A Meta-Ethnography on the Impact of Cancer for Lesbian and Queer Women and Their Partners
By Trisha Raque
Among the nearly one million lesbian, gay, bisexual and transgender cancer survivors in the United States, LGB women cancer survivors report the worst quality of life. LGB women cancer survivorship needs often go unmet and oncology providers express a desire for a deeper understanding of their specific survivorship issues, including how to incorporate important aspects of survivors’ social support networks into care. As part of efforts to increase access to affirmative cancer care, we need to amplify the voices of lesbian/queer women cancer survivors and their partners.
We originally planned to study how cancer affects the relationships of lesbian/queer women and their partners using the method meta-ethnography, which allowed us to integrate findings across 20 different qualitative studies. But as we dug into qualitative data, we realized that we could not truly understand the impact of cancer on lesbian/queer women survivors’ romantic relationships without situating those relationships within the systems of which they were a part—family, healthcare, and socio-political systems. Their marginalized intersecting identities as women and lesbian/queer; as well as other salient identities such as those related to race, ethnicity, social class, age, and/or religion; influenced how they were treated by and how they navigated the cancer care system, thereby affecting their romantic relationships. Furthermore, the protections provided by legal policies and access to supportive work (e.g., inclusive employee-sponsored insurance policies) and family spaces (e.g., supportive family-of-origin) influenced their resources as they faced cancer. Findings across all 20 studies moved beyond the impact of cancer on how lesbian/queer couples interacted with each to also include the impact of systemic factors related to intersectionality, oppression, and marginalization.
Our results revealed critical aspects of affirmative cancer care, including providers incorporating survivors’ support systems into care. Survivors noted the risk to their livelihood that cancer posed, and that seeking cancer care in non-affirming environments also threatened their safety. Some worried that access to life-saving cancer care treatment could be threatened by heteronormative discrimination. Lesbian/queer survivors and their partners described how they assessed for safety in cancer care based on a wide range of factors. For example, the representation of LGBQ+ identities in cancer care policies (e.g., who was included in treatment decision-making), electronic medical records (e.g., space to list “partner” rather than “husband”), and physical materials (e.g., pamphlets) matters. They also paid attention to whether cancer centers offered support spaces (e.g., groups) specific for lesbian/queer cancer survivors and partners. Having to come out again and again in various cancer support spaces could be a heavy burden to carry. Moreover, survivors requested that providers address how cancer affected their sexual health and body image without perpetuating heteronormativity. For example, lesbian/queer breast cancer survivors and their partners conveyed beauty standards and perceptions of their breasts that were not driven by heteronormative standards of attractiveness. Rather than make assumptions about whether survivors would want reconstruction after mastectomy, lesbian/queer survivors and partners sought providers who would remain patient-centered and offer all post-mastectomy options, including declining reconstruction.
Disclosure of sexual orientation within cancer care was highlighted as a critical aspect with repercussions their relationships. Making the decision of whether and/or how to disclose held much emotional weight, as survivors expressed the need to be hyper-vigilant to whether their partners would be respected. They struggled to lean on partners for support if partners were not even acknowledged, much less valued, by their cancer care team as they made treatment decisions. Our findings revealed that providers hold the responsibility for creating validating, structural opportunities for disclosure. For example, patient paperwork that is inclusive in language and options is a critical first step, with staff implementing respectfully the information shared in the patient paperwork as the next step. The structure of the medical record and how it is utilized by staff could be ways to operationalize cultural responsiveness.
In summary, our findings reveal that to offer affirmative cancer care for lesbian/queer women and their partners, providers must cultivate awareness of the negative systemic experiences, including discriminatory interactions with cancer care providers, that lesbian/queer women and partners may have experienced or may anticipate. Providers can convey cultural humility, empathy, respect, and inclusivity as they work to offer affirmative cancer care.
Article Details
A Meta-Ethnography on the Impact of Cancer for Lesbian and Queer Women and Their Partners
Trisha L. Raque, Kaitlin V. Ross, Anna R. Hangge, and Rebecca C. Gaines
First published online February 20, 2023
DOI: 10.1177/10497323231155403
Qualitative Health Research
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