Talking to people with learning disabilities about death and dying

Project overview

The Oxfordshire Palliative Care Network wanted to enable people with learning disabilities to share their experiences of illness and loss, and provide them with opportunities to think about their own wishes for the end of their life.

Working with Style Acre, a local charity supporting people with learning disabilities and autism, they ran a series of four workshops with a small cohort of people with mild to moderate learning disabilities and their support workers.

Outcomes

Style Acre encouraged people to attend the workshops, and four people attended the whole series (others attended one or two sessions).

During the workshops, the facilitators used a rag doll called ‘Jack’ to help explore topics and scenarios. The group discussed what might happen when Jack became terminally ill, what end of life care he might need, how he might want to die and what would happen at his funeral.

The participants worked together to make spider-diagrams about their discussions. They created artwork about their personal wishes for the end of their lives, and memory boards about their loved ones who have died.

Working with the rag doll provided a safe way to talk about death and dying. During discussions, the group were able to share more specific opinions and lived experiences.

The people with learning disabilities who took part in the project said it helped them learn and understand, and that they liked remembering their loved ones and making friends.

The staff from Style Acre who were involved said they became more confident discussing death and dying in their professional roles.

Key facilitators

The  project used the principles of co-production and arts-based methods used by No Barriers Here to help marginalised groups of people explore their wishes for end of life care.

The team also consulted with the advocacy charity My Life My Choice, and the Learning Disability Liaison Nurse at Oxford University Hospital, to ensure they would be following good practice to work collaboratively and accessibly.

Before holding the workshops, the team held a meeting with people from the Style Acre community (including staff and people being supported). This enabled them to introduce the subject, prioritise what topics they needed to talk about, and co-design a way of working. It was clear from this meeting that people wanted interactive and creative workshops.

Challenges

The first workshop used Disney clips to start conversations about different beliefs. However, this proved very challenging for the participants. Some people became distressed, while others didn’t really understand what was being discussed.

While there was support in the room for people who were distressed, the team decided they needed a different approach for the next sessions. They needed to provide a clearer structure that allowed space for emotion but still enabled discussions to continue.

Using ‘Jack’ the rag doll was a brilliant solution. Jack was a tangible ‘person’ the group could talk about, but everyone understood that he wasn't real. When he ‘died’ in the last workshop, the facilitator put a blanket over him - a moment that the group found humorous.

Style Acre plans to use resources offered by the Oxfordshire Palliative Care Network to build a programme of activities about death and dying across the year.