Poster Presentation Cancer Survivorship Conference 2023

Out with Cancer: LGBTQI Cancer Survivorship and Care (#152)

Jane M Ussher 1 , Julie Rae 2 , Rosalie Power 1 , Janette Perz 1
  1. Translational Health Research Institute, Western Sydney University, Sydney
  2. Breast Cancer Network Australia, Melbourne, Victoria, Australia

There is growing acknowledgement of the psycho-social vulnerabilities and health disparities experienced by people with cancer and carers who are lesbian, gay, bisexual, trans, queer and intersex (LGBTQI). This paper provides insight to these issues drawing on a multi-method Australian Research Council Linkage funded research project, involving surveys, semi-structured interviews and photo-elicitation. 430 LGBTQI patients, representing a range of tumor types, sexual and gender identities, and age groups, 131 LGBTQI carers, and 357 oncology healthcare professionals (HCPs) took part in the study. We also report on our review of  LGBTQI inclusiveness of 61 Australian cancer information websites, and Breast Cancer Network Australia’s (BCNA) translation of the findings into targeted resources for LGBTIQ people.

LGBTQI people with cancer and their carers reported rates of distress significantly higher than the general cancer population, associated with minority stress (discrimination in life and cancer care, discomfort in being LGBTQI, outness to others), impact of cancer on gender and LGBTQI identities, lack of social support, physical concerns and sexual concerns.  Disclosure of identity was a major cause of distress, with less than 1 in 5 ‘out’ to all  HCPs involved in their cancer care.  HCPs reported lack of confidence and knowledge treating LGBTQI cancer patients and wanted more education. Only 13% of Australian cancer organisations mentioned LGBTQI people on their websites; cancer information often made cis-heteronormative assumptions that excluded LGBTQI people. Using these findings, BCNA established an LGBTQI advisory committee and collaborated with us in a co-design process to develop a suite of resources for LGBTIQ people with breast cancer that were culturally safe and patient-centred.  Targeted resources for LGBTQI people across other tumor types are being developed.  There is a need for inclusion of  HCP communicative competence to work with LGBTQI patients as an essential part of basic training and ongoing professional development.

 

 

 

  1. Ussher, J. M., Power, R., Perz, J., Hawkey, A. J., & Allison, K. (2022). LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives. Frontiers in Oncology, 12. https://doi.org/10.3389/fonc.2022.832657
  2. 2. Ussher, J. M., Perz, J., Allison, K., Power, R., Hawkey, A., Dowsett, G. W., Hickey, M., Parton, C., McDonald, F. E. J., Davis, I. D., Quinn, G. P., Boydell, K., Robinson, K. H., Chambers, S., & Anazodo, A. (2022). 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. Patient Education and Counseling, 105(7), 2512-2523. https://doi.org/10.1016/j.pec.2021.12.008
  3. Power, R., Ussher, J. M., Perz, J., Allison, K., Hawkey, A. J., & Team., T. O. w. C. S. (2022). “Surviving discrimination by pulling together”: LGBTQI cancer patient and carer experiences of minority stress and social support. Frontiers in Oncology, 12, 918016. https://doi.org/10.3389/fonc.2022.918016
  4. Ussher, J. M., Allison, K., Perz, J., Power, R., & The Out with Cancer Study Team. (2022). LGBTQI Cancer Patients’ Quality of Life and Distress: A Comparison by Gender, Sexuality, Age, Cancer Type and geographical remoteness. Frontiers in Oncology, 12:873642. https://doi.org/10.3389/fonc.2022.873642