Out with Cancer
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Funded by an Australian Research Council linkage grant, this four-year project is focused on understanding lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI+) experiences of cancer and cancer care.
About the Out with Cancer Study
The Out with Cancer study used mixed methods to explore LGBTQI+ experiences of cancer and cancer care from the perspectives of people with cancer, carers and healthcare professionals. Our work has included:
- 430 surveys, 104 semi-structured interviews and 45 photovoice interviews with LGBTQI+ people who had been diagnosed with cancer, or had medical intervention related to cancer risk
- 104 surveys, 31 semi-structured interviews and 10 photovoice interviews with LGBTQI+ cancer caregivers
- 357 surveys and 48 semi-structured interviews with healthcare professionals who provide services to people with cancer and their carers
- An audit of Australian cancer information resources and international LGBTQI-specific cancer information resources, to assess their LGBTQI-inclusivity and appropriateness
The surveys and interviews have now closed, and we are currently writing up the findings of our study for publication and presentation. Find out more about our study methodology. (opens in a new window)
Why this work is important
LGBTQI+ communities represent an “ignored epidemic” and a “growing and medically underserved population” in cancer care.
Previous research suggests LGBTQI+ communities experience a disproportionate cancer burden, and face unique psychosocial challenges, such as higher rates of cancer related distress and sexual concerns, lower levels of family support, difficulties in accessing general health care or cancer services, gaps in patient provider communication and lower satisfaction with cancer care.
“Research is needed to understand these disparities and the complexity of LGBTI+ experience of survivorship across tumour streams, from diagnosis through to palliative care.”
Recently, the American Society of Clinical Oncology recognised this health disparity and concluded there is “insufficient knowledge about the health care needs, outcomes, lived experiences and effective interventions to improve outcomes” for LGBTQI+ populations. As a result, health care providers and policy makers are ill-equipped to provide culturally-competent advice or assistance to LGBTQI+ cancer survivors and their families.
Our study aims to build our understanding of LGBTQI+ experiences of cancer and cancer care, helping us to improve the capacity of healthcare professionals and systems to provide appropriate support and care to LGBTQI+ patients and caregivers.
"My partner wore these shoes when we’d go in to various treatments at the hospital. We’d have people smile and you could tell by the smile, it was a way of connecting. We had lots of happy connections because of these shoes."
Study participant
"In this tunnel, it's mostly safe but it’s like walking in an area that has landmines. You can walk through fine for most of the time and most of the people that you meet will be professional and inclusive. But you’re always cautious. You don't know if you’re going to step on a landmine. So you have to walk gingerly. This is what it means to navigate the health system as a lesbian woman."
Study participant
"This painting is all about celebrating lesbianism and same sex relationships. There's about 40 women and most of them came out and helped to paint this particular picture. We're all working for a common cause – to look after each other as lesbians and to provide support for each other. Maybe there's been a bit of discrimination when you were being treated or some of the nurses were a bit snarky and you could tell that they weren't comfortable having your partner in the room, you can talk about all of that with these women because at some point they‘ve all been there, they’ve probably all experienced it."
Study participant
Recent publications:
We are currently in the process of writing up and publishing the findings of our study. Papers written so far include:
Reinforcing or Disrupting Gender Affirmation: The Impact of Cancer on Transgender Embodiment and Identity (opens in a new window)
These findings demonstrate that trans embodiment and identity, as well as the process of gender affirmation, may be disrupted by cancer or informal cancer caring. Conversely, cancer and cancer treatment can positively impact the embodied identity and lives of trans people, despite the anxiety and strain of negotiating medical procedures. However, if healthcare professionals operate within a cis-heteronormative framework and do not understand the meaning of embodied change following cancer treatment for trans individuals, these positive benefits may not be realized.
Attitudes, knowledge and practice behaviours of oncology health care professionals towards lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) patients and their carers: A mixed-methods study (2021) (opens in a new window)
This paper presents findings from surveys and interviews of cancer healthcare professionals, highlighting that while most healthcare professionals describe themselves as comfortable treating LGBTQI cancer patients, they were less confident and knowledgeable about their needs (particularly for transgender and intersex patients).
LGBTQI inclusive cancer care: A discourse analytic study of health care professional, patient and carer perspectives (2022) (opens in a new window)
Drawing from surveys and interviews of LGBTQI+ people with cancer, carers and healthcare professionals, we identify the different approaches healthcare professionals take when working with LGBTQI people, and how these are experienced by LGBTQI people with cancer and carers.
“Surviving discrimination by pulling together”: LGBTQI cancer patient and carer experiences of minority stress and social support (opens in a new window)
This paper draws from qualitative survey and interview data from LGBTQI+ people with cancer and carers to describe how legacies of discrimination, minority stress and exclusion shape LGBTQI+ people’s experiences of cancer care (including trust in healthcare professionals and available support systems). We also describe how social support can buffer the impact of minority stress, including through collective action and advocacy to improve healthcare systems.
LGBTQI cancer patients’ quality of life and distress: A comparison by gender, sexuality, age and cancer type (opens in a new window)
We report findings from our survey of LGBTQI+ people with cancer, identifying that this population is at higher risk of distress compared to non-LGBTQI+ people with cancer; that some LGBTQI+ groups (those who are transgender, adolescent and young adults, bisexual, queer and those who live in rural or regional areas) report poorer outcomes; and identifying factors contributing to worse distress and quality of life among this population.
Get support
If you are experiencing distress related to your involvement in this study, or would like to talk to someone about being LGBTQI+ and/or your cancer experience, view support services (opens in a new window) that may be helpful to you.
Contact us
For more information about the study please contact us at outwithcancer@westernsydney.edu.au
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