by Ali Sardyga, Western Sydney University

Interiority landmines cycle. 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. [Ellen, 36, lesbian, gynecological cancer]. Credit: Frontiers in Oncology (2022). DOI: 10.3389/fonc.2022.918016

A study led by Western Sydney University has shed new light on the experiences of lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people in cancer survivorship.

The study published in Frontiers in Oncology found historical and present-day experiences of discrimination, violence, family rejection and exclusion created a legacy of distress and fear that impacted trust of health care professionals and contributed to distress and unmet needs in cancer survivorship and care.

It also found social support, often provided by partners and other chosen family, including intimate partners and other LGBTQI people, buffered the negative impacts of minority stress, helping LGBTQI patients deal with cancer.

The study drew on qualitative findings from the Out with Cancer study, including online surveys with 430 LGBTQI cancer patients and 132 partners and caregivers representing a range of tumor types, sexual and gender identities, age and intersex status and interviews with 104 patients and 31 caregivers.

Lead author Professor Jane Ussher, from the School of Medicine and Translational Health Research Institute, said the study highlighted the complexities of caring for LGBTQI people with cancer and the impact of both a legacy of mistrust and the power of peer-support.

"We know that lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer and their caregivers report poorer psychological outcomes than the general non-LGBTQI cancer population," said Professor Ussher.

"It's not unexpected that LGBTQI peoples' experiences of historical and present-day discrimination are contributing to stress they felt receiving care as a member of a minority group, but that this was able to be buffered by social support is a positive way forward."

LGBTQI patients and caregivers were found not to be passive recipients of discrimination and exclusion in cancer care, demonstrating agency and resistance through collective action and advocacy, despite the chronic, cumulative impacts of minority stress.

Despite the positive impact of support found by the study, some participants lacked support due to not having a partner, rejection from family of origin and lack of support within LGBTQI communities, increasing vulnerability to poor psychological well-being.

"There is a need for cancer health care professionals and support services to be aware of and responsive to these potential vulnerabilities, including the intersectional differences in experiences of minority stress and social support. There is also a need for recognition and facilitation of social support among LGBTQI people with cancer and their caregivers," said Professor Ussher.

More information: Rosalie Power et al, "Surviving Discrimination by Pulling Together": LGBTQI Cancer Patient and Carer Experiences of Minority Stress and Social Support, Frontiers in Oncology (2022). DOI: 10.3389/fonc.2022.918016

Provided by Western Sydney University