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.

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