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. 2022 Jun 24:12:918016.
doi: 10.3389/fonc.2022.918016. eCollection 2022.

"Surviving Discrimination by Pulling Together": LGBTQI Cancer Patient and Carer Experiences of Minority Stress and Social Support

Rosalie Power  1 , Jane M Ussher  1 , Janette Perz  1 , Kimberley Allison  1 , Alexandra J Hawkey  1
Affiliations

"Surviving Discrimination by Pulling Together": LGBTQI Cancer Patient and Carer Experiences of Minority Stress and Social Support

Rosalie Power et al. Front Oncol. .

Abstract

Background: Lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer and their carers report poorer psychological outcomes than the general non-LGBTQI cancer population. There is growing acknowledgement that these health inequities can be explained by minority stress, which can be buffered by social support.

Study aim: To examine subjective experiences of minority stress and social support for LGBTQI people with cancer and their carers, drawing on qualitative findings from the Out with Cancer study.

Method: An online survey including open ended items was completed by 430 LGBTQI cancer patients and 132 partners and other carers, representing a range of tumor types, sexual and gender identities, age and intersex status. A sub-sample of 104 patients and 31 carers completed an interview, with a follow-up photovoice activity and second interview completed by 45 patients and 10 carers. Data was thematically analysed using an intersectional theoretical framework.

Results: Historical and present-day experiences of discrimination, violence, family rejection and exclusion created a legacy of distress and fear. This impacted on trust of healthcare professionals and contributed to distress and unmet needs in cancer survivorship and care. 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. However, 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 wellbeing. Despite the chronic, cumulative impacts of minority stress, LGBTQI patients and carers were not passive recipients of discriminatory and exclusion in cancer care, demonstrating agency and resistance through collective action and advocacy.

Conclusion: LGBTQI people have unique socio-political histories and present-day psycho-social experiences that contribute to distress during cancer. Social support serves to buffer and ameliorate this distress. There is a need for cancer healthcare 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 carers.

Keywords: LGBTQI; adolescents and young adults (AYA); cancer; discrimination; intersex; minority stress; social support; transgender (binary and non-binary).

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

Figure 1
Figure 1
Thematic map.
Figure 2
Figure 2
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]
Figure 3
Figure 3
Shutters. When you’re going through cancer treatment, and you've had your diagnosis and everything, it's really important to choose who to let in. Most of the people I spent quality time with were people who I’d intentionally chosen to let into my life. [Mary, 54. Lesbian, breast cancer].
Figure 4
Figure 4
My husband. This is my husband. He, of course, was my main support. As the most important person in my life by way of- well, lots things, but way of support through this. He looked after me in that period no questions asked, no ifs or buts. He took on that role of caring for me. [Rodney. 57, gay man, skin cancer]
Figure 5
Figure 5
Lesbian support. This painting is about celebrating lesbianism and same-sex relationships. There are about 40 women that come to this group. We all get together and help each other; we’re all working for a common cause – to look after each other as lesbians and to provide support to 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 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'd all been there and they probably all experienced it. [Paulette, 67, lesbian, colorectal]
Figure 6
Figure 6
LGBTQ+ activism. Here we are at a pride march. We all had t-shirts and arrows saying different things about our sexualities, genders and interests. Showing that we as a community are completely diverse. I also wore a t-shirt that said, “know your prostate” and as we walked along, I handed out pamphlets about a prostate cancer support group for LGBT people. It felt really important to me to be involved in this activism around sexuality and prostate cancer. [Ryan, 60, gay, prostate cancer]
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