Participants
Sixteen participants (age range 21–28 years, mean age = 24.9 years) attended the FGDs. Seven participants attended the first FGD and nine attended the second. Participants’ listed gender identities included cisgender woman (n = 12), cisgender man (n = 1), transgender woman (n = 1), transgender man (n = 1) and non-binary (n = 1). Participants sexual identities included lesbian (n = 6), queer (n = 2), bisexual (n = 2), pansexual/bisexual (n = 1), pansexual/queer (n = 1), queer/gay (n = 1), gay (n = 1) and asexual (n = 1). One participant specified she identified ‘with’ (not ‘as’) queer.
Thematic analysis
The first FGD focused on issues relating to transgender people, lesbians and bisexual women. The second FGD also focused on lesbians and bisexual women, but explored further about asexuality and the influence of popular culture on assumptions and attitudes on GSD people. Despite these minor differences, an overarching theme of both FGDs was heteronormativity and its significant impacts on various aspects of participants’ lives. The prevalence of heteronormativity (a major theme) and its impact on three areas of interest (sub-themes) are discussed briefly below, followed by a summary of suggestions for improving the SDRR survey.
Heteronormativity is everywhere
Participants identified examples of heteronormativity in multiple settings, such as in healthcare, sexual education, the workplace and even in brief interactions with strangers. It was described as more frequent than homophobia. Most participants noted assumptions by others (typically heterosexual, cisgender individuals) about their gender and sexual identities, their relationships, their bodies and their sexual experiences. Experiencing and challenging heteronormativity was described as exhausting, invalidating, frustrating and a ‘battle’. The impacts of heteronormativity in regards to three key concepts are described below.
Heteronormativity is a barrier to sexual healthcare
Participants described heteronormativity as a barrier towards sexual health, specifically sexual health-seeking behaviour. Most participants reported sexual health-related experiences and frustrations, including doctors ignoring or struggling to acknowledge sexual identities and practices. Even when health professionals were aware and accepting of participants’ gender and sexual identities, stigmatising language or assumptions about patients’ sexual experiences (such as assuming that bisexual and pansexual participants led hypersexualised lifestyles) were common and acted as a barrier to developing rapport and receiving appropriate sexual healthcare. Some participants, particularly lesbian and bisexual women, described dismissive or ignorant attitudes of doctors towards sexual experiences and STI risk behaviours if there is no risk of pregnancy. Transgender participants acknowledged the difficulties of understanding and communicating their sexual health needs to doctors who appeared uncomfortable or were unfamiliar with transgender experiences and bodies.
Heteronormativity invalidates sexual experiences
Participants described a heteronormative societal assumption that ‘sex’ is penis-in-vagina or penis-in-anus intercourse, and anything other than this is not ‘sex’. This assumption was particularly distressing to participants who did not engage in penetrative intercourse regularly or at all.
I just think having to justify stuff… it’s just very frustrating… if it doesn’t tick these particular boxes, these one or two boxes, then that’s not ‘sex’. Lisa, 22, lesbian, cisgender woman
It can make you feel like your sex doesn’t really matter. Abby, 23, pansexual/bisexual, cisgender woman
My experience, my relationships are valid. They’re valid to me. Laura, 23, lesbian, cisgender woman
Participants described this assumption in many areas of everyday life. For example, female participants in relationships with other women described being inappropriately questioned about their sex lives by other people. Further, most participants reported frustration and anger at school-based sexual education, which they generally described as unhelpfully focusing on heterosexual vaginal intercourse and STI risk and failing to prepare them for their adult sex lives.
When asked to define ‘sex’, participants struggled to identify a specific definition. Participants indicated that sex is diverse, personal, usually intimate, and may not necessarily be reflective of traditional views, even in heterosexual encounters. Participants also discussed how experiences of sex and sexuality evolve with age and individual experiences, and focusing on penetrative sex fails to capture a spectrum of behaviours, thoughts, attitudes and experiences. While participants in both FGDs concluded that it was unhelpful to have a specific definition of sex or define it on behalf of others, they also acknowledged that they wanted their individual understandings of what constitutes sex to be respected.
Heteronormativity facilitates text-based miscommunication
In most participants’ experiences, surveys and forms designed for general populations rarely represent lifestyles of GSD people. Written communications, particularly those that rely on selecting a single category, pose a challenge for participants who do not necessarily fit into provided categories.
I am yet to encounter any survey on any topic at all that actually reflects my life, and the activities that I do with my life. Ivan, 28, gay, transgender man
Participants reported specific challenges with completing forms with regards to gender and sex – including having no options that describe them, not knowing how to ‘best’ respond to questions, and trying to balance providing accurate information with information that actually describes their experiences. It was also noted that the common forced choice between ‘male’ or ‘female’ can be upsetting for transgender and non-binary people.
After being presented with the SDRR survey’s definition of sex, participants were asked whether they would answer questions regarding sexual behaviour in alignment with their own ideas and definitions or with the survey’s definition. Most participants agreed they would often, if not always, answer with their own understanding of sex in regards to sexual partners and risk behaviours. Participants noted that the inclusion of such a definition suggests that penetrative sex is the clinical and the only recognised definition of ‘sex’, indicating a lack of empathy. Some participants reported filling any available free-text answer boxes with comments about heteronormative language in order to inform researchers of their predicament.
I don’t go into a survey expecting that the options will make me feel comfortable, or will be easy… when they ask me about sexual behaviour, I will probably have to, like, sit there for fifteen minutes, thinking, “What answer should I put down?” Taylor, 21, queer, transgender woman
Participants unanimously reported strong negative feelings towards the survey’s definition of sex, which resulted in the experience of ‘othering’ and feeling excluded. These feelings can influence the participants’ relationship with the organisation that has developed the survey, making it difficult to develop rapport.
When [my idea of sex] isn’t reflected in a survey, or not legitimised, it also feels like that survey and whoever’s funding that survey – and a lot of the time that’s the government – doesn’t care about you, or your health, or your wellbeing. Ivan, 28, gay, transgender man
Regardless of negative experiences with surveys, several participants reported a willingness to participate in sexual health research, ideally if it were made more inclusive and empathetic. Participants emphasised that there is a lack of data about GSD communities, particularly transgender and non-binary communities, and they wish to give data accurately and ‘respectfully,’ and have research be translated into positive change.
I think it’s important just to raise it and say, “We’re here. We’re here and we’re queer.” [laughter] “Take notice and research us!” Anna, 26, lesbian, cisgender woman
Summary of suggestions for improving our survey
Participants readily agreed that the language of the SDRR survey (Table 1) could be improved, but acknowledged that this was not a straightforward task, particularly as language evolves within GSD communities. Participants emphasised the need to identify the true aim of each question in order to help eliminate ambiguity and clarify the desired response.
“What are you actually asking of me?” I think is the thing. I mean, it’s really tough in research, because you don’t wanna manufacture answers, but… when I’m filling out a survey like this that I know is important… I wanna know what it actually is that you wanna know from me. Do you wanna know if I’m at blood transmission risk? Do you wanna know if, you know, I am engaging in a social culture? What part of my experiences with this do you wanna know about? Leah, 23, identifies ‘with’ queer, cisgender woman.
Gender/sex
Participants questioned whether researchers were interested in the gender of the participants (a cultural concept), or the participants’ sex assigned at birth (biological). It was noted that only being able to select one option for gender was limiting, particularly as ‘transgender’ is an adjective and not a gender identity. Participants suggested either replacing categories with a free text box so survey participants could describe their gender however they desired, or having more diverse options. It was suggested to also have ‘cisgender’ as an option (accompanied by a definition for those unfamiliar with the term), to recognise non-binary identities and intersex variations, and to specify male-to-female and female-to-male transgender if using categories. Another possibility included allowing selection of multiple options. Other questions in the survey were criticised for treating gender as a binary, particularly for reporting sexual partners. Wherever terms like ‘boyfriend’ and ‘girlfriend’ were mentioned, it was suggested we include ‘partner’ either additionally or as a replacement.
Sexual orientation
It was suggested that the question on sexual identity (Table 1) should use the word ‘currently’ as sexuality is fluid. Similar to the question on gender, participants suggested allowing selection of multiple options. It was noted as unrealistic to list every possible sexual identity but the most obvious omissions were asexual and pansexual; other suggested options included: ‘Never considered it’, ‘I don’t know’ and ‘I don’t label myself’. Other suggestions included randomising the order of the list (to eliminate a perceived hierarchy of sexual identities), modifying future questions based on the participants’ selected sexual identity, and updating the list each year with options listed in free-form text. Another suggestion was including questions about attraction in place of, or in addition to, questions about identity.
Sexual behaviour
The main criticisms of sexual behaviour questions were heteronormative language and dismissiveness of sexual behaviours other than penetrative sex. It was suggested that the definition of sex could be removed (with sexual behaviour of interest specified for each question), or modified to be more inclusive. Participants suggested lessening the focus on penetrative sex and including sexual behaviours such as masturbation, pegging,Footnote 2 and specifying receptive vs. insertive anal sex.
Regarding condom questions, participants suggested we restructure to determine the reason why a participant may select never using a condom, e.g., no chance of pregnancy or low perceived STI transmission risk. Other suggestions were including a broader definition of sexual behaviour but listing more barrier methods of contraception, or including a penetrative definition but ensuring earlier questions are not dismissive of sexual behaviours.
Changes to the survey
Our revised SDRR survey questions are summarised in Table 1; changes were based on the results of FGDs, discussions within the research team, other surveys on topics of gender, sex and sexual diversity (e.g. [17, 18]) and recommendations from various sources (e.g. [22, 23, 26]). These changes were made with consideration of the key challenges of survey-based sexual health research, including identifying accurate measures of behaviour, minimising participation bias (including social desirability) and comprehension problems, allowing participants a safe space to accurately report behaviours that may be of a sensitive nature, and treating sexuality with nuance and respect [20, 31]. Although inclusivity regarding intersex status was briefly discussed in the FGDs, we did not have any participants who identified an intersex variation, and our decision to include intersex status as a separate question was informed by recommendations from OII (Organisation Intersex International) Australia [25].