A dog unpetted is a sad dog; a cup of coffee forsaken is caffeine lost forever. Protect your real-world time just as you protect your scheduled writing time.”

I teach writing in my research methods course so I knew all of this. I try to provide my students with tools and strategies to build a sustainable writing practice. This is where my one hour goal rather a word count goal had come from. I often did my hour before I opened email. Sometimes I stopped in a cafe on my way into work to do it. If I couldn’t start my day with it then I’d work out when I had to leave the office and make sure I stopped what ever else I was doing an hour before this. I walked away from corridor catch ups and excused myself from over running meetings: “Sorry, I have to go do my hour”. An hour a day meant that writing was front of mind and I had scheduled the time to do it (i.e. no writer’s guilt).

I won’t do AcWriMo again. But I have discovered what I need to be a productive writer and I was reminded about how much joy I get from writing when I give myself the space to do it. My original goal to write one hour a day and to identify specific pieces of work was a good one. The failure was not having the discipline to restrain myself. Stopping myself writing for more than an hour a day feels counter-intuitive, but I clearly have a writing problem!

(The always thoughtful Raul Pacheco-Vega has written several blog posts on his changing relationship with AcWriMo that resonate for me) [edited to correct Raul’s name]

Enhancing the use of emergency contraceptive pills

Over a decade after emergency contraceptive pills (ECPs) / the morning after pill became available without a prescription, the rate of unintended pregnancies remains high in many countries. Understanding women’s experiences and perceptions of ECPs may provide insights into this underutilisation. So we analysed qualitative and quantitative primary studies about women’s beliefs, knowledge, and experiences of ECPs in Australia.

KEY FINDING 1: While there was very high awareness of ECPs/the morning after pill we also found high levels of confusion and misinformation that may reduce the window of opportunity for ECP-use:

Women were unsure how to obtain ECPs and unaware it was available without a prescription

> anyone (no legal lower age limit/ you can buy for someone else) can walk in to an Australian pharmacy and access ECPs over the counter

There was widespread misunderstanding about how ECPs prevent pregnancy

> ECPs prevent fertilization so they are not an abortifacient

There was considerable confusion about the effective time frame for ECPs

> they are much more than a morning after pill! LNG is licensed for use 72 hours post-intercourse, UPA is effective for up to 5 days

Women worried about safety

> ECPs are safe for repeated use and do not increase the risk of cancer or ectopic pregnancy, or affect future fertility, nor can they harm an existing pregnancy

KEY FINDING 2: Despite broad support for ECPs and for access without a prescription among women, stigma associated with ECPs persisted. There was a clear moral discourse: ECPs should not be used as a preferred contraceptive strategy nor as a license to behave “irresponsibly” (women should take responsibility for successful contraception). We see the same moral discourse in international studies with women, GPs and pharmacists. A worry that they should not “misuse” use ECPs may be contributing to the underutilisation of ECPs internationally.

> These worries contrast with our evidence: single use of ECPs was the majority experience and overwhelmingly a response to a contraceptive mishap within an established relationship, after an occurrence of intercourse in a woman’s or her partner’s home. Women do not report having a supply of ECPs at home in case of contraception nonuse or mishap (termed “advance provision” in Australia). International studies fail to find any evidence of an increase in unprotected sex (or in STIs) after ECPs became available over the counter from a pharmacist.

TAKE HOME MESSAGE: Enhancing women’s knowledge about ECPs and directly engaging with moral prohibitions may be important if ECPs are to reduce the rate of unintended pregnancy.

Check out our paper in Health Care for Women International: Julie Mooney-Somers, Amber Lau, Deborah Bateson, Juliet Richters, Mary Stewart, Kirsten Black & Melissa Nothnagle (2018) Enhancing use of emergency contraceptive pills: A systematic review of women’s attitudes, beliefs, knowledge, and experiences in Australia, Health Care for Women International, DOI: 10.1080/07399332.2018.1526286

GET A FREE COPY OF THE ARTICLE HERE (the publisher is making 50 available, ask me for a copy when this runs out)

If you want to know more about emergency contraception, here’s a fact sheet from Family Planning NSW.

The ethics of transcribing qualitative interviews

Transcription is fundamental to (most) qualitative research. The transcript is (usually) the actual thing you analyse as data, rather than the audio recording of an interview or focus group. And yet it’s curious how little attention it gets. I run a qual methods course and I barely mention it. I’ve done a quick online search and I can’t find much in the methodological journals; ditto the textbooks I have on my shelf.

Nor does it get much attention from procedural ethics. This is pretty odd given the audio recording is arguably the most identifiable research material we generate – it is the one piece of research material with all the details in it, the names, the places, the details you’ve promised the ethics committee you’ll change in order to protect the participant. And it is in the participant’s voice. I’ve never been asked and have not seen any advice that I should address who’ll be transcribing, whether they signed a confidentiality agreement, how they will securely store the material, or if they will destroy the audio recording and the transcription.*

New PhD students get told to do their own transcribing. It’s good experience blah blah; it’ll get you closer to the data. To be fair, it can be a great way to get novice interviewers to really engage with their technique – there’s nothing like *hearing yourself* talking too much, repeatedly interrupting or umming, ahhing and stumbling your way through a tortured question. But give a qual researcher some discretionary cash and I’ll bet they spend it on transcription. It is the most boring and onerous of research tasks. I’ve seen PhD candidates do paid work just so they have cash for transcription. I’ve seen projects flounder because the researcher is totally over transcribing. I’m sure there are researchers who’ve left the last one or two or three interviews un-transcribed in order to get on with things.

And why not pay someone to do it? There’s is no guarantee transcribing your own material will produce a more accurate transcript – paying a professional means getting someone with superior skills. You may get there in the end but it will take several extra hours of your precious time. Chasing up a couple of unclear words marked up by the transcriber will still be quicker than doing the job yourself. You can even anticipate some of this by providing a list of jargon, abbreviations, medical terminology or common phrases used by the participants. Have you got the message that I think transcribing is dull, onerous work, and exceedingly time consuming so best left to the experts?

But, those experts are expensive. I’ve recently been quoted a basic rate of AUD$2-3 per audio minute. The price goes up for more than two speakers, speaker identification, bad sound quality, sometimes for English as second language and fine-grained transcribing (eg for conversation analysis), and a shorter turnaround. That’s AUD$150 for an hour long interview with 1 native English speaker, great sound quality and a week turn around. 10 interviews AUD$1500, 20 interviews AUD$3000, throw in a real (i.e. diverse) sample and well, costs spiral. I was once involved in a grant application that budgeted AUD$50,000 for transcription costs. That’s coming close to a full time research assistant. I  will hold my hand up to making decisions that should be methodological – how many interviews do I need, interviews or focus groups, how long do the interviews need to be – based on reducing the budget. There are projects I’d like to do but don’t because I haven’t got the cash for transcription. I’m sure I’m not alone here. Transcription is an entry level barrier to qual research.

Let’s review – transcription is vital to qualitative research, it’s a methodological and ethical blind spot, an onerous task, and it’s expensive. Hang on – it’s not expensive anymore! A North American company will transcribe for US$1 per min of audio (AUD$1.3), with a 12 hour turn around and 99% accuracy. And, they don’t charge extra for anything: multiple speakers – free, speaker id- free, superfast turnaround –free, and apparently no sales tax. To make this concrete, that AUD$50,000 budgeted for transcription – would have charged us AUD$13,000.

My research is generally funded by the public purse. I should reduce costs where I can (right?) and offers one hell of a saving. I can spend that cash on something else (like research translation) or not ask the public purse to give me so much money in the first place. I don’t know how big the research transcription market is but should all publicly funded research be using

I do have a slight misgiving about Australian public funds leaving the economy.

I also wonder about the transcribers. promote the fact that the transcription is done by people, not robots or computers. Their transcribers are unlikely faster than those employed by my local company. A good transcriber is looking at 3-4 hour’s work for an hour of audio – or longer if it is multiple speakers, crappy recording quality, lots of jargon, etc (i.e. real research data). My local transcriber charges me AUD$150 for their 3-4 hours of work; will charge me half this. I don’t know what my local company pays their freelancers (Google tells me typists earn AUD$28-35 per hour), but a transcriber gets US$0.4-0.65 per audio minute, that’s at best US$39/AUD$50 for their 3-4 hours of work. Really, I have no idea the margins for my local company or but it might be half the pay for exactly the same task undertaken by pretty much similarly qualified people.

My uneasiness is about paying so little with an expectation of a high quality product; a product that is fundamental to our work as qualitative researchers. Maybe if you won’t do it yourself or can’t afford to pay minimum wage, then you simply can’t afford to do qualitative research?

Be interested to hear what my qualitative research colleagues think. You using


*I found one archived document from Newcastle University (2007, amended 2015) that stated “Transcription should usually be undertaken by the researchers. (ii) If it is to be undertaken by other than the researchers (eg, a transcription service or research assistant) participants must be informed as this potentially compromises data security and participants’ privacy.” I have never heard of a research project informing a participant their data may be comprised because a transcription service is being used.

Thinking about SWASH as a community-engaged research project: the feedback

I’m writing a series of blogs about SWASH, a repeated cross-sectional survey of the health and wellbeing of community-connected lesbian, bisexual, queer (LBQ) and other non-heterosexual identifying women in Sydney. It is run by a collaboration of researchers (myself and colleague Rachel Deacon) and ACON Health (Australia’s largest community health organisation specialising in LGBTQ health). I’ve been involved for nearly a decade, but SWASH has been running as a community-engaged research project since it inception in 1996. Seriously, 22 years… that makes it an interesting case study. I’m blogging about how we do things and reflecting on why it matters that we do things the way we do. In the first blog, we had just completed the draft 2018 report and were about to present it to ACON staff. This blog is reflecting on that meeting.

Multipel covers from SWASH research reportsWe couldn’t present all the findings (we have ~50 questions) so we stuck to new questions, topics I know ACON is currently doing work around (breast health, AOD treatment service), and issues we’ve been tracking for some time (eg smoking).

New questions: this was the first time health promotion staff had access to local and timely data on suicidal ideation and self harm. We used the same questions as the Australian Longitudinal Survey of Women’s Health; the last time they reported on self harm and suicidal idealtion among LBQ women was over a decade ago. ACON have been asking for these questions for a long time. Rachel and I have said no, concerned women may not be in a safe place to deal with whatever these questions brought up – they may be answering the survey at a large community event during the day or at an evening event where they might consume alcohol or drugs. ACON asked again this year, arguing strongly that we need to normalise asking questions about mental health. Staff developed a support card to give to everyone recruited and trained the survey recruiters to be aware of these issues. And the outcome was data that could support and inform ACON’s work; high quality empirical data that could convince stakeholders of the need for targeted work. It is hard to overstate how difficult it is to get recent data on many health issues for lesbian, bisexual and queer women in Australia.

Repeated questions: We spent quite a lot of time talking about a lack of change in a health screening behaviour we’ve been tracking for several years; this behaviour is core business for ACON. SWASH captures data directly from the people ACON’s work targets, so knowing which section of the community is not engaging in screening, including women we know are at increased risk because we also have that data, can feed directly into program development. We talked about changes in repeatedly presented questions such as smoking (down) or acute psychological distress (up), and findings that need further analysis. SWASH shows how intertwined sexuality and age are; bisexual identity is more common in younger women and lesbian identity more common in older women. So knowing if variations in psychological distress are explained by age or sexuality or both is important.

A feedback session with a community-engaged organisation is valuable market testing. If there is a lot of sensitively around an issue then we can be more thoughtful how we talk about it, even work directly with staff on language. If there is a community conversation already happening, we can help advance it by adding additional narrative to the report comparing our findings to the general population, discussing the findings in relation to other LBQ studies, or link the findings to policy or program work ACON is engaged in. Self harm is a great example; our conversation made think about the language we used in the report and how important it was to acknowledge that we don’t know how respondents understand the term (the question aims to capture suicidal intent and non-suicidal intent). Do the respondents reporting engagement in sado­masochism with blood (practices such as cutting, piercing, whipping or fisting) see these practices as self-harm? It is important that we frame findings safely, meaningfully and in ways that will engage people.

A feedback session is also about solidarity and accountability. Rachel and I can make decisions that alienate, enrage, enthuse, or interest the community, but we might never hear about it. Although our contact details are readily available, I can’t recall a single email from community expressing dissatisfaction (or satisfaction!). I have very rarely been bailed up in person and my ethics committee has never received a complaint. ACON on the other hand is super accessible via social media. Staff are accessible at community events and because they are also often members of the LBQ community, people can approach them when they are ‘off the clock’. It is ACON staff who have to defend, explain or take any flack for sampling, questionnaire or analytical decisions Rachel and I make. It is important that we hear community feedback.

At our meeting we talked through methodological decisions and asked staff what they thought. For example, we’ve excluded some of our online sample for a solid methodological reason, we explained why, and discussed staff concerns about what this meant for those people who had filled in surveys. In another case, we said we can do x or y with good reasons either way, what do you think? Knowing what might be politically sensitive means we can include explanations to help community understand our decisions or the limitations of the survey, and prepare staff for community conversations. It also allows us to acknowledge the responsibilities staff as the bridge with community.

Changes in social networks are associated with lesbian, bisexual and queer women quitting smoking

We’ve just published a paper in Drug and Alcohol Review based on formative survey research we conducted for the Smoke Free Still Fierce smoking cessation campaign (ACON developed with funding from Cancer Institute NSW). We produced a community report on the survey but this is a more sophisticated analysis that aimed to understand the differences between LBQ women who smoke and those who had recently quit.

KEY FINDING: LBQ women who had recently quit were less likely to have close friends who smoked and more likely to have a non‐smoking (or no) partner.

TAKE HOME MESSAGE: To address the persistently high rates of smoking among LBQ women we need to understand and address the significance of partners and friends in supporting smoking AND cessation efforts.

Kolstee, J. , Deacon, R. M., Haidar, S. , Gray, J. and Mooney‐Somers, J. (2018), Changes in social networks are associated with lesbian, bisexual and queer women quitting smoking: An analysis of Australian survey data. Drug Alcohol Rev.

FREE ACCESS TO READ THE ARTICLE HERE (if you need to download and can’t get past paywalls ask me for help)

If you want to know more about our work on lesbian, bisexual and queer women’s smoking, check out our analysis showing that over a decade smoking rates in Australia had only slightly decreased in LBQ women engaged with LGBT communities and not reduced at all among younger women. We also showed that LBQ women who smoked had fewer economic, social and psychological resources and reported higher levels of alcohol and illicit drug use. Or look at our systematic review of the outcomes and characteristics of interventions designed to reduce LGBTI smoking (take home: they appear to be effective). We’ve more work coming…

Photo by Taylorhatmaker, used with permission

Doing research, learning from community

A few months ago I ran research capacity development on focus groups for staff at a peer-led advocacy and harm reduction organisation (Hi NUAA, you folks rock). I’ve delivered quite a bit of research capacity building in communities, but usually as part of a community-based participatory research (CBPR) project. This focus group training was standalone. It was a bit last minute and I hadn’t liaised properly so there was no projector in the room for my lovely PowerPoint presentation. It was just me and eight people for seven hours… Luckily teaching qualitative methods to hundreds of postgraduates and in community has given me nerves of steel! We worked our way through the slides in hard copy, covering the basics, and I told lots of stories from the field. They were a lovely engaged group and the sessions ran well.

At the end we ran a mock focus group – three people took it in turns to facilitate so we had seven ‘participants’. I said: play a character or yourself, embellish your own story or make it up, entirely up to you. The point was to get experience of facilitating a focus group and experience of being a participant (I do this with my postgrads also). I am often surprised at how few researchers have been research participants, it’s important to understand what it is feel like to be researched.

The mock group ran for an hour and the flow never faltered. We used questions for a future project so the organisation got feedback on their questions. The collective lived experience and knowledge in the room was deeply affecting. Mock group or not, we talked about some important, hard and confronting things (for them and me).

They were really good facilitators – this is not surprising. A group of skilled peer workers are going to be good at relationship building, at facilitating risky conversations with already vulnerable people, and they have the respectful persistence of people accomplished in peer-based health promotion. As peer workers they always occupy a space where they are ‘of the group’ but simultaneously slightly distant from it – there is something about this that makes a focus group work. My postgrad students have a predictable anxiety about bias (born from training in quant methods), and struggle with the idea of a real person with a history, experiences and ideas that they can’t simply leave outside. The peer workers were thoughtful about how to manage their own stuff when facilitating, they knew how to step aside and make it about the participants.

Co-learning is fundamental to CBPR. We researchers are good at articulating what the community is learning through engaging with us, often ‘hard’ and saleable skills. What we are learning from community is rarely formalised (unlike the ‘training’ I offer) and is often about learning how to do this research better with this community (i.e functional and limited). So let me give you an example of a fundamental lesson:

Every time I bring research methods and research ethics to community, my unexamined positions get challenged. Community imagines what you are telling them in their context, with their community. They see the holes and then push you to deal with it. The lesson this time was around relating ethically to participants in our research. I brought up managing a domineering/disruptive participant. This is text book stuff and I have lots of useful strategies that are all based on prioritising the research (i.e. shut them down, sideline them, ask them to leave). The peer workers understood a great deal about their imagined domineering/disruptive participant, including their history of exclusion and stigma. They felt a massive responsibility to be aware of past trauma and find a way to keep everyone in the room and engaging. Initially I tried explaining to them why they were wrong (thoughtful but wrong) and then I felt chastened. A few months later I’m still thinking about this gentle and powerful challenge to think about the ethics of participant engagement. This speaks to a chapter I co-authored about ethics in working with community researchers in sexual health; we drew on Mohatt‘s great account of CBPR to argue for “culturally-anchored ethical practice”. This is about making explicit the values represented across the team and developing a shared-position to work from. The consequences of this might be researchers’ throwing out received wisdom on how to do research.

Image by Brandon VK and used under Creative Commons BY-NC-SA 2.0)

NOTE: If you need access to a journal article or book chapter that is trapped behind a paywall, contact me.

Thinking about SWASH as a community-engaged research project: the report

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.

SWASH launch photo
SWASH 2016 Report launched at LBQ Women’s Health Conference July 2017

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 🙂


Sex and the Country Women’s Association… Community-oriented research translation for LBQ women.

IMG_8859The CWA – Country Women’s Association are the largest women’s organisation in Australia and work to improve the conditions of women and children in the country. They’ve been around since the 1920s. They are an Australian institution no doubt, famous for their cookbooks and cake competitions. IMG_8854Their motto is all God, throne, country… For me, “the CWA” conjures up no-nonsense, white, entirely heterosexual ladies (excuse me my stereotyping). So you can imagine my surprise when I discovered my talk about lesbian, bisexual and queer women’s safer sex was to be at the Lismore CWA Tea Rooms.

Mostly, when I talk about community-engaged/community-based research it’s all about front loading: getting community involved in research development, in data collection and only occasionally in data analysis. But this community event was about research translation – telling an affected community what we have found out, giving back the knowledge we gained through them about LBQ women and sexual health. SWASH, our twenty year health survey, has generated a lot of data on sexual practice, relationships, risk practices, and screening, but it’s been a long time since we’ve shared it.

This was not a stuffy or even a shiny university research forum. The night began with some young local women singing – there was no cash, so they got paid in donated but new sex toys! There was a giant pot of tea, biscuits, and plenty of vegan and gluten-free hot food. image_542202361553653Home made signs and rainbow bunting abounded, with raunchy images from LBQ women’s safer sex campaigns stuck to the walls of the tea room. There was a table of information about local sexual health services and another table full of free viraclean for sex toys, condoms, lube, and gloves from the always awesome ILOVECLAUDE. My research finding were imperfectly projected on a bed-sheet. The lucky door prizes were sex toys and most people won something!

There was a lot of laughing, some whispered confessions and a lot of generosity in the room. One older woman told me about the first time she’d seen a dental dam, and her complete confusion about how exactly it would help. Another told me about the first time she’d received instruction about safer sex for sex with a woman many years ago: a bucket of warm soapy water beside the bed to wash your hands between orifices/bodies. Women talked about where to find a safe GP, where to get safer sex supplies, and how you might start a conversation with a lover about preventing STI transmission. There was a lot of frank conversation about what we do, what we know, and what we aren’t sure about. What women didn’t know or didn’t feel sure about resonated very strongly with Ruby Grant’s recent research with queer young women in Tasmania, Jen Power’s earlier work with lesbian and bisexual women in Victoria, and some of my own work with younger LBQ women in Sydney (more citations at the end of this blog). .

We had a sexual health doctor in attendance (Dr Kate Bolam from Choices Clinic) and women posted anonymous questions throughout the night for her to answer. Several questions came in response to my presentation. I doubt anyone would have asked about the risks involved in oral sex and menstrual blood except I told them three quarters of LBQ women said in the last 6 months they had performed oral sex during menstruation without a barrier (Juliet Richters published this SWASH analysis ). image_542429492779593If they’d read this in a research report, I wonder what they would have done with the uncertainty this produced for them? How would they have gotten answers to questions about their own practice – should they avoid oral sex, try to get dental dams (your best bet is ILOVECLAUDE), or use a tampon (apparently provides little protection). There is a serious dearth of good quality and relevant sexual health information for LBQ women (see citations at the end of this blog). The event gave them the means to take the research findings and apply them to their lives and their practices.

I can take little credit for the event. ACON asked me to participate. The amazing staff at ACON Northern Rivers are deeply connected community people and so could judge the level, the tone, and how to make it work for local women rather than for an out of town academic (no one in the room was likely to cite my work in peer review, there was no local dignitary to shake my hand for the local paper’s photographer, no formal evaluation. I left feeling pretty convinced that community-oriented research translation needs community partners taking the lead.

At the end of the night I realised just how appropriate it was that we held our event in a CWA Tea Room. Both the CWA and SWASH are about a group of people getting together and mustering scare resources in service of their community. Through the community, for the community, and by the community.
What do we know about LBQ women and safer sex in Australia? (let me know if you get stuck at a paywall)

Cox, Peta, McNair, Ruth (2009) Risk reduction as an accepted framework for safer-sex promotion among women who have sex with women. Sexual Health, 6:15-18.

Grant, Ruby, Nash, Meredith (2017) Navigating unintelligibility: Queer Australian young women’s negotiations of safe sex and risk. Journal of Health Psychology, 23(2): 306-319

McNair, Ruth (2005) Risks and prevention of sexually transmissible infections among women who have sex with women. Sexual Health, 2: 209-217.

McNair, Ruth, Power, Jennifer, Carr, Susan (2009) Comparing knowledge and perceived risk related to the human papilloma virus among Australian women of diverse sexual orientations. Australian and New Zealand Journal of Public Health, 33: 87–93.

Mooney-Somers, J, Deacon, RM, Klinner, C, Richters, J, Parkhill, N (2017) Women in contact with the gay and lesbian community in Sydney: Report of the Sydney Women and Sexual Health (SWASH) Survey 2006, 2008, 2010, 2012, 2014, 2016. Sydney: ACON & Sydney Health Ethics, University of Sydney.

Power, Jennifer, McNair, Ruth, Carr, Susan (2009) Absent sexual scripts: lesbian and bisexual women’s knowledge, attitudes and action regarding safer sex and sexual health information. Culture, Health & Sexuality, 11(1):67-81

Richters, Juliet, Prestage, Garrett, Schneider, Karen, Clayton, Stevie (2010) Do women use dental dams? Safer sex practices of lesbians and other women who have sex with women. Sexual Health, 7: 165–169.