Twenty-eight individuals participated in all 4 focus groups with 11 (39.3%) participants in Boston and 17 (60.7%) in New York City (Table 1). Participants were a mean age of 33.9 years (SD 12.3; Range 18-66). Participants varied in gender identity with 4 (14.3%) being male, 3 (10.7%) female, 8 (28.6%) transgender male, 10 (35.7%) transgender female, and 3 (10.7%) nonbinary. Twelve (42.9%) were assigned male at birth and 16 (57.1%) were assigned female at birth. Eight (26.6%) participants were Latinx and/or Hispanic and 20 (71.4%) were not Latinx or Hispanic. Twelve (42.9%) participants were White, 5 (17.9%) Black, 3 (10.7%) Asian, 3 (10.7%) another race, and 5 (17.9%) multiracial.
Motivators/Facilitators to Participating in TGD Health Research
Participants discussed a variety of motivators/facilitators to participating in TGD health research projects.
Research creating community
Participants described that TGD health research can provide them the opportunity to connect with other TGD individuals, thus creating a community of participants. They felt motivated to participate in research in order to be part of this community (Table 2 Quote 1).
Research led by TGD-identified researchers
Many participants discussed wanting to participate in research that was led and facilitated by TGD researchers. They spoke of feeling more comfortable talking about sensitive topics, such as gender affirmation and transitioning, when the researchers were TGD themselves (Table 2 Quote 2). Participants wanted TGD individuals to be involved in all levels of the research enterprise, not just as CAB members – but as leaders and part of the team to plan and develop the study research questions and protocols, collect data, conduct and interpret analyses, and publish and disseminate findings (Table 2 Quote 3).
Another motivator/facilitator that participants frequently spoke about was receiving compensation (Table 2 Quote 4). Participants described monetary compensation such as gift cards or cash or their time. They also spoke of payment to compensating for costs occurred to participate, such as missing work or transportation costs and time. Participants indicated that larger incentives were necessary when the risks to participate were higher, such as with blood draws or sample collection. Additionally, participants highlighted non-monetary compensation, such as referral to other studies and health, social, or community resources as facilitating participation.
Research integrated into healthcare
Participants explained that when studies are integrated into their healthcare visit or regularly scheduled appointments, it makes participating in research easier and more feasible (Table 2 Quotes 5-6). Leveraging existing visits prevents participants from having to make a special trip to the study site, reduces the amount of time required from the study participant, and makes the study more “efficient” (Table 2 Quote 6). Likewise, this approach of combining care and research reduces barriers to participation, such as transportation and missed work.
Relatable to TGD and cisgender people
Some participants spoke of the importance of research content being relatable to both TGD and cisgender individuals. One participant gave an example of body dysmorphia being applicable to both TGD individuals and cisgender women, since cisgender women are often sexualized and experience unhealthy ideas of body image (Table 2 Quote 7). Some participants explained that research that spans health concerns of TGD and cisgender people makes the content more relatable and can provide motivation for participation in like-minded research.
Helping the TGD communities
Many participants spoke of being motivated to participate in TGD-identified health research in order to help the TGD community (Table 2 Quotes 8-10). Participants explained that research can help TGD individuals in similar ways to advocacy work (Table 2 Quote 10). They spoke of wanting to be a part of something that will impact their community in a positive way and to be altruistic.
Barriers to Participating in TGD Health Research
Research and healthcare averse
Some participants spoke of dislike and distrust of seeking healthcare, going to the doctor, medical environments, or participating in health research. One participant explained that they only accessed healthcare in dire situations; thus, they had never participated in research before (Table 2 Quote 11).
Do not identify with being labeled as TGD
A few participants spoke of not liking to be referred to as or not calling themselves TGD, “trans” or “transgender.” One participant felt the word did not describe them (Table 2 Quote 12). Another explained this was not a part of their identity and they did not feel connected to or part of TGD communities (Table 2 Quote 13). Participants described that as a result they did not feel drawn to research labeled “transgender research” or studies marketed to TGD individuals.
Overlooking individuals who are not “trans enough” or missing those who are questioning
Participants expressed concern of TGD health studies missing individuals who are questioning or not “out” as TGD due to either the studies not recognizing them as TGD or the participant not thinking they are eligible for a study recruiting TGD individuals (Table 2 Quotes 14-15). One participant explained that many different identities would fall under the TGD umbrella and could be missed (Table 2 Quote 15).
Research from a “cisgender lens”
Participants expressed dislike of TGD health research where they had to simplify, over explain, or “dumb stuff down” for cisgender researchers (Table 2 Quotes 16-17). They also expressed being suspicious of why cisgender researchers were conducting TGD health research (Table 2 Quote 16). They felt cisgender researchers infantilize TGD people and assume that TGD people are not knowledgeable about TGD health topics (Table 2 Quote 17).
Distrust of how the research will be used/ privacy concerns
Some participants expressed being wary of how research data will be used and not trusting researchers to give them their information (Table 2 Quotes 18-19). One participant explained it was because TGD individuals have been “burned in the past” by researchers (Table 2 Quote 18). Another individual explained that participants often never see how their efforts benefit the community (Table 2 Quote 20).
Not accessible to TGD communities/ unaware of research opportunities
Participants expressed not knowing about health research opportunities or where to go learn about TGD studies (Table 2 Quotes 21-22). Participants also perceived that TGD communities were often unaware of research studies.
Research that is objectifying/ exploitive
Participants described disliking research that felt opportunistic, where researchers were only conducting TGD health research because it was “the new hot thing” or publishable (Table 2 Quote 23). They also spoke of participating in research where they felt their experiences were misrepresented in research findings and disliked feeling like a subject or “put under a microscope” (Table 2 Quote 24).
Best Practices for Recruiting and Retaining TGD Participants
Participants described “best practices” for recruitment and retention to meaningfully engage TGD individuals in research studies.
Providers connecting participants to research
Many participants spoke of wanting to be referred to studies by their medical providers. They suggested having providers give out fliers on TGD health research studies to their TGD patients (Table 3 Quote 1) or having pop-ups in provider emails to have them remind patients of study opportunities that patients may qualify for (Table 3 Quote 2).
Going into TGD community spaces
Participants also highlighted the importance of having researchers come to organizations, groups, and community spaces frequented by TGD individuals to either tell them about studies or pass out fliers (Table 3 Quotes 3-4).
One-on-one contact (e.g., texts, calls, conversations)
Participants expressed liking one-on-one contact methods. They explained this could be via texts sent out with study opportunities or having a face-to-face conversation about the study with a research staff (Table 3 Quotes 5-6).
Social media to both link individuals to care and recruit participants
A few participants suggested that social media (e.g., Facebook, Instagram) would be an effective way to enroll TGD people in studies who are not currently accessing healthcare at study sites. Reaching out about TGD research opportunities was also described as a means of getting these individuals linked to needed healthcare services (Table 3 Quote 7).
Participants expressed the importance of using multiple recruitment methods to reach TGD patients, such as telephone calls, texts, fliers, and social media (Table 3 Quote 8), especially from an accessibility standpoint (Table 3 Quote 9).
Participants explained that providing paid postage to return surveys and other forms of study data would make it easier to participate (Table 3 Quote 10-11).
Participants expressed liking routine check-ins and contact with study staff via phone and email as reminders to participate in the surveys and visits, as well as to demonstrate to them that researchers care about their participants (Table 3 Quotes 12-13).
Emphasize importance of research content
Some participants felt that research content and emphasizing how research participation will help TGD communities and society will keep participants engaged (Table 3 Quote 14).
Patient-Centered TGD Health Research Methods
Participants expressed ideas for improving research methods in TGD health research.
Survey bias in measures
Many participants spoke of surveys and other measures in TGD health research tending to focus on negative outcomes and experiences. They spoke of how asking only “negative” questions, such as about depression and risks, could paint an overly negative picture of how someone is feeling if they are not also asked about happiness, positive outcomes, or lived experiences of resiliency (Table 4 Quotes 1-2). One participant discussed the over-emphasis on gender dysphoria as an example of bias in TGD research, and wanted to learn about gender euphoria – a positive counterpart describing the feeling of self-actualization and joy in finding comfort in one’s gender identity and expression.
Biospecimen collection as optional with consent for specific usage
Some participants expressed concern about biospecimen collection. They spoke of wanting to know what the biospecimens would be used for and wanting researchers to acquire consent for each specific use of the biospecimen (Table 4 Quote 3). Others wanted to be told the purpose of collecting a biospecimen and how the researchers were planning to use it (Table 4 Quote 4). Some desired biospecimen collection to be an optional component or research study procedure (Table 4 Quote 5).
Interviews/focus groups as candid conversations
Participants expressed liking when interviews or focus groups felt informal and like a genuine conversation (Table 4 Quote 6). They also described the importance of transparency and comfort in these methods of data capture.
Disseminating research findings back to the community
Participants explained that they wanted to be told of the research findings of the studies they participated in (Table 4 Quote 7). This was described as a way to build trust with communities and show respect for research participation. There was also an interest in ongoing dissemination of study findings, such as through quarterly or annual newsletters.
Having a diverse sample
Participants talked about the importance of including a diverse sample of TGD participants in TGD health studies. They explained that the sample should be representative of how diverse TGD individuals are (Table 4 Quote 8), as well as be inclusive of individuals from different neighborhoods, of different races and ethnicities, and having diverse LGBTQ identities (Table 4 Quote 9). One participant also emphasized the importance of seeking out hard to reach TGD individuals who “are least likely to be able to” participate in order to include their experiences and voices in the research (Table 4 Quote 9).