54. Stories that stay with us: Reaching a shared understanding of what matters most for people with a learning disability at the end of their lives

The DAPPLE project aims to understand the experiences of adults with a learning disability who are ill and approaching the end of their lives. By learning from people’s experiences, we hope to help improve the care and support available to others in the future.

One of the ways we do this is by spending time with people with a learning disability who are seriously ill, as well as speaking with their families, caregivers, and the staff who support them. We take time to listen, observe, and understand what matters most to each person.

Four researchers visit people with the aim of understanding their lived experiences. While our overall goal is to learn what helps people have the best possible experiences at the end of life, we look more broadly than this. What people have experienced and valued throughout their lives can tell us a great deal about what may matter to them as they approach the end of life. We try to build a full picture of each person’s life, not just their illness.

As a team, we meet regularly to reflect on what we have seen, heard, and felt during our visits. These conversations help us to recognise how our own experiences and perspectives may shape what we notice and how we interpret it. By sharing and reflecting together, we can compare and deepen our understanding. Over time, we begin to notice patterns across different services, helping us to identify what good care looks like and where improvements are needed.

We also work closely with the Better Care before Death group, which includes people with a learning disability. The group meeting together online once a month, together with people who support them. One function of the group is to help us to think carefully about the stories we gather and to understand what is most important from their perspective. Later, they will help us to develop recommendations and communicate what we have learnt from DAPPLE.

A few weeks ago, I attended a Better Care before Death group meeting to share the story of one of my participants. I thought this was quite a difficult thing to do.

One of our challenges I had was to bring together hours of conversations and pages of notes into a short, clear narrative that was easily understood. I felt the tension between conveying the richness of the person’s experiences and making the story digestible.

I wanted to support the group to have a meaningful conversation, without avoiding difficult topics. At the same time, I recognise that I had time to process what I witnessed, through reflection, supervision, and support from colleagues. The stories we share can prompt us to think about our own lives, but for group members, they may feel even more immediate and real.

Other researchers are sharing their participants’ stories and as we continue this work, we are finding that it raises as many questions as it answers. How do we share people’s stories in a way that is honest and meaningful, without overwhelming those who hear them? How do we balance being open about difficult experiences while also offering support? And how do we ensure that people with a learning disability are not only included, but are genuinely shaping what we learn and how we act on it?

These are not questions with simple answers. But they feel important, not only for our project, but for inclusive research more widely. By continuing to reflect, listen, and learn together, we hope to find ways of working that are both thoughtful and respectful, and that lead to better inclusive research practices and care at the end of life.

Written by Jonny Ding, Research Associate at Kingston University.