Posted on by Ela Gorla in User experience
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When running research with vulnerable people, such as people who have been bereaved, people in financial difficulty, or survivors of abuse or violence, it's essential to create an environment where participants feel safe and where researchers are skilled, supported, and able to work confidently and responsibly.
Here at TetraLogical, we run user research across a wide range of products, services, and industries. Sometimes we want to understand how people with disabilities currently perform tasks; other times we test the usability and accessibility of new products. In research sessions, we often hear about frustrating experiences participants had when dealing with inaccessible products or unhelpful interactions. There have also been occasions where recalling particularly negative experiences has triggered strong emotional responses in some participants.
In this post, we share some of the strategies we use to protect the wellbeing of vulnerable participants when discussing sensitive topics.
The very first question to ask is whether recruiting vulnerable people is necessary to the research. Even when a product or service is targeted at a specific group of individuals, those individuals may not necessarily need to take part in the study. It all depends on the research questions you are trying to answer.
Let's consider a web page that explains how to notify financial institutions that an account holder has recently died. If the goal of the research is to assess whether the information is easy to process and understand in stressful situations, then recruiting people who have recently lost someone may be necessary. However, if the research goal is simply to test the usability of the page, you can be more flexible in your screener.
When involving vulnerable people, protecting their personal information is imperative. The strategies described below can help with that.
Carefully consider what information you really need to answer your research questions, and focus your research on it. For example, when testing the accessibility of a product for people with disabilities, you can ask participants about the assistive technology or accessibility setting they use, but you don't need to know about the medical conditions they have. Similarly, when talking with individuals in difficult financial situations, you can ask about their experiences with applying for support, but you don't need to know how they ended up in their current situation.
This applies both when running research sessions and when recruiting participants. If using a third-party recruitment agency, it’s a good idea to look for one with experience in recruiting vulnerable people, so they know how to effectively screen participants without asking for unnecessary private information.
Protecting participants' privacy is a key aspect of any research. It becomes even more important when dealing with vulnerable people.
At TetraLogical, we follow the UK General Data Protection Regulation (GDPR) rules. This includes for example ensuring that no one outside the research team has access to the participants' data. Sometimes we may even decide to restrict access to the lead researcher working on the project. Using password-protected folders is an easy and effective way to do so.
You want to reassure participants that their data is safe with you. This is key to earn their trust and build rapport.
People should be provided with clear and accurate information on how their data is stored and managed. At TetraLogical, we include this information in the consent form and data privacy policy we share with participants ahead of the research, and encourage them to get in touch with any questions or concerns they may have.
Make sure participants are comfortable being recorded and observed during the research sessions.
Even when people have provided their consent by signing the Consent form, it's a good idea to ask again at the beginning of the sessions. If you suspect that recording a session may be source of stress or discomfort for a participant, you may decide against it.
Having people observing the sessions may also be uncomfortable for some. Again, you should check about it at the start of each session and ask the observers to leave the call if necessary.
Another essential aspect of running user research with vulnerable people is avoiding any action that may trigger negative emotions.
Knowing what you will discuss in advance helps people decide whether to take part in the research. This is especially important when the topics are sensitive or may remind them of traumatic experiences.
For remote research sessions, it may also help participants choose a suitable location. Not everybody may feel comfortable talking about traumatic experiences, addictions, or difficult financial situations in a public space, for example. Some may want to arrange for a friend or family member to be with them in case they need moral support.
Take extra care when putting together the discussion guide and when formulating follow-up questions during the research sessions.
If not chosen with care, words can trigger negative emotions and bad memories. A simple word like "friend" may cause stress to people who feel lonely, for example. Use language that is as generic and neutral as possible.
When running research with vulnerable people, it is not unusual for participants to start feeling unwell during a research session. People with disabilities may start feeling tired or sick; others may start feeling distressed as they remember a difficult or traumatic experience.
It is important to make it very clear to participants they can take breaks or end the session early if they need to, without having to give a specific reason. They can also decide not to answer some questions.
In cases where a participant becomes visibly stressed or upset, you can stop or pause the session. In these situations, it is important to reassure participants that their feedback so far has been valuable, so they don’t feel they've let you down.
As researchers, it can be difficult not to become emotionally involved when listening to participants talking about difficult or stressful situations. However, showing one's own emotions can trigger or worsen participants’ emotional responses. Remaining neutral throughout the research sessions is therefore critical.
Showing some empathy during research sessions is indeed good practice and helps establish rapport with the participants. However, you should not let your emotions take control. Remaining calm and professional in front of the participants helps them feel calmer, even when discussing difficult topics.
A simple "I’m sorry to hear that" can be an effective way to acknowledge how difficult a situation must have been for someone, without reinforcing or triggering negative emotions.
People are very unlikely to discuss sensitive topics if they feel judged or pitied. Using a wrong word can lead people to misinterpret your comments and close up. That's why it's important to choose words with great care.
A fundamental principle of inclusive language is to use neutral words that don't carry negative connotations. For example, if talking about people with disabilities you should say "a person who has a disability" rather than "a person who suffers from a disability". In the same way, choose neutral words when talking about addictions, traumatic experiences or a difficult financial situation.
Running research with vulnerable people can be challenging and emotionally draining. It's important that researchers look after themselves as well as the participants.
We all go through difficult periods in our lives and some topics may trigger bad memories. Don't be afraid to speak up if you are worried that a specific research project may impact you negatively. Not only would that be detrimental to your wellbeing, it would also impact the quality of the research.
Interacting with vulnerable people requires a specific set of skills and knowledge, and lots of practice. Even experienced user researchers should not underestimate the task.
Getting the right training is key; for example, many trauma-informed courses are available out there.
Learning from researchers with extensive experience in this type of research is also greatly valuable. You could look for a mentor inside or outside your organisation. For example, at TetraLogical we often mentor researchers on how to run sessions with participants with disabilities.
Find out about our Agile Usability Testing and Inclusive User Research Mentoring services, or read about Designing for people with anxiety.
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