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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

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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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References

  1. Boehmer U, Glickman M, Winter M, Clark MA (2013) Lesbian and bisexual women’s adjustment after a breast cancer diagnosis. J Am Psychiatr Nurses Assoc 19(5):280–292. https://doi.org/10.1177/1078390313504587

    Article  PubMed  Google Scholar 

  2. Kamen C, Palesh O, Gerry A, Andrykowski MA, Heckler CE, Mohile SG, Morrow GR, Bowen D, Mustian KM (2014) Disparities in health risk behavior and psychological distress among gay versus heterosexual male cancer survivors. LGBT Health 1(2):86–92. https://doi.org/10.1089/lgbt.2013.0022

    Article  PubMed  Google Scholar 

  3. Katz A (2009) Gay and lesbian patients with cancer. Oncol Nurs Forum 36(2):203–207. https://doi.org/10.1188/09.ONF.203-207

    Article  PubMed  Google Scholar 

  4. Durso LE, Meyer IH (2013) Patterns and predictors of disclosure of sexual orientation to healthcare providers among lesbians, gay men, and bisexuals. Sex. Res. Soc. Policy 10(1):35–42. https://doi.org/10.1007/s13178-012-0105-2

    Article  Google Scholar 

  5. Alpert AB, CichoskiKelly EM, Fox AD (2017) What lesbian, gay, bisexual, transgender, queer, and intersex patients say doctors should know and do: a qualitative study. J Homosex 64(10):1368–1389. https://doi.org/10.1080/00918369.2017.1321376

    Article  PubMed  Google Scholar 

  6. Kamen CS, Smith-Stoner M, Heckler CE, Flannery M, Margolies L (2015) Social support, self-rated health, and lesbian, gay, bisexual, and transgender identity disclosure to cancer care providers. Oncol Nurs Forum 42(1):44–51. https://doi.org/10.1188/15.ONF.44-51

    Article  PubMed  PubMed Central  Google Scholar 

  7. Grossman AH, Daugelli AR, Hershberger SL (2000) Social support networks of lesbian, gay, and bisexual adults 60 years of age and older. J Gerontol Ser B Psychol Sci Soc Sci 55(3):P171–P179

    Article  CAS  Google Scholar 

  8. White JL, Boehmer U (2012) Long-term breast cancer survivors’ perceptions of support from female partners: an exploratory study. Oncol Nurs Forum 39(2):210–217. https://doi.org/10.1188/12.ONF.210-217

    Article  PubMed  Google Scholar 

  9. Boehmer U, Miao X, Ozonoff A (2011) Cancer survivorship and sexual orientation. Cancer 117(16):3796–3804. https://doi.org/10.1002/cncr.25950

    Article  PubMed  Google Scholar 

  10. Boehmer U, Linde R, Freund KM (2007) Breast reconstruction following mastectomy for breast cancer: the decisions of sexual minority women. Plast Reconstr Surg 119(2):464–472. https://doi.org/10.1097/01.prs.0000246402.79334.3b

    Article  CAS  PubMed  Google Scholar 

  11. Griggs J, Maingi S, Blinder V, Denduluri N, Khorana AA, Norton L, Francisco M, Wollins DS, Rowland JH (2017) American Society of Clinical Oncology position statement: strategies for reducing cancer health disparities among sexual and gender minority populations. J Clin Oncol 35(19):2203–2208. https://doi.org/10.1200/JCO.2016.72.0441

    Article  PubMed  Google Scholar 

  12. von Elm E, Altman DG, Egger M, Pocock SJ, Gotzsche PC, Vandenbroucke JP, Initiative S (2007) The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. Lancet 370(9596):1453–1457. https://doi.org/10.1016/S0140-6736(07)61602-X

  13. Cohen DJ, Crabtree BF (2008) Evaluative criteria for qualitative research in health care: controversies and recommendations. Ann Fam Med 6(4):331–339. https://doi.org/10.1370/afm.818

    Article  PubMed  PubMed Central  Google Scholar 

  14. Morrow SL (2005) Quality and trustworthiness in qualitative research in counseling psychology. J Couns Psychol 52(2):250–260

    Article  Google Scholar 

  15. Quinn GP, Sanchez JA, Sutton SK, Vadaparampil ST, Nguyen GT, Green BL, Kanetsky PA, Schabath MB (2015) Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA Cancer J Clin 65(5):384–400. https://doi.org/10.3322/caac.21288

    Article  PubMed  PubMed Central  Google Scholar 

  16. Boehmer U, Case P (2004) Physicians don’t ask, sometimes patients tell: disclosure of sexual orientation among women with breast carcinoma. Cancer 101(8):1882–1889. https://doi.org/10.1002/cncr.20563

    Article  PubMed  Google Scholar 

  17. Arena PL, Carver CS, Antoni MH, Weiss S, Ironson G, Duran RE (2006) Psychosocial responses to treatment for breast cancer among lesbian and heterosexual women. Women Health 44(2):81–102

    Article  PubMed  Google Scholar 

  18. Kamen CS, Peoples AR, Tejani MA, Flannery M, Janelsins MC, Peppone LJ, Palesh O, Andrykowski M, Morrow GR, Mustian KM (2014) Disparities in psychological distress among lesbian, gay, bisexual and transgender (Lgbt) Cancer survivors. Ann Behav Med 47:S245–S245

    Google Scholar 

  19. Poteat T, German D, Kerrigan D (2013) Managing uncertainty: a grounded theory of stigma in transgender health care encounters. Soc Sci Med 84:22–29. https://doi.org/10.1016/j.socscimed.2013.02.019

    Article  PubMed  Google Scholar 

  20. Willging CE, Salvador M, Kano M (2006) Brief reports: unequal treatment: mental health care for sexual and gender minority groups in a rural state. Psychiatr Serv 57(6):867–870. https://doi.org/10.1176/appi.ps.57.6.867

    Article  PubMed  Google Scholar 

  21. Corliss HL, Belzer M, Forbes C, Wilson EC (2007) An evaluation of service utilization among male to female transgender youth: qualitative study of a clinic-based sample. J LGBT Health Res 3(2):49–61. https://doi.org/10.1300/J463v03n02_06

    Article  PubMed  Google Scholar 

  22. Lim FA, Brown DV Jr, Justin Kim SM (2014) Addressing health care disparities in the lesbian, gay, bisexual, and transgender population: a review of best practices. Am J Nurs 114(6):24–34; quiz 35, 45. https://doi.org/10.1097/01.NAJ.0000450423.89759.36

    Article  PubMed  Google Scholar 

  23. Conroy AA, Gamarel KE, Neilands TB, Dilworth SE, Darbes LA, Johnson MO (2016) Relationship dynamics and partner beliefs about viral suppression: a longitudinal study of male couples living with HIV/AIDS (the duo project). AIDS Behav 20(7):1572–1583. https://doi.org/10.1007/s10461-016-1423-9

    Article  PubMed  PubMed Central  Google Scholar 

  24. Macapagal K, Bhatia R, Greene GJ (2016) Differences in healthcare access, use, and experiences within a community sample of racially diverse lesbian, gay, bisexual, transgender, and questioning emerging adults. LGBT Health 3(6):434–442. https://doi.org/10.1089/lgbt.2015.0124

    Article  PubMed  PubMed Central  Google Scholar 

  25. Brown MT, McElroy JA (2017) Sexual and gender minority breast cancer patients choosing bilateral mastectomy without reconstruction: “I now have a body that fits me”. Women Health 58:1–16. https://doi.org/10.1080/03630242.2017.1310169

    Article  Google Scholar 

  26. Boehmer U, Freund KM, Linde R (2005) Support providers of sexual minority women with breast cancer: who they are and how they impact the breast cancer experience. J Psychosom Res 59(5):307–314. https://doi.org/10.1016/j.jpsychores.2005.06.059

    Article  PubMed  Google Scholar 

  27. Kamen C, Mustian K, Johnson MO, Boehmer U (2015) Same-sex couples matter in cancer care. J Oncol Pract 11(2):e212–e215. https://doi.org/10.1200/JOP.2014.000877

    Article  PubMed  PubMed Central  Google Scholar 

  28. Lacombe-Duncan A (2016) An intersectional perspective on access to HIV-related healthcare for transgender women. Transgend Health 1(1):137–141. https://doi.org/10.1089/trgh.2016.0018

    Article  PubMed  PubMed Central  Google Scholar 

  29. Bolderston A, Ralph S (2016) Improving the health care experiences of lesbian, gay, bisexual and transgender patients. Radiography 22(3):E207–E211. https://doi.org/10.1016/j.radi.2016.04.011

    Article  Google Scholar 

  30. Hagan TL, Donovan HS (2013) Self-advocacy and cancer: a concept analysis. J Adv Nurs 69(10):2348–2359. https://doi.org/10.1111/jan.12084

    Article  PubMed  PubMed Central  Google Scholar 

  31. Brashers DE, Haas SM, Neidig JL, Rintamaki LS (2002) Social activism, self-advocacy, and coping with HIV illness. J Soc Pers Relat 19(1):113–133. https://doi.org/10.1177/0265407502191006

    Article  Google Scholar 

  32. Wiltshire J, Cronin K, Sarto GE, Brown R (2006) Self-advocacy during the medical encounter: use of health information and racial/ethnic differences. Med Care 44(2):100–109

    Article  PubMed  Google Scholar 

  33. Tate CC, Ledbetter JN, Youssef CP (2013) A two-question method for assessing gender categories in the social and medical sciences. J Sex Res 50(8):767–776. https://doi.org/10.1080/00224499.2012.690110

    Article  PubMed  Google Scholar 

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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.

Authors and 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

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