Communities

Cancer in Sexual and Gender Minorities: Role of Oncology RNs in Health Equity

Kurt David

Mary Elizabeth Davis

sexual and gender minority, health equity, welcoming care
CJON 2024, 28(3), 329-334. DOI: 10.1188/24.CJON.329-334

Despite comprising almost 8% of the population of the United States, sexual and gender minority (SGM) patients with cancer experience health inequities with poorer outcomes than non-SGM patients. Although sex-based guidelines exist for certain cancers, including prostate and cervical cancer, visibility into the specific needs of SGM patients is lacking because of the absence of systematic data collection and population-based studies. Oncology RNs are pivotal in providing patient-centered care inclusive of SGM people living with cancer. This article reviews current progress in cancer care for SGM patients and emphasizes the role of the oncology RN.

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    The concept of patient-centered care, despite its wide acceptance in oncology nursing, still excludes many sexual and gender minority (SGM) individuals. Sexual minorities include individuals who identify as gay, lesbian, or bisexual, and gender minorities include individuals whose gender identity or expression is discordant from their sex assigned at birth (Centers for Disease Control and Prevention, 2022). SGM terminology evolves as researchers study, learn, and publish about different identities and orientations. Table 1 provides current definitions for some commonly used terms. Although research initiatives among SGM patients with cancer have matured, the SGM community continues to face multiple challenges that create barriers to accessing care equivalent to that received by non-SGM patients. The absence of robust, disaggregated SGM research has resulted in a lack of population-tailored, evidence-based guidelines. Many outcomes specific to SGM individuals are invisible because health systems do not consistently or systematically collect sexual orientation and gender identity (SOGI) data using standardized intake processes (Lynch et al., 2021; Scout, 2023). The systematic suppression of SGM-specific data results in cancer screening guidelines that vary little from those for the general population, despite evidence suggesting a higher risk of certain cancers in SGM patients (Hudson et al., 2017; Lombardo et al., 2022; Scout, 2023).

    TABLE1

    The experiences of SGM patients with cancer accessing health care differ in distinct ways from those of their non-SGM counterparts (Leone et al., 2023; Lisy et al., 2018; Ussher et al., 2023). For example, heterosexual or cisgender individuals can assume they will not be turned away from cancer care based on being heterosexual or cisgender, but SGM patients with cancer cannot assume that they will receive care when coming out to their healthcare providers (HCPs) (Scout, 2023). SGM patients with cancer may also face estranged biologic family relationships after coming out, resulting in the need to assemble a chosen family for informal caregiving during the cancer trajectory (Neville & Henrickson, 2009). RNs continue to be the most trusted health professionals in the United States (Brenan, 2023) and, therefore, have a powerful platform to help close the gap in equitable cancer care for SGM patients. This article reviews current progress in cancer prevention and treatment in SGM patients and describes the role of the oncology RN in the care of and advocacy for this patient population.

    Cancer in SGM Patients

    Almost one million adult cancer survivors in the United States identify as SGMs (National LGBT Cancer Network, n.d.), although specific cancer diagnoses in SGM individuals are difficult to quantify because of systematic data suppression (Leone et al., 2023; Scout, 2023). Although large national population databases, such as the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program; the Centers for Disease Control and Prevention’s National Program of Cancer Registries; and the American College of Surgeons’ National Cancer Database do not capture SOGI data (Cathcart-Rake, 2018; Haviland et al., 2020), the National Institutes of Health’s (2023) All of Us Research Program does collect SOGI data to deliver precision medicine. Among SGM patients, prevalent and unique cancer diagnoses include human papillomavirus–related throat or anal cancer with a concurrent HIV diagnosis, as well as hormone-interactive cancers (i.e., cancers that may interact with hormone treatment associated with gender transitioning) (Leone et al., 2023; Scout, 2023). Limited evidence resulting from the systematic suppression and absence of SOGI data in cancer registries frequently contributes to reliance on the SGM patient’s HCP for decision-making; the HCP may or may not want to screen for or treat cancer for the following reasons: (a) absence of robust research; (b) lack of competence or personal knowledge on population-specific care; or (c) discrimination, stigma, or homophobia (Scout, 2023).

    Screening and Prevention

    Some populations, such as SGM patients, are considered underscreened or less likely to receive cancer screening according to established guidelines or timely diagnosis and treatment of cancer compared to the general population (Cathcart-Rake et al., 2019). Screening among SGM patients is affected by a lack of competence among HCPs, as well as a lack of evidence-based guidelines specific to SGM populations (Haviland et al., 2020). In addition, SGM individuals are less likely to have a medical home (i.e., a single, centralized source of care where an individual can receive competent, patient-centered care [Jackson et al., 2013]) than non-SGM individuals, lessening the opportunity for SGM individuals to receive cancer screenings or address personal cancer risk behaviors (Scout, 2023). Established cancer screening guidelines for the general population are intended for use without population-specific guidelines. An individualized risk-based assessment can be performed with consideration of genetics, family and personal history, lifestyle, and cancer risk behaviors (Leone et al., 2023). Screening guidelines for transgender patients may be slightly different because the use of exogenous hormones or surgical history may warrant changes in screening (Cathcart-Rake, 2018). Screening schedules depend on a range of factors including individual risk stratification, testing results, and biology or anatomy (including reproductive organs) and occur within the context of patient–provider shared decision-making.

    Navigating Care as an SGM Patient

    Although treatment plans may appear similar between SGM and non-SGM patients with cancer, there are burdens unique to SGM patients navigating the health system, including discrimination, expectations of rejection, and internalized homophobia. SGM patients have described the healthcare environment as unwelcoming, heterocentric, homophobic, and unsupportive (Lisy et al., 2018; Reich et al., 2022). Transgender patients report that navigating health care involves the initial decision-making to enter the healthcare system (often with expectations of rejection), identifying HCPs who are trans-competent, and maintaining relationships with HCPs once established (Roller et al., 2015). Throughout the cancer trajectory, the SGM patient will interact with various team members who inform that patient’s perception of belonging, including front desk staff and HCPs. Considering the additional psychological burden of an SGM patient, health systems must create environments that are accepting, validating, and nonjudgmental, thereby allowing discussion of SOGI as it relates to specific healthcare needs (Roller et al., 2015). In waiting areas or examination rooms, visual cues of acceptance, such as SGM-representative artwork or posters of nondiscrimination policies, as well as gender-neutral language on forms and during interactions, can create a welcoming environment for the SGM patient (Kano et al., 2022; Weber, 2009).

    When care is needed, SGM patients may search for indicators of SGM-competent HCPs and health systems on the internet. A survey by the National LGBT Cancer Network showed that 21% of SGM cancer survivors intentionally sought care at a welcoming cancer center (Scout & Rhoten, 2021). The Healthcare Equality Index, a national benchmarking tool that assesses a health system’s policies and practices related to SGM patients, visitors, and employees, is one indicator of SGM inclusion (Human Rights Campaign, 2022). The Healthcare Equality Index provides an interactive map illustrating the geographic location of rated facilities across the United States that demonstrate SGM best practices, including SGM-inclusive patient and employee nondiscrimination policies, visitation policies, and staff training (Human Rights Campaign, 2022).

    Disclosing SGM Status to Providers

    Heterosexism is the belief that heterosexuality is the preferred and standard sexual orientation; assumes that all patients are heterosexual; and ignores, invalidates, or derogates SGM behaviors, relationships, and lifestyles (Herek et al., 1991). For SGM patients with cancer, disclosure of gender or identity status to HCPs additionally complicates the everyday challenges resulting from cancer and its treatment. In a study by Kamen et al. (2015), of the 79% of patients with cancer who disclosed their SGM status, 34% did so to correct an HCP’s heteronormative assumptions. Once trust with HCPs is established following disclosure, resulting in increased satisfaction with care, SGM patients still desire to have more open, direct conversations about their SOGI (Kano et al., 2022). SGM patients in rural areas are less likely to disclose their sexual orientation to HCPs than their urban counterparts (Joudeh et al., 2021). SGM patients who attend disease-specific support groups report a lack of support for their needs, and they do not feel comfortable discussing their sexual orientation (Lisy et al., 2018). To support patients’ disclosure to the healthcare team, HCPs can evaluate their own biases and attitudes, including heteronormativity, and take proactive measures to provide nonjudgmental care and promote inclusivity (Reich et al., 2022).

    Support Structures in SGM Communities

    Social networks and community structures are essential during the cancer trajectory. SGM patients may construct chosen families, also known as “lavender families,” which may be a departure from the biologic or heteronormative family structure (Neville & Henrickson, 2009, p. 849). Relationships within an SGM patient’s support network may range from supportive or estranged biologic family members and friends to exclusive, nonexclusive, or past sexual or romantic partners. In addition, children may be present with consideration of whether they were born before or following the SGM patient’s coming out experience. Inclusion of the SGM patient’s support network throughout the cancer trajectory demonstrates acceptance; this is particularly important within education and discussions of diagnosis, treatment, and survivorship (David et al., 2022; Honea & Lindsey, 2022; Mahon, 2022). It is also essential to consider that some SGM patients, particularly older adults, may live alone or have a limited practical support network, thereby creating a deficit in the informal caregiving often needed during the cancer journey (Cathcart-Rake et al., 2019). Cancer HCPs must offer opportunities to disclose SGM status within a psychologically safe environment. Opening a discussion between the SGM patient with cancer and HCPs to evaluate available support can help identify potential caregivers and enhance referrals to outside services as clinically appropriate (Boehmer et al., 2018).

    End of Life and the SGM Patient

    HCPs can advocate for SGM patients at the end of life (EOL). Despite legal recognition of same-sex marriage and the associated legal protections, SGM couples continue to face multiple levels of discrimination and stigmatization (Reich et al., 2022). An example of this discrimination occurs when same-sex marriage rights may not be recognized within EOL decision-making. As a result, motivations of SGM patients for completing advance care planning include (a) wanting a sense of agency and control over EOL care, often when intimate relationships are invisible or subject to discrimination from families and HCPs; (b) past exposure to EOL experiences; and (c) wanting to reduce conflict and confusion among loved ones when an intimate relationship may not have been respected (Seelman et al., 2019). In instances where same-sex marriage rights are not recognized or in SGM couples who have not legally married, HCPs can offer support for the completion of a living will, healthcare proxy, or durable power of attorney. Demonstrating advocacy through support for institutional, state, and national policy changes surrounding surrogacy and decision-making at EOL promotes an SGM-inclusive environment.

    Nursing Role in Cancer Treatment

    The role of the oncology RN is paramount and varies based on the SGM patient’s trajectory. Nurses must stay current on the evolving evidence-based recommendations for SGM patients within their clinical settings (e.g., human papillomavirus vaccination in primary care, advance care planning in palliative care) and advocate for timely adoption in these settings. RNs can review screening guidelines for the general population and collaborate with SGM subject matter experts and community-based organizations, such as the National LGBT Cancer Network (n.d.), to determine tailored cancer care. During active treatment for cancer, RN involvement includes supporting the SGM patient through the side effects associated with surgery, chemotherapy, and radiation therapy (Parks, 2022; Pierce, 2022; Vlcek, 2022). The RN should be mindful to include the social network of the SGM patient, such as the patient’s chosen family, during education. RNs can readily identify community resources to break through barriers to clinical care if services for SGM patients are unavailable within a particular health system. Figure 1 provides resources for education and inclusion.

    FIGURE1

    Conclusion

    Stigmatization in the healthcare setting may prevent SGM patients from accessing care, including routine screening and prevention, thereby increasing the likelihood of later-stage diagnoses. In addition, the paucity of research on SGM-specific health outcomes contributes to the absence of evidence-based, population-tailored guidelines. SGM patients have unique needs and challenges when navigating the health system, including the disclosure of SGM status to HCPs and the burden of finding HCPs who are competent in the unique needs of SGM patients. RNs must stay knowledgeable about evolving literature regarding care for SGM patients and advocate for practices that are inclusive and responsive to their needs. RNs are involved at many time points across the care trajectory of the SGM patient with cancer, including screening, patient/caregiver education, treatment, survivorship, and EOL. Future research is needed to describe the unique health needs of SGM patients to develop population-tailored guidelines and interventions.

    About the Authors

    Kurt David, MS, RN, AOCNS®, BMTCN®, is an oncology clinical nurse specialist at Stanford Health Care in Palo Alto, CA; and Mary Elizabeth Davis, DNP, RN, CHPN®, AOCNS®, is a clinical nurse specialist at Memorial Sloan Kettering Cancer Center in New York, NY. The authors take full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. David can be reached at KuDavid@stanfordhealthcare.org, with copy to CJONEditor@ons.org.

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