Table 2 Motivators/Facilitators and Barriers to Participating in Transgender and Gender Diverse (TGD) Health Research (N = 28)
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 | 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 | |
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 | |
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 | |
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 | |
Helping the TGD community | 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 | |
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 trans TGD-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 led 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 |