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September 9, 2022

Trauma Responsiveness in Participatory Research

Written by
Sarah Fathallah
,
Vice President, Research + Design, Interim Head of the Center for Lived Experience

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.

Trauma-informed or trauma-responsive research?

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. 

How does trauma responsiveness translate into research practices and protocols?

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:

  • How to care for participants before, during, and after a research interaction;
  • How to support researchers in identifying and responding to participant distress during a research interaction;
  • How to build fluency in secondary trauma and trauma stewardship in research teams and support research team self-care.

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.

Before research interactions

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: 

  • Helped the participant understand what to expect, describing what the research session will look like, who will be there, how long it will last, how much they will be compensated, how their data will be used, and other information to help minimize the “unknown” and the anxiety it might induce. We also sent them the interview questions in advance and specified that they didn’t need to prepare anything before coming to the session.
  • Shared in advance a “Bill of Rights” mimicking a document frequently used to inform foster children and youth of their rights within the U.S. child welfare system to seek informed consent from participants. This contextualizes the informed consent process in a frame that may be familiar to participants, enabling them to more fully understand and evaluate consent.
  • Included links to all of the documents shared–list of questions, Bill of Rights, participant wellness packet–in the calendar invitation shared with participants.
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:

  • Facilitation skills, reflective and active listening, accessibility considerations, and other topics that would allow them to create a space where participants can show up fully and safely. 
  • Trauma and how it affects the nervous system, including how to recognize and navigate vicarious trauma and build skills in trauma stewardship–the ability to evaluate one’s response to trauma exposure.

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:

  1. Track and notice
  2. Acknowledge and validate
  3. Offer options for support
  4. Follow their lead
  5. Check in again before ending the session
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). 

During research interactions

Start research interactions on a caring note: At the beginning of each interview, we:

  • Outlined what will happen during the session, recapitulating information about expectations, discussing video call etiquette and options–allowing them to choose whether they want to have video on or off, both for them and for the research team.
  • Went over their participant rights, data sharing and confidentiality, etc., to ensure that participants understand how they can exercise their rights, by emphasizing their choice, autonomy, and control over what they decide to share.
  • Reiterated that some of the prompts may be difficult or upsetting, and asked participants if there was anything we could do or be aware of to help them feel safe during the interview.

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:

  • Thanked the participants for their time and wisdom, and affirmed and expressed appreciation for something specific about them during the interview–like telling detailed stories or advocating for their needs.
  • Asked participants how they were feeling, debriefing and processing with them, normalizing the feelings that may have come up with reliving their experience, reiterating our willingness to connect them with resources, encouraging them to take some time for self-care after the session, and offering to follow up in the future as things don’t always come up immediately after the research encounter.
  • Informed participants of next steps, and shared with them what to expect in terms of payment for their compensation, any follow-ups we discussed, and any contact they should expect from us in the future.

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:

  • Had a backup plan in case a researcher was unable to continue engaging in research interviews, discussed what to do if a researcher is activated or triggered, and practiced what to say or do during a session to signal that they needed a break.
  • Never conducted research alone, ensuring that researchers worked at the minimum in pairs, and agreed beforehand on their roles during the research session as well as any shifts in roles that should take place should the need arise. For example, in case the facilitator was triggered, the note-taker could take over on their behalf.
  • Planned time for breaks when scheduling interviews, allotting sufficient breaks between research sessions, encouraging researchers to engage non-activating activities between research sessions and avoid scheduling sessions during personal time.

After research interactions

Ensure prompt critical follow-ups: Depending on what was discussed with the participant, we:

  • Followed up via call or text if a participant was distressed and agreed that we would check up on them.
  • Provided referral paths to life-affirming services and additional resources, including for food and housing, through  our team of community responders trained in offering direct services to youth with lived experience.
  • Processed compensation payments based on the payment method selected by participants during recruitment.

Check in with ourselves and on each other: To support one another as a team, we:

  • Took time after interviews to decompress and debrief together. Team members regularly texted one another for a quick check-in as needed, or to let a team member know they’re in their thoughts.
  • Held regular team debriefs and wellness checks for the team to discuss their personal experiences with the research, vent, and if necessary surface the need to receive supportive counseling or other resources. This happened throughout the data collection process and beyond, during data analysis and synthesis as well.
  • Build in expansive time for the team to code and analyze our data, as reading interview notes and listening to recordings could be activating and hard. Team members could also request more time, have others step in to help take things off their plate, or ask someone to process or be present with them during/after coding and analysis.
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? 

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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.