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

Supportive Care in Cancer volume 27, pages 2525–2532 (2019)Cite this article

Abstract

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.

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Acknowledgements

The researchers wish to thank Drs. Kyle Trenshaw, Ben Chapman, Caroline Silva, Christopher Corona, and Nicole Trabold for their feedback on the manuscript.

Funding

This research was supported by the DAISY Foundation’s J. Patrick Barnes Grant for Nursing and by NIH grants K07 CA190529 and UG1 CA189961. The authors have no financial relationship with the organizations that sponsored the research. The authors have full control of all primary data and agree to allow these data to be reviewed if requested.

Author information

Author notes

  1. Charles S. Kamen and Alison Alpert contributed equally to this work.

Affiliations

  1. University of Rochester, Saunders Research Building, 265 Crittenden Blvd, Box 420658, Rochester, NY, 14642, USA

    Charles S. Kamen, Alison Alpert, Megan Lytle & Sally A. Norton

  2. National LGBT Cancer Network, New York, NY, USA

    Liz Margolies

  3. University of Michigan, Ann Arbor, MI, USA

    Jennifer J. Griggs & Lynae Darbes

  4. California State University San Bernardino, San Bernardino, CA, USA

    Marilyn Smith-Stoner

  5. Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Tonia Poteat

  6. The Torvus Group, Beverly Hills, CA, USA

    NFN Scout

Authors
  1. Charles S. Kamen
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  2. Alison Alpert
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  3. Liz Margolies
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  4. Jennifer J. Griggs
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Corresponding author

Correspondence to Charles S. Kamen.

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Kamen, C.S., Alpert, A., Margolies, L. et al. “Treat us with dignity”: a qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer. Support Care Cancer 27, 2525–2532 (2019). https://doi.org/10.1007/s00520-018-4535-0

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  • DOI: https://doi.org/10.1007/s00520-018-4535-0

Keywords

  • Cancer
  • Sexual orientation
  • Gender identity
  • Health disparities
  • Sexual and gender minorities