"I don't like fitting a box, except the box I am": genderqueer and nonbinary (GQNB) patient strategies for navigating...

While genderqueer and nonbinary (GQNB) people comprise a significant percentage of the transgender community, very little research has explored the unique experiences and needs of GQNB patients. A critical challenge faced by GQNB patients is the degree to which health systems operate inside of a gender binary-as evidenced by the design of health technologies, organizational policies, and culture. Understanding how GQNB patients navigate health systems as they currently exist may give us insight into how to improve the design of those systems. This study aimed to identify GQNB patient strategies for navigating care.

As part of the TRANS-SAFE study aimed at identifying system contributors to psychosocial safety of transgender and nonbinary patients, we conducted semi-structured interviews with GQNB patients (n = 21) and clinicians who care for GQNB patients (n = 23). We performed a deductive content analysis of the transcripts, applying a Human Factors Engineering-based work system model-The Systems Engineering Initiative for Patient Safety 2.0-and then reviewed coded excerpts to identify patient strategies, defined as "any dynamic response to perceived work system barriers to, or facilitators of, timely and effective performance of effortful work activities in pursuit of the patient's health goals." Strategies were summarized and grouped by "type" and "purpose" through an iterative, team-based process and work system barriers for each strategy were identified.

We identified four types of strategies that GQNB patients employed. These strategies included (1) "satisficing" (i.e., accepting a solution, even if unideal, that sufficiently satisfies one's minimum requirements) around care, (2) leveraging tools/technologies or GQNB community expertise, (3) adjusting their behavior, and (4) taking ownership of their care. GQNB patients used strategies for five different purposes: (A) accessing care, (B) interacting with the health system broadly, (C) interacting with clinicians, (D) navigating clinical settings, and (E) interacting with the EHR.

GQNB patients use a variety of strategies to ensure they receive appropriate and affirming care. These strategies point to the goals and needs of GQNB patients, yet primarily represent an attempt to receive the bare minimum in person-centered care. In fact, these strategies characterize patient work that is harmfully burdensome for this population. Studying the strategies leveraged by GQNB patients gives us insight into how we might improve health care for all patients.