An Ethic of Care for Research Participants as Trauma Survivors
April 3, 2023
In a previous post, we shared our overall approach for trauma responsiveness in research, and how crucial it is to our work with people who have lived experience in the child welfare system, and the highly sensitive nature of the topics that our research studies cover – from living in a group home to being a part of child protective services investigation. Following up on that post, we want to continue sharing our practices with fellow researchers and professionals who similarly engage with system-impacted communities in the social sector. This time, we are offering an insight into our ethics of care, and how we prepare for and respond to signs of distress from participants during research interactions.
Where approaches like psychological first aid are deployed in the immediate aftermath of a crisis or disaster, we sought to develop a set of protocols around identifying, responding to, and mitigating distress participants may experience during research interactions related to trauma from their recent to distant past.
By combining trauma-informed principles with an ethic of care, we developed a protocol that follows these five steps:
Track and notice
Acknowledge and validate
Offer options for support
Follow their lead
End on a caring note
Trauma-informed principles in research
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, two departments under the United States Department of Health and Human Services, propose six principles to a trauma-informed approach.
These principles are well studied and widely referenced, including in how they translate to research contexts (see, for instance, this quick guide by the Center for Victim Research). Particularly in this context, this begins with safety, and ensuring that participants “feel physically and psychologically safe” and that their “safety is considered a high priority.”
For us this means that, in addition to using research methods that consider and protect the physical and emotional safety of participants, and conducting research in spaces (both physical and virtual) that feel safe to participants, we need to have a process by which we restore safety should participants feel distressed or activated.
Ethic of care in research
As we discussed in our former post, designing research to be trauma-informed is a necessary but not sufficient condition to being trauma-responsive. Being trauma-responsive implies moving from principles to practice. How could our research team not only understand survivors of trauma but care for them in our research interactions?
To make that connection, we found Joan Tronto’s (2005 and 2013) five ethical qualities of care to be a helpful guide, as it emphasizes interpersonal caring relations and challenges individualistic and self-interested ways of caring.
We took each ethical quality of care and envisioned what it would look like in the context of research practice, both in caring for participants and caring for ourselves as the research team:
Protocol for identifying and responding to signs of distress from research participants
The five-step protocol that we formulated includes the actions our researchers are trained to do along with examples of language they can use as they recognize signs of distress from research participants and attempt to address them.
Step 1: Track and notice
We watch for signs of potential changes in affect. These could be verbal or nonverbal. Is the participant breathing more heavily? Are they restless or fidgeting? Are they getting irritable? Are they becoming agitated? Are they spacing out? (Some of these may be harder to observe if the research is taking place remotely and the participant is off video.)
Another form of detachment or disconnection, called dissociation, can be mild or severe. Mild forms of dissociation occur everyday for all of us, such as when we are driving a car and become inattentive or distracted while continuing to function as if on autopilot. More severe forms of dissociation are often related to a history of early trauma. These are potential signs of dissociation that we watch out for:
Fixed or glazed eyes
Sudden change of mood to low or no emotion
Long periods of silence
Other changes worth noticing include:
Someone suddenly feeling very hot and sweating or very cold and shivering
Sudden loss of concentration or remembering
Researchers on our team can also proactively check-in if they feel like the energy is heavy or that the participant has just shared a lot (e.g., “We have covered a lot of territory over the past hour. How are you doing right now?”).
Step 2: Acknowledge and validate
If we see warning signs, rather than continuing business as usual, we stop to tend to the participant’s distress.
We acknowledge and name what is happening (e.g., "I noticed that your tone of voice shifted a little bit, is everything okay?") rather than ignoring it.
We listen but do not pry. If the participant dismisses our concerns or doesn't want to talk about it, we do not dig further or force them to tell us. It could also be that those signs are not indicative of any distress!
If the participant shares how they're feeling, we affirm that we are listening (e.g., “Thank you for sharing that.”) We validate the veracity of what they’re feeling. It could be as simple as saying: “I’m sorry that happened” or "I'm sorry you are feeling [use their own words], that sounds [terrible / frustrating / difficult]".
We do not interrogate, blame, voice doubts, or minimize their feelings by saying things like "it will be okay,""it will pass,""everything happens for a reason," or even “I understand how you feel.”
As needed, we normalize the participant’s feelings and experience by reminding them that it’s not unusual for people to have strong feelings arise when recalling painful experiences like the one they just shared with us.
Step 3: Offer options for support
We ask the participant directly what typically helps when they are feeling this way. For example, some people may like to take a break and go for a walk to calm down, while others may say they need to call a friend. We find that using person-specific calming techniques works best.
We offer options for how to move forward (e.g., "What would you like us to do next?"). This could mean taking a break, engaging in soothing or grounding techniques, or even ending the research session.
If the participant wants a break: We affirm that they can take all the time they need (e.g., “Take as much time as you need and let me know if there is anything we can do to support you. We will be here when you are ready.”)
If the participant wants to try soothing activities: For in-person research sessions, we provide supplies for activities (e.g., coloring, collaging, solving a puzzle) and self-care items (fidget toys, stress balls, aromatherapy oils) that engage different senses and offer different forms of grounding. For remote research sessions, our researchers have a few different activities that they can invite the participant to try. These include breathing techniques (e.g., box breathing), muscle relaxation techniques (e.g., the “CALM” exercise), mental grounding techniques (e.g., the 5-4-3-2-1 technique), and physical grounding techniques (e.g., self-holds). When engaging in these activities, we found that it helps for the researchers to model the behavior themselves.
If the participant wants to stop the research session: We make sure they know that it’s okay to do so. (e.g., “This is completely understandable and okay. As we talked out before, no one at Think of Us is upset about ending this interview. We just want to support you in the best way we can. If you need information about people to talk to, we can send you some phone numbers or send you resources that may help.”)
Step 4: Follow their lead
We make sure that participants know that they are in control, and most importantly, actually let them take the lead. Trauma survivors need to feel safe, feel in control, to express their emotions, and to know what comes next.
If the participant wants to continue the research session, we continue. However, it is not necessary—nor recommended—for us to probe for more information about trauma history at this point.
We make sure to announce the transition to a new activity or set of questions that may be activating by asking the participant if they are okay to switch to that topic (e.g., “Next, we would like to ask you questions about [insert topic]. Is that okay with you?”). You may also preface a sensitive question to warn them as well (e.g., “This is a bit of a hard question, so feel free not to answer it”).
As much as possible, we provide the participant with opportunities to be in control of the lines of inquiry (e.g., “We could talk about X or Y, which one would you prefer tackling first?” or “What are you comfortable talking about?”)
If signs that the participant is feeling activated keep showing up, we can end the session early in a manner that ensures the participant knows we are grateful for their participation, there is no problem ending the session at that point, and there are no negative consequences to doing so.
Step 5: End on a caring note
As the research session ends, we thank the participant (e.g., “I really appreciate you doing this interview with us today. Thank you for taking the time and energy to go through this.”).
We try to normalize the feelings that may have come with reliving their experience. We may say: “I want to acknowledge that talking about these experiences can be uncomfortable, overwhelming, or [use their own words]. I really admire how you [affirm something that they did well, for example: tell detailed stories, provide helpful suggestions, etc.]. This was a difficult interview, thanks for working through it with me.”
We check in with the participant (e.g., “How are you feeling right now?”).
We offer to provide follow-up support if they would like (e.g., “What else do you need today?”). We assess whether they would like any program support, referral to other services, or additional resources or information. We ask first before following up.
Above all, we abide by this guiding principle: “Do what you say and say what you’ll do.” If we say we will follow up, we make sure to follow up, and researchers are encouraged to assess their capacity accordingly, and to prepare beforehand as much as possible. In some research locations, this means putting together in advance a list of localized, and vetted, resources that we can provide referrals to.
We encourage participants to take some time the rest of the day for some self-care if they can.
With every research project or study, we continue to evolve and improve these practices as we work around different topics, with different people, and learn of the different ways in which research participants prefer to be and feel cared for. Acknowledging that it is continuously shifting and changing, we share our current protocol in the hopes that it is useful to others, and that it elicits further open and public discussion on how researchers who work with trauma survivors can show up as agents of care.
It is also worth noting that we form our research teams with an eye not only towards subject matter and lived experience, but also to have some experience in counseling or peer support. By way of example, on a recent research project, out of the 6 team members, all had worked in child welfare in some capacity; three had proximity as workers in child welfare; four had direct lived experience in the topic being studied, four had prior research experience, and four had some experience in counseling, social work, or crisis response. Even with this level of experience, it was still important for us to establish a shared language and understanding of how we show up for our research participants. Additionally, this does not preclude our team members from having to tend to their own wellbeing and navigate their own trauma, something we will speak to in our next post.
Immense gratitude to Amber Cole, Anna Myers, and Shantell Steve, who have reviewed and contributed to different versions of this protocol. Huge thank you to all the research team members who have deployed these practices throughout the years, allowing them to form into what they are today. Thank you also to Verónica Caridad Rabelo for their valuable contributions to an earlier draft, and to Natalie Bergstrasser and Jess Skylar for reviewing this post.