#Weeknotes 24 (2 July) — Research sensitive topics with people in vulnerable situations
Update: Since this post, we’ve also delivered the talk at the Service design in Gov (SDinGov) conference in September 2021. The learnings still apply and you can find the latest 10 point checklist on the cxpartners blog.
I delivered a webinar today with my colleague Amy Bracewell on “Research sensitive topics with people in vulnerable situations” based on projects with Women’s Aid, Samaritans, Talk to Frank, and NHS England and Improvement where we conducted research that included topics such as domestic abuse, drug use, traumas and living with severe mental illnesses (SMI). This post aims to cover key areas of that talk.
How do you respond when your research participant just shared with you that they’ve attempted multiple suicide attempts in the past and have experienced an abusive relationship?
UX research requires us, researchers and designers, to speak with a range of individuals to learn about their world and behaviours. These topics can vary from light (personal consumption preferences) to heavy (abuse, suicide, homelessness etc). How do we respond when someone shares their past traumas with us? Sadly, the reality is that sensitive topics such as suicide come up quite a lot when you’re working in the mental health space. As researchers listening on the other side, it’s easy to feel underprepared and overwhelmed.
I remember in the beginning I felt anxious and unprepared for the conversations I’ll be engaging in. I had the imposter syndrome and didn’t feel qualified to talk about such hard and personal stories.
- What if I say the wrong things and trigger their traumas?
- What if they are in need of support/help?
- What if they struggle to share or trust me?
- What if they experience an episode in the session? What do I do?
The key to easing anxiety is to be prepared. We looked for inspirations from earlier projects with Women’s Aid led by our previous research director Emma Howell. Here are some things we did that helped to build our confidence and be better prepared when setting up these research sessions:
- Establish trust with your research participants
- Getting the language right
- Include champions
- Have support available
Before Covid, we conducted Women’s Aid research from our Bristol office labs.
We did a few rearrangements of our office space so that the space felt safe and comfortable for the women who had agreed to take part in our research. We stopped people walking past the research room, made sure it was out of the high traffic areas in the office. We made sure tea and biscuits were available and made the room feel less like an interview room, and more like a place for conversations. The adjustments in the space help to create feelings of trust where participants can talk to us openly about their experiences.
Incidentally, we’ve kept it like this ever since and it puts everyone, not just our vulnerable participants at ease!
With Covid and everything being remote, we couldn’t replicate that safety of the physical space but hoped since participants can join from anywhere, they might be more comfortable in their familiar environments where they have more control over their surroundings.
We arranged check-in calls the day before the scheduled research session to make sure participants would know what to expect and address any concerns. Often it would be their first time participating in research and setting the expectations and reassuring them help build trust. At the same time, this is an opportunity for the participants to get familiar with us and our voice. We had positive feedback from making these calls (as soon as they realised it’s not spam!).
Getting the language right
They’re also not SMI but people with severe mental illness.
I recall interviewing a man diagnosed with Bipolar disorder. He hated being associated with the illness and refused to take the medications and get support. He believed with his determination and strong mindset he can will the illness away. As much as I believe the mindset is a powerful thing and is inevitably linked to one’s physical condition, I know the illness he has can’t be cured in this manner. But it shows how much he did not want to be associated with having this illness and be looked at and treated differently.
Identity matters. So we need to respect that and ensure the language we use do not confine people in labels. We’re people first and foremost. We might have complicated life or health situations but they do not define us.
In addition to working with subject matter experts, we also leaned on change-makers.
When we worked with Women’s Aid, we invited community champion ambassadors and Women’s Aid staff to help shape our research process. It was a truly collaborative effort. This meant that the research techniques we employed not only reflected our clients’ objectives but we could also be sure that we were interviewing appropriately for the women participants.
For the NHS project, we ran a pilot session with a participant ahead of the scheduled research days and got their help in shaping the research structure and questions. We made it clear to them our intent and need for their help to shape the research process so the flow of the sessions would feel right.
Have support available
We have a clear duty of care to those who take part in our research and agree to share their stories with us. We therefore always provide aftercare to participants. This was especially valuable to the women who took part in our Women’s Aid research. Although we tread with the utmost care asking our questions, we have to understand that our sessions could evoke trauma or raise concerns with those taking part. We therefore always had a dedicated WA support worker contact who was available to provide support as and when any of the participants feel they need it after the sessions.
For Talk to Frank and for Samaritans we also shared a debrief sheet at the end of each session with the participants where they can get additional support. It’s about continuity and making sure that our participants know that there is help available after sessions, rather than leaving them with a thank you and goodbye.
What we learned from our research
The testing days can feel quite full-on especially if you have back to back sessions. We learned that our initial reservations and concerns at the beginning of the project were unfounded.
We found that:
- Sharing hard topics is consented to and expected
Since they agreed to participate in the research, people are willing and often more than open to sharing their life stories, however difficult, as they feel they’re contributing and helping others by participating. They’re motivated.
- Acknowledge but don’t dwell
We also learned that it can be hard to move on to the next question or follow up when you get hit with an experience T&T bombs (for traumas & tragedies). Such bombs I heard include abuse, multiple suicide attempts, and the loss of family passing. it can freeze you on the spot, especially if you haven’t a similar experience. But a notable healthcare professional who, for decades, had championed better care for people with SMI reminded me that:
“It’s a privilege that this person is sharing their deeply personal experiences with you.”
The best thing for us is to take their experiences and stories to transform services and products better. She’s so wise. We need to acknowledge their personal stories and situations but also not dwell too much and risk reopening wounds.
- Focus on (fewer) key research objectives
It’s easy to run over if the research is unstructured or semi-structured so try to have fewer research focus areas to allow room and space for conversations to take their organic directions and so you can get the right level of depth for findings.
- Always plan for extra time
Allow more time for sessions and in between sessions. You need time to reset from one story to another. If you’re conducting the research remotely, be prepared to encounter tech issues. Always have a phone backup option for the sessions which can come in handy when experiencing issues with remote research platforms.
and more importantly..
Safeguarding for researchers
Our learnings weren’t just about being considerate to the participants and safeguarding them but also safeguarding for us researchers. In doing these projects, I did a bit of research around the topic of self-care for UX, I came across some terminologies like “compassion fatigue” “burnout” and “vicarious trauma.” Phrases that describe the emotional and physical impact of being too close to your users’ pain points and problems. And realised this is a thing!
I came upon a great quote by Vivianne Castillo, a Sr Design Researcher and Innovation Consultant who said:
“We hold onto buzzwords like empathy so tightly because they’re almost a part of our identity as UX researchers. Yet, I don’t see or hear a lot of conversations [in UX] about psychology, counselling, or therapeutic relationships.”
and it’s so true. Not many researchers have the necessary skills and knowledge to recognise their own vulnerable states, how to protect themselves and their wellbeing.
Janice Hannaway and Jane Reid wrote a great article on self-care for researchers, they mentioned that “not only do user researchers hear similar content to that of a therapist but due to the nature of the agile environment, they will also hear it repeatedly…However, the main difference is that, unlike user researchers, therapists are safeguarded with regular clinical supervision.”
They argue that “we must protect the psychological safety of user researchers particularly when working with sensitive and complex issues.”We must also maintain solid boundaries for the protection of the participants, as the creation of false expectations can be damaging to vulnerable participants.”
Relaying the research insights and transforming personal stories
Conducting research appropriately and considerably is one challenge, once the analysis and the synthesising begins, we have another challenge. That is to turn the research insights into something tangible that the team can take away from.
Naturally, when we are interviewing people in vulnerable situations, it isn’t appropriate to record the sessions as we would normally. Without relying on recordings to refer back to, we still need to be able to pull through the voice of the participant and make sure their stories and experiences are reflected well in our research.
Hearing these hard-lived stories, it’s difficult to not feel attached or feel an extra sense of responsibility to spread these stories and turn their experiences as fuel to improve services for the better. Often the research we do, the nuance, the depth are in the researchers’ heads and those who’ve observed the sessions. Solely relying on a pdf research report doesn’t quite convey the richness of the findings.
How might we as researchers convey the participants’ stories that would also leave deep impressions into the minds of our team and stakeholders who make big decisions on how services are run and can truly make a difference for the cohort of people represented by our participants?
As Caroline Jarrett said beautifully: “My job is to learn about users” is a fallacy, in truth, it’s “My job is to help my team learn about users”. It’s not enough we keep these insights inside us and close to our hearts, we need them close to those who can make real differences in people’s lives. The organisations, service providers, development and planning teams.
While empathy maps and personas are great to gain deeper insight into our target audiences, they still don’t quite bring their stories alive. I can’t help but feel that they only scratch the surface of highlighting the richness of these personal stories.
So I started thinking: Can we take it further?
I thought about this on the NHS project after speaking with numerous people with severe mental illness. I kept thinking about the personal stories and journeys I hear about but not well articulated in the confines of a research deck.
So I played around with depicting a visual journey on the online whiteboard platform Miro and ran it through with the team. The result is an amalgamation of all the experiences I heard into a one-person journey in a linear approach. This visual timeline highlights key stages in where people with severe mental illness would be more at risk or vulnerable and how their conditions change while receiving support (or lack off) from the NHS. it’d highlight all the things that could go wrong, the anxieties that rise and traumas that get triggered at each stage. The goal is to use storytelling to make their lived experiences stick to the team members who can really make a difference.
The Timeline wasn’t a deliverable but I felt the need to do it and tell the story in a different way than the large research pdf report and empathy maps I’ve done previously.
Many other researchers have already been exploring this area of leveraging visual storytelling to playback research.
Researcher Gemma Sou turned her ethnographic research, following 16 low-income Puerto Rican families to understand their everyday experiences of recovery from Hurricane Maria, the ‘biggest storm in Caribbean history’ into a comic, which centres on the subtle social, cultural, economic and psychological impacts of disasters that go under the radar of the international news media.
Through this comic with the help of a London-based freelance illustrator, Gemma aimed to bring through the voice, personalities, humorous moments and hidden personal experiences of disaster ‘victims’. She created three-dimensional characters who express their emotions and unique personalities which we rarely see in mainstream media and academic research. She highlighted the capacities that families have to recover, thereby challenging the idea that people are helpless victims. The comic reveals how and why different family members experience disasters differently to one another — based on gender, age, and race.
Key things to keep in mind when researching around sensitive topics with people in vulnerable situations:
- Safeguard participants: It is crucial to keep the participants’ wellbeing front of mind. It’s essential that you prep well for this — create a safe space, focus on creating an environment of trust, lean on the expert knowledge you have in the room and make sure you have support available to offer to your participants.
- Safeguard researchers: This is just as important. Do keep a check on yourselves as researchers — set your boundaries, make sure you have a network of people who can support you and leave yourself plenty of time to decompress afterwards.
- Leverage storytelling: Use the power of narrative and storytelling to engage the team and empower them to carry on the stories and insights to improve services for the better. Explore visual journeys, illustrations, comics, videos, whatever way to get your team to absorb the insights.
- Keep learning and iterating: This is a no brainer. As with learning every skill, there is always room for improvement. The output of your work can positively impact these individuals’ lives. You should feel proud and privileged to be able to make a difference. Keep fighting the good fight. And let’s continue to learn from each other.
And that’s a wrap!
For a leaner takeaway, I published a page with a 10 point checklist for any practitioners tackling similar projects. It also includes the webinar slides and recording (once available): https://www.notion.so/cxpartners/Consider-this-10-point-checklist-when-conducting-research-around-sensitive-topics-with-people-in-vul-42a75bdffc3c425a9185f25ffefd42e9
Any feedback would be appreciated!