Doing user research with vulnerable adults

Since last year, we’ve been doing user research on a website aimed at people with type 2 diabetes and we’ve had the pleasure of talking to a variety of people from different backgrounds, ethnicities, ages and with a range of abilities and experiences. 

In previous rounds of research, we learned that people with learning disabilities have a higher risk of developing type 2 diabetes and we knew we had to do more extensive research with this group of people. 

We recently had the chance to facilitate a round of interviews and prototype testing with people with learning disabilities. It was an amazingly interesting experience, from the preparations to the interviews and usability tests. In this blog post we would like to share some of our learnings. 

Team up with local charities or organisations

Through conversations with the team and representatives from Diabetes UK, we learned of a local charity called Skills for People who are working hard to make sure disabled people and their families are well supported, in control of their own lives, and are able to be included in the communities of their choice. They are currently developing a face-to-face education programme about type 2 diabetes for people with learning disabilities. By talking with Skills for People and finding out about some of the needs and challenges their clients face, we could start to get a picture of who we should include and how the sessions should work. Without their help, these sessions would have been much more challenging to organise.

Invite carers and support workers

Some people might not be able to use the programme or service that you are building directly, but this doesn’t mean that they are not able to benefit from the information provided through other means. We learned that some people will ask a carer or support worker to help them with tasks they're less confident doing alone, such as reading or completing an application form. We therefore made sure we involved some people that would rely on a carer or support worker to help them use the service.

Treat people like adults

There can be a fine line between talking to a child and changing your words to talk to someone with impaired capacity. One of the participants explained how their interaction with healthcare professionals is frustrating as they either don’t relay information on her level or would treat her like a child. To avoid this we made sure to explain that they have the right to refuse to take part, that they could stop at any time and that they were in charge of this session. We also made sure that, if the person brought a carer or support worker, we spoke to the person and not their carer or support worker. 

Make paperwork more accessible

Before the sessions, we noticed our consent forms and incentive forms used words that might be difficult to understand. To make sure they were easier to read and understand we changed the font size, simplified the wording and added extra line-spacing. We also decided to ask if people wanted us to read the consent or incentive forms out loud.

We hope that sharing our learnings was helpful, and we’d love to hear the things that you have learned when doing research with people with learning disabilities.