Consider this 10 point checklist when conducting research with people in vulnerable situations

UX research requires researchers and designers to speak with a range of individuals to learn about their world and behaviours. These topics can vary from light (personal purchasing decisions) to heavy (abuse, suicide, homelessness etc). 

On recent projects with Women’s Aid, Samaritans, Talk to Frank and NHS England and Improvement, we have researched domestic abuse, drug use, traumas and living with severe mental illnesses (SMI). 

This article summarises our learnings from research projects with people, who suffered abuse, trauma and or living with severe mental illnesses, to help fellow practitioners tackling similar challenges.

1. Assign a care person who’s outside the project

This person will check in with individual team members who are engaged with vulnerable groups as part of the research throughout the project. They can refer to the NHS mood assessment quiz when checking in.

2. Allocate more time—Scheduling of the sessions to allow time for debrief and break

For projects where you know you may engage with difficult topics such as suicide, chronic illnesses, traumas etc, make sure you have another moderator with you in the session and allow max one observer (ideally someone from the client side to get their engagement) Too many people in one session may overwhelm the participant and create the necessary nervousness raising anxiety.

If participants are using their phone, be clear on joining instructions (if using services like Zoom). Offer simple and private ways for participants to take part in the research such as phoning them when in the car.

3. Consult with experts

When creating discussion guides, make sure to have them reviewed by subject matter experts who are familiar with the target audience. E.g. relevant healthcare providers for patients, support workers for those with trauma and or living with abuse. Find out what is safe and appropriate when conducting research with these audience groups.

4. Ease participants into the research environment

If sessions are face to face, how can we make the environment more comfortable and familiar? Consider making your research space more like a living room than a lab

If sessions are done remotely, consider arranging check-in calls ideally a day ahead to introduce yourself as the researcher so they can be familiarised with you and your voice and it’s also a chance to ease any concerns on their side especially if they’ve never participated in such research. We can use the opportunity to set the right expectations, ease them in and pre-empt any questions and concerns ahead of time

5. Have trial runs when possible

Arrange Pilot sessions with target participants to get a better sense from the target audience what language and format feels natural and appropriate

6. Have follow up support available to participants

Lean on subject matter experts (for example, health workers or support workers) to see if there are ways to support participants post sessions should they need. For example, we shared a debrief sheet for survivors we spoke with for Women’s Aid at the end of the research session and this included a dedicated support worker they can reach out to if they need support in any way, along with other contact information and emergency numbers in case they’re needed. This is about not dropping participants off after we’re done with the research and showing that there’s a continuation of support. 

7. Give others a heads up

Let your partner/family members know about the projects so they can check-in and support you as and when needed.

8. Set aside time to decompress

We found that a decompression chat after the sessions can help greatly to offload a lot of that mental load and personal stories gathered. Consider scheduling a long walk while talking through what’s in your head with your research colleague, teammate or assigned care person on the project. Having the space to decompress can help you better organise your thoughts and allow space to refocus

9. Seek more support as needed

See if there is counselling available through your employer health plan. Take advantage of it even if you feel okay it’s good to talk through things with somebody.

10. Leverage the power of storytelling to share research insights

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 insights into fuel to improve services for the better. 

Use the power of narrative and storytelling to engage your client and team members who build these services and can truly make a difference for the cohort of people represented by your participants. Explore empathy maps, visual journeys, illustrations, comics, videos, whatever way to get your team to absorb the insights.

Research is also about storytelling

Check out how many other researchers are already exploring ways to playback research in more engaging ways. (e.g. Illustrating Anthropology, an online exhibition exploring human lives around the world through comics, drawings, and paintings of anthropological research: https://illustratinganthropology.com/)

References: 

• Why self-care matters in UX research, Vivianne Castillo
• Self-care in User Research, Janice Hannaway and Jane Reid
• Design patterns for mental health

This blog is adapted from Julie Sun and Amy Bracewell’s talk ' Researching sensitive topics with people in vulnerable situations' at SD in Gov on the 16th September 2021.