People with learning disabilities should be at the centre of designing and testing ways to make planning for the end of their lives better. This paper describes how involving, training and employing colleagues with and without learning disabilities works in the Victoria and Stuart Project team. The Victoria and Stuart project aims to co-design a toolkit of approaches for end-of-life care planning with people with learning disabilities within social care settings.
People with learning disabilities were highly involved in designing the project. Richard Keagan-Bull and Amanda Cresswell (both researchers with learning disabilities) are co-applicants, and the views of the GRASSroots group helped to shape the application. The GRASSroots group of people with learning disabilities have been working together for over a decade. They have found out a lot about good ways of talking with people with learning disabilities about death and dying.
Richard, Amanda and Leon are Research Assistants with learning disabilities who are employed on the Victoria and Stuart project. Richard and Leon completed an 8-week Kingston University research training course for people with learning disabilities in 2019 and were authors on a paper about their experiences. This course helped to prepare them for their current Research Assistant roles.
The first part of our work together is to find out about what people with learning disabilities, their families, and health and social care staff, managers and policy makers think about planning for the end-of-life. Focus groups with people with learning disabilities were planned by Richard, Amanda and Leon alongside their colleagues. They use approaches such as games, picture stories, and signs to express feelings about different parts of end-of-life care planning.
This paper presents the focus group findings and the beginnings of our experience led co-design process. We are starting to design approaches and resources to support people with learning disabilities in planning the end of their lives.
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