In 2021, the Wellbeing Health and Youth (WH&Y) Commission, run by Young and Resilient Research Centre and funded by NHMRC, identified a need for better inclusion of young people in youth health research. Together with researchers, lived-experience experts and other advocates, they call on key stakeholders involved in youth health research to:
Work with young LGBTQIA+ people, and researchers with lived experience, from the inception of their research to the dissemination of their findings.
The collaboration between the WH&Y Commission, researchers, lived-experience experts and other advocates, culminated in a webinar: Research PRIDE: Engaging LGBTQIA+ young people, held on Wednesday, 29 June.
The key messages from the webinar are summarised below.
All population health research must capture gender, sexuality and variations of sex characteristics data accurately.
- Acknowledge that adolescents who are LGBTQIA+ have an equal right to the highest attainable standard of physical and mental health.
Gender, sexuality and sex characteristics are fundamental human characteristics, critical to a person’s health and wellbeing. Adolescents have a right to good health. As a signatory to the International Covenant on Economic, Social and Cultural Rights, Australia recognises the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. This includes the human rights of LGBTQIA+ young people.
- For further information about including young people with variations in sex characteristics in your research, please see https://ihra.org.au/research/
- For further information about including trans people in your research, please see https://www.transhub.org.au/allies/researchers
- Use the ABS 2020 Standard to capture demographics, regardless of the research topic.
When researchers do not systematically collect this data, we miss opportunities to identify critical health inequities.
- For further information about capturing demographics relevant to gender, sexuality and sex characteristics, please see https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex-characteristics-and-sexual-orientation-variables/latest-release
Researchers must empower young people to partner with them so their lived experiences can inform, educate and improve research outcomes that matter to LGBTQIA+ young people.
- Involve young people who are LGBTQIA+ throughout the research process, and not just as research participants
Young people from LGBTQIA+ communities are experts of their lived experience. Involving them in the research process from inception through to dissemination will improve the accuracy and impact of research and will help ensure that the questions, methods and strategies used are inclusive and respectful. Young people want their experiences validated regardless of the labels with which they identify.
- Recognise the unique characteristics between people who are LGBTQIA+ and be specific about who your research relates to.
i) The term ‘LGBTQIA+’ is used to collectively describe people who identify as gender and/or sexuality diverse and/or have variations in sex characteristics. In the context of research, it is important to note that this acronym should not be used unless there has been an appropriate level of participation from people representing each of those communities. Terms like ‘LGBTQIA+ data’ can misrepresent the needs of some of those communities, and perpetuate assumptions and misconceptions. ii) Some young people, such as those who are intersex (meaning they have variations in sex characteristics), may not identify as ‘LGBTQA’. This means you need to be specific and intentional about who you are wanting to engage.
- Create more opportunities and provide support to young people with diverse genders, sexualities and variations in sex characteristics to be collaborators and co-researchers in research.
Young people who are LGBTQIA+ are experts in their own lived experience and this unique insight can change over time. It is critical to successful research that there are increasing opportunities to include young people with lived experience in health research.
- For more information about how to work with young people with diverse genders, sexualities and variations in sex characteristics as collaborators and co-researchers:
- consult a young person with lived experience and ask how they would like to be involved in the research
- talk to LGBTQIA+ led organisations about how best to engage young people.
Note the importance of recognising different communities within the broader LGBTQIA+ community (see 2b above). For example, if the intention is to engage young people with variations in sex characteristics in a research project, then consult with an intersex-led organisation for relevant advice.
- Create an inclusive, safe and confidential space.
Regardless of whether a young person discloses their gender, sexuality or variations in sex characteristics, researchers must create inclusive, safe and confidential spaces for young people with diverse genders, sexualities and variations in sex characteristics to be involved in partnering or collaborating as co-researchers.
- Remunerate young people’s involvement
Young people are often asked to engage in research without payment. Researchers should support young people to be involved in research by providing appropriate remuneration for their time, and for communicating with them about how their involvement has shaped the project. A gift voucher, thank you certificate and impact letter are a respectful acknowledgement of a young person’s contribution.
The importance of intersectionality for young people with diverse genders and sexualities and variations in sex characteristics must be acknowledged.
- Be respectful and aware of intersectionality
Every young person has different lived experiences and interconnected identities. Young people with diverse genders, sexualities and variations in sex characteristics do not solely identify as being part of LGBTQIA+ communities. Other intersectional identities may include, but are not limited to, Aboriginal and Torres Strait Islander background, cultural and linguistic diversity, ethnicity, migration status, refugee and asylum seeker backgrounds, geographical location, and ability. Intersectionality can also include identities within LGBTQIA+.
All health services and researchers must be inclusive and provide safe spaces for young people of diverse genders, sexualities and variations in sex characteristics.
- Respond to the unique needs of different communities within the LGBTQIA+ community.
A one-size-fits-all approach to health services does not work for young people with diverse genders, sexualities and variations in sex characteristics who may have very different perceptions and experiences of safety and inclusivity. A fundamental requirement is that researchers, clinicians and other service providers refrain from making assumptions about their gender, sexuality, or variations in sex characteristics.
- Promote inclusion.
Creating a safe, inclusive environment will support engagement with LGBTQIA+ young people and reduce lifelong barriers to healthcare access.
Health services and researchers can demonstrate inclusivity by:
- making visible the rainbow symbol or pride flag, the trans flag and the intersex flag
- using inclusive language on service intake forms, websites, administrative systems, policy documents and in person
- offering staff professional development and training in the diversity of experiences of people with diverse genders, sexualities and variations in sex characteristics (Davies et al 2021).
Health services and researchers can demonstrate inclusivity for young people with variations in sex chacteristics by:
- considering what language is used to talk about intersex variations
- providing information and options
- providing referrals to affirmative support groups
- not making assumptions about what the person may want or not want to do, based on their perceived gender.
- Ask respectfully about young people’s gender, and/or sexuality.
Fear of disclosure or non-disclosure of sexuality and/or gender diversity to health professionals can be major barriers to preventive health practices (Davies et al. 2021). Many young people do not disclose for a variety of reasons including:
- fearing how the health provider will react, and how this will affect their subsequent treatment
- believing that their sexuality and/or gender diversity is not clinically relevant
- waiting for the health provider to ask.
- Be trauma-informed.
Past trauma in medical settings can prevent some young people of diverse gender, sexuality and sex characteristics from accessing and engaging with health services and health research. For example, medicine and medical research may be a site of harm for some trans people and people with variations in sex characteristics. Be aware of the possibility of past trauma in medical settings and be sensitive to how young people may respond.
This document has been developed in collaboration with young people with diverse genders and sexualities and variations in sex characteristics, the WH&Y Commission and researchers from the Wellbeing Health & Youth (WH&Y) NHMRC Centre of Research Excellence in Adolescent Health, and staff at the Young and Resilient Research Centre, Western Sydney University. We would like to thank all the people involved in the co-creation and review of this document, in particular, Prof. Rachel Skinner (she/her), Research Fellow Cristyn Davies (she/her), Betty Nguyen (she/her), Maia Giordano (she/her), Stephanie Lum (they/them), Olivia Stewart (she/her), Dr Sharon Medlow (she/her) and the WH&Y PRIDE Project team members, Ian Bautista (he/him/his), Sahibjot Kaur (she/her), Jessie Whan (she/they), Sofina Le (she/her), Sharanya Ganguly (she/her), Jacqueline Gills (she/her) Holly Ellis (she/hers) and Emily Williams (she/they).
About the Commission
The WH&Y Commission is a platform to support and research meaningful engagement of young people in advancing youth health research, and to channel that research into better policy, better services and better professional practice. It is run by the Young and Resilient Research Centre with support from the WH&Y NHMRC Centre of Research Excellence in adolescent health.
WHERE TO READ MORE
Davies, C., Robinson, K.H., Metcalf, A., Ivory, K., Mooney-Somers, J., Race, K., Skinner, S.R. (2021). Australians of diverse sexual orientations and gender identities, in T. Dune, K. McLeod, R. Williams (Eds.), Culture, Diversity and Health in Australia: Towards Culturally Safe Health Care, Routledge/Taylor and Francis, London, UK, 213-231.
> For further information about including young people with variations in sex characteristics in your research, please see https://ihra.org.au/research/
> For further information about including trans people in your research, please see https://www.transhub.org.au/allies/researchers
> For further information about capturing demographics relevant to gender, sexuality and sex characteristics, please see https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex-characteristics-and-sexual-orientation-variables/latest-release