As a qualitative researcher and designer, I generally focus on people’s lived experiences rather than the science behind them. But I’ve come to appreciate how a few neuroscience fundamentals, when paired with a people-first research approach, can inform our work in agile civic technology spaces.
In the scientific literature, there’s growing attention to how our brains handle traumatic events. In a workshop hosted by McLean/Harvard Medical School, Dr. Moreland-Capuia described trauma as “fear and stress that doesn't turn off.” Fear is designed to be time and threat-limited, meaning our physiological responses to fear are helpful ... until they’re not. They can become dysregulated when we’re exposed to fear we don’t have the resources to cope with.
Dr. Moreland-Capuia goes on to describe how our amygdala is the center of processing fear and fear learning, which is the emotional memory aspect of fear. Others describe the amygdala as the “smoke detector” of the brain, which doesn’t distinguish between past and present, but activates instinctively.
So imagine, for example, when a Veteran is asked to recall dates and locations of a painful military event for a disability benefit application. In that moment, they may experience the psychological and physiological effects of that event. Their body literally relives the experience, activating stress hormones and nervous-system responses as if the event were happening again.
At Coforma, we work to bring this knowledge into what we call a trauma-informed and trauma-responsive design and research process. With some basic tenets of neuroscience in mind, we hone our research toolkit to ensure the safety of our participants and team, which in turn leads to richer research findings and superior products that ultimately serve people better.
What Trauma-Responsive Design Looks Like in Practice
An example of this was when I worked with the Department of Veterans Affairs Office of the Chief Technology Officer (VA OCTO) on their online disability compensation form. During routine end-to-end testing of the form, we observed a Veteran go through the difficult process of recording an experience of military sexual trauma. Seeing the ways that person struggled with the application—taking long silent pauses, carefully typing out and retyping their story multiple times, stepping away, coming back, abruptly changing course, or retracing their steps when in doubt—activated our team to advocate for this subsection of the form to be prioritized in our next research study.
With support from our VA partners, we were able to align this bottom-up advocacy with a top-down policy change that VA was already pursuing to combine two previous forms into a new, streamlined version.
Our team was tasked with translating the new form into an interactive digital format and integrating it into the online disability claims process. The research study we conducted on these new designs reinforced the following trauma-responsive approaches.
1. Expect trauma to crop up in unexpected places.
In the research world, there’s growing awareness of trauma in generative, exploratory research. I’ve seen less attention to it in more technical, delivery-focused environments where researchers are focused on usability testing of existing products.
However, we saw again and again that touchpoints like forms and decision letters can be the site of both old and new trauma. Usability research (like the end-to-end testing we ran) may seem by-the-book, but we never know what lived experiences someone brings to the process.
In our study, we listened carefully for cues from our participants so we could learn and anticipate how this might come up. Some of the experiences they described included:
“Getting ready to fill this information out, it kind of makes me anxious because now I gotta bring up these memories again … Sometimes reliving every single detail can be as traumatic.” —Veteran participant
“This is our moment of truth to tell them what happened, when, and where.” —Veteran participant
“[While remembering a letter that denied benefits] It literally said in black and white on paper, like, you're lying. You know? That had a tremendously negative effect on me… Or when somebody tells you that they lost the paperwork. That made me cry. Because even just filling the paperwork out itself was retraumatizing.” —Veteran participant
While acknowledging that even seemingly mundane form questions can bring up distressing memories may seem daunting for product teams, it also means there’s an opportunity to make a real difference in that person’s experience. As we started to test content that took this lived experience into consideration, we heard the tone of our participants shift:
“I actually like that it gave the Veteran the option. VA is showing sympathy, like hey, we understand if you don't have it, that's fine. Don't feel pressured to try to go hunt for a report.” —Veteran participant
“The big positive for me is the little blurb that said, we understand that these are difficult questions to answer. So feel free, you can save this application, and try and do it again later. That is definitely relieving.” —Veteran participant
Content changes like these are often “free” in the sense that they don’t require substantial changes to form questions, or the policy review and engineering lift that comes along with major redesigns. Yet they play a huge role in rebuilding trust.
2. Prepare in advance, and be responsive in the moment.
Our team did a lot of work to prepare our study, such as adding steps to the participant screening process to ensure folks had a clear idea of what would be covered during our interviews. We also reviewed our discussion guides with licensed clinical social worker and trauma-responsive design expert Rachael Dietkus, who was also able to join many of our interviews. However, we felt it was important to think of our trauma-responsive approach not as a checklist to complete in advance, but an ongoing, responsive process happening in conversation with participants throughout the study.
A principle from the Substance Abuse and Mental Health Services Administration’s (SAMHSA) trauma-informed approach, which we leaned on frequently, was giving voice and choice to participants.
After hearing about their past experiences during each interview’s warm-up questions, we always checked in and offered an opportunity for the participant to opt out or reschedule if they weren’t feeling up to the task in that moment. This allowed participants to process anything that came up for them, as described below, and to choose how to move forward.
“Now even with me reading these and just bringing up the information, I remember that moment right now in my mind when we experienced the first mortar attack … Just going through these questions. That's when all the memories start coming in and flowing in. It's like ok, I was there, you know, I did this.” —Veteran participant
“That whole process just going through… like I'm out of breath right now and I didn't even fill [the form] out, you know?” —Veteran participant
We offered the same exit strategies throughout the interview, along with breaks to step away to reset after particularly intense moments like these, and aimed to honor whatever choice felt right to the participant in that moment.
3. Take thoughtful and responsible risks.
Conducting research on sensitive topics always includes risks that should be weighed before jumping in. Sometimes, the right choice might be not to conduct research if the burden on participants outweighs the potential benefits. But we consistently saw that our research was worth it, and that even the most thoughtful design process in partnership with experts on trauma is no replacement for hearing directly from users.
There were several aspects of our designs in which our hypotheses as to what would be the most trauma-responsive approach were proven wrong. Sometimes, our research findings led us to break well-established patterns to account for the unique nature of a question. For example, we decided to stretch the pattern of “one thing per page” and group several questions relating to a traumatic event on a single screen so users could see all the information at once and avoid repeating aspects of their story multiple times.
When provided with information and options, the Veterans we spoke to were more than capable of weighing the risks of participating in the study, then making nuanced tradeoffs as they walked through tasks, and articulating their reasoning so we could follow along.
A personal win for me was when one participant returned from a previous study and chose to sign up for another session weeks later. As we wrapped up our second interview together, they shared their perspective on the value of having their voice heard:
“I really appreciate that you all continue to do this work, because it shows to me that the VA is becoming … a little bit more human. Because when you have Veterans giving their experiences and being able to think of things that someone as a non-Veteran or clinician would not think of, that is so great. You give the opportunity to Veterans like us to feel like we have more agency in this process and in this community.” —Veteran participant
A Final Note on Community
The most important thing I’ve learned from both the scientific literature and through my own practice is that human connection is “the single most powerful protection“ we have from trauma, and that healing happens in the context of relationships. Our support networks are part of the well of external resources we tap into to navigate and cope with traumatic events as they happen and recover from painful past experiences.
At VA OCTO, our team benefited immensely from a self-organized community of practice around trauma-responsive design and research, with a shared channel to discuss learnings, biweekly calls to connect and recharge, and a wealth of knowledge shared openly and collaboratively. I credit this group, which included VA staff as well as contractors, with setting our team up for success and providing a model of excellence that I hope to replicate with new partners and project teams moving forward.
Alongside peer support, it’s important that we cultivate institutional recognition for those of us doing trauma-responsive work. Structured time and space for reflection, guidance, and growth can help ensure this approach is sustainable over the long term.
About the Author
Julie Pedtke is a Principal Design Researcher at Coforma with experience across academia, startups, and civic tech. In addition to her work with disabled Veterans, she has led participatory projects with public housing tenants, formerly incarcerated New Yorkers, and people with chronic illnesses. She believes honoring neurodiversity and taking a trauma-responsive approach can build community power. Julie holds a BA in urban ethnography from Hampshire College and a Master of Architecture from Columbia University.