Interpersonal and structural healthcare barriers among transgender women: Healthcare curriculum needs

Interpersonal factors

Transgender adults have reported regularly experiencing stigma, prejudice and discrimination within the healthcare system. One in three transgender patients delay accessing and using medical services due to discrimination and cultural insensitivity within the clinical setting (Seelman et al., 2017; Stroumsa et al., 2019). The majority of healthcare providers lack understanding of transgender healthcare needs and, when paired with cultural insensitivity displayed by clinical staff, this situation exacerbates the incidence of missed preventive screening for potential health problems and postponed care (Dolan et al., 2020; Glick et al., 2018). Because of limited healthcare provider knowledge, most transgender people have reported feeling invalidated when healthcare providers were unaware of their complex healthcare needs (Sequeira et al., 2022; Stroumsa et al., 2019). In addition, accidental and/or intentional deadnaming or misgendering are common issues reported by transgender patients, which contribute to nonadherence to medical recommendations or discontinuation of healthcare utilisation (Dolan et al., 2020). Finding healthcare providers who are experienced or well-versed in transgender health needs remains challenging, yet the health professional community has not prioritised training and continued education (Maragh-Bass et al., 2017). Services for transgender-appropriate care are scarce, and transgender patients report high levels of dissatisfaction among the gender-affirming services that are available (De Santis et al., 2020). Utilising an interpersonal lens, educational and affirming policies are needed to improve healthcare for transgender people.

Structural factors

While transphobia pervades other social institutions such as housing, education, and public accommodation in the USA (Stroumsa et al., 2019), there are a multitude of structural barriers that have prevented transgender adults from gaining access to health services. Blocking gender-affirming use of public toilets and the denial of medical services because government-issued identification or physical appearance does not match the gender identity listed in the medical records continue to pose barriers (Haire et al., 2021; Kachen and Pharr, 2020). In a previous study, 45% of transgender patients had gender-discordant identification, which contributed to psychological distress and suicidal ideation (Scheim et al., 2020). Being denied access to healthcare services due to matching identification further inhibits transgender people from obtaining healthcare equity (Romanelli et al., 2018). Unfortunately, transgender nondiscrimination protections remain at the forefront of shifts in political power.

The Affordable Care Act (ACA) enacted 2010 extended nondiscriminatory protections to include gender identity. Under this law, sex is defined as male, female, or a combination of the two. While the ACA spearheaded antidiscriminatory policies, the interpretation and enforcement of these types of federal policies are left to state and local facilities (Bakko and Kattari, 2021). The Trump Administration reversed the protection for transgender people by defining ‘male’ and ‘female’ by anatomy at birth, but earlier nondiscriminatory protections have recently been restored by the Biden Administration (Rosenthal et al., 2022). The ACA expanded healthcare access for transgender people by widening insurance coverage, provisions for nondiscrimination, and recommendations for routine data collection on health disparities (Simmons-Duffin, 2020). However, since the implementation of the ACA, many US states have not expanded Medicaid coverage to reach people that fall into the coverage gap, potentially leaving many transgender people without health insurance (Bakko and Kattari, 2021; Rosenthal et al., 2022). Most traditional health insurance plans inadequately cover the majority of gender-affirming procedures, leaving patients having to pay out-of-pocket expenses (Sequeira et al., 2022). Exclusionary insurance policies and insurance unaffordability are additional factors that contribute to healthcare underutilisation among transgender people (Bakko and Kattari, 2020; Johnson et al., 2020).

Lack of trained healthcare providers

Almost all participants expressed the need for provider education about transgender needs. Having to educate healthcare providers about transgender healthcare was viewed as a negative aspect of navigating the healthcare system. Participants described many instances of being more knowledgeable about transgender-related health needs than their healthcare providers. Limited healthcare provider knowledge was a debilitating obstacle for participants. Educating healthcare providers on gender-affirming health issues was described as awkward and discouraging. One participant mentioned that her previous provider was ‘not aware of how to deal’ with her (Participant 108). Another stated, ‘You don’t always see the same person, and you have to kind of re-educate’ (Participant 112). And a third person said,

Oh, definitely. It’s a big pain a lot of the time. Yeah. I always feel like I have to explain why I don’t need such and such, or . . . I don’t know, or they just don’t know any of the terminology. Yeah. (Participant 106)

Participants mentioned that once it was apparent that a healthcare provider was not knowledgeable about transgender-related health needs, there was a sense of disconnect. One participant described a recent encounter with a physician who was not familiar with gender-affirming care: ‘They had no idea how my prescription worked . . . It was real eye-opening . . . They probably weren’t used to treating people like me’ (Participant 109). Many participants had received relevant healthcare knowledge from other transgender women, instead of healthcare providers. As one participant stated, ‘. . . everything I’ve found medically has been through word of mouth from other trans-people’ (Participant 112):

I am so awkward trying to talk to doctors about trans stuff . . . and it wasn’t something I was excited to do either. Rather it is easier to speak to other trans people . . . or look it up myself. It’s better than a physician that doesn’t know anything. (Participant 110)

Another barrier participants encountered was difficulty finding a healthcare provider who was willing to examine or treat transgender people. Participants expressed a strong desire for healthcare professionals that were accepting and knowledgeable about their specific health needs.

It’s been kind of tough, trying to find doctors that are accepting, or that are willing to . . . not just willing to help, but that have an idea of what they’re doing. And some people are more familiar than others and are better at helping. Some want to seem like they know what they’re talking about when they don’t (Participant 112).

Limitations to healthcare access

Cost was often mentioned as a major barrier. The extensive cost of gender-affirming surgery and hormone replacement therapy were cited as issues. Several participants described how seeking such services was financially demanding and delayed their ability to obtain quality healthcare. One participant stated that, ‘the cost has impacted my transition and growth as a woman’ (Participant 108):

I mean, I’ve gone every time that I needed to go, but the cost has delayed when I wanted to go or the ease of access, if that makes sense. I mean, I’ve been successful in going, however, the cost has made it difficult to go. (Participant 102)

Many participants indicated they had previously utilised or bought hormones from unlicenced sources without medical supervision. Nonprescribed hormones were obtained when participants were denied hormone replacement therapy, turned away from healthcare services, or had limitations in insurance coverage. As one participant put it, ‘I just borrowed hormones from a friend until I could like see my doctor’ (Participant 110):

I bought medication overseas because I got frustrated with the doctors back then. So, and then after one year, I went to the [clinic name] for transgender health care. And I was taking hormones illegally, and they’re giving me prescriptions for hormones, it seemed like every six months. (Participant 113)

Several participants specified they only visited endocrinologists and no other healthcare providers and specialists. Many cited hormone replacement therapy as the dominant reason for pursuing care from endocrinologists specifically. Some participants disclosed previous negative experiences with healthcare providers and the healthcare system, so visiting an endocrinologist was the minimum level of care that participants received. As one participant communicated, ‘I do go to an endocrinologist for hormone therapy, outside of that, I don’t do a whole lot’ (Participant 112).

So, I go to my clinic which prescribes me my hormones once a year, and that’s only because they have to. And I really meet with the doctor for about 15 minutes, and I do the blood work, and then I’m out of there . . . no desire to see anyone else (Participant 105).

Implicit bias

Misgendering within the healthcare setting was reported as the most prominent reason participants were not fully satisfied with their healthcare experience. All participants described instances of being misgendered within the healthcare setting at some point over the course of their lifetime. Misgendering was frequently cited as one of the major forms of disrespect in the clinical setting, and almost all participants described feeling embarrassed, annoyed and uncomfortable when misgendered. As one participant described it, ‘I felt that [healthcare providers] were purposefully referring to me as male when I didn’t wanna be addressed that way . . . they did it purposefully to try and instigate me or something’ (Participant 100):

I’d had my name changed and had to use my legal name, you know. I could deal with [being misgendered] a bit more but when I’m checked into the hospital under my legal name and you know. Now, you see I have breasts, and they’re coming in to talk to me about my oestrogen, when you call me ‘sir’ in that sort of . . . I mean in that sort of context it just feels really like they’re doing it kind of on purpose, just to be jerks. (Participant 111)

Many participants discussed experiences of being stereotyped or witnessing confusion by healthcare providers due to their gender identity. Healthcare providers had a difficult time deciphering patients’ hormone use, certain completed forms of surgery, or other affirming treatments previously received. In some instances, healthcare providers focused solely on the characteristics of participants, such as voice, facial hair or height. One participant recalled the following interaction: ‘Well, you’ve got a deep voice. You’re a dude’, and this, and that, you know . . . it just makes you feel so humiliated and uncomfortable with receiving the care’ (Participant 105).

Invasive questions, a lot of assumptions. ‘There was blatant, just like blatant [disrespect] all the time. You know, they ask you questions that they wouldn’t ask any other patient. “Have you had ‘the surgery’?” Well you know, a couple of assume it’s because of menopause, which is okay, well thank you but also no thank you. Do I look that old? Look at my chart. Menopausal’ (Participant 111)?

Explicit bias

Denial of services was mentioned as a recurrent issue when seeking healthcare services. While there might be several reasons for denial of service, participants expressed that refusal of services were most likely due to either provider unawareness or unwillingness to provide services for transgender identified individuals. One participant mentioned, ‘So they cancelled my [appointment] . . . like they just told me that they wouldn’t see me. The doctor didn’t want to deal with that’ (Participant 110):

Like, the psychiatrist back at [insurance company] wasn’t, like, saying, ‘I’m not gonna treat you because you’re trans’, but he made it a very hostile environment that I didn’t want to come back to get treatment, and stuff like that with the medical system. (Participant 106)

Some participants encountered problems with medical health records and documentation. Various participants disclosed difficulty with health services and medical establishments accommodating their preferred name and pronouns. In addition, some participants lacked the financial resources to legally change their names, which contributed to reluctance by healthcare centres to use their preferred names. As communicated by one participant, ‘It was difficult to change my name and gender on the paperwork in the HMO [Health Maintenance Organisation]’ (Participant 103):

It’s kinda difficult because you can put down your sex as male and then you put your gender identity as how you identify. And doctors will still come in and deadname you, and de-gender you, and treat you as your de-gender or your assigned gender at birth. I think every time I’ve come into the hospital, or I’ve come into the health centre on my university campus, I’ve always been uncomfortable. (Participant 114)

Participants voiced their experiences of discrimination within the healthcare setting. While at times discrimination was perceived to be deliberate, at other times it was due to microaggression that created a hostile environment which caused participants to feel uncomfortable. These microaggressions perpetuated avoidance or not returning for needed services. Avoidance of services or delayed care had a negative impact on the overall health of participants. As specified by a participant, ‘When I was cisgender, it was so much easier to get an appointment, or to get recognition, or to feel like I’m being treated correctly’ (Participant 104).

Yes. I have all the symptoms for an aneurysm and I have a very, very bad infection . . . and I cannot afford a better care clinic, and the clinic that they try to send me to is, you know, [a lower income facility]. And every time I went there, I couldn’t even get through the enrolment portion because they were so discriminatory towards me. I’m not gonna put my healthcare in somebody’s hands that’s actively trying to hurt me (Participant 105).

Interpersonal factors

Healthcare providers’ lack of knowledge about transgender health issues posed a major barrier to participants’ care (Korpaisarn and Safer, 2018). Most participants expressed having to educate healthcare providers about gender-affirming care. Confirming previous research, the study found that the lack of physician education amplified the avoidance of healthcare services and increased perceptions of discrimination in healthcare settings (Kcomt et al., 2020; Stroumsa et al., 2019). Delayed healthcare utilisation was four times higher when transgender women had to educate healthcare providers and explain their health needs to them (Jaffee et al., 2016). While some healthcare providers who attempted to treat transgender patients were well intentioned, many lacked the necessary confidence, which led to refusal of care (McPhail et al., 2016).

Study findings highlight healthcare professionals’ growing need for training and education on transgender health (Stroumsa et al., 2019; Teti et al., 2021). Many participants explained with frustration that the reason they had to assume the role of educators was that transgender health issues had low priority in medical schools’ curricula. Although some have tried to incorporate transgender health into their curricula, relevant information is often condensed and lumped under the LGBTQ + umbrella, thus failing to address the specificity of transgender needs (Dubin et al., 2018). Thus, closing the educational gap among healthcare professionals should be a priority (Seelman et al., 2017).

Participants reported difficulty in finding providers that specialised in gender-affirming care. Several participants resorted to seeking information from other gender nonconforming individuals or through virtual (online) means, which raises issues concerning the information’s validity. For instance, the use of hormones without medical guidance can increase the risk of blood clots, hypertension, liver disease and other serious complications (Korpaisarn and Safer, 2018). Utilisation of online networks for healthcare needs and treatment can have serious ramifications. Participants also lamented the financial burden of healthcare use. While majority of participants had some form of health insurance, the cost of clinic visits, limitations on insurance coverage and time away from work created obstacles to obtaining medical care. The cost of treatment, shortcomings in healthcare services, confusion over insurance policies, and limitations on insurance coverage are commonly cited as barriers in previous research (De Santis et al., 2020; El-Hadi et al., 2018).

Gender-affirming hormones can significantly help with reducing gender dysphoria and improving the mental health of transgender individuals. Many transgender women use feminising hormone therapy such as oestrogen and androgen inhibitors (Pachauri et al., 2022; T’Sjoen et al., 2019). Gender-affirming hormones are prescribed and monitored under the supervision of an endocrinologist (Khan et al., 2019; T’Sjoen et al., 2019). Some participants reported that they only attended their endocrinological medical appointments, but beyond this, care from other providers and specialists were not pursued. Previous research has indicated that services for cardiovascular health, cancer prevention, sexual health (including fertility preservation and family planning) and mental health are essential for transgender women. However, these services are often neglected, while gender-affirming procedures are prioritised (Bakko and Kattari, 2020; Khan et al., 2019). Various participants reported that they had obtained unprescribed hormones either through the Internet or from transgender friends and acquaintances. Using hormones in an unmonitored manner, often in incorrect doses, can cause dire health consequences and mortality (Khan et al., 2019).

All participants reported being misgendered by healthcare professionals. Misgendering was perceived as a form of microaggression, which led to embarrassment and annoyance. Misgendering was also associated with a lack of education and limitations in gender affirming sensitivity or cultural training. Rushed or inadequate time spent on medical charts and documentation prior to patient engagement also contributed to misgendering (Dolan et al., 2020). Participants said that being misgendered impacted their overall satisfaction and reduced the likelihood that they would return for additional services. Participants reported invasive questioning about their bodies and often being subjected to narrow assumptions based solely on their gender identity. Excessive curiosity about gender and sexuality outside gender-related issues, coupled with a lack of in-depth knowledge regarding gender-affirming healthcare needs, resulted in an environment in which transgender patients felt simultaneously hyper-visible and underserved.

Structural factors

Participants cited discrimination in the form of denial of care or disrespect from healthcare providers as systemic microaggressions. Discrimination was regularly reported as a prominent reason to avoid seeking healthcare. This result confirms previous research that demonstrated how discrimination caused healthcare use to be postponed, sought only during an emergency or avoided altogether (Glick et al., 2018; Jaffee et al., 2016 Kcomt et al., 2020). Transgender women denied healthcare services were more likely to delay care and have adverse health outcomes (Glick et al., 2018; Seelman et al., 2017).

Another structural barrier was the inability to update medical records with one’s preferred name, gender identity and pronouns. Electronic medical records are often restricted to biological sex, leading to misgendering (Scheim et al., 2020; Sokkary et al., 2021). Participants noted difficulties in updating their information with health insurers and health facilities, which caused constant misgendering. Difficulty updating health records reflected both structural and economic barriers following a legal or social name change (Sokkary et al., 2021). Intervention is needed to ease the bureaucratic burden of changing non-affirming personal information to prevent adverse psychological effects and promote healthcare utilisation (Scheim et al., 2020).

Implications

This study strengthens the findings of a growing body of scholarship highlighting the need for gender-affirming provider education and targeted external interventions to improve healthcare access and use for transgender women (Bakko and Kattari, 2021; Kachen and Pharr, 2020; Reisner et al., 2021). Transgender-inclusive environments should be created within the US healthcare system to reduce discrimination. Furthermore, transgender women have unique healthcare needs related to their affirming transition and require competent care (Patterson et al., 2020). All the participants in this study shared experiences of denial of care, misgendering and discrimination based on their gender identity. In addition to patient-provider barriers, problems with healthcare insurance, regulation and policies must be addressed in future scholarship and interventions. LAC is a progressive part of the USA, and these results would likely be exacerbated in a less progressive city.

Participants explained that healthcare access and utilisation were challenging due to healthcare provider insensitivity and cultural incompetence (Korpaisarn and Safer, 2018). Most medical school students report receiving less than 2 hours of gender-affirming education (Dubin et al., 2018). Thus, there is a pressing need for transgender-focused curricula in medical and other health professional schools. Such curricula should address the unique social, medical and clinical problems faced by transgender people, such as (1) health disparities including physical and mental health risks and health-related behaviours that disproportionately impact gender diverse populations (Patterson et al., 2020); (2) determinants that influence the health of gender minorities (Schneider et al., 2019); (3) psychosocial considerations (ie. transactional and survival sex, passability, self-acceptance, and substance use) (Smalley et al., 2017); (4) sexual identity disclosure, transitioning, and importance of space (Patterson et al., 2020); (5) health considerations of gender-affirming care including intersex genital surgery and transgender-affirming surgery (Pan and Honig, 2018; Schneider et al., 2019); (6) endocrinological components to better understand the impact and outcomes of hormone replacement therapy and gender-affirming surgeries (Schneider et al., 2019); and (7) social considerations, such as terminology, communication and the creation and development of welcoming spaces (Austin et al., 2020).

It is important that the suggested curriculum modules are not amalgamated with health issues affecting sexual minorities but should instead be separated based on different types of gender identities. For post-graduate healthcare providers, continuing education credits for the suggested modules should be encouraged. There is also a need to train office staff, technicians and administrators to offer a welcoming environment and generate feelings of safety in healthcare spaces. Skills development and competent care are essential tools for addressing transgender health inequities.

Study limitations

This study had limitations in terms of sampling and sample size, generalisability, geographical area of recruitment and recall bias. First, generalisability is limited since the results stem from a sample recruited through purposive sampling. The results from this qualitative study does not represent the entire community of transgender women. Only participants who resided in LAC were included; thus, the findings cannot be generalised to other areas within the USA. Finally, while participants reported answering as honestly as possible, their recollection of events may not have been entirely accurate. Despite these limitations, this study provides an improved understanding of transgender women’s experiences in the healthcare settings and carries major implications for policy and future interventions.