Carrying out user research with people using NHS services always requires care but especially when participants have experienced trauma.
Sparck is currently engaged on multiple complex projects with the NHS, including working on products which serve people at the most difficult times of their lives.
I’m currently design lead on the NHS Wayfinder project and am always in awe of my brilliant colleagues in user research. Their thoughtfulness, rigour and sensitivity with which they approach their work is inspiring.
To bring some of that into the open, I spoke to fellow Sparckie Laura Musgrave, lead researcher for the NHS UK Find a Service team, about her experience of trauma-informed research.
Defining ‘trauma’ in a healthcare context
Miriam
How do you, as a researcher rather than a clinician, understand trauma?
Laura
As a researcher, I define trauma as difficult or challenging experiences that have significantly affected a person's mental or emotional wellbeing.
It could be a first-person experience, like a mental health crisis, or it could also be a secondary experience.
For example, I’ve conducted research with carers who have worked closely with people going through serious illness or pain. They’ve experienced trauma second hand.
Preparing for research on potentially traumatic subjects
Miriam
Can you anticipate a participant's needs before a research session?
Laura
I assess the risk before research begins. If, for example, I’m doing research in emergency care, I know there’s a high chance that participants have experienced trauma.
Other times, a session that I don’t expect to trigger people’s trauma, does.
Researchers will come across both of those situations.
Miriam
How do you prepare for research that might be traumatic for participants?
Laura
I take extra steps when I’m planning and conducting the session. I want to make sure participants and researchers' wellbeing are protected, physically, mentally, and emotionally.
It’s helpful if participants can talk to a trusted person after a session. So, I check early on if they have someone like that in their life, who they can contact if they wish.
I also find resources or other support that we can refer participants to at the end of the session. Helplines, for example. I take particular care to make sure people who don’t have a trusted person in their life know how to get those resources.
Sometimes, if people don’t know exactly what our research is for, they give us information that we can’t act on. We don’t want people to relive difficult things if it doesn’t contribute to the research and inform later design work.
It can also feel like a betrayal for participants, if they share their experiences and later find out we can’t use that information.
Participants have a right to know how their contributions will be used in our work. So we have a responsibility to clarify the boundaries of our work.
To prevent that situation, I start the session by explaining very clearly what we want to learn. Then people are less likely to recount traumatic experiences unnecessarily.
Miriam
How do you prepare research participants for difficult questions?
Laura
I tell participants they don't have to answer any questions if they don't want to. At any point, we can move on to another topic. They can also take a break or end the session early.
And I plan the discussion guide to prepare for any potentially difficult questions.
Dealing with expressions of trauma during research sessions
Miriam
What signs of trauma do you watch for during research sessions?
Laura
Everyone manages trauma in their own way.
I watch for people becoming suddenly quiet and withdrawn, giving short answers, or seeming to freeze.
Sometimes people’s body language appears nervous, agitated, defensive, or protective. And some people talk rapidly, or in detail about a traumatic experience.
Miriam
And what happens if you think a research participant is distressed?
Laura
If I think a participant is experiencing stress or trauma, I acknowledge that the question or topic seems difficult. I ask if they want to take a break. I remind them that it’s okay if they want to end the session.
I listen and acknowledge them if they want to share their story. When it’s appropriate, I ask if they'd like to move on to a less difficult topic.
I keep a list of light topics to switch to. Music is my favourite, because almost everyone listens to music. So I ask what kind of music they listen to, how they listen to it, and in that way we move away from the difficult topic.
And I reassure people that they don’t have to share every detail of a process if they don’t want to.
Looking after the research team
Miriam
How do you take care of yourself and other researchers, designers or observers in the session?
Laura
I schedule sessions carefully. I split them across several days with plenty of breaks. It’s helpful to get outside and to do something completely different.
I plan 5 minutes immediately after the session for observers to stay online and check in with each other. And I make sure that other people in the session have freedom to log off immediately after that conversation.
I also maintain professional boundaries. I do that by reminding myself of what I can and can’t do as a researcher, given that I’m not a therapist.
Those boundaries limit my involvement with the participant outside the session. I can’t personally check in with a participant if I’m worried about them, but I can ask the agency we recruit through to use their process for checking on a person’s wellbeing.
And I reflect on how I’m feeling after the sessions. I plan time to look after myself. I have a list of things that work for me, like spending time outdoors.
Sometimes people just want to tell someone their story and want to be heard. I try to honour that as best I can.
But I’m also mindful of the effect it can have on me and other researchers in the session. In the back of mind, I remember that I can end the session, just as the participant can, if needed.
Regardless of how many times we’re exposed to traumatic information, we can be profoundly affected by hearing a person’s story.
Learn more about trauma-informed research
Laura recommends Cultivating Resiliencies for All: The Necessity of Trauma Responsive Research Practices by Matthew Bernius and Rachael Dietkus.
She’s especially keen to highlight the 6 principles for a trauma informed and responsive approach, which are:
- safety
- trustworthiness and transparency
- peer support
- collaboration and mutuality
- empowerment, voice and choice
- cultural, historical and gender issues
My personal recommendation is Kate Every’s article What stops us from being trauma-informed designers and researchers?
