Transgender and gender noncon forming (TGNC) patients deserve comprehensive health care that is free of disrespect, harassment, and fear; however, these patients frequently experience high levels of discrimination and harassment from health care providers.1 TGNC patients may postpone acute and preventive care for a variety of reasons including discrimination, poor access to care, and lack of insurance, and they frequently have to teach providers about some aspect of their health care needs.1–5 Indeed, TGNC patients do have some health care needs that differ from those of cisgender patients (e.g., hormone therapy and gender-confirming surgery); thus, TGNC patients commonly access trans-related health care, such as prescriptions for hormones, through certain medical providers who are comfortable with the WPATH (World Professional Association for Transgender Health) standards of care.6 Additionally, multiple transgender-specific primary care and education protocols are accessible to help providers,6–8 including family medicine physicians, deliver comprehensive, respectful medical care for TGNC patients.
Smiley’s Family Medicine Clinic, an urban family medicine residency clinic in Minneapolis, Minnesota, provides health care for over 300 TGNC patients. TGNC patient visits account for over 4% of the approximately 8,000 total annual clinic visits. This is a significant number of TGNC patients considering recent data that suggest 0.3% of the U.S. adult population identifies as transgender9 and studies from parts of the United States, Europe, and New Zealand reporting that between 0.5 and 1.2% of their total overall populations are transgender.10–13 Over the past few years, a number of initiatives (List 1) have been implemented at Smiley’s to help address the traditionally poor health care that members of the TGNC community often experience. We believe that the implementation of these initiatives, including the use of gender-preferred language (Table 1), is one of the reasons Smiley’s TGNC clinic population is so large. Many of Smiley’s TGNC patients are seeking access to medical care specifically related to their gender identity, including hormone therapy, mental health, and referrals for gender-affirming surgery. The initiatives at Smiley’s have been a team effort, involving faculty, residents, and clinic staff. Currently, 31 medical providers, including family medicine residents and a nurse practitioner, work at Smiley’s. Because research has shown that discomfort and lack of training on the part of the medical provider can be a barrier to receiving care among the TGNC community,1,14 an expectation for all providers at Smiley’s is to be comfortable caring for TGNC patients.
We conducted this study to learn from TGNC patients about their care at Smiley’s and elsewhere; our primary objective was to find out how primary care clinics can improve care for TGNC patients.
In the fall of 2015, we held three focus groups. We invited only patients who were 18 or older, who spoke English, and who were patients at one urban clinic in Minneapolis. Using electronic medical records, we identified potential participants as patients who had sought care in relation to their TGNC identity, or who had a diagnosis of gender dysphoria. We mailed invitations to 243 people. We asked participants to share their views on what is important to them as TGNC patients—for both primary care and for TGNC-specific care. The focus groups were conducted at the clinic after hours; none of the authors were present at any of the focus groups. Two compensated outside facilitators who were not associated with providing care led the focus group discussions, based on a guide (see Supplemental Digital Appendix 1 at http://links.lww.com/ACADMED/A466). The discussions were professionally recorded and transcribed. We also administered a short 13-question demographic survey before the start of each of the focus group discussions. We provided each participant with a $30 Target gift card for their participation.
We completed the data analysis using NVivo10 (QSR) International (Melbourne, Australia). The analysis was informed by a social constructivist version of grounded theory, which acknowledges the experience, knowledge, and theory the researchers bring to the process of data collection as part of the analysis.15,16 One of us (R.P.) coded the data; after review and discussion, all of us revised the code. Next, one of us (the principal investigator, A.H.) reviewed the codes, and we all analyzed the data, making clarifications collaboratively. We recorded and analyzed the data from the demographic questionnaire using REDCap (powered by Vanderbilt; Nashville, Tennessee)—a secure, Web-based application that supports data capture for research. We analyzed the answers to each question in aggregate. The Institutional Review Board at the University of Minnesota reviewed and approved all study procedures.
Of the 243 people we invited, 25 people responded that they were interested in attending. Of those 25 people, 23 participated in the focus groups, and 22 completed the survey. The largest of the three groups consisted of 13 people; the smallest comprised 5. On average, the focus group discussions lasted 60 minutes.
The 22 participants who completed the survey provided their age, race/ethnicity, and gender identity (see Table 2). They also recorded approximately how long they had received care at Smiley’s. Three (13.6%) had been patients at Smiley’s for 3 to 6 months; 10 (45.5%) for 6 to 12 months; another 3 (13.6%) for 12 to 24 months; and 6 (27.3%) for over 24 months.
Four main themes emerged from our analysis: (1) shared negative experiences with health care, (2) the need for sensitive and inclusive primary care, (3) defining TGNC-sensitive care, and (4) the challenges of mainstreaming TGNC-competent care into primary care settings. Of note, we have referred to each participant as “they” or “them” throughout to ensure confidentiality.
Shared negative experiences with health care
Participants described having previous negative experiences seeking health care. These negative experiences included being misgendered, insistent use of a nonpreferred name, being assumed to be sex workers, being assumed to be TGNC because of trauma-related experiences, not being believed or understood in relation to their transition journey or needs, and stigma or rejection from providers. To illustrate, one participant commented:
I visited a doctor at one point that almost ran out of the room when he got a sense I was different somehow. He could not leave the examination room fast enough. You could just smell the fear on him that I was different. (Focus Group 3)
Participants talked about the importance of providers being not only affirming but also knowledgeable and accepting of the challenges facing TGNC patients. When patients had a more difficult past history with health care, they described needing time to build trust and security with their health care provider.
If I’m nervous to tell you about something, like it burns to pee, it might take me a bit to jump out and say that. Give me that patience just to know that it’s safe. (Focus Group 3)
One participant described how unsettling it could be to talk about their experiences or their need for care related to their transition.
When you transition, it’s kind of very nerve wracking, especially when you have to tell that to the doctor. And sometimes, I think for example, in my experience, and maybe this is just me, but when I came to the clinic and the nurse asked me what are you here for, I didn’t really know how to answer that because I wasn’t comfortable sharing that with the nurse. (Focus Group 3)
Finally, participants discussed having challenges in navigating health systems. These challenges related to finding providers for a range of different care needs, moving between systems of care, and navigating the disconnect between the participants’ own gender identities and the gender identity used by insurance companies or health electronic health record systems. One participant, expressing great frustration, felt they had no choice but to comply with being labeled female just to access needed care; they commented:
I have to stay female until next year or they won’t pay for me to have a pap smear. So, I get shit in the mail that says, “You ready for a pap smear, Ms. blah blah blah?” And I am like, “I am so fucking tired of being called Ms.” You know? I—it’s frustrating as hell. (Focus Group 2)
The need for sensitive and inclusive primary care
Participants described what ideal primary care means for them. Ideal care would cover a wide range of needs across physical, mental, and transition-related health. Participants wanted to be able to seek care for their non-transition-related health care needs in an environment where their TGNC identity is not the focus of the provider.
So, it’s really nice when I come here, because I think I have the flu or something else, that my trans status doesn’t come into it. Maybe I just need antibiotics and not talking about surgery. (Focus Group 1)
Likewise, participants described a range of common behavioral concerns, most of which were not specifically TGNC related, that they wanted addressed.
Some participants did, however, want care for one aspect of their identity as a TGNC patient: the management of hormones—either starting or maintaining them. Other participants simply wanted a provider who would consider how hormones might impact their other varied health issues.
As a trans person with a complex medical history, there’s just not research on how all these things interact. And so, a lot of times the question is I don’t know, and that takes a little bit longer in a visit. (Focus Group 1)
Defining TGNC-sensitive care
We asked participants to reflect on their experiences receiving care from providers who have particular expertise, interest, and experience in providing care for TGNC patients. The participants described three outstanding features defining exceptional TGNC-competent care: an acceptance of TGNC identities, being treated as a whole person, and partnership.
Acceptance of TGNC identities.
Many of the participants expressed the importance of their health care team having knowledge and acceptance of their choices and community. One participant described how especially important and humanizing this was for someone who has a nonbinary identity.
Well, you can just come in and sign the paper and stuff, and you can write down that you’re both sexes and nobody looks at you strange or anything that I’ve seen so far. And everybody treats you like you’re a human being. (Focus Group 2)
One of the participants talked about how important it is for providers to use preferred gender pronouns, and specifically mentioned receiving care at Smiley’s.
I will say I have never been misgendered here. No doctor has been weird about it. (Focus Group 3)
The acceptance of TGNC identities included having providers affirm the patient’s identity with wider clinic staff (i.e., the front desk staff, lab staff) or other providers.
Being treated as a whole person.
The participants expressed clearly the importance of being treated as a whole person—a whole person with a full range of health needs, roles, identities, and experiences. Participants described how they valued providers’ taking time to ask them about their lives and needs in a way that not only acknowledged their TGNC identities but also expressed understanding of other aspects of their lives. To illustrate, one participant noted:
I really appreciate when people can see me as a whole person. Like being trans is part of me, but I’m also a parent, and I—there’s a lot of other parts of me that come into play. (Focus Group 1)
Participants described valuing the development of a partnership with their provider. They appreciated when they were treated with kindness and nonjudgmentally engaged in their own care. Participants described the providers who engage TGNC patients as those who express value for the perspective, knowledge, and experience of the TGNC person; those who consider the patient’s own understanding to be an asset to the care process; and those who include the patient as part of the care team.
It is gold that when I come in, we’re having a conversation as two people who have information about the issue in question. One from a medical perspective and one from actually living it, and they are equally valid. You have resources I don’t, I have resources you don’t, and we’re a team. I really value that we are totally equal partners in what we’re doing. (Focus Group 3)
The challenges of mainstreaming TGNC-competent care into primary care settings
Participants clearly valued being able to access TGNC-competent care in a primary care setting. They appreciated the potential to be seen for both gender- and non-gender-related health care in a setting that positively affirms individual identities. The participants, however, clearly noted some challenges in locating TGNC within the primary care setting. Those challenges were a source of some frustration and concern.
Participants described experiencing inconsistency in the level of TGNC-competent care across providers, as well as having to spend a considerable amount of time and effort educating providers, particularly providers inexperienced in TGNC care. Some participants felt the clinic had a responsibility to strive for a consistent level of culturally competent TGNC care across the practice and not just rely on the providers who had become known for providing TGNC care. They noted that this consistency was especially important for making them feel as if they could access any provider in the clinic.
And the clinic—whatever they call it, the clinic manager came and was like, “What’s wrong?” And he’s like, “Well, you know, not everybody’s—not everybody who’s a provider is comfortable with this, and please try to understand.” And it’s, like, it’s not my place to understand. They’re providing a service. They need to adapt to each patient. (Focus Group 2)
The gap highlights a potential challenge in mainstreaming a TGNC-competent practice: developing clinic-wide consistency.
Notably, participants expressed openness to having learners assist or shadow during an office visit, but with some reserve.
With the training, my doctor’s always training someone, and that’s really cool, and I’m excited for the new providers to get that knowledge, but sometimes I just don’t want 50 people in the room when I’m trying to talk about this really difficult thing. (Focus Group 1)
When provider practices and training do not align with the needs of TGNC patients, significant barriers form. These barriers get in the way of providing care for TGNC patients, much of which may not be gender related. Further, practices that do not align with TGNC patient needs reinforce the many, at times exceptionally negative, experiences many TGNC patients have already encountered, perhaps further alienating these patients from the care they need. We found that one aspect of care most highly valued in this group of participants is being treated as a whole person with a full range of needs, only some of which happen to relate to their TGNC identity. We feel it is imperative to treat TGNC patients in a sensitive manner that does not focus on their TGNC status unless it is related to the reason for the visit. Our findings align with those from prior qualitative studies: Other TGNC patients have encountered negative experiences when seeking non-gender-related care,17 and others have reported that whole-person care contributes to a positive clinic experience.18 The provision of partnered and patient-centered care is now a requirement of family medicine residencies that participate in the Milestones Project19; this requirement further testifies to the importance of competent, respectful care.
We learned that a challenge to providing TGNC care in the primary care setting is providing consistent care clinic-wide across every member of the team, no matter their roles. That is, patients should receive a high standard of care from any team member, even those who are not their primary care provider. Likewise, patients should expect all clinic staff, including those who work in the office and lab, to have knowledge of TGNC issues, including preferred language. The adoption of such clinic-wide practices requires proactive planning and the training of all staff and clinicians. Prior research has uncovered similar needs among transgender youth.20 Collectively, these findings raise the question of how to best mainstream TGNC care within primary care, especially because no standard of competence for TGNC care is currently available. Further, best practices for TGNC health care are frequently evolving. These changes are evident in the modifications in the most recent iteration of the WPATH Standards of Care, which advocate a less strict and more patient-centered approach to mental health services, plus greater access to hormones and surgical interventions.6
The focus groups also revealed that initiatives implemented at Smiley’s (e.g., using preferred gender pronouns and patient-centered care for TGNC patients) align with participants’ desires and positive perceptions of primary care. Although we did not aim to identify which specific clinic changes (List 1) were associated with improved patient experiences, we feel Smiley’s initiatives may guide providers at other clinics to better serve their TGNC population. We also recognize that not all of our providers and clinic staff have been able to attend TGNC-specific lectures at Smiley’s Clinic. We believe that requiring these lectures to ensure training consistency among providers and staff is an important next step. Consistency in training at all levels is vital given the large range of TGNC identities (Table 2), the corresponding medical needs of these identities, and the lack of familiarity with many of these needs and identities among many medical providers and trainees.
We acknowledge that some providers may feel less inclined to make TGNC care a priority in their own practice during or after residency. Nonetheless, all providers at a primary care clinic can have a foundation in TGNC care that will make patients feel comfortable, welcome, and accepted. Others have begun to improve LGBT and intersex cultural competency in medical school education,21 which has the potential to improve knowledge of TGNC health care before graduates enter residency training. Still, new physicians should have residency-supported training in TGNC care after medical school. We realize the patient population and clinic culture is unique for every clinic, and therefore we cannot say how all clinics can improve or implement TGNC care. We believe, however, that all clinics can start by offering gender-neutral bathrooms for patients and staff, educating providers and staff about TGNC-sensitive language, providing dedicated lectures on TGNC care (conducted by current clinic staff or outside lecturers), and compiling print and online resources for clinicians to use as care guides. Ideally, a clinic should identify at least one person who has an interest and desire to improve TGNC care, and the rest of the clinic should offer support.
We acknowledge limitations to this study. We recognize there may have been selection bias; that is, people who had particularly memorable experiences previously may have been more inclined to participate. The participants’ duration of time receiving care at Smiley’s varied, and participants who have recently started to receive care at Smiley’s may have had different experiences than those who have been receiving care at Smiley’s for years. Also, although the focus groups consisted of diverse gender identities, the number of participants was small and the groups did not adequately represent the various TGNC identity subgroups (e.g., transgender man, transgender female, genderqueer). Research indicates that people with nonbinary genders or more individualized gender identities may seek medical care less often than those with binary gender identities because of fear of discrimination.22 Ascertaining whether certain groups of TGNC patients experience primary care differently than other groups is an important avenue for future research.
Primary care clinics should strive to improve care for TGNC patients. Impactful ways to provide sensitive and competent primary care to the TGNC patients include allowing patients to self-identify; respecting the gender identities of every patient; and focusing on the whole person, not the trans status of the patient—regardless of individual providers’ comfort in the medical management of TGNC care. Ongoing education and training about TGNC care at a clinic-wide level is needed.
Initiatives at Smiley’s Family Medicine Clinic (Minneapolis, Minnesota) Designed to Improve the Health Care of Transgender and Gender Nonconforming (TGNC) Patients
- Presenting provider and staff lectures about TGNC health care
- - Held two to three times per year (for 30–60 minutes) at Smiley’s Clinic during dedicated weekly didactic time and staff meetings
- - Conducted by faculty and family medicine residents who have a specific interest or previous training in TGNC health care
- - Focused on terminology and definitions, barriers to health care, hormonal and surgery options, and data on potential risks with hormone treatments
- - Attendance dependent on physician and staff schedules
- Offering provider and staff trainings regarding the use of preferred names and pronouns throughout clinic visits, starting with the check-in process
- Creating an accessible TGNC care manual for providers to reference during clinic visits
- - Composed of material designed by Smiley’s providers and from preexisting resources and protocols on TGNC care6–8
- Providing TGNC patients with access to prescriptions for feminizing and masculinizing medications using an informed consent process following the World Professional Association for Transgender Health (WPATH) standards of care6
- Providing single-stall, gender-neutral bathrooms throughout the clinic
- Modifying the electronic medical record to easily show preferred names and pronouns
- Designing specific TGNC note templates and order sets for the electronic medical record
- Building a referral network for TGNC-related services beyond primary care, including local mental health providers, surgeons, and voice therapists
- Educating rotating medical students about TGNC primary care
The authors with to thank Brianna McMichael and Kirsten Anderson for their assistance with expertly facilitating the focus groups. Compensation was provided for Brianna McMichael and Kirsten Anderson, and written permission to include their names has been obtained.
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