Skip to main content
SpringerLink
Log in

Healthcare experiences among Black and White sexual and gender minority cancer survivors: a qualitative study

  • Published:
Journal of Cancer Survivorship Aims and scope Submit manuscript

Abstract

Purpose

The purpose of this study was to explore healthcare experiences of Black and White sexual and gender minority (SGM) cancer survivors across the cancer care continuum.

Methods

This was a qualitative analysis of two focus groups and eight individual interviews completed as part of a larger initiative using a community-engaged research approach to reduce cancer disparities in marginalized communities. There was a total of 16 participants in the study (9 were White, 7 were Black) and data were collected between 2019 and 2020.

Results

Three main themes emerged from the thematic analysis: strategically coming out, provider preferences, and health system challenges. Participants noted that they often came out through their support system, decided to come out based on the relevance of their SGM identity that they perceived, and expressed a desire for privacy. Lack of an accessible and competent PCP was tied to delayed cancer diagnosis and many participants voiced a preference for consistency when they found a provider they liked.

Conclusions

Providers across specialties can address barriers for SGM patients by not making assumptions about patient sexual orientation or gender identity. Institutions should systematically collect sexual orientation and gender identity information. Primary care providers should be aware that due to resistance to switching from trusted providers, they may need to take greater initiative to facilitate cancer screenings for their patients when appropriate or take special care when making referrals to ensure they are using SGM-affirming providers.

Implications for Cancer Survivors

SGM cancer survivors often benefit from a cultivating relationship with a trusted PCP or other provider.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Wakefield D. Cancer care disparities in the LGBT community. Curr Opin Support Palliat Care. 2021;15:174–9.

    Article  PubMed  Google Scholar 

  2. HRC Foundation. Glossary of terms. Hum Rights Campaign; 2023. [cited 2023 Nov 1]. Available from: https://www.hrc.org/resources/glossary-of-terms

    Google Scholar 

  3. Centers for Disease Control and Prevention. Terminology. Health Consid LGBTQ Youth; 2022. [cited 2023 Nov 1]. Available from: https://www.cdc.gov/healthyyouth/terminology/sexual-and-gender-identity-terms.htm

    Google Scholar 

  4. Conron KJ, Goldberg SK. Adult LGBT population in the United States. UCLA School of Law Williams Institute; 2020. [cited 2022 Jul 29]. Available from: https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-Adult-US-Pop-Jul-2020.pdf

    Google Scholar 

  5. Flores AR, Herman JL, Gates GJ, Brown TNT. How many adults identify as transgender in the United States? vol. 13; 2017.

    Google Scholar 

  6. Agénor M, Krieger N, Austin SB, Haneuse S, Gottlieb BR. Sexual orientation disparities in Papanicolaou test use among US women: the role of sexual and reproductive health services. Am J Public Health. 2014;104:e68–73.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Heslin KC, Gore JL, King WD, Fox SA. Sexual orientation and testing for prostate and colorectal cancers among men in California. Med Care. 2008;46:1240–8.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Austin SB, Pazaris MJ, Nichols LP, Bowen D, Wei EK, Spiegelman D. An examination of sexual orientation group patterns in mammographic and colorectal screening in a cohort of U.S. women. Cancer Causes Control. 2013;24:539–47.

    Article  PubMed  Google Scholar 

  9. Boehmer U, Ozonoff A, Miao X. An ecological approach to examine lung cancer disparities due to sexual orientation. Public Health. 2012;126:605–12.

    Article  PubMed  CAS  Google Scholar 

  10. Boehmer U, Miao X, Maxwell NI, Ozonoff A. Sexual minority population density and incidence of lung, colorectal and female breast cancer in California. BMJ Open. 2014;4:e004461.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Valanis BG. Sexual orientation and health: comparisons in the women’s health initiative sample. Arch Fam Med. 2000;9:843–53.

    Article  PubMed  CAS  Google Scholar 

  12. Jackson SS, Patel S, Parker K. Cancer disparities among sexual and gender minority populations. J Natl Med Assoc. 2023;115:S32–7.

    PubMed  Google Scholar 

  13. Silverberg MJ, Nash R, Becerra-Culqui TA, Cromwell L, Getahun D, Hunkeler E, et al. Cohort study of cancer risk among insured transgender people. Ann Epidemiol. 2017;27:499–501.

    Article  PubMed  Google Scholar 

  14. Haviland K, Burrows Walters C, Newman S. Barriers to palliative care in sexual and gender minority patients with cancer: a scoping review of the literature. Health Soc Care Community. 2021;29:305–18.

    Article  PubMed  Google Scholar 

  15. Kamen CS, Smith-Stoner M, Heckler CE, Flannery M, Margolies L. Social support, self-rated health, and lesbian, gay, bisexual, and transgender identity disclosure to cancer care providers. Oncol Nurs Forum. 2015;42:44–51.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Webster R, Drury-Smith H. How can we meet the support needs of LGBT cancer patients in oncology? A systematic review. Radiography. 2021;27:633–44.

    Article  PubMed  CAS  Google Scholar 

  17. Berner AM, Hughes DJ, Tharmalingam H, Baker T, Heyworth B, Banerjee S, et al. An evaluation of self-perceived knowledge, attitudes and behaviours of UK oncologists about LGBTQ+ patients with cancer. ESMO Open. 2020;5:e000906.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Schabath MB, Blackburn CA, Sutter ME, Kanetsky PA, Vadaparampil ST, Simmons VN, et al. National survey of oncologists at national cancer institute–designated comprehensive cancer centers: attitudes, knowledge, and practice behaviors about LGBTQ patients with cancer. J Clin Oncol. 2019;37:547–58.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Cathcart-Rake EJ. Cancer in sexual and gender minority patients: are we addressing their needs? Curr Oncol Rep. 2018;20:85.

    Article  PubMed  Google Scholar 

  20. van Dam MAA, Koh AS, Dibble SL. Lesbian disclosure to health care providers and delay of care. J Gay Lesbian Med Assoc 2001;5:11–9.

  21. Boehmer U, Case P. Physicians don’t ask, sometimes patients tell: disclosure of sexual orientation among women with breast carcinoma. Cancer. 2004;101:1882–9.

    Article  PubMed  Google Scholar 

  22. Durso LE, Meyer IH. Patterns and predictors of disclosure of sexual orientation to healthcare providers among lesbians, gay men, and bisexuals. Sex Res Soc Policy. 2013;10:35–42.

    Article  Google Scholar 

  23. Bernstein KT. Same-sex attraction disclosure to health care providers among new york city men who have sex with men: implications for HIV testing approaches. Arch Intern Med. 2008;168:1458.

    Article  PubMed  Google Scholar 

  24. Margolies L, Scout N. LGBT patient-centered outcomes: cancer survivors teach us how to improve care for all.. 2013 [cited 2023 Feb 25]. Available from: www.cancer-network.org/patient_centered_outcomes

    Google Scholar 

  25. Ruben MA, Fullerton M. Proportion of patients who disclose their sexual orientation to healthcare providers and its relationship to patient outcomes: a meta-analysis and review. Patient Educ Couns. 2018;101:1549–60.

    Article  PubMed  Google Scholar 

  26. Hoyt MA, Darabos K, Llave K. Disparities in health-related quality of life among lesbian, gay, and bisexual cancer survivors. J Psychosoc Oncol. 2023;41:6:661–72.

  27. Boehmer U, Jesdale BM, Streed CG, Agénor M. Intersectionality and cancer survivorship: sexual orientation and racial/ethnic differences in physical and mental health outcomes among female and male cancer survivors. Cancer. 2022;128:284–91.

    Article  PubMed  Google Scholar 

  28. Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull. 2003;129:674–97.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Power R, Ussher JM, Perz J, Allison K, Hawkey AJ. “Surviving discrimination by pulling together”: LGBTQI cancer patient and carer experiences of minority stress and social support. Front Oncol. 2022;12:918016.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Boehmer U. LGBT populations’ barriers to cancer care. Semin Oncol Nurs. 2018;34:21–9.

    Article  PubMed  Google Scholar 

  31. Kamen CS, Alpert A, Margolies L, Griggs JJ, Darbes L, Smith-Stoner M, 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. 2019;27:2525–32.

    Article  PubMed  Google Scholar 

  32. Margolies L, Brown CG. Current state of knowledge about cancer in lesbians, gay, bisexual, and transgender (LGBT) people. Semin Oncol Nurs. 2018;34:3–11.

    Article  PubMed  Google Scholar 

  33. Griggs J, Maingi S, Blinder V, Denduluri N, Khorana AA, Norton L, et al. American Society of Clinical Oncology position statement: strategies for reducing cancer health disparities among sexual and gender minority populations. J Clin Oncol. 2017;35:7.

    Article  Google Scholar 

  34. Kano M, Sanchez N, Tamí-Maury I, Solder B, Watt G, Chang S. Addressing cancer disparities in SGM populations: recommendations for a national action plan to increase SGM health equity through researcher and provider training and education. J Cancer Educ. 2020;35:44–53.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Thompson HS. Tackling racial disparities through novel approaches to engage communities in research; 2021. [cited 2022 Apr 19]. Available from: https://cancerletter.com/trials-and-tribulations/20210129_9/

  36. Thompson HS, Littles M, Jacob S, Coker C. Posttreatment breast cancer surveillance and follow-up care experiences of breast cancer survivors of African descent: An Exploratory Qualitative Study. Cancer Nurs. 2006;29:478.

    Article  PubMed  Google Scholar 

  37. Dyer KE, Shires DA, Flocke SA, Hawley ST, Jones RM, Resnicow K, et al. Patient-reported needs following a referral for colorectal cancer screening. Am J Prev Med. 2019;56:271–80.

    Article  PubMed  Google Scholar 

  38. Saldaña J. The coding manual for qualitative researchers. 2nd ed. Thousand Oaks, CA: SAGE; 2013.

    Google Scholar 

  39. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.

    Article  Google Scholar 

  40. Creswell J, Poth CN. Qualitative inquiry and research design: choosing among five approaches. Thousand Oaks, CA: SAGE; 2007. [cited 2020 Apr 16]. Available from: https://us.sagepub.com/en-us/nam/qualitative-inquiry-and-research-design/book246896

    Google Scholar 

  41. Morrow SL. Quality and trustworthiness in qualitative research in counseling psychology. J Couns Psychol. 2005;52:250–60.

    Article  Google Scholar 

  42. Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Methods. 2017;16(1):1609406917733847.

  43. Padgett D. Qualitative methods in social work research. 3rd ed. Los Angeles: SAGE; 2017.

    Google Scholar 

  44. Matthews AK, Peterman AH, Delaney P, Menard L, Brandenburg D. A Qualitative exploration of the experiences of lesbian and heterosexual patients with breast cancer. Oncol Nurs Forum. 2002;29:1455–62.

    Article  PubMed  Google Scholar 

  45. Matthews AK. Lesbians and cancer support: clinical issues for cancer patients. Health Care Women Int. 1998;19:193–203.

    Article  PubMed  CAS  Google Scholar 

  46. Cahill S, Makadon H. Sexual orientation and gender identity data collection in clinical settings and in electronic health records: a key to ending LGBT health disparities. LGBT Health. 2014;1:34–41.

    Article  PubMed  Google Scholar 

  47. Katz A. Gay and lesbian patients with cancer. In: Cancer Sex Health. Humana Press; 2011. p. 397–403.

    Chapter  Google Scholar 

  48. Wells-Prado DR, Ross MW, Rosser BRS, Polter EJ, Capistrant BD, Haggart R, et al. Prostate cancer disclosure and sexual orientation: understanding outness to healthcare providers as a situational or consistent phenomenon. Patient Educ Couns. 2022;105(7):2033–7.

  49. McConkey RW, Holborn C. Exploring the lived experience of gay men with prostate cancer: A phenomenological study. Eur J Oncol Nurs. 2018;33:62–9.

    Article  PubMed  Google Scholar 

  50. Rose D, Ussher JM, Perz J. Let’s talk about gay sex: gay and bisexual men’s sexual communication with healthcare professionals after prostate cancer. Eur J Cancer. 2017;26:e12469.

    Article  Google Scholar 

  51. Brown MT, McElroy JA. Unmet support needs of sexual and gender minority breast cancer survivors. Support Care Cancer. 2018;26:1189–96.

    Article  PubMed  Google Scholar 

  52. St. Pierre M. Under what conditions do lesbians disclose their sexual orientation to primary healthcare providers? A review of the literature. J Lesbian Stud. 2012;16:199–219.

    Article  PubMed  Google Scholar 

  53. Williamson LD, Smith MA, Bigman CA. Does discrimination breed mistrust? Examining the role of mediated and non-mediated discrimination experiences in medical mistrust. J Health Commun. 2019;24:791–9.

    Article  PubMed  Google Scholar 

  54. Hostetter J, Schwarz N, Klug M, Wynne J, Basson MD. Primary care visits increase utilization of evidence-based preventative health measures. BMC Fam Pract. 2020;21:151.

    Article  PubMed  PubMed Central  Google Scholar 

  55. Rubin G, Berendsen A, Crawford SM, Dommett R, Earle C, Emery J, et al. The expanding role of primary care in cancer control. Lancet Oncol. 2015;16:1231–72.

    Article  PubMed  Google Scholar 

  56. Institute of Medicine (US) Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities. The health of lesbian, gay, bisexual, and transgender people: building a foundation for better understanding. Washington (DC): National Academies Press (US); 2011. [cited 2020 Nov 12]. Available from: http://www.ncbi.nlm.nih.gov/books/NBK64806/

    Google Scholar 

  57. Kamen C, Mustian KM, Dozier A, Bowen DJ, Li Y. Disparities in psychological distress impacting lesbian, gay, bisexual and transgender cancer survivors: distress among LGBT cancer survivors. Psychooncology. 2015;24:1384–91.

    Article  PubMed  PubMed Central  Google Scholar 

  58. Krehely J. How to close the LGBT health disparities gap. Cent Am Prog; 2022. [cited 2023 Nov 1]. Available from: https://www.americanprogress.org/article/how-to-close-the-lgbt-health-disparities-gap/

  59. Howard SD, Lee KL, Nathan AG, Wenger HC, Chin MH, Cook SC. Healthcare experiences of transgender people of color. J Gen Intern Med. 2019;34:2068–74.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Martos AJ, Wilson PA, Gordon AR, Lightfoot M, Meyer IH. “Like finding a unicorn”: Healthcare preferences among lesbian, gay, and bisexual people in the United States. Soc Sci Med. 2018;208:126–33.

    Article  PubMed  PubMed Central  Google Scholar 

  61. Saulnier CF. Deciding who to see: lesbians discuss preferences in health and mental health care providers. Soc Work. 2002;47:355–65.

    Article  PubMed  Google Scholar 

  62. United States Census Bureau. Census profile: Detroit-Warren-Dearborn, MI Metro Area. Census Report;2021. [cited 2022 Jun 16]. Available from: http://censusreporter.org/profiles/31000US19820-detroit-warren-dearborn-mi-metro-area/

  63. GLBT Health Access Project. Community standards of practice for provision of quality health care services for gay, lesbian, bisexual, and transgender clients. GLBT Health Access Project; 2023. [cited 2023 Nov 1]. Available from: http://www.glbthealth.org/documents/SOP.pdf

  64. Gay & Lesbian Medical Association. Guidelines for care of lesbian, gay, bisexual, and transgender patients. Gay and Lesbian Medical Association; 2006. [cited 2023 Feb 25]. Available from: https://www.glma.org/_data/n_0001/resources/live/GLMA%20guidelines%202006%20FINAL.pdf

    Google Scholar 

  65. National LGBTQIA+ Health and Education Center. 10 strategies for creating inclusive health care environments for LGBTQIA+ people. Fenway Institute; 2021. [cited 2023 Nov 1]. Available from: https://www.lgbtqiahealtheducation.org/wp-content/uploads/2021/05/Ten-Strategies-for-Creating-Inclusive-Health-Care-Environments-for-LGBTQIA-People-Brief.pdf

  66. The Joint Commission. Advancing effective communication, cultural competence, and patient-and family-centered care for the lesbian, gay, bisexual and transgender (LGBT) community: a field guide; 2011. [cited 2023 Nov 1]. Available from: https://www.jointcommission.org/-/media/tjc/documents/resources/patient-safety-topics/health-equity/lgbtfieldguide_web_linked_verpdf.pdf

Download references

Funding

This work was supported by the Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (6252-WSU).

Author information

Authors and Affiliations

  1. School of Social Work, Michigan State University, 655 Auditorium Road, 122 Baker Hall, East Lansing, MI, 48824, USA

    Deirdre A. Shires & Jen Hirsch

  2. Department of Health and Human Services, University of Michigan - Dearborn, Dearborn, MI, USA

    Leonardo Kattari

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

    Forrest Hosea

  4. Indiana University School of Public Health, Bloomington, IN, USA

    Megan Mulvaney

  5. School of Nursing, Columbia University, New York, NY, USA

    Alicia K. Matthews

  6. Office of Cancer Health Equity and Community Engagement, Karmanos Cancer Institute, Detroit, MI, USA

    Hayley S. Thompson

  7. Department of Oncology, School of Medicine, Wayne State University, Detroit, MI, USA

    Hayley S. Thompson

Authors
  1. Deirdre A. Shires
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Leonardo Kattari
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Forrest Hosea
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jen Hirsch
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Megan Mulvaney
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Alicia K. Matthews
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Hayley S. Thompson
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

DAS: conceptualization, formal analysis, funding acquisition, investigation, methodology, project administration, supervision, validation, writing—original draft and review, and editing. LK: data curation, formal analysis, validation, visualization, writing—original draft and review, and editing. FH: data curation, formal analysis, validation, writing—original draft and review, and editing. JH: visualization, writing—original draft and review, and editing. MM: validation and writing—review and editing. PM: conceptualization and writing—review and editing. HT: conceptualization, funding acquisition, investigation, methodology, supervision, and writing—review and editing.

Corresponding author

Correspondence to Deirdre A. Shires.

Ethics declarations

Ethics approval

Institutional review board approval was obtained at the participating universities.

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Shires, D.A., Kattari, L., Hosea, F. et al. Healthcare experiences among Black and White sexual and gender minority cancer survivors: a qualitative study. J Cancer Surviv (2023). https://doi.org/10.1007/s11764-023-01504-z

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1007/s11764-023-01504-z

Keywords

Search

Navigation