Designing a Better Health System: Patient Perspectives on Gender Inclusive Care

Abstract

Our study explored perspectives of transgender and non-binary (TNB) patients regarding gender-inclusive care at our medical center. Thirty participants (13-21 years old) completed semi-structured interviews and demographic surveys. Surveys were analyzed using descriptive statistics, and interviews were analyzed using thematic analysis. Key themes contributing to positive experiences were: (1) personnel with experience caring for TNB youth, (2) Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual (LGBTQIA) identified health care team members, (3) visible improvements made over time, (4) provider and staff advocacy, and (5) parent advocacy. Areas for improvement were: (1) training on use of pronouns, gender-affirming terminology, and exam techniques, (2) accurate display of name and pronouns in the electronic medical record and patient labels throughout clinical settings, and (3) more LGBTQIA-inclusive décor and resources. While improvements were recognized, participants identified persistent gaps. Multilevel advocacy and standards set by accrediting bodies can be the next steps in ensuring quality care for TNB patients.

Introduction

Numerous studies have shown transgender adolescents and young adults experience higher rates of anxiety, depression, suicidality, and poor general health compared to their cisgender peers.^1-3 However, there is growing evidence that youth who are well-supported in their transition have comparable health outcomes to the general population, suggesting these health disparities are both preventable and in part due to stigma and discrimination.^4-6 In 2009 and 2011, national surveys on transgender discrimination found a significant percent of adult respondents reported experiencing outright refusal of care due to their gender identity. In addition, respondents reported harassment in the medical setting, which resulted in delays in seeking medical care.^7,8 Even more recently, a 2020 study showed transgender and non-binary (TNB) adults continue to postpone or avoid needed medical care for fear of discrimination. ⁹ These data suggest that stigma and fear of mistreatment in the medical setting remain pervasive.

To address issues of health care discrimination, organizations such as Lambda Legal, the Human Rights Campaign, and the American Academy of Pediatrics published guidelines with specific recommendations to help medical centers create gender-affirming environments of care.^10,11 These guidelines center on amending nondiscrimination and patient privacy policies to clearly include transgender individuals, providing resources and displaying signage related to Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual (LGBTQIA) health issues, training staff to address transgender patients respectfully, ensuring access to hormonal therapy, instituting trans-affirming environments such as private inpatient rooms and all-gender restrooms, and standardizing collection and display of gender identity data in the electronic medical record (EMR) to be inclusive and protective against misgendering. While some state and federal policies were created to protect individuals from discrimination based on gender identity, newer legislation may be reversing these activities.^12-17 Thus, gaining a deeper understanding of the needs and gaps in care for this population is essential.

Much of the research on the health care experiences of TNB patients comes from adult populations. It is not well-understood how and if the recommended policies have been instituted in the pediatric setting. Furthermore, we do not know if these policies align with what adolescent and young adults’ value, and whether additional changes are needed to improve the experience of these youth when seeking care. In this qualitative study, our objective was to examine this gap by eliciting adolescent and young adult perspectives on their health care experiences at our medical center and to identify positive factors and areas for improvement that can be leveraged to promote higher quality, more inclusive health care.

Methods

Study Design

We conducted a qualitative study using semi-structured interviews to explore TNB youth and young adults’ perspectives on the state of gender-affirming care at our medical center. Individual interviews were chosen to preserve the privacy and safety of our participants. Due to the COVID-19 pandemic, these interviews were conducted virtually using the HIPAA-protected Zoom platform. This study was approved by the UC San Diego Institutional Review Board.

Setting and Participants

From April to December 2021, participants were recruited from the Center for Gender Affirming Care (CGAC) at a large academic children’s medical center. Our medical center is the sole children’s health center for approximately 900 000 children in San Diego County and the surrounding region. Patients attending this clinic were informed of this study via informational flyers distributed in the clinic or via the EMR. Adolescents and young adults who met the following inclusion criteria were eligible to participate in this study: (1) self-identifying as transgender or non-binary; (2) between 13 and 26 years of age; (3) received medical care at our medical center; and (4) were English or Spanish speaking. The study team used purposive, non-probability sampling to ensure perspectives represented a wide range of age, race and ethnicity, gender identity, and experience with different departments at our medical center. ¹⁸ Written informed consent was obtained from all adult participants and the parents or legal guardians of minors, while written informed assent was obtained from participants aged 17 years or younger.

Data Collection

The research team used a semi-structured interview guide, with prompts developed based on existing guidelines from national pediatric and transgender rights organizations.^10,11 Questions were developed to obtain feedback regarding these recommendations and information about the patient’s experiences within the medical center. We included the following sites of interest: primary care clinics, subspecialty clinics, emergency department, surgery center, occupational and physical therapy, laboratory, radiology, inpatient unit, and psychiatric unit. The interview guide prompted participants to reflect generally about their care at the medical center, and then more specifically about their experiences with administrative processes, physical surroundings, and health care personnel they had encountered at varying sites within our center (Supplemental Figure 1).

All interviews were conducted virtually using a secure video communication platform and lasted 45 to 60 minutes. All interviews were audio-recorded, and then transcribed using a professional transcription service. Each participant also completed a short demographic questionnaire. Participants received a $25 gift card for their time. Interviews were concluded once the team reached thematic saturation, where no new major themes were identified.^19,20

Data Analysis

Interviews were deidentified and transcribed verbatim. ATLAS.ti was used for analysis. Two primary coders (D.Y. and T.L.R.) independently coded all transcripts using inductive thematic analysis. ²¹ Thematic analysis involves three major steps: (1) immersion in the data; (2) identification of codes and organization into themes; and (3) reviewing of the themes to identify structures. ¹⁹ The members met weekly to review all transcripts, develop and revise the codebook, and reach consensus on any coding discrepancies. The larger team (D.J.I.B., M.M., B.M.K., A.P., E.S.F., L.G., and K.E.R.) reviewed coding applications, categories, and themes for validation. The research team was comprised of physicians experienced in qualitative research, members of the LGBTQIA community, and providers of medical and mental health care for TNB youth and young adults. Participants were invited to review the themes through member check to ensure accurate representation of their perspectives. ²² Participants who elected to review study findings received an e-mail with a summary of major themes and an invitation to respond. Descriptive statistics were used to analyze demographic/survey data.

Results

Participant Characteristics

We interviewed 30 TNB youth and young adults, all of whom were English-speaking.

Although Spanish-speaking participants met the inclusion criteria, all participants preferred English for their interviews. The mean age was 17 years old (SD = 2.5). Just under half (46%) self-identified as white or Caucasian; the most reported gender identity was male or transmale (47%) (Table 1). In addition to receiving care at CGAC, the majority of participants received care within our medical center at another outpatient subspecialty (73%) or received services via our laboratory (90%). Importantly, over half had utilized our emergency department (57%).

Table 1.

Demographics of Transgender and Non-Binary Participants in Virtual Interviews.

Age of Participants	N = 30 (%)
13-17 years	14 (47)
18-21 years	16 (53)
Race and Ethnicity a
White or Caucasian	14 (46)
Hispanic, Latino, or Spanish Origin	5 (17)
Two or more ethnicities or races	6 (20)
Asian	2 (7)
Black or African American	2 (7)
Prefer not to say	1 (3)
American Indian or Alaskan Native	0 (0)
Other	0 (0)
Gender Identity
Female or transfemale	9 (30)
Male or transmale	14 (47)
Non-binary	4 (13)
Gender fluid	3 (10)
Genderqueer or gender non-conforming	0 (0)
Other	0 (0)
Locations Within the Hospital Where Participants Have Received Care b
Medical and/or surgical inpatient units	12 (40)
Psychiatric unit	10 (33)
Emergency room	17 (57)
Outpatient subspecialist clinic(s) other than the Center for Gender Affirming Care	22 (73)
Outpatient primary care clinic	13 (43)
Same-day surgery	10 (33)
Laboratory	27 (90)
Radiology	16 (53)
Physical, occupational, or speech therapy	5 (17)

^aParticipants who selected 2 or more groups were represented in “Two or more ethnicities or races.”

^bTotal percentage exceeds 100% due to the selection of multiple options by participants.

Themes

Factors promoting positive experiences

Fives themes emerged as common factors promoting positive experiences within the medical center (Figure 1). Two were related to personnel and three were actions.

Figure 1.

Major themes of factors promoting positive experiences as transgender and non-binary patients receiving care.

Personnel

Providers and staff with experience caring for TNB youth

Having providers with experience caring for TNB youth was frequently cited as a factor related to positive experiences at the medical center. This was particularly evident within the CGAC where participants identified feeling understood and a sense of belonging with the providers:

I do really appreciate that he. . .works with trans patients . . . like I feel a lot more comfortable and it’s less treating me like an exception.

. . . I personally have worked with Dr. X. And she’s always been super aware of our feelings and . . . what we’re going through . . . I feel like all of . . . the specialty doctors in the gender clinic . . . have gone through . . . that training and know . . . who they’re dealing with and so they . . . provide that special care.

This was experienced in other areas of our health care system, with both physician and non-physician health care team members. Notably, compared to other local medical centers or hospitals, participants had more confidence in their care at our medical center because of the experienced health care team members:

It seemed clear to me that . . . she [speech therapist] had . . . talked to trans people before, like, knew trans people, and . . . she didn’t . . . seem taken aback.

. . . the [inpatient psychiatric] staff . . . all referred [to] you as your pronouns and everything and they’re super nice . . .

It’s a lot better at [this medical center]. I feel a lot more . . . catered to and I feel that there are more trans patients . . . than there are through [outside medical center].

LGBTQIA representation in the health care team

Participants valued having LGBTQIA-identifying providers and/or staff members on their health care team. This further contributed to the creation of a safe environment in which to receive care:

She was a non-binary doctor, which made me . . . super happy to see that there’s more people in that field of work also in the LGBTQIA community.

Like I can tell they care, and especially since they are . . . gender queer themselves that it adds this level of safety . . . they know what I’m going through. And they’ve gone through it.

Actions

Visible improvements made over time

Patients who have received care at the medical center for years cited that witnessing improvements over time shaped positive experiences. Improvements were attributed to co-occurring societal changes, but also as intentional, ranging from physical facilities to EMR upgrades:

It’s definitely gotten a lot better over the years . . . I think because our society has kind of progressed, the hospitals have put in more work because of that . . .

I do think I’ve noticed in the computer system . . . a thing that says . . . preferred name and preferred this so that they . . . see that beforehand, before they read out your stuff.

I remember when I was really young seeing the girls and boy’s bathroom . . . Now [gender neutral bathrooms are] way more common now.

Staff and provider advocacy

Participants cited instances where staff and provider advocacy had a positive impact on the experience of their medical care. This ranged from correcting staff or patients who had misgendered someone to educating family members on gender development and common issues for TNB youth:

There was a patient there who is nonbinary and . . . misgendered. And you know, one of the staff members corrected the other patient . . . who misgendered them . . . Like, this patient isn’t a girl and, you know, I’m sure they appreciated that. To know that . . . if another patient misgendered me . . . I would also be treated that way . . . stood up for.

The way that they like explained the connection between using the correct pronouns and name and the mental health of the patient to my mother . . . they gave her a book . . . to read so she could learn more about like transgender youth. Just the way that they handled it . . . made me feel a lot more comfortable.

Parent advocacy

Parent and guardian advocacy was crucial to positive experiences at the medical center. Advocacy ranged from ensuring TNB youth were addressed using the correct name and pronouns to navigating insurance and medical care:

My mom’s very quick to . . . correct them, like even in emails. Like if someone misgenders me . . . she’ll be like “my child uses she, her, please respect that” . . . It’s easier when I don’t have to do it because I’m like a kid and a lot of times kids won’t be respected ’cause they think we’re just doing it for like a trend.

Um, when I first came out, my mom was trying to help me find out like what we could do ’cause we were very like new to it, both of us. . . . She found a website that referred us to the Gender Clinic.

Areas for Improvement

Participants identified areas for improvement that fit 3 large domains: Health Systems, Environment, and Personnel Education and Training (Figure 2).

Figure 2.

Areas of improvement for transgender and non-binary patient care noted by participants.

Systems

Many participants desired more reliable and accurate display of personal information across the health system, from the EMR through all other patient identifiers including wristbands. At the time of the study, even if the affirmed name, gender identity, and pronouns were updated in the EMR, wristbands or labels displayed the previous or legal name and sex assigned at birth gender markers. Participants also wanted standardized check-in processes across all clinical environments; they noted outside of CGAC, these processes were highly variable, particularly in the collection of affirmed name, gender identity, and pronouns. They preferred collecting gender via a self-report form rather than verbally to ensure privacy:

It’s just sometimes, sometimes it doesn’t show up or they don’t see that name first. So, they call me by my birth name.

[Wristbands] would have both first names on there. So, I would like specifically turn it a certain way, so, I couldn’t see the deadname . . . I kind of wish it was . . . like the last name or the preferred first name, the last name, and like a number. Um, ’cause I feel like it’s redundant to put what name you go by, but then . . . put the name that you don’t.

I think there should just be a form everywhere. Look, the only place I know that has a form of like “what are your name and pronouns” is the gender clinic and I think there should be a form just, like, everywhere, on all sides of the hospital. Like “what are your preferred name and pronouns?”

Environment

Many participants felt more LGBTQIA-inclusive symbols, artwork, and décor in clinical environments would help TNB youth feel seen and safe. Pride flags were most commonly suggested; however, some suggested the addition of clear and inclusive language in art and signage. Participants also suggested posting general information about gender identity and development, access to gender-affirming care, and LGBTQIA-specific national and community resources (ie, Trevor Project, local LGBTQIA center, and social groups) in high-traffic areas such as waiting rooms:

. . . the rainbow is kind of a, you know, obvious one, but having anything with the trans flag is also really good because it’s sort of like that step up from just like surface level, oh, you know, I support gay people. It’s like, okay, there’s also more to the community than just gay people.

I see teachers put up stuff, that’s like, you know, “all races, all religions, people of any gender identity, people of any sexuality are welcome here” . . . If I were to see that in a hospital setting, that would make me think, “Okay, I’m welcome here.”

I think just like something nice that like describes like sexual orientation, and gender expression, and how like it is fluid and things change. And like just like someone could like pick it up and read it for a bit and then like learn something.

Personnel education and training

While staff and providers were generally regarded as respectful and knowledgeable in caring for TNB youth, participants suggested providers receive more training on gender-affirming and trauma-informed exam techniques and terminology:

Well, I guess the most important thing is, like, sympathy and empathy, right? Remembering that certain things are really likely to make trans patients uncomfortable. Just kind of listen to what trans people have to say about that kind of thing . . . educate yourself on . . . what kind of procedures might make someone potentially feel really dysphoric if it goes on for too long or if you say certain things.

I always just prefer “chest.” So, if they were to ask me like . . . if they were to say, “Oh, yeah, and we’re gonna examine your chest now” instead of “we’re going to examine your breasts now.” I feel like just small things like that could help.

Many participants also recommended staff and providers be more proactive in sharing their own pronouns during introductions as a way to make it easier for patients to feel comfortable sharing theirs:

I would probably . . . when you introduce yourself to a doctor or a nurse, have both the patient and the nurse say their pronouns and their preferred name because it makes it a lot more . . . comfortable and normal.

Discussion

In our study, we found that participants identified staff experience and visible systems changes as positive but also noted gaps in each area that are critical to address for creating an optimal and inclusive environment for this population. Some improvements can be achieved through structural building changes and hiring practices that embrace staff with personal or work experience with TNB youth. However, our study highlights the need to train and engage all staff actively to create a culture of inclusivity. A best practice system could not only support but also expect corrective and educational actions to be conducted in a sensitive and respectful manner for all involved.

Our participants desired changes similar to the recommendations of several national organizations. Lambda Legal and the Human Rights Campaign advocate for systems changes within admitting/registration records and EMRs to ensure patients are addressed by their affirmed name and pronouns. ¹⁰ Multiple participants recounted experiences where inconsistent display of affirmed name led to misnaming or misgendering and expressed a desire for standardized collection and display of name and pronouns throughout the hospital. The AAP recommends displaying resources (ie, flyers or posters) on LGBTQIA health issues in clinical settings to promote inclusivity and awareness. ¹¹ Similarly, our participants desired more inclusive language, creative artwork, and health and peer support resources in common spaces around the medical center, not just in the CGAC. Our findings confirm that youth and young adults value what is proposed by national adult and pediatric organizations.

Participants suggested more comprehensive changes in staff education than the use of correct name and pronoun. Several participants recommended staff become familiar with and use gender-affirming terminology, especially during exams (eg, “chest” instead of “breasts”). Qualitative studies conducted with adult participants who identify as TNB similarly report a preference for the use of gender-neutral terminology.^23,24 In addition, some participants called for trauma-informed approaches to patient encounters, especially during sensitive exams. This supports the need for ongoing needs assessments while improvements are made.

At the time of this study, several states across the United States introduced harmful legislation restricting health care professionals from providing or referring minor patients to gender-affirming medical care, restricting access to school restrooms that align with students’ gender identity, and banning transgender youth from participation in sports.^15-17 A recent poll conducted by The Trevor Project found that 85% of TNB youth report anti-transgender legislation has impacted their mental health negatively. ²⁵ Many of the participants regarded our medical center as a safe haven to be treated knowledgeably and respectfully by personnel, especially compared to neighboring community hospitals. In the wake of this legislation restricting both minors and medical care providers, children’s hospitals are in a unique position to model and advocate locally, regionally, and nationally for gender-affirming care. In addition to systems and environmental changes, our participants valued health care personnel who are not only familiar with care for LGBTQIA patients but also identify as part of the community. Emphasis on recruitment and retention of LGBTQIA-identifying staff and providers and seeking participation in public benchmark tools, such as the Human Rights Campaign’s Healthcare Equality Index, can demonstrate institutional commitment to patient and employee equity and inclusion.^26,27

Federal agencies and national accrediting bodies can also play a more substantial role in ensuring inclusive care for TNB patients. In 2011, the Joint Commission released a “field guide” on patient and family-centered care for the LGBTQIA community. ²⁸ In 2015, the Centers for Medicare & Medicaid Services (CMS) began requiring EMR software certified under stage 3 of Meaningful Use program to allow for the collection of sexual orientation and gender identity data with the intent to improve LGBTQIA patient health. ²⁹ However, the impact of these tools is not known as institutions are not required to report on use. A next step for these organizations could be to transform guidelines into standards and mandatory reporting of adoption.

Finally, our participants cited advocacy by their parents as a key positive factor. Parent involvement in navigating the health care system and serving as a protective guardian to ensure respectful interactions between providers/staff and patient was important to participants. We know from other populations that patient and family empowerment and engagement in system improvements have been critical in the effort to institute change in the health care system.^30,31 In fact, programs teaching parents to be advocates exist even at the preschool level, such as those offered by the Head Start Program. ³² Research within the transgender and gender-diverse youth population has consistently identified parental and family support as a key protective factor for mental health.^33,34 In response, family-based interventions have been designed to support and educate caregivers and connect them with tools for allyship and advocacy.^35-37 Forming a trusted triadic relationship between provider, caregiver, and adolescent can create a more impactful and coordinated alliance to impact change. ³⁸ Bolstering parents’ ability to advocate for their TNB child should be included in a given health system’s strategic planning for their program, in addition to partnering with community advocacy groups where possible.

While several of the findings confirmed recommendations by national organizations, we acknowledge the limitations of our study. It was conducted at a single tertiary center with an embedded gender affirming care center in a state with relatively more LGBTQIA-focused legal protections. Therefore, our findings may be less generalizable to other regions of the United States. Participation in the study was voluntary; thus, experiences may differ from those who chose not to participate. Our study utilized purposive sampling to ensure experiences from transfeminine, non-binary, and black, indigenous, and people of color (BIPOC) populations were represented; however, the sample size is too small to conclude specific findings in subpopulations.

Conclusion

The TNB adolescents and young adults desire similar changes to the health care system to make an environment that would truly engage and promote health for this population. Many of these attributes are also advocated by national pediatric and LGBTQIA organizations. While there have been improvements over time in provider knowledge and experience, the health care facility, and the local EMR, application is still generally centralized in gender-affirming care (GAC)-specific environments and/or with GAC-aware staff. Standardization across clinical settings and trauma-informed training remain deficient. Medical centers have an important role to play in advocacy for TNB youth and in conducting their own needs assessments to align their policies with existing national guidelines and benchmark tools.

Author Contributions

All authors critically revised the manuscript, gave final approval, and agree to be accountable for all aspects of work ensuring integrity and accuracy. Additionally: DY contributed to conception, design, acquisition analysis, interpretation, and drafted the manuscript. DJIB and KER contributed to conception, design, and interpretation. TLR contributed to acquisition, analysis, and interpretation. MM and BMK contributed to conception, design, and interpretation. AP, ESF, and LG contributed to conception and design.