Research can help us understand, dismantle, and transform unjust systems and the material realities that they create. However, research can also be a site of harm and trauma for both participants and researchers. Participants might relive painful moments, or experience their research involvement as an extension of the unjust control they endured previously. Researchers might experience secondary trauma from bearing witness to testimonials of harm and suffering.
This is especially crucial in the context of participatory research, which can engage more people with lived experience, system-impacted communities, and survivors to participate, in more ways than one, in the research process. And this is even more crucial when it comes to research with children, youth, families, and communities who have survived or are still surviving the trauma and consequences of child welfare–abuse, removal, severed relationships, disruption and instability, surveillance, and many others. As such, our research work at Think of Us can be perilous, with the potential for research encounters to be activating to both participants and researchers.
There is a growing body of work applying trauma-informed principles in research, which draws from principles such as those developed by the Centers for Disease Control and Prevention (CDC)’s Office of Public Health Preparedness and Response and Substance Abuse and Mental Health Services Administration (SAMHSA)’s National Center for Trauma-Informed Care, and two departments under the United States Department of Health and Human Services, and proposes ways to apply them in research (such as this example from the Center for Victim Research). This work helps build an understanding of trauma among practitioners. However, a trauma-informed perspective is exactly that: a lens that helps us understand. While trauma can inform our perspective, we need to be trauma-responsive in our practice.
We understand the difference between trauma informedness and trauma responsiveness as the difference between principles and practices. As Rachael Dietkus puts it, whereas trauma-informed researchers would acknowledge the existence of trauma, trauma-responsive researchers “actively anticipate the potential existence of trauma” and address it throughout the research process. As we see it, a trauma-informed approach seeks to avoid re-traumatizing people. While laudable, this is not entirely in our control; we also need to prepare for the likelihood that research participants and researchers will experience triggers or secondary trauma, especially given the oftentimes extractive and paternalistic underpinnings of research, and the power differential between researchers and participants. Trauma can inform our perspective, but we need to be trauma-responsive in our practice.
At Think of Us, we went through an internal process–inviting team members with lived experience, with clinical and social work backgrounds, and with research expertise–to co-create practices that seek to minimize trauma and center healing in our research encounters. We developed a extensive set of practices and protocols around:
In an ongoing study researching the experiences of teenagers with Child Protective Services (CPS) investigations, we deployed some of those practices, which we are sharing by way of suggestion–not prescription–as we understand that context matters, and the topic of study, research population, resources and capacity, timelines, and other factors play a role in determining which practices are appropriate and feasible.
Build relational rapport with participants: We have a dedicated manager for lived experience involved in recruiting participants and scheduling research sessions to build a relationship with participants as soon as possible. So as not to overwhelm the participants, all communications are held by the same team member.
Onboard participants: In early communications with participants, we:
Email language used for initial contact with participants
Follow-up email language used to onboard participants
Support participants in preparing for the research session: In addition to sending participants a participant wellbeing packet with resources and referral paths they might find useful during or after the research session, we provided the option to have a 1:1 call to check in with participants about anything they may be concerned about before the session.
Wellbeing packet shared with participants
Train research team members: The research team received training on:
Set a protocol in place for identifying and responding to signs of distress from participants: To help researchers identify and respond effectively to symptoms of distress, we also conducted a training for team members to be able to recognize affect changes in participants, and established a 5-step protocol for what to do when participants are distressed or uncomfortable. The protocol included examples of body language, facial expressions, speech and verbal signals, and other signs to look for, specific language and scripts for things the team could say, and tools they can use. The protocol followed these five steps:
Example of language the research team could use as needed
Implement a set of self-care strategies for the research team: These included both strategies that researchers could deploy on their own (such as techniques to regulate one’s nervous system, social support, life balance) or access through organizational resources (such as training or counseling).
Start research interactions on a caring note: At the beginning of each interview, we:
Provide opportunities for refusal: We provided participants with opportunities for refusal throughout interviews, including by stating upfront which topics were to be discussed, and prefacing each transition to check in whether they (still) wanted to talk about each topic or not. In this way, consent was not a static or one-time decision at the beginning, but rather an ongoing negotiation.
Practice active and attentive listening: In the words of Resmaa Menakem, “being an active listener involves not interrupting; not making judgments; [...] not giving advice or offering explanations; and not jumping in with a story of your own.” We practiced active listening by being fully present, being respectful, and ensuring that participants felt heard through body language and verbal affirmations, welcoming silence, and restating what was said and contributed. We also probed for clarifications without prying or “forcing stories.”
Avoid asking participants to recall memories in sequential ways: Trauma fundamentally alters how the brain processes what’s going on, and memory is encoded as intense sensory fragments, which then form the basis of subsequent flashbacks. This means that participants may have trouble remembering their past experiences in a sequential, fully contextualized way. Instead, we invited participants to share however much or little they remember, in whichever way they remember it.
Watch for signs of distress and respond accordingly: With the preparation that our team had from our initial training and our 5-step protocol, researchers watched for signs of potential changes in affect, both verbal or nonverbal, and respond in a way that acknowledged and validated the participants’ experience, offered options for support, and deferred to their lead on how they want to move forward.
Excerpt from the research training the team received with signs they should look out for
Acknowledge needs participants are expressing: When participants shared that they were having a hard time meeting their basic needs, for example if they were experiencing food or housing insecurity, we acknowledged that they have shared something that feels important–even if unrelated to the research topic–and offered to put them in touch with someone from our direct services team to connect them with resources. We want to recognize the wholeness and humanity of participants, not just their contributions to the research.
End research interactions on a caring note: At the end of each interview, we:
Support the research team as they experience vicarious trauma: Particularly given that our research team is primarily composed of people with prior exposure CPS investigations, we:
Ensure prompt critical follow-ups: Depending on what was discussed with the participant, we:
Check in with ourselves and on each other: To support one another as a team, we:
Screenshot of a Miro board used during one of our wellness checks
Assure participants that we are committed to the accuracy of their experience: Another thing that can be traumatizing for participants is feeling like their words have been taken out of context. After synthesizing the data and writing the research findings, we plan a process inviting study participants who agreed to be followed up with to correct, nuance, and react to our draft report and make sure that the interpretation of that data aligns with the intent the research participant had in mind.
As we are wrapping up this study, our team is also reflecting on ways to continue supporting research participants and one another, and minimize feelings of loss of control–oftentimes related to trauma, which can happen at the end of a project. This could include engaging participants and researchers in the study’s dissemination efforts, or conducting a peer review process led by people with lived experience–a practice that worked well when implemented in past projects.
In the meantime, we are curious to hear from you: What does being trauma-informed or trauma-responsive in research mean to you or your organization? How does it translate in your research practices?
Huge gratitude and thanks to the research team–Amber Cole, Deborah Denzel, Emily Stochel, Natalie Bergstrasser, and Shantell Steve–for co-creating these practices, implementing them as part of this project, and providing comments to this post. And thank you to Verónica Caridad Rabelo for their valuable contributions to an earlier draft, and to Angelique Day for her gracious review of this post.