“I am yet to encounter any survey that actually reflects my life”: a qualitative study of inclusivity in sexual health research

Abstract

BackgroundHeteronormativity describes a set of norms and assumptions pertaining to heterosexual identities and binary gender. In 2015, we conducted our annual Sex, Drugs and Rock’n’Roll study, an online health survey of over 1000 Victorians aged 15–29 years. Feedback from participants suggested that our survey contained heteronormative language. In response to this, we aimed to make inclusive changes to our survey via consultation with young gender and sexually diverse (GSD) people.MethodsWe conducted two semi-structured focus groups in Melbourne with a total of 16 participants (age range: 21–28 years). Participants were mostly cisgender women, and there were two transgender participants and one non-binary participant. Participants also had a range of sexual identities including lesbian, queer, bisexual, pansexual, and asexual. Focus group discussions were transcribed verbatim and analysed thematically.ResultsMost participants indicated heteronormativity affects their lives in multiple ways, noting its impacts on access to sexual healthcare, invalidating sexual experiences and miscommunication in forms and surveys. Overall, participants emphasised the need for sexual health research to avoid assumptions about behaviour, to be clear and eliminate question ambiguity and avoiding treating gender as binary. Participants also discussed how the Sex, Drugs and Rock’n’Roll survey could address a range of sexual behaviours and experiences, rather than focusing on penetrative sex, which many participants found invalidating.ConclusionsOur findings have important implications for future health surveys aimed at general populations. We present recommendations that encourage research to be more inclusive to ensure data collection from GSD participants is respectful and rigorous.Electronic supplementary materialThe online version of this article (doi:10.1186/s12874-016-0193-4) contains supplementary material, which is available to authorized users.

What and how: doing good research with young people, digital intimacies, and relationships and sex education

“…Particularly in sexual health research, a heteronormative approach prevails. For example, sex is often defined as involving penetration with a penis (Ansara 2015), and minority groups in terms of sexual identity and gender identity are often treated as a homogenous group or excluded from analyses altogether because of sample size limitations (Carrotte et al 2016). Heteronormativity is a barrier to accessing information and services and is reinforced by a lack of inclusivity in research.…”

“…Another key area is inclusivity with regard to Special Educational Needs and Disability (SEND), to ensure that research recognises both universal rights to sexuality of young people with SEND, and the diverse challenges and specific vulnerabilities they may face. Research that does not take a sufficiently inclusive approach can be frustrating for participants who may not feel able to express their views or experiences adequately, or who may even feel misrepresented (Carrotte et al 2016). It may also frustrate and exclude those reading outputs of research, who may feel they do not 'fit' the assumptions of the researchers or that their experiences are not represented (Carrotte et al 2016).…”

“…Research that does not take a sufficiently inclusive approach can be frustrating for participants who may not feel able to express their views or experiences adequately, or who may even feel misrepresented (Carrotte et al 2016). It may also frustrate and exclude those reading outputs of research, who may feel they do not 'fit' the assumptions of the researchers or that their experiences are not represented (Carrotte et al 2016).…”

“…Several groups have published recommendations for increasing inclusivity in research, including providing multiple answer categories to questions about, for example, sex, gender and sexual identity; using culturally appropriate language that does not cast certain identities or practices as 'normal'; appropriately contextualising the research (by acknowledging the limitations of the study sample) and avoiding overgeneralising the findings (by recognising that the 'general' population is a diverse population and that minority groups are part of the general population) (Goins and Pye 2013;Ansara 2015;Carrotte et al 2016). Researchers should resist assuming homogeneity within 'minority' groups and avoid reinforcing stereotyping (Kneale et al 2019).…”

Development of an affirming and customizable electronic survey of sexual and reproductive health experiences for transgender and gender nonbinary people

“…[1] The quality and completeness of participant-reported information is intimately related to participants' direct experience. [2][3][4] Participant experience, in turn, is influenced by whether participants feel respected, confident in and trusting of the study investigators, and invested in the study topic. [5][6][7][8][9][10] One way that researchers can establish trust with participants is by designing research questions that resonate with participants lived experiences.…”