#Weeknotes 24 (2 July) — Research sensitive topics with people in vulnerable situations

  • 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?
  1. Establish trust with your research participants
  2. Getting the language right
  3. Include champions
  4. Have support available

Establishing trust

Our research room before and after some enhancements to put participants more at ease in the space.

Getting the language right

The language we use matter and can really influence how people see themselves and others.

Include champions

Have support available

What we learned from our research

Here’s a summary slide from our webinar of our learnings when conducting research with people with complex lives.
  • 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.”

  • 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.

Safeguarding for researchers

A favourte quote by Vivianne Castillo expressing the need for self-care in UX.

“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.”

Relaying the research insights and transforming personal stories

Visual storytelling

I created this visual timeline for a recent project with NHS England and Improvement to better convey the stories of how people experience support (or the lack of) when it comes to their mental illnesses.
Gemma Sou’s work in turning her ethnographic research into a comic is simply brilliant!

To recap

  • 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.
Consider this 10 point checklist when conducting research around sensitive topics.

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Senior UX Consultant at @cxpartners | Mindful Optimist

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Julie Sun

Julie Sun

Senior UX Consultant at @cxpartners | Mindful Optimist

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