"Sometimes You Feel Like the Freak Show": A Qualitative Assessment of Emergency Care Experiences Among Transgender and Gender-Nonconforming Patients

Study objective: Transgender, gender-variant, and intersex (trans) people have decreased access to care and poorer health outcomes compared with the general population. Little has been studied and documented about such patients' emergency department (ED) experiences and barriers to care. Using survey and qualitative research methods, this study aims to identify specific areas for improvement and generate testable hypotheses about the barriers and challenges for trans individuals needing acute care. Methods: A survey and 4 focus groups were conducted with trans individuals older than 18 years who had been to an ED in the last 5 years. Participants were recruited by trans e-mail listservs; outreach to local trans organizations; and lesbian, gay, bisexual, and transgender periodical advertisements. The interview guide was reviewed by qualitative research and trans health content experts. Deidentified participant demographic information was collected with a standardized instrument. All discussions were captured on digital audio recorders and professionally transcribed. Interview coding and thematic analysis were conducted with a grounded theory approach. Results: Among 32 participants, 71.9% were male identified and 78.1% were white. Nearly half (43.8%) reported avoiding the ED when they needed acute care. The factors that had the greatest influence on ED avoidance were fear of discrimination, length of wait, and negative previous experiences. There were 4 overarching discussion themes: system structure, care competency, discrimination and trauma, and avoidance of emergency care. Improvement recommendations focused on staff and provider training about gender and trans health, assurance of private gender identity disclosure, and accurate capture of sex, gender, and sexual orientation information in the electronic medical record. Conclusion: Efforts to improve trans ED experiences should focus on provider competency and communication training, electronic medical record modifications, and assurance of private means for gender disclosure. Future research directions include quantifying the frequency of care avoidance, the effect of avoidance on trans patient morbidity and mortality, and comparing ED patient outcomes by gender identity. Further research with increased inclusion of transwomen and people of color is needed to identify themes that may not have been raised in this preliminary investigation.