“We Are Doing the Absolute Most That We Can, and No One Is Listening”: Barriers and Facilitators to Health Literacy within Transgender and Nonbinary Communities
Abstract
:1. Introduction
1.1. Barriers to Accessing Healthcare
1.2. Facilitators to Accessing Healthcare
1.3. Health Literacy among TNB Individuals
2. Materials and Methods
2.1. Positionality
2.2. Theoretical Framework
2.3. Methodological Approach
2.3.1. Study Sample
2.3.2. Recruitment & Data Collection
2.4. Data Analysis
3. Results
3.1. Barriers to Accessing Care
3.1.1. “We Need More Ways to Access Care”: Difficulty Identifying and Physically Reaching Care
They [insurance company] don’t have a list of doctors who are covered and write letters for surgeries. So, I had to call about 60 doctors. And out of that, maybe 2 of them—well, 2 of them said they’d give it a try, but they had no experience.
I know people that drive like 5 hours to get to care. And so, I think having more available options, whether that’s virtual care where you can interface with the doctor via video or texting, having that available where you don’t always have to go to a physical clinic. We need more ways to access care.
3.1.2. “We’re Largely Powerless”: Insurance and Out-of-Pocket Expenses
I think we’re largely powerless in many ways. The electrolysis was mentioned earlier, and my insurance was covering it with no deductible, and I’ve just been informed informally, never officially, that now I have a deductible that could amount to fifty percent payment, so drastically altering what I have available.
When you’re talking about surgeries spread out over a long period of time, especially, and even if you don’t have complications with phalloplasty, you’re looking at around a year to two years, somewhere in there. If you have complications, it can go way longer than that, so the problem is, then, that it keeps you in employment, assuming that you got this far, you’ve got employment, you have health insurance at work. You’re stuck there.
3.1.3. “Why Am I Supposed to Trust You to Treat Me?”: Negative Experiences with Healthcare Providers and Staff
Provider Incompetence
I saw my primary for a checkup, and they were like, “So, will we need to do mammograms as you get older?” And I’m like, “You should know…! Shouldn’t you be telling me?…” It’s almost like the doctors have more questions for us than questions that we have for doctors.
Discriminatory & Oppressive Practices
I had one physician that I went into for just primary care stuff; I was sick. And was talking to them, and they were… completely uneducated on being transgender, and were asking me, “Why [I] made this choice,” and were really encouraging me to stop hormones, things like that. And so that was pretty difficult to deal with.
I will say for me that since my identity has shifted from nonbinary to more trans-femme that things have actually gotten simpler for me because for all those years that I identified as nonbinary and I was going by a gender-gray nonbinary name, it always felt like an uphill battle and very often I just gave up fighting, but I’ve found that since I changed my name to a more obviously female name that, you know, I have yet to be misgendered or misnamed by somebody who’s like paid to not to.
3.1.4. “You Would Be Constantly Proving That You’re Trans Enough”: Exclusionary Forms & Processes
Sometimes it’ll just be an automatic denial if the gender doesn’t match who [insurers] think should receive that treatment. So, if you’re labeled ‘M’ at the pharmacy you’re automatically denied from your insurance for estrogen. If you’re labeled ‘F,’ automatic denial for testosterone. There really should be more flexibility with pharmacies around choosing what it should say so that you can actually have it covered by your insurance.
Another participant described the negative mental health effects of being denied access to gender-affirming medical care through the WPATH model:That was my number one concern, what I was really worried about when I started treatment was that it would be like basically a constant test, like the thing with the gatekeeping, that you would be constantly proving that you’re trans enough or that you’re feminine enough, or whatever the case may be, that the doctor would actually want to see you to approve treatment and I did get a little of that with the therapist I saw.
I’m not gonna talk to a cis person about what’s going on in my brain…I was told that I had to come back after a year and sit and think about whether or not I wanted HRT because I was too depressed to transition. And it turns out, transitioning was what helped me not be depressed.
That perfect system would be, I still think… I mean, call me ruthless, but I still think that there should be a little bit of gatekeeping in place for like, to help us think. I did four years of therapy before I decided to go on hormones, like, for me, I needed that, I needed to process that out.
3.2. Facilitators to Accessing Care
3.2.1. “Respecting My Body”: Positive Experiences with Healthcare Providers and Staff
That’s the thing that has to be debunked if we’re trying restructure this system. The second that somebody says, “I’m trans,” it’s not, “We’re gonna make you a man,” “Make you a woman,” or, “Make you that person,” “We’re going to help seek out the kind of person… you were always meant to physically show yourself as”.
Other participants shared positive experiences about medical staff stating they would do research on a medication and get back to them, which was a novel experience. These experiences also opened the door to having more transparent conversations about treatment plans and patients being able to advocate for their needs in an affirming setting.Either you’re expected to be the expert, or you get gatekept and you have to, like, fight for what you need and for her, like with my physician, it feels very much like she treats me like a participant, like an informed participant, and she’s open to trying new things.
My current doctor asked me what I preferred for my genitals to be called, and that was really cool, and felt like pretty advanced, [scoffs] in this world. So, it was respecting my body and how I view my body. That was, that was nice.
3.2.2. “There’s Nothing Better about Pronouns than Having Someone Model It”: Inclusive Forms and Processes
Since I started transitioning, they’ve updated their forms throughout the local hospital to have your pronouns, and I think they have a slot for sex and gender identity. I don’t know what that was the result of, but it was exciting to see.
My last OB/GYN appointment was a year ago and everything was gendered. I went back like a month ago and nothing was. The front desk didn’t gender anyone. There was nothing on paper I had to fill out that was sex or gender. It was completely different after only a year, and it was way better.
There’s a long process to getting IDs and stuff updated in the system, so I’m not changing any of my information until Jude’s Law goes into effect and I can get [my birth certificate, passport, and driver’s license] all lined up. Those all need to be in line. What happens if I’m denied care because they are not all in line?
4. Discussion
Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Demographic | n (%) |
---|---|
Race & Ethnicity | |
White/Caucasian | 34 (73.9) |
Hispanic | 3 (6.5) |
Asian | 3 (6.5) |
Native American | 1 (2.2) |
More than one race/ethnicity | 5 (10.9) |
Gender | |
Transfeminine/transgender woman | 23 (50.0) |
Transmasculine/transgender man | 12 (26.1) |
Nonbinary/Agender | 9 (19.6) |
Another gender identity | 2 (4.3) |
Sexual Orientation | |
Bisexual/pansexual | 20 (43.5) |
Lesbian | 9 (19.6) |
Straight/Heterosexual | 7 (15.2) |
Queer | 6 (13.0) |
Asexual | 2 (4.3) |
Gay | 1 (2.2) |
Questioning | 1 (2.2) |
Age | 39.5 (16.60) * |
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Share and Cite
Hostetter, C.R.; Call, J.; Gerke, D.R.; Holloway, B.T.; Walls, N.E.; Greenfield, J.C. “We Are Doing the Absolute Most That We Can, and No One Is Listening”: Barriers and Facilitators to Health Literacy within Transgender and Nonbinary Communities. Int. J. Environ. Res. Public Health 2022, 19, 1229. https://doi.org/10.3390/ijerph19031229
Hostetter CR, Call J, Gerke DR, Holloway BT, Walls NE, Greenfield JC. “We Are Doing the Absolute Most That We Can, and No One Is Listening”: Barriers and Facilitators to Health Literacy within Transgender and Nonbinary Communities. International Journal of Environmental Research and Public Health. 2022; 19(3):1229. https://doi.org/10.3390/ijerph19031229
Chicago/Turabian StyleHostetter, C. Riley, Jarrod Call, Donald R. Gerke, Brendon T. Holloway, N. Eugene Walls, and Jennifer C. Greenfield. 2022. "“We Are Doing the Absolute Most That We Can, and No One Is Listening”: Barriers and Facilitators to Health Literacy within Transgender and Nonbinary Communities" International Journal of Environmental Research and Public Health 19, no. 3: 1229. https://doi.org/10.3390/ijerph19031229
APA StyleHostetter, C. R., Call, J., Gerke, D. R., Holloway, B. T., Walls, N. E., & Greenfield, J. C. (2022). “We Are Doing the Absolute Most That We Can, and No One Is Listening”: Barriers and Facilitators to Health Literacy within Transgender and Nonbinary Communities. International Journal of Environmental Research and Public Health, 19(3), 1229. https://doi.org/10.3390/ijerph19031229