Western Sydney University’s Translational Health Research Institute (THRI) – a leading Institute known for its robust integration of policy and practice across chronic disease management and prevention, lifespan health and wellness, mental health and wellbeing and diagnostics and therapeutics – will call the Westmead Innovation Quarter home next year.
One of the vital areas researchers will continue to explore at the Institute’s new Westmead location is the cancer experiences of lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ+) communities and their caregivers as part of the ‘Out with Cancer: LGBTQI experiences of cancer survivorship and care’ study, a prestigious Australian Research Council (ARC) Linkage Project grant led by Professor Jane Ussher from the School of Medicine and THRI.
“The LGBTQI+ community are a marginalised population who have unique healthcare needs, yet are often overlooked in mainstream cancer research and practice. 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,” said Professor Ussher.
“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.”
“Our research is guided by a substantive group of community stakeholders, including LGBTQI+ cancer survivors, and led by a multi-disciplinary team of investigators. It is a privilege to work with such a passionate and knowledgeable group of experts, and to lead this groundbreaking research.”
The Out with Cancer team is currently analysing the data from its landmark study of LGBTQI+ patients, carers and health staff. The preliminary findings indicate 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 findings also point 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.
With an estimated 150,000 LGBTQI+ cancer survivors in Australia, and 20,000 additional cases each year, the needs and concerns of LGBTQI+ people are rarely discussed in cancer information and support. Professor Ussher and her team are working to change this.
Joining them on their journey are a number of valued stakeholders, including major partner Cancer Council NSW, alongside the Prostate Cancer Foundation of Australia, Breast Cancer Network Australia, Canteen, LGBTI Health Alliance and ACON.
“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.”