Sample Characteristics
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%) 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.
Table 1. Descriptive Characteristics of Transgender and Gender Diverse (TGD) Study Participants (N=28)
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Characteristic
|
% (n) or M (SD),
Range
|
Age in Years
|
33.9 (12.3), 18-66
|
Gender Identity
|
|
Male
|
14.3 (4)
|
Female
|
10.7 (3)
|
Transgender Male
|
28.6 (8)
|
Transgender Female
|
35.7 (10)
|
Nonbinary
|
10.7 (3)
|
Sex Assigned at Birth
|
|
Male Assigned at Birth
|
42.9 (12)
|
Female Assigned at Birth
|
57.1 (16)
|
Ethnicity
|
|
Latinx/Hispanic
|
28.6 (8)
|
Not Latinx/Hispanic
|
71.4 (20)
|
Race
|
|
White
|
42.9 (12)
|
Black
|
17.9 (5)
|
Asian
|
10.7 (3)
|
Another Race
|
10.7 (3)
|
Multiracial
|
17.9 (5)
|
Geographic Location
Boston
New York City
|
39.3 (11)
60.7 (17)
|
Motivators/Facilitators to Participating in TGD Health Research
Participants discussed a variety of motivators/facilitators to participating in TGD health research projects (Figure 1).
Research creating TGD community
Participants described that TGD health research may provide them the opportunity to connect with other TGD individuals, thus creating a community of participants. They described feeling motivated to participate in research as a means to feel engaged with other TGD community members (Table 2 Quote 1).
Table 2. Motivators/Facilitators and Barriers to Participating in Transgender and Gender Diverse (TGD) Health Research (N=28)
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Motivators/Facilitators
|
Research creating TGD community
|
1. “I know there’s a lot of situations where a trans person can become like -- can just be isolated, but I think research and things that can help form a sense of community and, like you said, there have been so many millions of us throughout the years in human history.”
-Boston
|
Research led by TGD researchers
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2. “I’ve done a few research things, and something I always appreciate is when they’re run by trans people. I had one thing where I didn’t know too much about the person that was interviewing me, and I was just, like, why is it not queer, like, not gay, not trans dude asking me all these, like, really [meaningful] questions about my transition? But then at the end, he did [say] that he was trans, and that just made me feel, like, a lot better. Because it’s like, talking about your experience.”
-New York
3. “In terms of research priorities of being in research studies I feel like it’s a priority to have trans people and not just one token trans person but trans people as integral part of the research team designing it from the beginning. Like really there at every step.”
-New York
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Compensation
|
4. “I was going to say, the only way to truly -- to get more people would probably be to give them an incentive and to give them a gift card or something, because I get surveys all the time.”
-Boston
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Research integrated into healthcare
|
5. “I think it’s great that it could just be integrated into our regular visits with primary care. We don’t have to really do anything super extra that would take up large chunks of our time, involve extra visits.”
-Boston
6. “If you’d integrated it…that’s more efficient, yeah.”
-Boston
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Relatable to TGD and cisgender people
|
7. “even a cis person, if you ask them about -- something about how they relate to their body, it might get them thinking…Because I’ve read a lot that even with women who would consider themselves cisgender, they experience a massive amount of body dysmorphia just because of like how women -- or cis women, rather, specifically, are forced to grow up and socialize and be sexualized from a young age and it creates like a really warped body image. Like, it’s something that I feel like a lot of women might not notice until you ask them about how they present themselves. And like, of course this manifests in trans women too because they’re still exposed to the same socialization.”
-Boston
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Helping the TGD community
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8. “I feel good about furthering trans-health research and trans-health equity.””
-Boston
9. “I would basically like to be going to the research studies, because it basically helps us trans people basically over time”
-New York
10. “Yeah. I think research can be a form of advocacy if done correctly, and I think that anyone and everyone who participates in this study is doing their community’s a favor because I think data can be very powerful”
-Boston
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Barriers
|
Research and healthcare averse
|
11. “I’ve never done any studies anywhere. I’ve been told -- two years ago, I never really saw doctors or went to hospitals for anything, for any reason whatsoever. I’m the type that, to even get me to walk into an ER, the bone’s got to be sticking out.”
-Boston
|
Do not identify with being labeled at TGD
|
12. “It’s complicated because it’s like good and bad at the same time. You know what I mean? But overall it’s just like -- like I said there is no category for me. I don’t identify as any of that. I do but I don’t”
-New York
13. “I don’t like to label myself as trans. You know what I mean? Like I don’t even like that word…can’t relate me to the community because I’m not the community. I am but I’m not. I’m just me. Don’t really identify.”
-New York
|
Overlooking individuals who are not “trans enough” or missing those who are questioning
|
14. “To build on that, I think maybe questioning folks may also not feel like they’re included…under the study premises even if they would be.”
-Boston
15. “I would even argue that it’s important for people to identify that way or are stealth or -- that data is there too. So it’s hard when you don’t want to share that and don’t identify as that but also that’s many people under the umbrella who should also be represented in some way.”
-New York
|
Research from a “cis lens”
|
16. “I tend to be instinctively kind of weary of transTGD-focused things that aren’t headed at least mostly by trans people because it always feels a little bit like, “alright, so what are cis people gaining from this. Like, what is your stake in this?” And also it being lead by trans people also makes me feel like there’s more of a floor to get really into the weird, granular stuff of gender experience without having --like, without the people you’re serving having to like dumb stuff down basically. At least don’t have to explain what trans means. [laughter] That’s big.”
-Boston
17. “I feel like sometimes things that are meant to be more targeted towards the trans demographic sometimes kind of still feel like they have cis-people gloves on, if that makes sense. Kind of like baby talking through, and it’s like, “no, we can just talk seriously about this.””
-Boston
|
Distrust of how the research will be used/ Privacy concerns
|
18. “it’s unfortunate when you’re dealing with any group of people that has been burned in the past. They just sometimes don’t trust easily. So they’re like, “Well, I’m not giving you my information.””
-New York
19. “I feel like there might be a chunk of people who don’t want anything to do with that study. Just be like, “I don’t want my information being out in the world.””
-New York
20. “people put in all these informations, and at the same time, you almost feel like it never reaches, like, people, so they can see us in a different light… So I feel like that’s maybe one of the reasons why they don’t want to participate.”
-New York
|
Not accessible to the TGD community/ Unaware of research opportunities
|
21. “Well, again, I’m just saying, what are we supposed to be doing, like, going to transresearch.com every single day [laughter]”
-New York
22. “This was happenstance. I saw this on Facebook…I don’t know that transgender people -- like, where are we supposed to hear about studies that are being conducted about our community?”
-New York
|
Research that is objectifying/ exploitive
|
23. “it felt like they were doing it because it’s the new hot thing and just wanted to like oh like this paper will get accepted, this is an easy project because there’s nothing about trans people so we don’t have to work too hard. And it really felt bad.”
-New York
24. ““why are the results of this study so depressing?” Or like, “that’s not what I said. Why is what I said so miscommunicated in this report?” And it feels very exploitative and it feels very like we’re put under a microscope, right, as a community.”
-Boston
|
Compensation
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 for their time. They also spoke of payment to compensate 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, and may reduce the amount of time required from the study participant, making the study more “efficient” (Table 2 Quote 6). Likewise, this approach of combining care and research may reduce 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 would make the content more relatable and might provide motivation for participation in like-minded research.
Helping TGD communities
Many participants spoke of being motivated to participate in TGD-identified health research 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 research that will impact their community in a positive way and to be altruistic.
Barriers to Participating in TGD Health Research
Participants discussed several barriers to participation in TGD health research projects (Figure 1).
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). These participants also described that 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 overlooking individuals who are questioning or not “out” as TGD due to studies not recognizing them as TGD or the participant thinking they are not “trans enough” to be 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 described feeling how cisgender researchers may infantilize TGD people and may 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 TGD 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 many TGD communities were often unaware of research studies.
Research that is objectifying/ exploitive
Participants described disliking research that felt opportunistic, wherein they perceived 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. These factors are displayed in Figure 1.
Recruitment
Providers connecting participants to research
Many participants spoke of wanting to be referred to studies by their trusted 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).
Table 3. Patient-Centered Approaches for Engaging Transgender and Gender Diverse (TGD) Participants (N=28)
|
Recruitment
|
Providers connecting participants to research
|
1. “I think having providers mention it would be helpful… like, “Okay, well since you’re here and you’re one of my trans patients, you might be interested in taking part in this study. Here’s a flyer.” Just kind of do it like that.”
-New York
2. “What if, in terms of getting the little pop-ups in our inboxes about reminders, the providers also get little pop-ups in their inbox to remind their trans patients [of studies].”
-Boston
|
Going into TGD community spaces
|
3. “Well, a lot of us go to a lot of organizations or groups. So if you go to different organizations that are trans-focused and go to trans groups you’re going to find trans people.”
-New York
4. “But as far as getting people out I guess can also have like flyers, information at places where trans people gather. Or maybe have someone come in and describe the studies to us. And then we’ll… see the person representing…so your organization must be good”
-New York
|
One-on-one contact (e.g., texts, calls, conversations)
|
5. “text messages ’cause a lot of people are, like, always on the phone, so they’ll see.”
-New York
6. “I also like this idea like sitting in person and having a conversation like face to face asking us how we feel about it.”
-New York
|
Social media to both link individuals to care and recruit participants
|
7. “Because, like, if you felt that you couldn’t get enough people at Callen, some form of social media might be able to get you the non-Callen trans people of New York.”
-New York
|
Multiple modalities
|
8. “Having multiple form of communications. Not just Facebook or digital but also paper forms. Phone calls. Text messages.”
-New York
9. “I think also like using like phone call…very important for patients who have disabilities. If you just put posters up then blind people will never know it exists. So making sure that everybody can access the information even if they’re blind or deaf or whatever the case may be.”
-New York
|
Retention
|
Providing postage
|
10. “You know, I take it if you mailed me a form, and at my convenience…Great, and the post is payed, put it in the box, that’s fine.”
-Boston
11. “postage, paid, returned envelope… anyone who was remotely interested in their particular subject matter would [put] it in the mail.”
-Boston
|
Reminders (e.g., calls, emails, letters)
|
12. “Like an e-mail blast once a month. Nothing too aggressive. Just maybe every other month or once a month.”
-New York
13. “Because it’ll show us you actually care…a check-in phone call in between visits.”
-New York
|
Emphasize importance of TGD research content
|
14. “Compensation is great, but also just being a part of it is really great because it’s for the advancement of our lives and a legacy that we can leave behind in a way. And so, maybe just the emphasis on that at the second interval.”
-Boston
|
Going into TGD community spaces
Participants also highlighted the importance and acceptability 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 member (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 potential means of linking these individuals to needed healthcare services (Table 3 Quote 7).
Multiple modalities
Participants highlighted 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).
Retention
Providing postage
Participants felt that providing paid postage to return surveys and other forms of study data would make it easier to participate (Table 3 Quote 10-11).
Reminders
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 TGD research content
Some participants felt that TGD research content, specifically emphasizing how research participation can help TGD communities and society, can help to keep participants engaged (Table 3 Quote 14).
Patient-Centered TGD Health Research Methods
Participants expressed ideas for improving research methods in TGD health research (Figure 1).
Survey bias in measures
Many participants perceived that surveys and other measures in TGD health research tend to focus on negative outcomes and experiences. They spoke of how asking only “negative” questions, such as about depression and risks, may paint an overly negative picture of how someone is feeling, especially 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.
Table 4. Best Practice for Transgender and Gender Diverse (TGD) Research Methods (N=28)
|
Research Methods
|
Survey bias in measures (e.g., quality of life scales focused on negative spectrum)
|
1. “Everybody was kind of nudging at this a little bit earlier and even just now, but there is a -- there’s like a scale for depression…I fill out this thing when I come into my PCP… there’s no inverse of that, you know what I mean? There’s no elation. [laughter] And I -- when you say we’re going to measure quality of life, I want to know how happy people are, you know?”
-Boston
2. “Also, the thing about that is like I always feel like every single time I have to go to a PCP, I have to -- when I hand the tablet or whatever back to the nurse, I have to head it off with like, “I know this looks like I’m severely more depressed than I am.””
-Boston
|
Specimen collection as optional with consent for specific usage
|
3. “at the very least say, “if we’re going to do something on it, we will come back to you and ask for that specific consent,” to say, “this is specifically what we’re going to do,” instead of being like, “take my DNA,””
-Boston
4. “it’s plasma; we’re not going to miss it much. But I guess…probably like clarity of purpose, or like communicating ideas of what you intend to do with it would probably be a better call.”
-Boston
5. “about the blood collection…if you had just had it separated in two different parts, so it’s like, people that give blood and then people that don’t give blood.”
-Boston
|
Interviews/focus groups as candid conversation
|
6. “It was a cisgender man who identified as gay, and then me, I identify as genderfluid, and it was just, like, a candid conversation. We had never met each other, and it was us talking about health care and how we thought that things should change.”
-New York
|
Disseminating research findings back to the TGD community
|
7. “Right, and you’re left wondering, “what were the results of that study?””
-Boston
|
Having a diverse sample
|
8. “I think other kinds of diversity is important. Not just like oh, it’s all trans people. Making sure it’s not all the same trans person. That it really represents the diversity of who we are.”
-New York
9. “Well, you’d want to be able to get to multiple neighborhoods…for it to be a study that’s got meaning, you can’t be drawing from one strata, whether that means income strata, or one skin color…you’ve got to try to hit all those different rainbow colors…The people who are least likely to be able to be a part of this study are the people who you probably should want the most, in my opinion.”
-Boston
|
Biospecimen collection as optional with consent for specific usage
Some participants expressed concerns about biospecimen collection. They wanted to know what the biospecimens would be used for and felt that researchers should 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 TGD community
Participants explained that they wanted to be told about 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 discussed the importance of including a diverse sample of TGD participants in TGD health studies. They wanted the sample to 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 with diverse LGBTQ identities (Table 4 Quote 9). One participant also emphasized wanting researchers to seek 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).