Improving Trans-Affirming Primary Care for Patients with Eating Disorders: Co-Design Strategies for Participant-Engaged Thematic Analysis

Background and Purpose: Eating disorders (EDs) are prevalent among trans and gender diverse (trans) adults and are associated with early serious health concerns and early mortality. Despite this, few primary care providers are both gender-affirming and knowledgeable about EDs, leaving most trans people to choose between ED-informed or trans-informed care. Further, existing ED screening and management guidance is informed by cis-normative assumptions, posing major challenges for the identification and treatment of ED among trans adults. This paper describes the use of human-centered design (HCD), a co-design method, to conduct thematic analysis for a qualitative study about the experiences of trans adults with eating disorders in primary care. Thematic analysis was based on five virtual focus groups (conducted February-April 2023, N=22). The objective was to co-create study findings with focus group participants to answer the research question, “How might we make trans-affirming primary care ED-informed?”

Methods: Select focus group participants (N=6), identifying as transmasc, transfemme, and nonbinary participated in three 90-minute HCD sessions using Zoom and MURAL. Participants were selected based on availability and interest in the co-design process and were offered a $25 e-gift card after each session. The researcher/facilitator led two HCD activities, affinity clustering and experience diagramming. Participants could view the MURAL board between sessions and were encouraged to engage in written reflection immediately prior to and after sessions.

Results: This process yielded recommendations for trans-affirming primary care practices to improve care for patients with EDs, emphasizing the importance of 1) coordinating with other providers (e.g., dieticians, mental health providers), 2) providing multiple opportunities for ED disclosure, 3) recognizing ED history as relevant to current health while not focusing on EDs at the expense of other concerns, 3) building trust through openness, transparency, ED knowledge, and patient advocacy, 4) creative and harm reduction approaches that acknowledge barriers to ED treatment and 5) avoiding assumptions about patients’ health needs due to body size or gender. Screenshots will illustrate the meaning-making process, and reflections from participants and facilitators about lessons learned will be discussed. Participants were highly engaged throughout the process, found the virtual platform easy to navigate, and enjoyed hearing the thought processes of other participants. Differing information processing styles presented challenges for participants, and steps were taken to accommodate participants’ individual learning styles.

Conclusion: Participants determined that challenging assumptions about health based on visual appearance and building trust over time was central to ED-informed care. Virtual HCD methods facilitated an accessible, collaborative approach to thematic analysis of focus group data, resulting in a nuanced set of recommendations that incorporates a diversity of ED experiences. HCD may be a promising alternative to traditional qualitative data analysis methods in which the researcher independently develops findings. Modifications of HCD activities may be needed to accommodate individual learning styles and ways of processing information.