Doing ethical research with vulnerable users

(This post has been sitting in draft for a few months. Today I was tagged in a discussion about researching with vulnerable/distressed people and I just pressed publish. The post started out as an email I sent to the UK GDS User Research mailing list on the topic of doing user research with vulnerable people.)

Background

In 2017-2018 I worked on a web service for compulsive gamblers created by a non-profit organisation (funded by the gambling industry) at the request of the UK Gambling Commission.

(NB: Many participants would disagree with this “compulsive gambler” label, but according prior research they were).

The service “epic user story” was for:

a compulsive gambler to be able to ban themselves from accessing online gambling websites and smartphone gambling apps

What follows below is a mixture of learnings I had about my professional work and how to conduct research with vulnerable users, and also advice to others who may need to do the same

Seek professional help!

I was reasonably comfortable with my approach in terms of ethics, and consent. However I still felt I needed expert psychological review of my approach to the work.

I made contact via a project stakeholder (who was also a trained clinical psychologist and addiction therapist) with a chartered psychologist and academic researcher also connected to the project.

This was because the project was going into a difficult psychological area which I was not trained in. I am not a professional psychologist. I’m a user centred design professional.

The purpose was to review my intial approach to the project, review my consent documentation, and “after research” support and care information.

They also provided me with some academic research papers to understand more. I used these papers to carry out a short literature review.

This lit. review helped me enormously to understand the psychological states my participants were in, their rational for their behaviour. It gave me a better understanding of the language they would use.

Remote / in person research

Initially I expected to carry out this research in person. In person research allows for more emotionally rich research – you can see the non-verbal communications we all make.

When it became difficult to carry out in-person research I switched to telephone and Skype calls.

This proved to be very successful. People seemed to open up and speak frankly. I can’t say why – if it was the distance, speaking to a “disembodied voice?

This was totally unexpected, but made for better quality research. The learning for me was challenge your expectations of research methods.

For the participants

Frame research clearly

In the pre-research session communications I made it very clear that I was not a gambling support therapist – I was not capable of discussing effects of gambling on the persons life. I was designing software.

While this may have an effect on limiting discussions about the reasons your participant has been become vulnerable, it should also limit cathartic but difficult conversations which you are not trained to deal with. This is to protect both the participant and youself.

Anonymity by default

Due to the potentially massively negative effects (financially, professionally, psychologically) on their lives of their gambling activities, I mandated this research would be anonymous.

The only person who would know the participants real identity was myself and my colleague who was present for the session.

When transcribing I removed all references to specific names, cities – I replaced them with geographic regions (e.g. north east/south west), companies, actual ages – I replaced them with ranges (e.g. 20-25 years old).

The transcriptions were available to my project team members but not the originals.

Clear scope, explicit consent

I made the research scope clear – I am researching how the participant needs to carry out this goal of banning themselves from gambling using the system we are building.

I explained I am not a trained counsellor and so cannot legally, give advice or support about gambling activity. I made sure:

  • I got clear written informed consent
  • that they understood they were free to stop the research session at any moment
  • that they understood they could refuse to answer any question

The purpose of consent is to put the participant in the position of power – not to have them “exert” this power, but to show them they can trust you. You will do no harm.

During my interviews, I asked personal questions. The purpose was to understand how they would react if they were asked a similar quesiton during the registeration process.

To my surprise, participants were very willing to answer them – they knew this service would help them deal with their current situation.

The “value” proposition was clear to them.

Be patient

Like doing research with participans who have access needs, you also need to be more patient with participants.

Some may want to go off the research topics, and you need to be more patient and empathetic with them than in a less emotive situation.

When they cried we took a break.

Be silent

Your job is being the user researcher. Listening to the participant.

When dealing with difficult topics, this can often mean a lot of silence. You’re job is to be comfortable with awkward situations. That often means being uncomfortable (within reason) so that the participant is not.

Be comfortable with silence.

Address research sessions confusions (and iterate)

After doing 2 pilot studies on the project I found some participants seemed confused – they seemed to think *I* was doing psychology research into compulsive gambling.

I adapted my research interview preamble to make this explicit – going to the point of saying it was against the law for me to ask about the psychological effect of their activity.

I listened and then tried to bring the conversation back on topic – the topic I was researching was what compulsive gamblers needed from the website we were developing.

Provide aftercare

Once the “research”part of the session finished, I gave the person some time to gather their thoughts, and reflect. This was often just 4-5 minutes of silence where nobody spoke.

Once finished, I then provided them with signposting to gambling support signposting in their community.

Some people may not deal well with the realisation they were a compulsive gambler. Some were genuinely not aware of the support available.

So you need to provide them with signposting to professionals who can help.

The purpose of this support is to shorten the gap between the decision and action to get the support – don’t just provide a national resource.

I gave participant a small flier with information about support they could access local to them – a telephone number, a local support office.

This was not judgemental, it was to assist them in the event they made the decision to follow it.

Respect, don’t patronise or sympathise

The participants I spoke with, even though their lives were in terrible situations, didn’t to want my pity.

They were very interested in helping as they waned to help others in similar situations.

I tried to keep my distance in terms of sympathy. Give them a tissue, not a hug. When they cried we stopped for a while.

If you feel you are beyond your capabilities reassess. Don’t be afraid of asking more experienced colleagues for help.

For the researcher

It is very easy to forget about the impact of research on the researcher.
Normally we are researching light-hearted topics. They don’t effect us much.

This was not one of those cases. After a solid week of interviews, hearing about the effects of the participants gambling activity started to have an effect on me.
I expected to hear some difficult stories but I wasn’t prepared for the sheer number of them.

On reflection the input of the chartered psychologist professional minimised this.

Do no harm (to the researcher)

I was not a professional psychologist and so needed support too. The psychologist who advised me on how to insure my research minimised any effects on the participants also had a lot of good advice most practical being – expect to be effected by the research.

I was planning a large portion of my research to be qualititative interviews, with formative and summative usability testing.

The chartered psychologist reminded me of some good supports to put in place for myself and the participants:

  • designate a colleague(s) to speak to about it when the research effects you. Speak with them regularly
  • it is acceptable to talk to this colleague about your feelings or reactions to the data you find
  • it is not acceptable to identify participants in any way or talk about the person individually, or their individual circumstances

(Personally, I was lucky that I had someone at home to talk about how the research affected me. This was very helpful.)

It was helpful to have a colleague with me at times (acting as “note-taker”). Post-research session we spoke about what we’d just heard, and we’d deal with the situation

Final thoughts

While this may sound like a terrible experience, it was anything but that. It stretched my user-centred design research skills greatly, but led to good, actionable, ethical research which was used to build a service that had a positive impact on it’s users.

Looking back, I don’t think I’d have done anything differently, except maybe taken more breaks between interviews.

Join the conversation

8 Comments

    1. Hi Steve,

      Thank you for your kind words.

      By “Signposting” I mean, providing the participant with as easy as possible to follow information to access professionals who could deal with any “harm” that may have come about as a result of the participants involvement with my research.

      I hope this example of a real experience from the research will illustrate –

      I interviewed one research participant. They begun by saying they were ‘in control of their gambling activity’. This is a phrase that is used as a measure of the persons state when gambling.

      As we got further into it they revealed the level of the gambling activity, the level of debt, the “covering-up” they had to do with their family, the stress and strain they were under.

      Towards the end of the interview they seemed to come to the realisation that they were in fact in a worse situation than they thought. My interpretation (which I came to myself) was when reflecting on what they told me it became clear the negative impact their activity had on them.

      I was not a psychologist and not qualified to give professional advice.

      At this point in any other research session, we’d say “well thanks for your time, here’s your incentive. Bye!”.

      In this research, this is where I brought up the sigposting. Looking back at my interview script, at this point I gave/emailed the participant my “post-research-helpline” information, which contained the signposting information, specifically:

      Our discussion today may have brought up some difficult memories or topics. If this is the case, we suggest you speaking with someone.

      You can contact the GamCare National gambling helpline. They have provide free and confidential support.

      Speak to an adviser using the freephone number 0808 8020 133. The helpline is open 8am to midnight, 7 days a week.

      There is also [support organisation name] in your city. They’re located at [address] and you can contact them by [contact methods].

      The person I describe above read it, made a big sigh and then said, “I didn’t know this existed. Maybe I need to call them. I don’t know what to do.”

      I don’t know if they did follow my signposting, but I hope so.

      I hope that helps.

  1. Superb insight Bernard. So pleased to see your considered approach getting such plaudits.

    I remember the Skype calls and how counterintuitive it was that this worked so well – perhaps better than having all those non-verbal communication in the room.. Which may almost have got in the way of what needed to be said.

    “This proved to be very successful. People seemed to open up and speak frankly. I can’t say why – if it was the distance, speaking to a “disembodied voice?”.

    Be very proud of what yuu achieved.

    1. Thanks Lawrence. It was a good experience and provided benefit for our users. Which is all that matters.

  2. Really interesting article. How did this work: “Once the “research”part of the session finished, I gave the person some time to gather their thoughts, and reflect. This was often just 4-5 minutes of silence where nobody spoke. ” – did you explain that you were giving them time for this or why you were doing it? Or was it just a pause at the end where they reflected on the session?

    1. Hi Gerry, thanks for your comment.

      Honestly, it depended on the situation. It was more a pause at the end of the session, I didn’t expressely say “and now we’ll have time to reflect”. It often started with a natural lull in the session.

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