Participant wellbeing

In a research session about accessible holidays, I was speaking with a lady. She became very tearful halfway through the session. Then she said that while we were talking, she had suddenly realised her late son wouldn’t be coming to family holidays in future.

You might not expect someone to be emotional when talking about holidays. When you start a research session, you invite people to share their story. This includes the emotions behind it.

When we ask people about using food banks, help with energy bills, or mental health we need to be prepared to support people. The chances of participants experiencing negative emotions is higher.

We have a specific ethics policy for our User Research at Scope, a large part of this considers the wellbeing of participants. From a researcher’s perspective this involves:

• following ethics
• managing risk
• holding space for emotions
• safeguarding procedures

We want to make sure that research participation is a space where people can:

• make choices about their contributions to the research
• take part in a way that is accessible to them
• reflect on experiences and express themselves freely

We want people to be able to do all these things without risk of negative consequences or judgement.

This post talks about parts of our ethics policy and practice to explain how we do this.

Do no harm

When I consider the phrase “do no harm”, my instinct is to feel that it isn’t enough. Is that the best we can aim for, the avoidance of harm?

The opposite of harm is “benefit”. I want to believe participants might benefit from taking part, often they tell us they do. But this is not something we can guarantee. We can’t control how people will experience our research, especially when we are talking about problems and inequality.

We try to make research enjoyable for participants and do more than the minimal avoidance of harm. But we are also realistic about our role in another person’s wellbeing. We are researchers not therapists.

Research is ‘the use of structured or systematic methods’ to find out about something. But we can still make research flexible and give participants agency.

Consent

Participants choose if they want to take part by giving consent that is:

• voluntary, participants agree to participate freely and without coercion
• active, we make sure they give consent by actively opting into a project by signing a consent form
• informed, we tell participants the projects purpose, how their data will be used, what will happen in the session and give them time to ask questions
• continuous, we check in with participants throughout sessions to check they are happy to continue. Participants can withdraw their consent during or after the research.

People who may be at risk

We balance the safeguarding of participants with the need to include their voices. We give people the information they need to decide if taking part is safe for them.

If we need to speak to people about a particularly difficult topic or recruit people with lived experience of traumatic events, we consider wellbeing related risks. These include emotional harm or re-traumatisation.

We have a script that helps us to:

• reduce the potential risk of psychological or emotional harm to participants
• provide information so potential participants can decide if they want to take part
• screen out people who say they are likely to be negatively affected by taking part in research

Script

“Because we will be talking about your experiences of [subject], this might be upsetting or distressing. We are advising people not to take part if they are feeling highly stressed or emotional, or if taking part could put them in danger. Is it OK if we ask you a couple of questions about this?

• Are you experiencing a high level of stress?
• Are you experiencing thoughts of self-harm or suicide?
• Do you think you or someone else is at risk of harm?
• Would you be at risk of harm if anyone else found out you were taking part in this research?”

If participants answer yes, we offer them the option to take part later or withdraw. If the participant is at risk of harm, we follow safeguarding procedures.

If someone cannot decide for themselves at the time due to their age or condition, we try to get assent from them. We also get consent from a parent or someone who can advise on the person’s wishes and feelings (consultee).

Adapting to preferences and giving agency

The time, pace, format and location of sessions are participant-led wherever possible. We adjust methods and materials to participants’ preferences.

In practice this means we might:

• use instant messenger, email or a survey instead of a video call for participants more comfortable with typing than speaking
• split an interview into shorter sessions instead of one block if a participant has limited time available
• change or skip the topics we talk about depending on participants comfort levels

To give participants control over what they contribute:

• Tell participants they do not have to answer any questions that they do not want to at the start of a session.
• Ask questions in a way that allows people to say if they do not want to answer. For example, “Is it OK if I ask about…”
• Remind participants during the session that they can take a break or stop taking part at any time.

Giving a framework and building trust

It feels counter intuitive but to make research flexible it needs some structure.

If we say, “this is your time to contribute to the research in whatever way feels right for you”. Without giving prompts, timeframes, or an indication of what we are looking for people will feel uncertain. We are giving people control but no agency.

To feel comfortable and share, participants need to be able to trust us.

We build trust by being open about our aims, telling people what to expect and explaining how we protect their anonymity and confidentiality. We describe what usually happens in sessions, offer different options, and ask them what they would prefer.

Making research accessible

Whether something is accessible or not has a big impact on how we feel. Making sure people are included and able to engage is fundamental to their experience of our research.

Scope takes a social model approach. This means people are not disabled by their condition or impairment. Barriers in society disable people.

The best way to make research participation accessible is to plan for it at the time of recruitment.

We:

• tell participants what usually happens in research sessions. For example, reading aloud, using software or tech, answering questions
• ask them if there is anything we can do to make the session easier for them

Then we have time to adjust research materials, plans, formats or timings ahead of the session.

If we know something is not accessible to people with a specific access need, we say what adjustments we can make in research invites. This way we make it easier for people to decide what adjustments they need without having to ask.

For example, Optimal Sort is not accessible to someone who uses keyboard navigation. We tell people this and say that we can share our screen and participants can direct researchers to drag and drop cards.

Once we have planned for and made adjustments in advance, I find the best things to do during sessions to keep things accessible are to:

• Check in to make sure people are comfortable and now is still a good time
• Be mindful of pace
• Be clear
• Explain to people what to expect and what will happen next
• Give time for people to ask questions
• Reassure people, “you can’t do or say anything wrong in this session”
• If you have been working for a while, check in with people to see if they need a break

Sometimes we get it wrong. If this happens, we stop and apologise. If it’s not too late, try to work out what adjustments you can make so that they are able to take part. If it is too late, figure out how to make sure it doesn’t happen again.

We are responsible for making things accessible for disabled people. We can make suggestions and ask people if that works for them. We can’t ask disabled people to make suggestions and fix our problem for us.

Sometimes disabled people will think the problem is with them. It is important to make clear to participants that they are not doing anything wrong. The problem is our inaccessible methods or materials.

Preparing for emotions

We want people to be able to express themselves freely during sessions. This includes how they feel. We don’t know:

• people’s history
• what kind of day they have had
• what mood they are in when we meet

Research sessions can prompt emotions regardless of the topic.

If a participant has an emotional response, we acknowledge this:

“I can see that this makes you feel [echo their words].”

Often people will want to talk about how they are feeling while we listen. To give participants control over what happens, we ask if they would like to continue, take a break, or withdraw from the research.

We all express our feelings differently. It is important not to make assumptions about how someone is feeling based on how they “seem” to us. This is why we ask questions about how someone is feeling, or echo their own words.

Ending sessions

We will end research sessions early if the participant is finding it difficult. It is a good idea to plan for how you will stop the session.

We avoid ending a session suddenly when someone has been talking about something personal.

If a participant starts feeling very emotional, or indicates they are thinking of hurting themselves we:

• pause the session but stay with them
• give the participant time to regroup
• assess the risk, for example ask:

“Tell me what you are feeling”

“Can you keep yourself safe?”

“Sometimes when we are upset, we can have thoughts of wanting to hurt ourselves or others. I am wondering if you are having these thoughts?”

If it sounds like someone is having suicidal thoughts, we ask

“Are you talking about suicide?” It is better to be direct.

If someone is talking about suicide, we assess the level of risk by asking about their plans and access to means. This information helps us decide whether to call 999 if the risk is immediate, before following our Safeguarding Procedure.

A work in progress

To continually improve our ethical practice, we want to:

• build on a trauma-informed approach in user research
• create recommendations for carrying out research with disabled people and their families that
• work with panel colleagues to improve our approach to participant wellbeing and aftercare
• apply safer spaces principles to our research and write a safer spaces statement to use in group research