More than a flag: Improving LGBTQ patient care through education, training, and access

Image Credit: AdobeStock/Nadzeya

An unassuming LGBTQ+ pride flag in the front desk window of an eye care practice in Battle Creek, Michigan, doesn’t get a lot of attention. But when patients notice, it tends to make a world of a difference, according to Matthew Johnson, OD.

He recalls an appointment booked with him by a same-sex couple who took to the small nods of inclusivity around the practice and in his office, including his pronouns and a rainbow emblem on his name tag. To them, it made all the difference in easing the stress that a medical appointment can bring for those in the LGBTQ community, Johnson said.

“They’re like, ‘This is one of the best eye exams. Thank you for having that flag. It meant so much to see that it’s OK here, it’s a safe place,’” Johnson said.

Including these markers of inclusivity can be a major step, especially for practices in smaller or more rural communities, Johnson said. “Having that flag in little Battle Creek was a big step. And there have been some comments, don’t get me wrong, but at the same time, it was just letting people know that…we’re inclusive to all folks,” he said. “It doesn’t matter who you are, what your background is. We’re making sure everybody knows they’re safe at our location.”

Medical care stressors

The initiatives to put LGBTQ patients at ease in the clinic come from significant health disparities that stem from negative experiences when seeking health care, including a lack of access and fear of discrimination, particularly in the case of transgender and gender-nonconforming patients, according to Marlee Spafford, OD, PhD, MSc, FAAO. A qualitative assessment of emergency care experiences found that almost 44% of study participants avoided the emergency department when they needed acute care.¹ Results from a Pakistani study found that the main barriers for transgender patients not receiving care were fear of discrimination, financial insecurity, lack of awareness, and verbal abuse. The prevalence of ocular findings in the study participants was 68.5%.²

Spafford said that deadnaming (referring to a transgender or gender-nonconforming person by their birth name or a name used before transitioning), misgendering by using pronouns that do not align with a patient’s gender identity, and assumptions made regarding the gender of a person’s spouse can create added stress and distrust from the patient. To avoid these occurrences, Spafford said properly training staff on referring to patients in non–gender-specific ways can reduce this stress for both practitioners and patients alike. “If the staff aren’t trained, there’s confusion, there’s stress,” she said.

Spafford also said that if a patient does not feel safe to disclose a preferred name, pronouns, or gender, they may also feel uncomfortable sharing a full medical history with their practitioner. “I’ve been in health appointments where I’ve been cut off when I’m trying to express myself, and very quickly, I shut down,” she said. “It’s a natural thing. Then the problem is we’re going to miss some important information.”

Additionally, LGBTQ patients enter medical offices having already experienced social stigmas and systematic stressors. In Spafford’s article “Queering Optometric Education,” coauthored with Paula S. McDowell, OD, FAAO, and Lillian Kalaczinski, OD, FAAO, the authors write that the social, systematic, and individual stressors stemming from sexual and gender identities already negatively affect the health of LGBTQ+ communities.³ Results from a study found that LGBTQ people experience minority stress, including discrimination, expectation of rejection, and prejudice-related life events, and that these stressors differ among queer men depending on intersecting identities such as race.⁴ This is based on the minority stress theory, which posits that minority groups experience stress stemming from discriminatory experiences, which places them at risk for negative physical and mental health outcomes.⁴

Vulnerabilities

Additionally, much remains to be uncovered in terms of ocular diseases and conditions that are more prevalent in the LGBTQ community. Spafford said that although research is limited, there can be adverse effects from hormone replacement therapy, such as dry eye disease.³ “Ocular surface disease can get better [or] it can get worse, depending on which hormone is being taken,” Spafford said. “And there seems to be some indication that some vascular changes are more likely in people who’ve taken gender-affirming hormones.” For instance, testosterone may improve ocular surface disease whereas estrogen may worsen the condition.³

Long-term gender-affirming hormone therapy in transgender women may also be linked to a higher risk of neuro-ophthalmic disease, cited in case reports of bilateral nonarteritic anterior ischemic neuropathy and postsurgical cerebral venous sinus thrombosis. Transgender women may also be more at risk for developing inflammatory conditions of the eye and ocular adnexa, such as uveitis and optic neuropathy, whereas transgender men may experience idiopathic intracranial hypertension, leading to papilledema and ocular motor dysfunction.³ Additionally, transgender patients may seek out gender-affirming facial surgical procedures such as an eyebrow lifting and hairline lowering that may affect ocular functions.³

Another condition that may be more prevalent in the LGBTQ community is poppers maculopathy. Poppers is a general term used to describe drugs that include volatile alkyl nitrites and are consumed by inhaling vapor. According to findings from a handful of studies, poppers are likely to be used at higher levels by gay men in addition to clubbing collectives.⁵ Results from a 2015 study in the United Kingdom found that 2.2% of users reported drug-related affection of visual function, with an additional 10% describing a potential effect of poppers use on their eyesight.⁵

Improving access

With roadblocks to care in mind, some eye care providers have taken on a mission of improving access to LGBTQ individuals and other underserved communities. Mojgan Besharat, OD, has taken on this work in the form of a call to action. In 2020, she founded In Her Vision, a mobile eye care service in North Carolina that aims to improve access for immigrant communities, low-income patients, women, and the LGBTQ community. In 4 years of operation, the program has performed more than 1200 comprehensive eye examinations and made more than 1100 pairs of glasses.⁶ Besharat said that in a 6-month period, In Her Vision aims for 4 events a month, with approximately 30 to 50 patients benefiting from the events.

Besharat said corrected refractive error can greatly improve quality of life and economic opportunity but often remains unobtainable for those who lack the resources. “When you’re trying to survive, trying to get food, and…trying to get shelter, the last thing that you’re going to do is get an eye exam,” she said. “Unfortunately, our sight is a huge factor in our ability to feel safe. So when there’s a lack of safety and…we are trying to survive, they’re almost at odds with each other.”

Besharat said the issue of safety and the role that eye care plays in keeping patients safe prove to be particularly true for the LGBTQ community, citing recent testimony from a transgender patient. “There’s such a lack of safety for some folks who are trans[gender individuals]. And to be able to see who’s coming at you before they get close enough to do you harm is such a profound thing,” Besharat said. “[As] this individual so aptly put it, to be able to have their glasses again meant that they could go out there and maybe find a better job and take other kinds of transportation and methods of getting to places that felt safe.”

Improving education and care

For those who own, manage, or work for a private practice, there are additional efforts that can be made to help foster a more inclusive experience for their patients. Johnson and Spafford said that omitting the terms wife or husband and replacing them with spouse and including a fill-in option for pronouns and preferred name on intake paperwork can help set the tone with patients. These options can be added to intake paperwork in a way that doesn’t populate under routing slips as well. Johnson also advised adding pronouns to staff name tags for visibility.

Spafford also noted that electronic medical records have the power to help or hurt regarding LGBTQ patients. Johnson said that his practice is currently working to put a flagging system in place to identify transgender patients so that staff can be up to date on pronouns and gender identity. Spafford said it is also important to check in with younger patients on any changes in gender or sexual identity since their past visit.

Spafford said that training staff remains vital to learn the language of inclusivity and reduce stress for both staff and patients. She said this training can start in colleges and schools of optometry and could be included as required education in the form of a competency. “What if the knowledge [about] looking after this community or these communities and the communication that goes with that were a competency?” Spafford said.

Strides to standardize this training are evident in initiatives led by those such as Alyssa Lancaster, OD, FAAO. During their time at the Illinois College of Optometry in Chicago, they worked to update intake forms to include pronouns and nongendered language. In their current work at the New England College of Optometry in Boston, Massachusetts, they founded People Respecting Inclusion, Diversity, and Equity of LGBTQ+ (PRIDE ODs) at the start of the COVID-19 pandemic. Lancaster said the advocacy group works to create an inclusive space for LGBTQ optometric students and raise awareness of LGBTQ issues in optometry through education, with the goal of establishing scholarships for LGBTQ optometry students and standardizing inclusivity training. “We are moving in the right directions, and there’s been so much progress in such a short time in so many different areas,” they said. Lancaster also said they have been working with the Association of Schools and Colleges of Optometry to further this standardization on the academic level.

PRIDE ODs’ Seeing in Color: Celebrating LGBTQIA+ Identities in Eye Care is the program’s second symposium addressing comprehensive LGBTQ eye care, taking place throughout the month of June. The event includes case-based approaches to LGBTQ care and lectures on intersectionality and care for transgender and gender-nonconforming patients. One of the lectures, given by Lancaster and Monica Nguyen, OD, FAAO, provides a CME opportunity for optometrists. Registration for the virtual symposium is now open and can be filled out on the PRIDE ODs website.

Ultimately, Lancaster said the goal is to reach equity of care for all patients, no matter how they identify. “You may not understand [everyone] sitting in front of you, but you should always respect their diversity and want to give equitable care to [everyone],” they said.

References:

1. Samuels EA, Tape C, Garber N, Bowman S, Choo EK. “Sometimes you feel like the freak show”: a qualitative assessment of emergency care experiences among transgender and gender-nonconforming patients. Ann Emerg Med. 2018;71(2):170-182.e1. doi:10.1016/j.annemergmed.2017.05.002

2. Javid A, Akram S, Batool A, Afghani T, Sehar GE, Manzoor H. Prevalence of ocular findings in transgender and barriers for not reporting to eye hospitals and clinics. Adv Ophthalmol Vis Syst. 2020;10(2):23-29. doi:10.15406/aovs.2020.10.00377

3. Spafford MM, McDowell PS, Kalaczinski L. Queering optometric education. Optom Educ. 2022;48(1).

4. McConnell EA, Janulis P, Phillips G II, Truong R, Birkett M. Multiple minority stress and LGBT community resilience among sexual minority men. Psychol Sex Orientat Gend Divers. 2018;5(1):1-12. doi:10.1037/sgd0000265

5. Hamann T, Wiest MRJ, Brinkmann M, et al. Assessment of the microvasculature in poppers maculopathy. Graefes Arch Clin Exp Ophthalmol. 2022;260(4):1299-1306. doi:10.1007/s00417-021-05453-0

6. What we do. In Her Vision. Accessed May 30, 2024. https://www.inhervision.org/what-we-do