Perceptions of Barriers to and Facilitators of Participation in Transgender Health Research
transgender, research participation
Background/Aims: Research regarding the health of transgender and gender-nonconforming (T/GNC) individuals and, moreover, methodological considerations for recruitment of this population, is scarce. As part of a larger effort to understand the feasibility of developing a cohort study to examine long-term health outcomes of hormonal therapy, we conducted focus group discussions to qualitatively explore attitudes toward health research involving T/GNC individuals. Specifically, we aimed to explore the potential facilitators and barriers to recruitment and enrollment and to identify points of influence that would aid future recruitment.
Methods: Data were drawn from 12 in-person focus group discussions with 75 self-identified T/GNC men and women in Atlanta (n = 37) and San Francisco Bay Area (n = 38). Discussions were stratified by gender and project site and were audio-recorded. The resulting transcripts were then reviewed for potential conceptual categories using the focus group discussion questions as initial categories. Emergent themes were identified based on both recurrence and similarities/differences noted across transcripts.
Results: Preliminary analyses suggest that individuals who identify as T/GNC experience several barriers to research participation. These include: 1) being unaware of the research, 2) having transportation and financial challenges, 3) believing that the research questions are irrelevant to the lives of T/GNC individuals, and 4) feeling distrustful of the medical and research community. Suggestions for how to improve research participation by individuals in the T/GNC community include: 1) recruiting in diverse community-based locations using face-to-face referral/snowball-based methods; 2) scheduling research visits in locations accessible via public transportation and offering a variety of days/times to accommodate personal and professional responsibilities; 3) providing incentives including cash/gift cards, food and free/discounted health services; and 4) prioritizing transparency regarding the research questions and how the results will benefit the T/GNC community. Additional analyses of the transcripts using MAXQDA software will be conducted prior to the conference.
Conclusion: T/GNC individuals form a sizeable, unique and underserved community. Understanding the barriers and facilitators of successful enrollment and retention in research studies is critical to addressing health disparities experienced by this community. Results from these analyses will help to identify points of influence that would aid recruitment of T/GNC individuals into future observational studies and intervention trials.
Owen-Smith AA, Woodyatt C, Sineath RC, Hunkeler E, Barnwell L, Graham A, Goodman M. Perceptions of barriers to and facilitators of participation in transgender health research. J Patient Cent Res Rev. 2016;3:196.