Development of a Training to Address Needs of Sexual and Gender Minority Prostate Cancer Survivors: Results of Formative Research

September 2020 Vol 11, No 9

Categories:

Original Research
Mandi Pratt-Chapman, MA, PhD, HON-OPN-CG
Associate Center Director,
Patient-Centered Initiatives & Health Equity,
GW Cancer Center
Washington, DC
Heather Goltz, PhD, MSW, MEd
University of Houston-Downtown;
Section of Infectious Diseases, Department of Medicine, Baylor College of Medicine,
Houston, TX
David Latini, PhD, MSW
Montrose Center and Montrose Research Institute;
Scott Department of Urology, Baylor College of Medicine,
Houston, TX
William Goeren, LCSW-R
CANCERCare, New York, NY
Rhea Suarez
The George Washington University School of Medicine and Health Sciences;
The George Washington University Cancer Center,
Washington, DC
Yuqing Zhang, MPH
The George Washington University School of Medicine and Health Sciences;
The George Washington University Cancer Center,
Washington, DC
Allison C. Harvey, MPH
The George Washington University School of Medicine and Health Sciences;
The George Washington University Cancer Center,
Washington, DC
Charles Kamen, PhD
Department of Surgery, University of Rochester,
Rochester, NY

Background: There are limited training opportunities for healthcare professionals focused on the supportive care needs of sexual and gender minority (SGM) patients. SGM prostate cancer survivors have unique physical, psychosocial, and sexual needs that often go unaddressed due to lack of provider understanding of those needs.

Methods: To inform the development of a training and companion materials for healthcare professionals to fill this gap, the authors conducted formative research to assess the needs of target learners and SGM patients. Formative research included a survey and focus group of oncology social workers, and interviews with SGM prostate cancer survivors.

Results: Survey respondents indicated SGM patients deserved the same quality care as heterosexual, cisgender patients; however, one-third indicated they were not well informed regarding health needs of SGM people. Focus group themes included differing social support structures for SGM people and the need for healthcare professional training. Patient interviews indicated a need for SGM-specific training of healthcare professionals.

Conclusion: There is a need for ongoing education and training among healthcare professionals to meet the needs of SGM prostate cancer survivors.


Sexual and gender minorities (SGM), which include lesbian, gay, bisexual, transgender, queer, and intersex people, have unique healthcare needs that healthcare providers are often not trained to address. Disparities in healthcare access and health outcomes are magnified among SGM subgroups, such as those who are aged 50 years and older,1 racial/ethnic minorities, and transgender and gender diverse people.2 SGM people may have elevated cancer risk and poorer morbidity and mortality outcomes.3-7 Such disparities are fueled by a number of factors, including discrimination in healthcare settings,2,8 lack of adequate provider knowledge,2,9 and gaps in patient-provider communication.5,10 This article describes results from 3 research activities to inform the development of the online training, “Addressing the Need for LGBTQ-Affirming Cancer Care: A Focus on Sexual and Gender Minority Prostate Cancer Survivors,” available at GWCCacademy.org.

Oncology Social Worker Survey

Methods

The GW Cancer Center fielded a 1-time, anonymous online survey programmed into the secure web-based software REDCap. This quantitative survey was open from May 19, 2017, to June 27, 2017, and promoted through the Social Work Oncology Network listserv run by the Association of Oncology Social Work, as well as GW Cancer Center listservs. No incentive was provided for participation in the survey. Microsoft Excel was used for data cleaning and descriptive analyses. The survey was not powered for statistical tests.

Participant Characteristics

The study sample (N = 44) included social workers primarily from hospital-affiliated clinics or outpatient clinics (39%), community cancer centers (34%), and academic cancer centers (27%). Most respondents worked within medical oncology (86%), radiation oncology (64%), surgery (23%), and radiology (5%). Respondents worked along the full cancer continuum, including prevention (9%), screening (2%), diagnosis (38%), treatment (53%), survivorship (49%), and end-of-life care (40%). (Categories not mutually exclusive.) More than half of respondents (51%) indicated working across the entire cancer continuum.

Results

All survey respondents “agreed” or “strongly agreed” that SGM patients deserved the same quality of care as heterosexual and cisgender patients. All respondents also agreed that LGBTQ patients have unique medical concerns. Respondents differed in their comfort level in caring for LGBTQ patients, in their readiness to support SGM-affirming care, and in their general attitudes and assumptions about sexual orientation of patients (Table). Notably, 56% of respondents indicated that they “rarely” or “never” inquired about a patient’s sexual orientation when conducting a psychosocial assessment, and 58% said they “rarely” or “never” asked about patients’ preferred pronoun when conducting a psychosocial assessment. Thirty-six percent of respondents said they had observed colleagues providing suboptimal care to patients because of their sexual orientation or gender identity. When asked about LGBTQ risk factors for cancer, the majority indicated they were unsure of the answer to 5 of the 7 questions, and 86% indicated an interest in receiving more training to improve LGBTQ patient-centered care. The greatest barriers to providing competent care to LGBTQ patients were reported as lack of knowledge/training (94%), lack of policies in place to ensure competent care (67%), unease with LGBTQ population (55%), and lack of institutional support (48%).

table

Oncology Social Worker Focus Group

Methods

A convenience sample of oncology social workers (OSWs) was recruited with the following inclusion criteria: has a degree in social work, is actively working in an oncology care setting, and speaks English. Recruitment took place from May 19, 2017, through June 20, 2017. A focus group was held on June 21, 2017, using the Webex platform. Twelve individuals expressed interest in the study, 6 consented to participate, and 3 individuals attended the focus group. Individuals who participated in the focus group received a $25 Amazon gift card.

The audio recording was transcribed by an external contractor and analyzed by 2 separate coders (RS and YZ) using NVivo 11. The principal investigator (MPC) resolved any coding differences.

Results

Although the focus group was small (N = 3), the following issues emerged and informed development of the training: patients’ fear of stigma, differing social support structures for SGM patients, and need for healthcare professional training in SGM health. One OSW highlighted stigma that persists even in an area of the United States perceived to be progressive:

"[T]here’s a fear of stigma.…[We need] to try to…help the person feel safe and at ease….That you’re not going to judge them or blame them somehow—just like any cancer patient. You know, to be aware that there is…even here in the Bay Area…we’re sort of enlightened, but there’s still, of course, a lot of stigma and a lot of fear of stigma."

Another participant shared that providers did not understand SGM patients’ family and social support structures in their setting:

"One story that stands out in my mind was—it was a woman and her friend and she was a lesbian, and I don’t think that either of her friends were, but they identified as family with each other. And, there were…class issues…that came up between…the doctor, patient, and her family. And, he kind of had a reaction…to the fact that they were saying that they were family when they weren’t as if that was a lie. And, I had a conversation with him about how this was her family of choice. That to me, it made sense in the context of both the class situation and the sexuality situation that this really was her family as far as she was concerned, and it wasn’t a lie. And, it actually made a difference for the doctor. He actually came back and…thanked me for the intervention. And, he was able to kind of repair the rapport with the patient after that."

The patient-provider disconnect in this story begs the need for healthcare provider training. One participant summed up this disconnect stating, “This is a new area…of focus in general within the healthcare world and medicine, and our medical oncologist[s] don’t have a lot of training in that.”

Patient Interviews

Methods

The study team interviewed a convenience sample of prostate cancer survivors with the following inclusion criteria: 18 years or older; self-identified as gay, bisexual, and/or of transgender experience; and speaks English. Recruitment took place between July 20, 2017, and September 30, 2017, via electronic flyer distributed by the GW Cancer Center through professional contacts, professional organizations, listservs, and community-based partners. A $25 Amazon gift card was offered to individuals who participated in an interview.

The semistructured interview guide explored patient feelings, concerns, and experiences with prostate cancer diagnosis, treatment, and survivorship. Virtual interviews were recorded via Webex. Recordings were transcribed by an external contractor and analyzed by 2 separate coders (RS and YZ) using NVivo 11. The principal investigator (MPC) resolved any discrepancies in coding.

Results

Participants (N = 7) indicated a variety of important factors in choosing a healthcare provider. One patient interviewee emphasized provider availability and convenience:

"Well, one of the ways is I look at the medical provider, and depending on what I’m accessing, I want to know number 1: their availability. Number 2: I want to know their success rate as an organization. And number 3: the way that they, especially when I make the appointment, when I call in to make the appointment, when I start getting those long wait times, or getting these voice mails."

Another participant indicated that medical experience and insurance coverage was critical: “So there’s the experience with the treatment options, the professionals, how much insurance coverage I get for it, that kind of thing.”

Many participants mentioned side effects of treatment, including the impact of catheterization and lack of bladder control:

"I guess, you know, the side effects were important, you know, in regards to the bladder because you kind of lose control of it for a while. And, initially you have a catheter when you come home from the hospital, which just really kind of freaked me out. I didn’t like that idea. It turned out not to be as bad as I thought it was. It was just a little uncomfortable.…But the bladder issue is a real concern.…It took a while to get control but it’s, you know, under control now."

Sexual side effects were also emphasized: “I had my prostate removed, and there’s definitely side effects to this, which…they’re pretty, pretty serious. I think mentally especially, men are just very different from women, and I think that gay men especially, we’re still pretty active sexually as we get older.” Another participant agreed:

"[Y]ou lose [an] aspect of your sexuality or your sexual performance. There’s a loss. There’s going to be grief to that."

Given the seriousness of these side effects, depression emerged as an unexpected outcome: “I did not realize that it really was true that you can really become depressed about it, because you really have no control over this.” Several participants mentioned how helpful it would have been to have male social workers and support group facilitators:

"Well, just for me as a man—first I’m a man. Secondly, I’m a gay man. Having someone of the same gender to discuss these matters with is more comfortable than discussing it with someone who has never had a prostate, never will have a prostate, doesn’t have a penis or testicles and never will. It’s more comfortable for me to discuss more of these aspects with caregivers and other individuals who are [male]…and of course [someone] who is a gay man who is going to have specifics more similar to my own wouldn’t hurt either."

One participant mentioned attending a support group and finding it unhelpful: “I found that it was diverse in color, but that was, as far as I could see, that was it. But like I said, I only went to a couple because I didn’t see any more benefit to me because it just didn’t seem [like I was] getting as much out of it.” Another participant suggested that a gay support group would be ideal, but admitted that it might be challenging to coordinate:

"I just think if there was like a gay support group that would be good. But I don’t know how you can put that together. I mean, how many gay people have prostate cancer at the same time? But yeah, that would have been helpful because you could share, you know, we have different experiences than straight men have."

The need for more provider training about SGM care and the importance of inclusive marketing also emerged through these interviews.

Intervention

As a result of this formative work, a live webinar was hosted on December 12, 2017, entitled “Addressing the Need for LGBTQ-Affirming Cancer Care: A Focus on Sexual and Gender Minority Prostate Cancer Survivors.” The webinar included a discussion of social determinants that lead to health inequities for SGM patients; the history of pathologizing SGM people in medicine and society; unwelcoming healthcare environmental norms; historical healthcare discrimination; intersectionality; specific impact of prostate cancer treatment for SGM patients, including sexual and psychosocial effects; and 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 was archived, and results from both the live (n = 77) and archived (n = 204) training will be described elsewhere.

Discussion

The research literature and the clinical practices of this study’s project team reveal a number of clinically important points that were addressed in the training. First, SGM people often fear the reaction of their healthcare providers if they “come out.” Many SGM patients with prostate cancer share this fear and receive suboptimal care because their SGM-specific questions and concerns are not addressed.11-13 The prevailing heteronormative and cisgender-normative model of healthcare presents a number of barriers to SGM patients accessing culturally aware and competent prostate cancer care, including homophobia, stigma, and perpetuation of SGM, as an “invisible class” of patients.4,14

In the survey of social workers for this study, 97% endorsed feeling comfortable about caring for LGBTQ cancer patients, and 84% reported feeling comfortable discussing gender identity, yet only 43% said they were well informed regarding LGBTQ patient needs, and 39% said LGBTQ cancer patients were more difficult to treat. This dichotomy between self-reported comfort and self-reported preparation in caring for SGM patients was addressed in the training by describing SGM-specific prostate cancer survivorship challenges.

Existing studies that have focused on SGM people report differences in prostate cancer outcomes.12-20 Changes in sexual functioning caused by prostate cancer treatment (eg, erectile and ejaculatory dysfunction, climacturia) may have greater impact on the quality of life for SGM prostate cancer survivors.12-20 Some SGM people diagnosed with prostate cancer may limit treatment to preserve the ability to ejaculate, a sexual action that literature suggests may be more highly prized among SGM men and their partners.12,13 Poorer erectile functioning after active treatment may cause some SGM survivors to shift their sexual role to being the receptive sexual partner, affecting their sense of self and possibly impacting their romantic partnership.12,13 Further, SGM people in the age range at greatest risk of prostate cancer are also those whose friendships and relationships were decimated by the AIDS epidemic in the 1980s and 1990s. Some of them may be living with HIV, which carries with it a number of medication side effects and the impact of an impaired immune system.13 Such individuals may be further impaired by the psychological implications of a cancer diagnosis and substantive changes in physical and sexual functioning. Thus, some SGM people have been and continue to be affected by the stigma of HIV and now feel the stigma of a cancer diagnosis and impairments in sexual functioning as well.13 Findings from past research informed a focus on the psychosexual impact of prostate cancer treatment in the training.

Providers can better support SGM patients by committing to ongoing self-reflection, learning, and quality improvement. The “Addressing the Needs for LGBTQ- Affirming Cancer Care: A Focus on Sexual and Gender Minority Prostate Cancer Survivors” training is one resource for patient navigators, social workers, and other supportive care personnel for learning and reflection. See resources available below.

Resources Developer Through this Study

Additional Resources for Professional Development

References

  1. Dai H, Meyer IH. A population study of health status among sexual minority older adults in select U.S. geographic regions. Health Educ Behav. 2019;46:426-435.
  2. James SE, Herman JL, Rankin S, et al. The report of the 2015 U.S. Transgender Survey. Washington, DC: National Center for Transgender Equality; 2016. www.transequality.org/sites/default/files/docs/USTS-Full-Report-FINAL.PDF.
  3. Boehmer U, Elk R, eds. Cancer and the LGBT Community: Unique Perspectives from Risk to Survivorship. New York, NY: Springer; 2015.
  4. Deebel NA, Morin JP, Autorino R, et al. Prostate cancer in transgender women: incidence, etiopathogenesis, and management challenges. Urology. 2017;110:166-171.
  5. Griggs J, Maingi S, Blinder V, 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;35:2203-2208.
  6. Margolies L, Scout NFN. LGBT Patient-Centered Outcomes. Cancer survivors teach us how to improve care for all. National LGBT Cancer Network. http://cancer-network.org/wp-content/uploads/2017/02/lgbt-pa tient-centered-outcomes.pdf. 2013.
  7. Quinn GP, Sanchez JA, Sutton SK, et al. Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA Cancer J Clin. 2015;65:384-400.
  8. Eliason MJ, Dibble SL, Robertson PA. Lesbian, gay, bisexual, and transgender (LGBT) physicians’ experiences in the workplace. J Homosex. 2011;58:1355-1371.
  9. Rounds KE, McGrath BB, Walsh E. Perspectives on provider behaviors: a qualitative study of sexual and gender minorities regarding quality of care. Contemp Nurse. 2013;44:99-110.
  10. Boehmer U, Case P. Physicians don’t ask, sometimes patients tell: disclosure of sexual orientation among women with breast carcinoma. Cancer. 2004;101:1882-1889.
  11. Skolarus TA, Wolf AMD, Erb NL, et al. American Cancer Society prostate cancer survivorship care guidelines. CA Cancer J Clin. 2014;64:226-249.
  12. Rosser BRS, Capistrant B, Torres MB, et al. 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;31:432-445.
  13. Ussher JM, Perz J, Rosser BRS. Gay and Bisexual Men Living with Prostate Cancer: From Diagnosis to Recovery. New York: Harrington Park Press; 2018.
  14. Hart TL, Coon DW, Kowalkowski MA, 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;11:2308-2317.
  15. Hartman ME, Irvine J, Currie KL, et al. Exploring gay couples’ experience with sexual dysfunction after radical prostatectomy: a qualitative study. J Sex Marital Ther. 2014;40:233-253.
  16. Lee TK, Breau RH, Eapen L. Pilot study on quality of life and sexual function in men-who-have-sex-with-men treated for prostate cancer. J Sex Med. 2013;10:2094-2100.
  17. Thomas C, Wootten A, Robinson P. The experiences of gay and bisexual men diagnosed with prostate cancer: results from an online focus group. Eur J Cancer Care (Engl). 2013;22:522-529.
  18. Ussher JM, Perz J, Rose D, et al. Threat of sexual disqualification: the consequences of erectile dysfunction and other sexual changes for gay and bisexual men with prostate cancer. Arch Sex Behav. 2017;46:2043-2057.
  19. Ussher JM, Perz J, Kellett A, et al. Health-related quality of life, psychological distress, and sexual changes following prostate cancer: a comparison of gay and bisexual men with heterosexual men. J Sex Med. 2016;13:425-434.
  20. Wassersug RJ, Lyons A, Duncan D, et al. Diagnostic and outcome differences between heterosexual and nonheterosexual men treated for prostate cancer. Urology. 2013;82:565-571.
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Last modified: September 9, 2020

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