Blood cancers

LGBTQI+ cancer patient needs to be focus of new Sydney centre


Prof. Jane Ussher

A new healthcare innovation centre being constructed in western Sydney will be home to Australian LGBTQI+ cancer research.

Western Sydney University’s Translational Health Research Institute (THRI) is one of several centres of medical research excellence moving into the Westmead Innovation Quarter next year.

And a key area of the institutes research is the cancer experiences of lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI+) communities and their caregivers, according to Professor Jane Ussher who leads the ‘Out with Cancer’ program.

She said there were an estimated 150,000 LGBTQI+ cancer survivors in Australia and 20,000 additional cases each year, but the needs and concerns of LGBTQI+ people were rarely discussed in cancer information and support.

“The LGBTQI+ community are a marginalised population who have unique healthcare needs, yet are often overlooked in mainstream cancer research and practice,” said Professor Ussher.

“LGBTQI+ people experience higher rates of cancer, as well as higher rates of psychological distress due to experiences of discrimination and social exclusion – described as minority stress. They also report higher rates of cancer-related distress. Many LGBTQI+ people report difficulties in accessing general healthcare, as well as cancer care and fears associated with screening,” she noted

“Previous research on LGBTQI+ cancer has been small scale, and has focused on breast and prostate cancer. There is no previous research on the experiences of transgender and intersex people with cancer, or experiences of adolescent and young adult LGBTQI+ people with cancer.”

Professor Ussher, who is Professor of Women’s Health Psychology at the university’s School of Medicine, said the ‘Out with Cancer’  team had already been seeking input from patients and oncology professionals on the experiences of LGBTQI cancer care and survivorship.

Preliminary findings from the study point to a lack of understanding from health care professionals, which is leading to instances of partner exclusion, individuals being misgendered, and feeling that they faced discrimination and substandard care as a member of the LGBTQI+ community.

The initial feedback also points to systemic barriers to the provision of LGBTQI+ culturally safe cancer care, including lack of inclusion of LGBTQI+ content in education and training curriculum and the invisibility of LGBTQI+ experiences in patient resources and cancer guidelines.

“Despite these significant issues and concerns, the desire to develop culturally safe cancer care was evident across a majority of professional disciplines accounts. Healthcare professionals described being ‘hungry for knowledge’ and wanting ‘to do a good job’ to ‘provide patients with the care they need’ which gives us hope that the study’s recommendations will be acted upon,” explained Professor Ussher.

The centre will be collaborating with groups such as the Prostate Cancer Foundation of Australia, Breast Cancer Network Australia, Canteen, LGBTI Health Alliance and ACON as well as the Cancer Council to focus on the cancers needs of the LGBTQI+ community.

“As part of the Out with Cancer study, Cancer Council NSW will be working with us to develop information resources for LGBTQI+ people with cancer and their carers, as well as practice recommendations for health care professionals. These resources will be distributed nationally through Cancer Council Australia,” said Professor Ussher.

“This is also a unique collaboration between non-government organisations who focus on the needs of people with cancer, and who support LGBTQI+ communities. This unique collaboration will result in a suite of translational outcomes, including resources for specific cancer types (breast and prostate), for young people, and across all cancer types. This will take the form of online resources, printed booklets, podcasts and videos, and an exhibition of our arts-based findings – photographs taken by our participants.”

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