Abstract
Objective:
Sexual and gender minority people have unique, unaddressed health care needs following prostate cancer. The research team along with a group of established subject matter experts developed a training and companion materials for health care professionals to address this need.
Methods:
Post-assessment evaluation was reported in frequencies and percentages by combining results from learners who attended an original, live web-based training and learners who completed the same training on-demand via a Learning Management System.
Results:
Learners from both the live and archived training reported that the training increased their knowledge to effectively work with sexual and gender minority prostate cancer survivors. Learners also reported gaining new resources and strategies they could apply to their work.
Conclusion:
Results indicate the training fills an educational gap for health care professionals and supports the need for additional training of health care professionals focused on the healthcare needs of SGM cancer survivors.
Keywords: Sexual and gender minorities, prostate cancer, cancer survivorship, training and education, supportive care services
Introduction
Sexual and gender minorities (SGM) — a term inclusive of the diversity of people who identify as lesbian, gay, bisexual, transgender, queer, and/or intersex—represent approximately 5% of the U.S. population [1–3]. Relative to heterosexual and/or cisgender counterparts, SGM populations have more chronic health conditions; poorer general, physical, and mental health; and individual- and institutional-level barriers to accessing healthcare [4–8].
SGM people with a history of prostate cancer have emotional, relational, and sexual needs that often go unassessed and unaddressed in the current healthcare system. This supportive care gap is due, in part, to lack of education for oncology clinicians about the unique health care needs of SGM populations. For example, medical, nursing and dental school students receive approximately 5, 2.12, and 3.6 hours, respectively, in SGM-specific health content [9–11]. Published interventions focused on practitioners are few and limited in content [12–13]. To improve health care practitioner awareness of SGM health needs, the authors created the Addressing the Needs for LGBTQ-Affirming Cancer Care: A Focus on Sexual and Gender Minority Prostate Cancer Survivors training in 2017. The primary aim of the training was to help oncology social workers (OSWs) provide affirming care to SGM prostate cancer survivors, including those who identify as gay, bisexual or queer and those who identify as transgender or gender diverse.† The training was open to other health care professionals, as well, with continuing education credits provided to social workers, nurses, and community health workers.
This study was determined to be of minimal risk by The George Washington University Institutional Review Board (IRB) and approved via expedited review under category 7 of 45 CFR 46.110 (IRB #081631).
Methods
To assess the needs of health care professionals, the project team conducted a review of academic, white, and grey literature, and an environmental scan of resources to determine existing research, policies, practices, and recommendations for addressing the needs of SGM prostate cancer survivors. Next, the project team conducted an online survey of OSWs, a semi-structured virtual focus group with OSWs, and semi-structured virtual interviews with cancer survivors. Results from formative research are reported elsewhere [14]. Finally, the team created, implemented, and evaluated the educational intervention.
An advisory board comprised of subject matter experts was convened to guide development of the training and companion materials. Association of Oncology Social Work (AOSW) leadership also provided review and feedback.
Three of the advisory board members delivered the training (HG, DL, WG). The following topics were covered:
Social determinants that lead to health inequities for SGM
History of pathologizing SGM people in medicine and society
Unwelcoming health care environment norms
Discrimination
Intersectionality‡
Impact of prostate cancer treatment for SGM patients
Interpersonal and system-level strategies to support affirming care
The training was designed to engage participants through poll questions and self-reflection exercises.
The training offered continuing education (CE) credit/contact hours for nurses, social workers, and community health workers. Evaluation included a post-assessment with a required minimal passing score of 80% or higher to claim CE. Companion materials included:
A provider guide (i.e., brief overview of the needs of sexual and gender minority prostate cancer survivors, checklist for providers to use in practice and resources): http://bit.ly/LGBTQIPrCaCareGuide
Fact sheet for men who have sex with men who have received a prostate cancer diagnosis: http://bit.ly/MSMPrCaFactSheet
Fact sheet for transgender women and gender-nonconforming individuals who have received a prostate cancer diagnosis: http://bit.ly/TransPrCaFactSheet
The training and companion materials were released on December 12, 2017. The GW Cancer Center promoted the training to its network of 3,474 health care professionals, as well as the National Institutes of Health Office on Sexual and Gender Minority Research listserv. AOSW also promoted the training through both its listservs.
Promotion efforts resulted in 297 registrants, representing 41 states and two countries outside of the United States. The top three professions registered for the webinar were social workers (29%), nurses (10%) and patient navigators (8%). Other professions included public health professionals, physicians, psychologists and health educators. One hundred forty-two (142) people participated in the live training.
The training was archived in the GW Cancer Center’s Learning Management System (LMS) and made available for CE credit on demand at GWCCacademy.org. Results of both the webinar and live training are reported here.
Results
Webinar
Participant sample.
Seventy-seven (n=77) learners participated in the post-assessment for the live training, primarily social workers (required only for learners claiming continuing education credit). Limited demographics were collected on learners (See Table 1).
Table 1.
Participant Characteristics for the Webinar§ (n=51) Archived Training (n=204)
| Variable | Level | Webinar n (%) | Archived Training n (%) |
|---|---|---|---|
| Gender | Female | Not collected | 165 (80.0) |
| Male | Not collected | 34 (16.7) | |
| Transgender | Not collected | 0 (0) | |
| I prefer not to answer | Not collected | 5 (2.5) | |
| Age | 18–20 | Not collected | 0 (0) |
| 21–29 | Not collected | 45 (22.1) | |
| 30–39 | Not collected | 68 (33.3) | |
| 40–49 | Not collected | 40 (19.6) | |
| 50–49 | Not collected | 34 (16.7) | |
| 60 or older | Not collected | 13 (6.4) | |
| I prefer not to answer | Not collected | 4 (2.0) | |
| Professional Role | Health Educator | 2 (3.9) | 33 (17.2) |
| Healthcare Administrator | 1 (2.0) | 12 (5.9) | |
| Nurse | 3 (5.9) | 53 (26) | |
| Nurse Navigator | 2 (3.9) | 10 (4.9) | |
| Nurse Practitioner | 1 (2.0) | 5 (2.5) | |
| Patient Navigator | 0 (0.0) | 23 (11.3) | |
| Physician | 1 (2.0) | 9 (4.4) | |
| Physician Assistant | 1 (2.0) | 3 (1.5) | |
| Social Worker | 34 (66.7) | 21 (10.3) | |
| Other | 6 (11.8) | 35 (17.2) | |
| Specialty | Oncology | Not collected | 116 (56.9) |
| Primary Care | Not collected | 12 (5.9) | |
| Urology | Not collected | 2 (1.0) | |
| Not Applicable | Not collected | 48 (23.5) | |
| Other | Not collected | 26 (12.7) | |
| Race | American Indian or Alaska Native | Not collected | 3 (1.5) |
| Asian | Not collected | 44 (21.6) | |
| Black or African American | Not collected | 27 (13.2) | |
| Native Hawaiian or Pacific Islander | Not collected | 1 (1.5) | |
| White | Not collected | 107 (52.5) | |
| I prefer not to answer | Not collected | 16 (7.8) | |
| Other | Not collected | 6 (2.5) | |
| More than one category | Not collected | 1 (.5) | |
| Ethnicity (n=204) | Hispanic/ Latino | Not collected | 28 (13.7) |
| Not Hispanic or Latino | Not collected | 142 (69.6) | |
| I prefer not to answer | Not collected | 31 (15.2) | |
| Missing | Not collected | 3 (1.5) |
Data unavailable for 26 participants
Methods.
A post-training survey consisted of 10 closed-ended questions with a 5-point Likert Scale, one closed-ended “yes/no” question, and one open-ended question focused on self-reported improvements in learning and satisfaction with the training. Microsoft Excel was used for data cleaning and statistical analysis. Frequencies and percentages were reported.
Outcomes.
Responses to close-ended questions are reported in Table 2. Respondents also had the opportunity to provide qualitative feedback to improve future educational offerings. Twenty-one participants provided feedback, most of which was very positive and indicated interest in continued learning. One suggestion was for more content on intersectionality relevant to racial minority SGM prostate cancer survivors.
Table 2.
Learner Satisfaction with the Live (n=77) and Archived Trainings (n=123)
| Live Webinar Post-Assessment (n=77) n (%) |
Archived Training (n=123) n (%) |
Live & Archived n (%) |
|||||||
|---|---|---|---|---|---|---|---|---|---|
| Question | Strongly Disagree/ Disagree | Neutral | Agree/Strongly Agree | Total | Strongly Disagree/ Disagree | Neutral | Agree/Strongly Agree | Total | Total |
| The training increased my knowledge about interpersonal determinants that lead to lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) health inequities. | 2 (2.6) | 4 (5.2) | 71 (92.2) | 77 (100) | 1 (.8) | 6 (4.9) | 116 (94.3) | 123 (100) | 200 (100) |
| The training increased my knowledge about the unique needs of GBT prostate cancer patients, survivors and their caregivers. | 2 (2.6) | 2 (2.6) | 72 (94.8) | 76 (100) | 1 (.8) | 6 (4.9) | 116 (94.3) | 123 (100) | 199 (100) |
| The training increased my knowledge about affirming and culturally sensitive strategies for working with GBT prostate cancer patients, survivors and their caregivers. | 2 (2.6) | 2 (2.6) | 73 (94.8) | 77 (100) | 1 (.8) | 5 (4.1) | 117 (95.2) | 123 (100) | 200 (100) |
| The examples given in the training were practical. | 0 (0.0) | 3 (3.9) | 73 (96.1) | 76 (100) | 1 (.8) | 5 (4.1) | 117 (95.1) | 123 (100) | 199 (100) |
| I gained new strategies and resources that I can apply to my work. | 3 (3.9) | 4 (5.3) | 69 (90.8) | 76 (100) | 2 (1.6) | 8 (6.5) | 113 (91.9) | 123 (100) | 199 (100) |
| I plan to implement new strategies and resources into my work. | 2 (2.7) | 10 (13.3) | 63 (84.0) | 75 (100) | 1 (.8) | 10 (8.1) | 112 (91.1) | 123 (100) | 198 (100) |
| I would recommend this training to others. | 0 (0.0) | 2 (2.6) | 75 (97.4) | 77 (100) | 1 (.8) | 8 (6.5) | 114 (92.7) | 123 (100) | 200 (100) |
In addition, the project team tracked immediate downloads of companion materials. Since launch, the Provider Guide has been downloaded 714 times; the fact sheet for transgender and gender non-conforming individuals has been downloaded 807 times; and the fact sheet for men who have sex with men has been downloaded 791 times.
Archived Training
Methods.
Two years after the live training, the project team downloaded demographic and learning satisfaction data from those who completed the archived training (n=204) from the LMS into Excel. Answer options were coded into numerical categories and imported into SPSS 26. Frequencies of the data (counts and percentages) were reported (see Table 2). No statistical tests were performed given the convenience nature of the sample and limited demographic data collected.
Participant characteristics.
All participants (n=204) answered demographic questions. The majority of participants were female (80.0%), white (52.5%), and not Hispanic (69.6%). Most learners worked in oncology (56.9%). Diverse ages and healthcare professional roles were represented. See Table 1 for participant demographics for the archived training.
Outcomes.
Of the 60% (n=123) of participants who responded to most questions about learner satisfaction, the training was strongly endorsed. Over 94% of all learners agreed that their knowledge about determinants of health, unique needs of SGM prostate cancer survivors, and culturally sensitive approaches to working with SGM patients increased. Over 90% of learners indicated the training was practical, that they planned to implement new strategies into their work, and that they would recommend the training to others (see Table 2).
When asked how much of the information in the training was new, 11% said “a little,” 47% said “some,” 32% said “most,” and 9% said “all” of the content was new. Only one person indicated that “none” of the information was new. When asked whether learners needed additional information on the topic before being able to implement new strategies and resources into my work, 85% said “no.” In addition, 77% (n=121) of learners indicated that “most” or “all” of the information in the training would be helpful in meeting the needs of LGBTQI cancer survivors. Learners who completed the post-training evaluation (n=123) also indicated that the training was “good” (20.3%), “very good” (36.6%), or “excellent” (40.7%).
In open text feedback, one learner requested the project team “continue to address these issues” and specifically asked for training on affirming care for SGM patients with a diagnosis of breast cancer. Another learner indicated: “Strongly agree that all health care providers should take and be educated with this course.”
Discussion
Contribution of this study
The empirical literature on training healthcare workers about the needs of SGM patients is still in its infancy [15]. Past studies have indicated that SGM-focused training can improve knowledge and attitudes about SGM patients among healthcare providers [13,16–19]. However, few trainings have specifically supported social workers and none have focused on social workers supporting prostate cancer survivors, specifically.
Study Limitations
This study has several limitations: the sample was a cross-sectional, convenience sample (learners opted into the educational intervention). Data were self-reported and thus subject to social desirability bias. Only posttest data were collected, preventing assessment of learning changes from pretest to posttest. The posttest evaluation was voluntary for learners who did not wish to claim continuing education units. Finally, the study was not designed to assess the impact of the training on learner behaviors over time.
Clinical Implications
Recent studies highlight discrimination against and/or lack of safe spaces for SGM individuals and their loved ones to receive affirming prostate cancer care tailored to the unique needs of SGM partners [4,5,20–22]. Few providers consistently perform comprehensive sexual health histories: this is a lost opportunity to request and receive permission to discuss sexual orientation and gender identity, romantic and sexual relationships, sexual health behaviors, and HIV/STI prevention [20–22]. Lack of such patient-provider conversations are also missed opportunities to discuss the patient’s and significant other’s goals for treatment and survivorship care, symptom management, and sexual recovery [20–21, 24–25].
Healthcare providers and institutions proactively seeking to engage SGM populations may do so through a combination of the following: staff and provider professional development; transforming the culture and physical spaces within the clinical environment; development or adapting SGM-specific resources; and improving tracking of SGM patients and their health outcomes [4,5,8,22]. Needs assessments to understand how intersectionality of age, race/ethnicity, socioeconomic status, geographic location (e.g., urban, rural), and other sociodemographic characteristics impact SGM populations may aid in tailoring interventions rather continuing one-size-fits-all approaches [23–25].
When SGM survivors’ psychosocial or relational needs exceed provision of basic medical or health information, healthcare providers should be prepared to refer these individuals to other allied or mental/behavioral health providers who are skilled in working with these populations. The Gay and Lesbian Medical Association (GLMA) houses a directory of SGM-affirming health care professionals at glma.org. Transcaresite.org also houses individual providers by state and specialty who provide transgender health care services. The Human Rights Campaign Healthcare Equality Index also lists organizations that have met minimal criteria for affirming SGM-care. Finally, providers may search the CenterLink directory at lgbtcenters.org/LGBTCenters for their nearest LGBTQ Community Center to request local recommendations for SGM-affirming providers.
Conclusion
The Addressing the Needs for LGBTQ-Affirming Cancer Care: A Focus on Sexual and Gender Minority Prostate Cancer Survivors training was developed through input from SGM prostate cancer survivors and oncology social workers. The training provides information to support diverse health care professionals in caring for SGM patients. Additional trainings are warranted to reinforce and expand knowledge and skills of oncology social workers and other health care professionals interested in developing cultural humility and providing culturally competent care to SGM patients. Greater attention to the intersectional diversity of SGM populations is needed in future research and education.
Acknowledgements:
Data collection for this project was made possible, in part, by the Clinical and Translational Science Institute at Children’s National (CTSI-CN) is supported through the National Institutes of Health (NIH) Clinical and Translational Science Award (CTSA) Program, grant UL1TR001876 and KL2TR001877. The CTSA program is led by the NIH’s National Center for Advancing Translational Sciences (NCATS). The authors would like to thank advisory board members Jennifer Bires, LICSW and Darryl Mitteldorf, LCSW for their contributions to this project. Special thanks to Ruta Brazinskaite for assistance in preparing this manuscript.
Funding:
This project was funded by a grant from the Association of Oncology Social Workers
Footnotes
A note about terminology: At the time of this study, the term “LGBTQ” was used in evaluation questions, an acronym for lesbian, gay, bisexual, transgender and queer. Therefore, while we use the acronym SGM in the narrative, we retain the use of the acronym LGBTQ when reporting specific item responses. In addition, the authors acknowledge the limitations of the term “survivor,” which is not universally embraced by all people with a history of cancer diagnosis. In this paper we focus on individuals with a history of prostate cancer as a “survivor,” from the time of diagnosis.
Intersectionality is a term created by critical race theorist Kimberle Crenshaw to refer to the various ways that individual social and political characteristics “intersect” to create varying experiences of discrimination and/or privilege.
Publisher's Disclaimer: This Author Accepted Manuscript is a PDF file of a an unedited peer-reviewed manuscript that has been accepted for publication but has not been copyedited or corrected. The official version of record that is published in the journal is kept up to date and so may therefore differ from this version.
Declarations
Conflict of interest/ Competing interests: The authors have no conflicts to disclose.
Code availability: Not applicable
Availability of data and material:
Data available upon request to the corresponding author.
References
- 1.Gates GJ. How many people are lesbian, gay, bisexual and transgender? The Williams Institute UCLA School of Law; 2011. Available from: https://williamsinstitute.law.ucla.edu/wp-content/uploads/Gates-How-Many-People-LGBT-Apr-2011.pdf.
- 2.Flores AR, Herman JL, Gates GJ, Brown TNT. How many adults identify as transgender in the United States. The Williams Institute UCLA School of Law; 2016. Available from: https://williamsinstitute.law.ucla.edu/publications/trans-adults-united-states/.
- 3.Intersex Campaign for Equality. How common is intersex? An explanation of the stats; 2015. Available from: https://www.intersexequality.com/how-common-is-intersex-in-humans.
- 4.The National Academies of Medicine. The health of lesbian, gay, bisexual, and transgender people: building a foundation for better understanding. Washington, DC: National Academies Press; 2011. [PubMed] [Google Scholar]
- 5.Lambda Legal. When health care isn’t caring: Lambda Legal’s survey of discrimination against LGBT people and people with HIV; 2010. Available from: https://www.lambdalegal.org/sites/default/files/publications/downloads/whcic-report_when-health-care-isnt-caring.pdf.
- 6.Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull 2003;129(5):674–97. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.National LGBT Health Education Center. Understanding the health needs of LGBT people; 2016. Available from: http://www.lgbthealtheducation.org/wp-content/uploads/LGBTHealthDisparitiesMar2016.pdf.
- 8.The Joint Commission. Advancing effective communication, cultural competence, and patient- and family-centered care for the lesbian, gay, bisexual, and transgender (LGBT) community; 2011. Available from www.jointcommission.org/-/media/enterprise/tjc/imported-resource-assets/documents/lgbtfieldguide_web_linked_verpdf.pdf?db=web&hash=1EC363A65C710BCD1D4E14ED120CB237.
- 9.Obedin-Maliver J, Goldsmith ES, Stewart L, et al. Lesbian, gay, bisexual, and transgender-related content in undergraduate medical education. JAMA, 2011;306(9):971–977 [DOI] [PubMed] [Google Scholar]
- 10.Lim FA, Johnson M, Eliason M. A national survey of faculty knowledge, experience, and readiness for teaching lesbian, gay, bisexual and transgender health in baccalaureate nursing program. Nursing Education Perspective, 2015;36(4):144–152. doi: 10.5480/14-13 [DOI] [Google Scholar]
- 11.Hillenburg KL, Murdoch-Kinch CA, Kinney JS et al. LGBT coverage in U.S. dental schools and dental hygiene programs: Results of a national survey, J Dent Educ, 2016;80(2):1440–49 [PubMed] [Google Scholar]
- 12.Cathcart-Rake EJ, Breitkopf CR, Kaur J, et al. Teaching health-care providers to query patients with cancer about sexual and gender minority (SGM) status and sexual health. Am J Hosp Palliat Care. 2019;36(6):533–37. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Seay J, Hicks A, Markham MJ, Schlumbrecht M, Bowman M, Woodard J, et al. Developing a web-based LGBT cultural competency training for oncologists: the COLORS training. Patient Educ Couns 2019;102(5):984–9. [DOI] [PubMed] [Google Scholar]
- 14.Pratt-Chapman ML, Goltz H, Latini D, Goeren W, Suarez R, Zhang Y, Harvey AC, Kamen C (2020). Development of a Training to Address Needs of Sexual and Gender Minority Prostate Cancer Survivors: Results of Formative Research. Journal of Oncology Navigation and Survivorship, 303–309. [PMC free article] [PubMed] [Google Scholar]
- 15.Bonvicini KA. LGBT healthcare disparities: what progress have we made? Patient Educ Couns 2017;100(12):2357–61. [DOI] [PubMed] [Google Scholar]
- 16.McGarry KA, Clarke JG, Cyr MG, Landau C. Evaluating a lesbian and gay health care curriculum. Teach Learn Med 2002;14(4):244–8. [DOI] [PubMed] [Google Scholar]
- 17.Kelley L, Chou CL, Dibble SL, Robertson PA. A critical intervention in lesbian, gay, bisexual, and transgender health: knowledge and attitude outcomes among second-year medical students. Teach Learn Med 2008;20(3):248–53. [DOI] [PubMed] [Google Scholar]
- 18.Shrader A, Casero K, Casper B, Kelley M, Lewis L, Calohan J. Military Lesbian, Gay, bisexual, and transgender (LGBT) awareness training for health care providers within the military health system. J Am Psychiat Nurses. 2017;23(6):385–92. [DOI] [PubMed] [Google Scholar]
- 19.Taylor AK, Condry H, Cahill D. Implementation of teaching on LGBT health care. Clin Teach 2018;15(2):141–4. [DOI] [PubMed] [Google Scholar]
- 20.Hart TL, Coon DW, Kowalkowski MA, Zhang KR, Hersom JI, Goltz HH, et al. Changes in sexual roles and quality of life for gay men after prostate cancer: challenges for sexual health providers. J Sex Med 2014;11(9):2308–17. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Wittmann D, Foley S, Balon R. A biopsychosocial approach to sexual recovery after prostate cancer surgery: The role of grief and mourning. Journal of Sex & Marital Therapy 2011; 37(2): 130–44. [DOI] [PubMed] [Google Scholar]
- 22.American Health Lawyers Association and The Human Rights Campaign. Revisiting your hospital’s visitation policy; 2012. Available from https://assets2.hrc.org/files/assets/resources/Revisiting-Your-Hospitals-Visitation-Policy.pdf.
- 23.Simpson P, Almack K, Walthery P. ‘We treat them all the same’: the attitudes, knowledge and practices of staff concerning old/er lesbian, gay, bisexual and trans residents in care homes. Ageing Soc 2018;38(5):869–99. [Google Scholar]
- 24.Rosser BRS, Capistrant B, Torres C, Konety B, Merengwa E, Mitteldorf D, West W. The effects of radical prostatectomy on gay and bisexual men’s sexual functioning and behavior: qualitative results from the restore study. Sex Relation Ther 2016;31(4), 432–445. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Ussher JM, Perz J, Rosser BRS. Gay and bisexual men living with prostate cancer: From diagnosis to recovery. New York: Harrington Park Press; 2018. [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Data available upon request to the corresponding author.