Written by Andrea Bruun, Research Associate, Kingston University.

You may have seen the new resources we have developed for end-of-life care planning with people with learning disabilities. If not, then check out this webinar. From October 2023 to January 2024, we tested these new resources to get a sense of how they work in practice and what people thought about them. Are they useful? In the last couple of months, I have been diving into the data to try and answer this question. Let me give you a sneak peek of some of the findings.

A whole new world

Although this does not involve a flying carpet and a romantic duet by Aladdin and Jasmine in the sky over the city of Agrabah, some kind of magic has been in the air.

Staff who tried the resources told us how they had eye-opening conversations with people with learning disabilities. They were surprised how much people were able to talk about what they wanted for their funerals. In the feedback forms and focus groups, they said how people opened up, shared and gave very specific details about their wishes and ideas. Staff mentioned how there, until now, had not been a space for the person to share these thoughts. By using the resources, staff entered this whole new world with the person they support. Those who tried the resources also said how it was a positive experience; they had really engaging and good conversations about end-of-life care plans.

Funeral planning can be fun

Funeral planning and fun may not sound like things that go well together. However, when we developed these resources with our wonderful All Together Group, we always had fun (we also cried, but we were laughing a lot).

As part of testing the resources, we got some additional funding for me to video-record some of the funeral planning sessions to really see what happens in practice (How do people use the pictures and cards? What do they say?). When looking through the video-recordings, it is striking how there is laughter in all of them. People were laughing when using the resources. What is that about? Although, funerals, death, and dying are serious topics and very often sensitive and tender as well, fun can be had. I watched the recordings and laughed with them. People had the most inspiring ideas for their funerals and some of them was indeed fun. They were (obviously) not laughing through the whole session, but from time to time, they would laugh.

What does this mean?

These two findings are saying something important about the taboo that talking about death and dying is. The fact that using these resources has a “whole new world” factor means that we are not talking about it enough. We need to give people with learning disabilities the space to talk about these topics; they clearly have lots of thoughts and feelings to share. Once we give the person the space, make them feel comfortable, they can then open up, and fun can be had. Funeral planning does not have to be dire and dark conversations. In fact, all the recordings I have seen are indeed positive, beautiful, and a celebration of the person’s life and who they are. We need to break the taboo and talk more about death and dying in general. This will make these conversations easier. Using the resources may be a window into the new world. An important take-home message is that using the resources brings good and positive experiences with engaging conversations.

I have finished looking at the feedback forms and focus group data now, but I still have more work to do with analysing the video-recordings. I am excited to see what else the data will tell me. For now, let’s talk more about funerals, death and dying!