Analysis
The RESTART interviews are full of really rich experiences and perspectives, and we are currently working on distilling them down into an initial draft of the guidelines for implementing a trauma-informed approach to HIV and sexual health-related research. These will be shared with participants, and we will gain consensus through a Delphi process starting in fall 2024.
WHO ARE THE PARTICIPANTS?
We completed a total of 64 interviews. We interviewed 17 researchers, 17 therapists, and 30 community members. The median age for all participants were between 29-39.
RESTART Study Participants
Median Age of Study Participants
Race/Ethnicity of Overall Study Participants by Percentage
The majority of participants from all groups were white and lived in the United States, which is a common limitation in research studies. We did intentionally work to recruit a diverse array of participants, but we know also that oversampling of marginalized communities in HIV and sexual health-related stigma research contributes to research fatigue for participants.
Many people who belong to marginalized groups do not participate in research, either by choice or because they are unable to due to systemic barriers to participation, such as not being eligible to participate or not being able to because, for example, they do not have access to a device to participate in a survey or interview, or they do not have much leisure time in which to participate in studies.
Location of Overall Study Participants by Percentage
Overall, 75% of our participants were transgender. 29.4% of researchers were trans, the majority (76.5%) of therapists were trans, and 100% of the community members were trans. The majority of community members were trans men or transmasculine, with smaller numbers identifying as trans women/transfeminine or nonbinary.
Percentage of Transgender Study Participants
Community Member Participants Gender Data
PRELIMINARY DATA — WHY IS A TRAUMA-INFORMED APPROACH NEEDED?
Here, we will share with you some quotes from the interviews which emphasize why a trauma-informed approach to research is needed.
“If you’re not being trauma-informed with your team, and from the very beginning, then I don’t think you’re ever going to be able to be truly trauma-informed with your participants or the way that you come together to do the study procedures and how that works.”
A trauma-informed approach is important not only for interactions with participants, but for the larger approach to the study itself, including study team dynamics.
“I think as a researcher, just trying to get into that frame of mind of not asking everything just because it’s data that you could get versus what is it that you need for your project, but then also what is it that is right for your population?”
This quote talks about the importance of being specific and intentional with data collection during a study. One of the themes that came up during the interviews was prioritizing community needs, which this quote addresses.
“…you’re going to more than likely get better information from someone who feels comfortable being honest, being completely transparent. Well, I don’t know if anyone’s going to feel safe, completely safe, but safer.”
A trauma-informed approach may lead to higher quality data, because participants will hopefully feel more comfortable participating when a study has a trauma-informed approach.
“…the trauma-informed approaches are useful in life and so obviously in research also…I think especially when you’re conducting research with a community where you can safely assume everyone you’re working with has experienced some form of trauma, whether they’re aware of it or not.”
A trauma-informed approach can be helpful on a broader level, in contexts beyond research and clinical care as well
“I think you’re going to get more thorough, correct, honest answers if you are doing the work to communicate and listen on the same wavelength as the people you’re talking to, your data’s going to be more meaningful. I think for longer term studies it’s important for retention if you want to have people come back for the second round of whatever, they need to have not had a terrible experience the first time.”
This participant response is aligned with a quote which shared earlier, agreeing that we can get better data and participants may want to stay in studies longer for projects which use a trauma-informed approach.
“…considering trauma, we see, especially in the first slide, it kind of affects all aspects of life. It could affect physical health and mental with memory concentration, people’s personal relationships with other people, like forming trust, emotional regulation, and self-worth and self-belief…So it really has a play in pretty much every aspect of life.”
It is important for researchers to consider the greater context of participant’s lives, both in terms of how it will affect the data quality, but also (and arguably more importantly) how participation may affect the participant. We would like to see participants having positive experiences when participating in research, but we know this is often not the case. We hope that a trauma-informed approach will help change this.
This is just the tip of the iceberg of all the information we have gathered from what you’ve shared. We are excited to share more with you soon.