“When the pain is so acute or if I think that I’m going to die”: Health care seeking behaviors and experiences of transgender and gender diverse people in an urban area

Introduction Approximately 1.4 million transgender and gender diverse (TGD) adults in the United States have unique health and health care needs, including anatomy-driven cancer screening. This study explored the general healthcare experiences of TGD people in the Washington, DC area, and cancer screening experiences in particular. Methods Twenty-one TGD people were recruited through word of mouth and Lesbian Gay Bisexual Transgender Queer (LGBTQ)-specific community events. Participant interviews were conducted and recorded via WebEx (n = 20; one interview failed to record). Interviews were transcribed using Rev.com. Two coders conducted line-by-line coding for emergent themes in NVivo 12, developed a codebook by consensus, and refined the codebook throughout the coding process. Member checking was conducted to ensure credibility of findings. Results Three major themes served as parent nodes: health-care seeking behaviors, quality care, and TGD-specific health care experiences. Within these parent nodes there were 14 child nodes and 4 grand-child nodes. Subthemes for health care seeking behaviors included coverage and costs of care, convenience, trust/mistrust of provider, and provider recommendations for screening. Subthemes for quality of care included professionalism, clinical competence in transgender care, care coordination, provider communication, and patient self-advocacy. Overall, transgender men were less satisfied with care than transgender women. Conclusions Results suggest a need for improved provider communication skills, including clear explanations of procedures and recommendations for appropriate screenings to TGD patients. Results also suggest a need for improved clinical knowledge and cultural competency. Respondents also wanted better care coordination and insurance navigation. Overall, these findings can inform health care improvements for TGD people.