“Treat us with dignity”: a qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer

• Published in: Supportive care in cancer Vol. 27; no. 7; pp. 2525 - 2532
• Main Authors: Kamen, Charles S., Alpert, Alison, Margolies, Liz, Griggs, Jennifer J., Darbes, Lynae, Smith-Stoner, Marilyn, Lytle, Megan, Poteat, Tonia, Scout, NFN, Norton, Sally A.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01.07.2019; Springer; Springer Nature B.V
• Subjects: Bisexuality; Cancer; Cancer patients; Female; Gays & lesbians; Gender identity; Health disparities; Humans; Lesbians; Male; Medicine; Medicine & Public Health; Neoplasms - psychology; Nursing; Nursing Research; Oncology; Oncology, Experimental; Original Article; Pain Medicine; Patient satisfaction; Patients rights; Qualitative Research; Quality of care; Rehabilitation Medicine; Sexual and Gender Minorities - psychology; Sexual Behavior - psychology; Social aspects; Surveys; Surveys and Questionnaires; Transgender persons; Womens health; Sexual orientation; Sexual and gender minorities; Gender identity; Cancer; Health disparities
• ISSN: 0941-4355; 1433-7339; 1433-7339
• DOI: 10.1007/s00520-018-4535-0

Purpose Despite indications that lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients have unique needs when seeking healthcare, the experiences of LGBTQ patients in the context of cancer care have not been fully explored. This qualitative study investigated recommendations offered by LGBTQ patients with cancer for improving cancer care. Methods Two hundred seventy-three LGBTQ people across the USA who had been diagnosed with cancer completed an online survey that included open-ended questions. Using responses to these questions, two researchers independently conducted open coding. A code book was generated collaboratively and the data were coded independently. Codes were clustered and refined and the data were independently re-coded. Results Five themes emerged. LGBTQ patients with cancer: (1) are affected by providers’ LGBTQ-specific knowledge and skills, assumptions, and mistreatment; (2) negotiate disclosure of identities based on safety of clinical encounters; (3) have differing experiences based on multiple intersecting identities; (4) receive more effective care when members of their support networks are included; and (5) are self-advocates and undergo transformative experiences in the face of morbidity and marginalization. Conclusions LGBTQ cancer survivors report challenges accessing competent cancer treatment. To address this, cancer care providers should provide safe clinical encounters, inquire about and respond professionally to patients’ identities and identifiers, include chosen support people, provide care relevant to patients’ gender identities, and address treatments’ effects on sexuality. Training providers about diverse LGBTQ communities and acknowledging the strengths of LGBTQ patients with cancer may improve provider/patient relationships. Provider training could be created based on these principles.