LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives

Ussher, Jane M.; Power, Rosalie; Perz, Janette; Hawkey, Alexandra; Allison, Kimberley R.

doi:10.3389/fonc.2022.832657

Cited by 21 publications

(46 citation statements)

References 94 publications

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“…The internalization of anti-LGBTQI sentiments contributes to negative self-views, identity concealment and expectations of rejection, hostility and potential future victimization (described as proximal stressors) (22)(23)(24). Supporting this theory, distress reported by LGBTQI cancer patients is significantly associated with experiences of discrimination in life and cancer care (3,25,26), accompanied by identity concealment and expectations of future hostility (27).…”

Section: Introductionmentioning

confidence: 85%

“…This study was part of the broader mixed methods Out with Cancer project (27,(53)(54)(55). The project examined LGBTQI experiences of cancer from the perspectives of LGBTQI patients, their caregivers, and healthcare professionals (HCPs), in order to inform LGBTQI inclusive cancer care.…”

Section: Study Design and Theoretical Frameworkmentioning

confidence: 99%

Section: "It Still Goes On": Living With Discrimination and Prejudice...mentioning

confidence: 99%

“…Several participants discussed an "ominous" 27 increase in recent years of anti-LGBTQI public discourse, including "redneck" comments 27 and "transphobia in the media" 28 . This engendered fear that the conservative minority would legislate discrimination against and erode LGBTQI rights as "a revenge tactic for 'you gays and lesbians who got your way'" in relation to marriage equality 27 . As Raymond, a 55-year-old gay man with prostate cancer, commented, "What a lot of us rainbowians, rainbow community people, want is just for the right-wing people to not ruin how things have progressed over the years".…”

Section: "It Still Goes On": Living With Discrimination and Prejudice...mentioning

confidence: 99%

“…The present analysis aimed to address this gap in the research literature by examining subjective experiences of minority stress and social support among LGBTQI people with cancer and their carers, drawing on the qualitative findings from the mixed method Out with Cancer study (27,(53)(54)(55). This complements quantitative analysis from this study, which found higher rates of distress among LGBTQI people with cancer compared with general cancer populations, associated with minority stress and lack of social support (53).…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2022

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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.

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Section: Introductionmentioning

confidence: 85%

Section: Study Design and Theoretical Frameworkmentioning

confidence: 99%

Section: "It Still Goes On": Living With Discrimination and Prejudice...mentioning

confidence: 99%

Section: "It Still Goes On": Living With Discrimination and Prejudice...mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

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

et al. 2022

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Loneliness and Social and Emotional Support Among Sexual and Gender Minority Caregivers

Xie,

Hamadi,

Terrell

et al. 2024

JAMA Netw Open

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ImportanceSexual and gender minority (SGM) adults in the US are more likely than their non-SGM counterparts to provide informal care to their family members and/or friends. Caregiving can impose substantial physical, mental, and social connection issues on caregivers.ObjectiveTo examine the associations among loneliness, lack of social and emotional support, sexual orientation, gender identity, and informal caregiving status.Design, Setting, and ParticipantsThis population-based, cross-sectional study used data from the 2022 Behavioral Risk Factor Surveillance System collected from noninstitutionalized US civilian residents aged 18 years or older. Data analysis was conducted from June to July 2024.Main Outcomes and MeasuresThe primary dependent variables included self-reported dichotomized (yes vs no) loneliness and lack of social and emotional support. The primary independent variables were sexual orientation (straight, gay or lesbian, bisexual, or something else), gender identity (cisgender and transgender), and informal caregiving status (yes vs no). A binomial distribution and log link function were used to derive adjusted prevalence ratios (APRs) and their respective 95% CIs for each outcome measure.ResultsThe analytic sample included 43 693 US adults (23 223 [51.6%] female at birth). In multivariable regression analyses adjusting for sociodemographic and health factors, among caregivers only, and compared with straight individuals, loneliness was significantly more likely among lesbian or gay individuals (APR, 1.30; 95% CI, 1.11-1.51), bisexual individuals (APR, 1.26; 95% CI, 1.12-1.43), and those who identify as something else (APR, 1.26; 95% CI, 1.09-1.46). Similarly, for noncaregivers, lesbian or gay individuals (APR, 1.34; 95% CI, 1.15-1.57), bisexual individuals (APR, 1.47; 95% CI, 1.34-1.61), and individuals identifying as something else (APR, 1.41; 95% CI, 1.25-1.58) experienced significantly higher risk of loneliness than straight noncaregivers. Transgender caregivers were more likely than cisgender caregivers to report loneliness (APR, 1.34; 95% CI, 1.24-1.46). In terms of lack of social and emotional support, bisexual caregivers (APR, 1.21; 95% CI, 1.00-1.48) and caregivers identifying as something else (APR, 1.34; 95% CI, 1.09-1.66) were significantly more likely than straight caregivers to report a lack of social and emotional support. Similarly, both bisexual noncaregivers (APR, 1.44; 95% CI, 1.28-1.63) and noncaregivers identifying as something else (APR, 1.38; 95% CI, 1.18-1.61) experienced a significantly higher risk of lacking support compared with straight noncaregivers.Conclusions and RelevanceIn this cross-sectional study of social connections, SGM adults experienced significantly higher levels of loneliness compared with straight adults, irrespective of caregiving status. Furthermore, caregiving exacerbated these disparities across SGM subgroups. Patterns of lack of social and emotional support mirrored those of loneliness across different SGM and caregiving subpopulations, with nuances emerging upon adjustment for individual characteristics.

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Reinforcing or Disrupting Gender Affirmation: The Impact of Cancer on Transgender Embodiment and Identity

et al. 2023

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There is a pressing need for greater understanding and focus on cancer survivorship and informal cancer caring of trans people (binary and non-binary), across tumor types, to inform culturally safe trans inclusive cancer information and care. This qualitative study, part of the mixed methods Out with Cancer project, examined experiences of trans embodiment and identity after cancer diagnosis and treatment. We drew on open-ended survey responses from 63 trans cancer survivors and 23 trans cancer carers, as well as interviews and a photo-elicitation activity with a subset of 22 participants (15 cancer survivors, 7 cancer carers). Reflexive thematic analysis identified three themes: Cancer enhances trans embodiment, through experiences of gender euphoria following cancer treatment, and acceleration of decisions about gender affirmation; cancer erases or inhibits gender affirmation; trans embodiment is invisible or pathologized in cancer care. These findings demonstrate that trans embodiment and identity, as well as the process of gender affirmation, may be disrupted by cancer or informal cancer caring. Conversely, cancer and cancer treatment can positively impact the embodied identity and lives of trans people, despite the anxiety and strain of negotiating medical procedures. However, if healthcare professionals operate within a cis-heteronormative framework and do not understand the meaning of embodied change following cancer treatment for trans individuals, these positive benefits may not be realized.

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LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives

Cited by 21 publications

References 94 publications

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

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

Loneliness and Social and Emotional Support Among Sexual and Gender Minority Caregivers

Reinforcing or Disrupting Gender Affirmation: The Impact of Cancer on Transgender Embodiment and Identity

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