User research, design and trauma: understanding practitioner experiences

Image credit: Anika Huizinga via Unsplash.

Content note

This post mentions examples of traumatic events but does not go into detailed descriptions of events.

Understanding practitioner experiences of research and trauma

Back in February 2023, I conducted a survey to find out more about practitioner experiences of trauma in research and design. Here’s a snippet from the survey about its purpose:

“I have recently been having lots of conversations with colleagues across different organisations about trauma-informed research. As these discussions have gone on, I’ve learned that these practitioners all have a story to tell about experiencing research that was potentially traumatising for themselves as the facilitator, or re-traumatising for the participant involved. Personally, I have similar experiences too.

My hypothesis is that these experiences are more common than we think, and that more should be done to equip researchers and designers for these scenarios.

I also get the sense that practitioners sometimes experience shame over these experiences, saying things like “I really should have been better prepared, I didn’t realise that was going to happen”. I hope in sharing our stories, we can realise that this isn’t an individual failing but something which needs more system-level intervention. I also hope to raise awareness of the concepts and definitions of ‘trauma-informed research and design’ among participants of this survey.”

I’ve written this post to reflect what I heard from the survey respondents. I want to give a heartfelt thanks to those who took the time to share their stories with me. Many of the responses were difficult to read. I imagine it was challenging for the respondents to remember the events and describe them in their survey responses. I truly appreciate them sharing their stories with me, and I hope we can gain some learning from sharing our collective experiences.

Method

Research method

This was not a formal study by any stretch, but I wanted to detail out my method as I know many people reading this will be researchers and might be interested. The survey had 4 closed questions (yes/no/other), and 2 open questions.

For the qualitative responses, I used affinity mapping to identify themes and draw out insights.

I created the survey in Google forms and pushed it out via my networks, including: LinkedIn, the Ethical Design Network, and xGov community slack. Read the original survey here: Research and trauma: understanding practitioner experiences

Participants

I didn’t ask for participant information as respondents had the option to be completely anonymous. The only criteria I set was:

“You are invited to take part if you have prior experience of researching or designing services or products with users. This can be in any setting or sector. You do not have to be the person who was leading the research. I am also interested in your experience if you have been an observer or a facilitator.”

Since it was unmoderated, I cannot be sure that every respondent falls into that category.

From the responses, I can glean that the majority are from research and design professions (design in a broad sense, including content design, not just visual design). People discussed working in both private and public sector settings, though most examples refer to public sector projects. I do not have any details on demographics or access needs, as I did not ask these questions.

Limitations

As I said, this was never intended to be a formal study. I wanted to dig into the topic further, as it’s something I care deeply about and was hearing more and more from colleagues about the experiences they were having. If anything, this is a pilot to see if my hypothesis (above) has any legs and to provide some impetus to conduct further in-depth and rigorous research.

Also, I am not a researcher, I’m a service designer. Whilst I have made my best efforts to adhere to research best practice, there are sure to be things I’ve missed. I would love to team up with researchers to conduct further work in this area, if people are interested — more on that below. I have also been working on this alongside my day job, and did not have the time or resources to do something more widescale.

As such there were many limitations. To name a few:

• Respondents were self-selecting based on where I shared the survey, so may be skewed to particular groups
• The survey was only digital. This will have excluded non-digital respondents and some respondents with access needs
• There was a small sample size of 22 respondents
• To enable anonymity, I did not ask for any demographic data or details about projects/workplaces so we can’t identify trends based on organisation or sector

Summary of findings

Quantitative data

I asked several closed questions to understand whether respondents had an awareness of the topics of trauma and trauma-informed practice.

These are the questions and findings:

Have you come across the concept of ‘trauma-informed research and design’ in your work before?

14 — yes

7 — no

1 — other

Have you ever had training on trauma-informed research or design?

9 — no

8 — no formal training, but I have done reading and/or self-study

4 — yes

1 — other

In your work, have you ever encountered a research scenario which you didn’t feel equipped to deal with in the moment? For example where the participant has become distressed, or disclosed some personal information.

18 — yes

4 — no

In your work, have you ever experienced secondary trauma from hearing the stories of research participants? (I included a definition of secondary trauma here.)

13 — yes

6 — no

3 — other

Qualitative themes

The qualitative insights came from the following sources:

• When asked whether the respondent had ever encountered a research scenario they didn’t feel equipped to deal with, 18 said yes. They were given the option to share details of the experience if they wanted to. 15 respondents gave further details.
• When asked whether they had experienced secondary trauma, they were then asked: “If yes, what did you do to support yourself following that experience?” 16 respondents gave further details.
• There were also several qualitative responses from where people selected ‘Other’ in the closed questions, and from the final question: “Please share anything else you feel is relevant to this discussion.”

From the analysis, I identified 7 main insights split across 3 themes:

• Theme 1: Prevalence of trauma in user-centred design work
• Theme 2: How respondents manage challenging encounters
• Theme 3: Lack of structural support

Insights

Theme 1: Prevalence of trauma in user-centred design work

The majority of respondents have encountered scenarios where participants spoke about their trauma or were triggered in the session. 15 respondents spoke about this in detail, giving examples from their work of research sessions where participants became distressed, or disclosed personal trauma to the respondent.

Insight 1: Most respondents have encountered scenarios where participants spoke about their trauma or were triggered in the session.

Across the 15 qualitative responses, respondents mentioned research participants discussing the following subjects within a research encounter: serious and traumatic health issues; bereavement; losing a child; mental health; genocide; sexual harassment and abuse by people in power; sexism; racism; harm at the hands of the NHS; poverty; unemployment; fear of losing home; AIDS; experience of being scammed; rape; and eating disorders.

Multiple respondents mentioned participants explicitly talking about being suicidal within a research session.

I have decided not to share any quotes specifically related to my respondents research participants and what was disclosed in those sessions. I do not feel these are my stories to tell. I will, however, share some quotes from the respondents about their reaction to the scenario, and the impact it had on them:

Respondent 18: I felt unprepared to support the research participant and let down by our organisation. This was also at the same time as supporting a family member who was also experiencing thoughts of suicide. I really struggled to pull myself out of a hole in the weeks following that.

Respondent 3: It may have been the first time anyone has asked them about their surgery, so in recounting their experience, it was triggering for the participant as well as placing the researcher in a very difficult situation.

Insight 2: The need to be trauma-informed does not only apply to when researching subjects that we might consider sensitive or triggering. Trauma can come up when we do not anticipate it.

Some of these subjects came up in domains where you might anticipate some discussion of trauma. For example research about Universal Credit, or related to the work of the Ministry of Justice.

Other discussions of trauma came out in contexts where the respondents didn’t expect it. For example when working for a clothing company, in banking, around communications promoting healthful behaviours, or grant funding.

Respondent 1: It brought to light for me how even if you are speaking to someone on a ‘neutral’ topic, you need to be prepared for them to share parts of their lives with you that you may not anticipate, and may be difficult topics

Respondent 6: I had a participant who clearly needed to be heard out about the recent death of a family member and I ended up not recording our session at all and had to serve almost a therapist role, as I was in some ways a captive to the time period of the study session

Respondent 19: I worked on the food box service for vulnerable people who were shielding during covid. On the face of it we were usability testing a small interface for people to sign up to the service. In reality we uncovered all sorts of other things. It was scary and shocking.

Theme 2: How respondents manage and respond to these encounters

The majority of people I heard from had never had any formal training in trauma-informed practice, from their employer or otherwise. Despite this, 18 out of 22 of them had encountered trauma in their work, and had to deal with it in the moment, and afterwards.

Insight 3: Despite not receiving training, respondents use their skills, experience and resilience to manage challenging research encounters where they don’t feel equipped

Sometimes their response to the situation comes from prior experience outside of user-centred design professions, for example when volunteering or from their personal experiences with mental health:

Respondent 18: I had to handle police, local councils, internal safeguarding reporting, plus supporting the researcher all on the fly, based on instinct. That instinct came from having previously trained as a Nightline Volunteer (like Samaritans), and without that I truly think we’d have both been under water.

Respondent 6: I myself have PTSD from something long before I became a researcher so I am very familiar with the signs someone is being triggered, which has helped me to deal over the years.

Sometimes they respond on a human level:

Respondent 17: As a researcher I was seriously out of my depth here and way off topic, so I just stayed in my own personal human mode. I just let them tell me their awful story. I didn’t feel I could do otherwise. We’d invited openness and honesty on a personal and sensitive topic. I couldn’t shut them down for taking us at our word. Despite my own feelings, and with my own tears just barely held back, I sat and just listened…I asked [them] how they wanted me to playback to my agency and, here’s the big pressure, they said “I’ve trusted you with my story and I trust you to pick out what you need whilst protecting my anonymity and issue”

Respondents talked about using a range of skills and techniques in these scenarios: open listening, stopping recording, stopping the session entirely, offering water and a break, referring the participant to local free therapy, and human touch (where it was initiated by the participant).

8 respondents mentioned having done self-study and reading to understand more about trauma and trauma-informed practice, despite not having formal training. This is another way they equip themselves for challenging scenarios.

Insight 4: Despite the majority not having received formal training, respondents have a range of methods to care for themselves after a difficult session

Again, they use their skills, prior experience, and resilience to resource themselves after a difficult or distressing encounter with a participant. Many gave examples of how they do this: therapy, self care, speaking to a mental health first aider, speaking with colleagues, investigating options to help the participant, listen to calming music, meditation, exercise, getting out in nature, supervision from line manager, managing time and energy carefully, eventually asking to be moved off the project, talking to a partner at home, shifting to a different part of the industry, cancelling their next call/meeting, refocusing to the purpose of their job (improving services), preparing more for next session, advocating for the user to the team/stakeholders/leadership.

Respondent 22: I found debriefing with a colleague after a long or shocking interview was necessary I couldn’t just jump on a stand up

Respondent 9: For my work context, I sought out support resources through my organization on how best to respond/where to direct reports if the topics came up again, and for myself — I practiced self care by setting healthy work boundaries, practicing meditation, exercise, and getting outside in nature.

Respondent 14: I always try to channel the feelings into doing the best work I can, doing as much as I can to improve the services I work on. I don’t feel that this is all that healthy though, often because what I can do is so limited by so many things.

Insight 5: Some respondents experience secondary trauma as a result of the encounter. Others didn’t identify with having experienced secondary trauma, but identified experiencing other emotions including anger, guilt, and powerlessness.

13 respondents said ‘yes’ when asked “In your work, have you ever experienced secondary trauma from hearing the stories of research participants?”

Respondents also mentioned a range of other emotions they have experienced following research. They don’t always identify these as secondary trauma. They mentioned anger, burnout, self-blame, intrusive memories, guilt, distress, or being reminded of their own trauma.

Respondent 22: My experiences were with people who had had surgery go wrong and weren’t believed. I wasn’t traumatised but I felt strong feelings of injustice compassion and anger.

Respondent 9: Not necessarily “secondary trauma” as defined by this definition, but experiences with reports of trauma in research sessions have reminded me of my own personal experiences with trauma.

Respondent 13: I’m prone to depression anyway, nevertheless I have occasional but unpredictable ‘intrusive’ memories of that room, of the view out of the window, and of the faces of those guys. I never categorised it as trauma.

Some minimised their own experience, characterising it as ‘silly’ or ‘nothing on the patients’ experience’:

Respondent 14: I often wonder if other designers are affected by this, or if it’s just me being over-sensitive! … I don’t know if it’s even classifiable as secondary trauma and feel a bit silly even talking about it but yes, I have felt upset, guilty, and distressed.

Respondent 3: I didn’t specifically experience trauma, but I became much more emotionally involved than a standard UX design project. As a result, my general anxiety levels were much higher and I wasn’t able to disconnect at the end of the day. I minimised this as ‘my experience was nothing on the patients’ experience’. However, this isn’t a great coping mechanism and only invalidates any trauma I experienced (even if the overall effect was minor).

Several spoke about the feeling of powerlessness or the inability to do anything with the information:

Respondent 14: It’s often really upsetting for me. I often feel terrible guilt about how little I am able to help people, how little I can change, how little power I have to be useful.

Respondent 22: Sometimes patients confessed shocking things of treatment in hospital that I didn’t know what to do with.

One participant called out that it’s not just single experiences, but ongoing exposure, that has an impact:

Respondent 14: But actually, it’s not just one thing or one experience — it’s more this low-level, regular exposure to people in quite desperate, precarious situations.

Theme 3: Lack of structural support

Insight 6: There is not enough focus on the wellbeing of researchers and designers.

Not enough focus is placed on the wellbeing of people working in these professions. For individuals this leads to burnout and negative impacts on their wellbeing and mental health. For the industry, the impact of this could be professionals moving roles, or leaving the industry altogether.

Respondent 6: I have had a therapist since basically I started working in research and realized that part of the experience was an onslaught of people needing to be heard. At my current job I have less issues than the one before that (just a different type of product, my participants frustrations are more mild) so that was part of how I dealt with it… shifted to a different place in my industry. But I still wonder if I’m doing enough for my mental health.

Respondent 16: I ultimately, asked to be moved off [the project]

Other stakeholders and team members may not realise how difficult it is to bear witness to people’s stories and then have to play that back to a (sometimes ambivalent) product or service team.

Respondent 14: I feel that designers can carry all the weight of this sometimes — we go out and do the research and see what people need first hand, we come back and talk about it and advocate for as much as we can, and so often little or nothing can change, or change is painfully slow.

Respondent 17: Most researchers are aware of the trust and responsibility placed on, and sometimes in us, and we are by nature compassionate curious people; but this also makes us vulnerable. It’s easy to push aside your own needs esp in a fast paced environment with tight timelines. But self care is essential and an imperative. Things are changing, but slowly.

Insight 7: There is often inadequate support from organisations.

Organisations lack processes, policies and defined support mechanisms for people doing this work, who may encounter or experience trauma. Several respondents mentioned the lack of support they receive from their organisations:

Respondent 7: In roles in the public sector I was quite shocked at how little safeguarding training is given to researchers, how little focus is on the wellbeing of participants and researchers, and just in general how little we’re talking about being trauma-informed.

Respondent 17: Later called my agency to talk through [the traumatic research encounter]. They weren’t interested. Told me just to put into analysis grid.

Some suggested ways to address these issues. These were based on process and policy change at a structural level:

Respondent 17: We also need to have processes in place to help researchers anticipate and manage tricky situations. Hopefully building confidence and competence without totally terrifying or stultifying them. Best practices which are flexible enough to meet the needs of both researchers and participants. We have a responsibility to everyone involved.

Respondent 3: Standard practice for these scenarios should be an intro session with a patient representative. For example, someone from the Care Quality Commission, an established patient rights group, or similar. The aim being to introduce the researcher to the surgery type, and explain the type of life-changing symptoms a patient may experience. Simply reading about the surgery is not enough, as it only allows the researcher to think about the lived experience in an abstract fashion.

Respondent 17: If we are genuinely committed to self care — because we never do know what we’re walking into — we’d be scheduling interviews differently. Leaving bigger gaps between appointments and spacing out fieldwork more. We then have the time for self care if we need it. If we don’t we can do a bit of analysis as we go. Win win!

Summary discussion

My reflections on what I heard

My biggest reflection is that my original hypothesis holds water, at least in this specific group of people. The hypothesis:“these experiences are more common than we think, and more should be done to equip researchers and designers for these scenarios.”

It was upsetting, but perhaps not surprising at this point, to read about the experiences that colleagues in the industry have gone through. I’m hearing more and more stories from people who aren’t adequately equipped by their organisations to go into these situations, and the negative effect that can have on their own wellbeing. There is also the risk of re-traumatising research participants through the research encounter. As I’ve noted above, many respondents have their own strategies for handling difficult encounters and supporting their participants but this needs to be formalised. I believe we all need a thorough grounding in trauma-informed practice to avoid harm to our participants and ourselves. We need to learn from people working in social work, mental health, crisis support and many other areas. There needs to be more interdisciplinary working. Not just within digital and UCD, but across domains.

Organisations are not proactively training their staff, even when it’s likely (or even expected) that triggering content will come up in research. Why?

I heard examples from people working in health, on services to do with benefits and unemployment, Covid services, and in the justice sector. For these areas, at the very least, we should assume that our users and research participants could have experienced (or be experiencing) trauma. We should be prepared for that eventuality. I think our organisations need to do better to equip people.

This is quite nuanced, because what I’m not doing is blaming individual designers or researchers. They have very often done their best in very difficult situations. They have done extra study to learn more, and to apply what they’ve learned from prior experience or outside the industry to help in these encounters. What I am doing is blaming the structures and organisations that think it’s acceptable to put people into these situations without adequate training or support. I believe that needs to change. And we as UCD professionals need to push for that change.

My second reflection is actually from one of the respondents, I thought it was a brilliant point so have included it here in full:

I’ve done a lot of thinking about this and really strongly believe that being trauma-informed MUST be grounded in design justice and the prioritisation of equity, otherwise if we’re not recognising systemic injustices and power imbalances in our work, we will always be risking the re-traumatisation of others. I actually feel like this is still an area that not all URs connect with being trauma-informed — which for me is a problem.

My reflections on the process of doing this research

This process has been difficult. Not only was there a large amount of information to synthesise, the subject matter was particularly difficult. And this is the insidious thing about trauma, I’m (at least) two steps removed from the people who experienced the trauma, and reading the stories was still very challenging for me. I didn’t think enough about that when I embarked on this.

In order to practise good research self-care, I needed to build in more breaks when working through the data. Instead I found myself getting overwhelmed with what I was reading and putting it all away for a while. That’s meant I wasn’t fully accountable to the people who shared their stories with me, and have taken longer than I intended to get back to them. This is a learning I need to take forward as I do more primary research into this topic.

Conclusion and next steps

This post has been very long so I’ll keep this brief. I think more work needs to be done in this area at a structural level in the UK, and particularly the public sector. I know lots of brilliant people are working on this in their own areas — I’ve spoken to lots of them. I’d love for more of us to link up and see how we can push this forward together. We can work together to think about strategies to better protect our colleagues, our participants and ourselves.

If you work in user-centred design professions in the UK, and would like to team up on this, please reach out. I’d love to look at what we can do together.

Also, if you work in this area and you have good examples that should be amplified — please also reach out. I would love to learn from what is already going well in the industry.

Resources

If you’re looking for more on people already doing this work in the UK — these are some of the resources I’ve found, and people I’ve spoken to:

• Janice Hannaway and Jane Reid deliver training on how to take a trauma-informed approach to user research. They particularly focusing on researcher self-care and vicarious trauma: https://researchutraining.com/
• Bright Harbour have open sourced their research artefacts, including a comprehensive participant wellbeing pack
• GOV.UK service manual has guidance on researching emotionally sensitive subjects: https://www.gov.uk/service-manual/user-research/researching-emotionally-sensitive-subjects
• Scottish Government have published a trauma-informed practice toolkit
• The GOV.UK Design System Team have talked about taking a trauma-informed approach to component design for the Exit this page component
• Kate Stulberg has written about her and Josefeen Foxter’s exploration into strengthening safeguarding protocols at NHS Digital for researchers and participants
• Rachel Edwards has written about applying trauma informed principles to content design