Written by Andrea Bruun, Research Associate, Kingston University.
A key thing of The Victoria & Stuart Project is to use research methods that everyone can take part in. This often involves more creative ways of doing things and taking a lot of breaks. As our colleague Richard said in this video:
It might take all day just to discuss one subject, but if that's what it takes. Just that little bit of information is better than getting nothing out of is.
This week, our question for the All Together Group is: “What are the essential qualities and competencies of the people who support you with end-of-life care planning?” But we need to translate that question into an accessible format. Will what we have in our academic minds actually work with people with learning disabilities?
One of the many jobs of our colleagues with learning disabilities is to try this out. We see how they do the task we have in mind, ask them what they think, and we really couldn’t manage without their input. After such a session, we might discover that some things work really well, other things might need some changes to work, and a couple of ideas just need to go in the bin. This is co-production in action: a crucial step of the research process.
The fact that we need do things a bit differently to make the research more inclusive, makes the work so much more fun - and it also helps lift the mood when discussing a heavy subject that death and dying is. We often wear silly hats and dance around – and this week we dressed up our lovely colleague Leon.
To answer our question, you can write things on a flip chart. In an online meeting, you can use sticky notes on a Google "Jamboard”. Our Thursday All Together Group with family members, support workers, service managers, and healthcare professionals will do exactly this.
How to make that accessible? Here you can see how we used a sheet and wig to create a canvas that people could pin their pieces of paper on. Leon, now the canvas, represented a support worker who was going to help people think about their end-of-life choices. Everyone noted down what they would want him to be like.
As you can see, our own team had a lot to say (and a lot of fun), so we deemed it a success! So we will ask our All Together Group on Monday to do the same thing. We can’t wait to see what they have to say. Watch this space!