"We Are Doing the Absolute Most That We Can, and No One Is Listening:" a Qualitative Exploration of the Barriers and Facilitators to Enacted Health Literacy in a Statewide Sample of Transgender and Non-Binary Individuals

Background and Purpose: Transgender and non-binary individuals (TNB) 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 health care information, with little attention given to provider literacy and environmental factors. The capabilities approach, popularized by Sen in the field of economics, offers a helpful framework for conceptualizing patient capabilities (e.g. knowledge, skills) and the material and institutional environment (e.g. provider knowledge, insurance coverage) as two interacting components of the “functioning” of health literacy for TNB. Using the capabilities framework, this study pursued the following question: What elements of the institutional and material environment serve as barriers or facilitators to health literacy capabilities among TNB individuals in the state of Colorado.

Methods: In partnership with a statewide LGBTQ advocacy organization, we recruited 46 transgender and non-binary individuals to participate in seven focus groups conducted in urban, suburban, and rural locations throughout Colorado. Participants ranged in age from 19 to 72 years (M=39.52, SD=16.60) and 34 identified as White or Caucasian, 5 as multiracial, 3 as Hispanic, 3 as Asian, and 1 as Native American. Focus groups lasted approximately 90 minutes and were facilitated by faculty and doctoral/masters-level social work students. Focus groups were audio-recorded and transcribed by masters-level student research assistants. A team of faculty and student research assistants then coded the transcripts for themes using deductive content analysis based on focus group topic areas.

Results: Access to TNB health information, identification of competent medical providers, costs of medical care, and provider location each emerged as both barriers and facilitators of enacted health literacy among participants. Many participants reported finding health information online yet described a lack of any standardized information related to gender-affirming medicine (e.g. hormone therapy) or treating other health conditions in the context of gender-affirming care. Additionally, although some participants reported adequate medical insurance coverage, many stated that they were required to spend thousands each year on out-of-pocket medical expenses to access appropriate care, some of which was only available out of state. Those without access to gender-affirming care due to location, financial struggles, or lack of information, described consistently needing to educate their medical providers about TNB health issues and frequently experienced microaggressions in the health care environment.

Conclusions and Implications: TNB consistently engage in efforts to increase their own health literacy and that of their medical providers, yet face multiple barriers enacting high levels of health literacy to improve care. Participants suggested that a state-wide compendium of competent health care providers, increased insurance coverage, and continued research on TNB medicine would benefit health care access. Social workers should conduct ongoing research on TNB health literacy, as well as advocate for policies that mandate gender-affirming provider trainings, remove financial barriers to care, and improve access to health care.