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

Abstract

BackgroundLesbian, 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 AimTo 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.MethodAn 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.ResultsHistorical 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.ConclusionLGBTQI 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.

LGBTQI cancer patients’ quality of life and distress: A comparison by gender, sexuality, age, cancer type and geographical remoteness

“…These findings confirm previous reports of higher levels of societal discrimination ( 108 ) and discrimination in health care ( 109 ) reported by TGD people compared with other SGM groups. This is an explanation for higher rates of distress found in TGD populations outside of the context of cancer ( 56 , 110 ), and impacts upon experiences of cancer survivorship and interactions with health care professionals ( 26 , 60 ). In previous research, TGD people of color, and those who identify as LBQ, are at highest risk of discrimination, harassment and violence ( 111 , 112 ).…”

“…LGBT people living in rural areas of the USA also report high rates of minority stress ( 77 ) and difficulties in interactions with health care providers ( 132 ). In the qualitative arm of the Out with Cancer Study , some participants living in a rural or regional area reported social isolation and social stigma ( 60 ), whereas others reported high levels of community and health care practitioner support due to living in a “rural, small-town area where everyone knows everyone” and which contributed to “being respected” ( 26 ). There needs to be further investigation of LGBTQI cancer survivorship and care outside of urban areas, in order to understand potential health disparities experienced by rural and urban LGBTQI cancer survivors.…”

“…This study was part of a broader mixed methods project, the Out with Cancer Study , which explored LGBTQI experiences of cancer and cancer care from the perspectives of LGBTQI people with cancer, caregivers, and healthcare professionals ( 26 , 60 , 79 ). This paper presents the findings of an online survey completed by 430 LGBTQI people with cancer, examining the psycho-social factors associated with distress and quality of life (QOL).…”

“…Closed-ended questions presented in this paper are described below. Open-ended questions are presented in additional publications ( 26 , 60 ).…”

“…Minority stress, the chronic and cumulative stress on those with stigmatized sexual and gender identities ( 53 , 54 ), has been put forward as an explanation for the high rates of distress reported in the general LGBTQI population ( 55 – 59 ), and as a factor contributing to distress in LGBTQI cancer survivors ( 1 , 60 ). Minority stress includes stigma, social exclusion, and discrimination commonly associated with LGBTQI identities (described as distal stressors), as well as negative self-beliefs and expectations of LGBTQI people, including internalized homophobia, concealment of identity, and stigma consciousness – vigilance and expectation of rejection in social interactions (described as proximal stressors) ( 61 , 62 ).…”