“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

Transgender and nonbinary (TNB) individuals face disparities in nearly every aspect of health. One factor associated with poor health outcomes in other marginalized populations is health literacy, yet no identified studies examine health literacy in TNB samples. Moreover, most health literacy frameworks focus primarily on the capacities of individual patients to understand and use healthcare information, with little attention given to provider literacy and environmental factors. In partnership with a statewide LGBTQ advocacy organization, we recruited 46 transgender and nonbinary individuals to participate in seven focus groups conducted in urban, suburban, and rural locations throughout Colorado. TNB participants consistently engaged in efforts to increase their own health literacy and that of their medical providers yet faced multiple barriers to improve care. Difficulty identifying and physically reaching care, insurance and out-of-pocket expenses, negative experiences with healthcare providers and staff, provider incompetence, discriminatory and oppressive practices, and exclusionary forms and processes emerged as barriers to enacted health literacy among participants. Conversely, facilitators of enacted healthcare literacy included positive experiences with healthcare providers and staff, and inclusive forms and processes.

Barriers reported by nonbinary adults when accessing gender-affirming medical treatments: A systematic scoping literature review.

“…We found 23 studies that all suggest that many nonbinary adults struggle to access gender-affirming medical treatment due to their health care providers lacking sound knowledge and understanding of nonbinary gender identities. Many nonbinary participants reported that they were unable to find a health care provider with the expertise or willingness to readily prescribe them treatment (Burchell et al, 2023; Costa et al, 2018; Goldbach, 2023; Harrison, 2022; Hostetter et al, 2022; Long, 2019; Matsuno et al, 2022; Mills et al, 2023; Singh et al, 2014; Tristani-Friouzi et al, 2021, 2022). Some nonbinary participants reported that their health care providers assumed that gender-affirming medical treatments should only be accessed by those who wish to transition to affirm an exclusively male or female gender identity (Cleary et al, 2015; Fraser et al, 2021; Lykens et al, 2018; Puckett et al, 2018; Taylor et al, 2019; Wylie, 2022).…”

“…As a result of many health care providers lacking adequate knowledge, understanding, and social acceptance of the nonbinary community, nine studies showed that many nonbinary adults felt pressured to identify as a transgender man or woman in order to access treatment (Czimbalmos & Rask, 2022; Ellis et al, 2015; Fraser et al, 2021; Haire et al, 2021; Hostetter et al, 2022; Kidd, 2020; Lykens et al, 2018; Mills et al, 2023; Pultz & Goldfinger, 2020). The pressure for nonbinary adults to transition to a binary gender was therefore the fourth reported barrier to treatment, as it prevented nonbinary adults from obtaining the appropriate transition-related care they needed to affirm their genders.…”

“…Third, it should be noted that we did not chart data on the facilitators to gender-affirming treatments reported by nonbinary adults (i.e., the factors nonbinary adults report that enable them to readily access treatment). Some studies examined in this review reported cases of nonbinary participants having positive health care experiences when accessing treatment, including having friends, family, and health care providers who were supportive of them medically affirming their gender identities (see Baldwin et al, 2018; Hostetter et al, 2022). Future research should investigate facilitators and the factors that give rise to facilitation, rather than barriers to treatment.…”

Navigating secondary school: A perspective from trans and non‐binary activists

“…Indeed, TNB youth engage in multiple ways to promote social change. For example, as clients and patients, they strive to advocate not only for their rights related to gender‐affirming procedures but also within the entire health system (Hostetter et al, 2022). Additionally, they participate in community building by joining local TNB‐focused support groups and creating affirming spaces (Lindley & Budge, 2022).…”

Transgender Patient Preferences When Discussing Gender in Health Care Settings

“…Although gender-affirming health care improves the well-being of transgender (trans) individuals (ie, transgender, nonbinary, those with culturally specific identities, and others), trans patients continue to report frequent discriminatory and unskilled treatment in health care spaces. 1 , 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 These experiences are associated with suicidality, substance use, and other negative outcomes. 10 , 11 , 12 , 13 Consequently, trans patients sometimes withhold gender-related information to avoid discrimination.…”