The Ready Study is about improving access to good end of life care for people with learning disabilities in the UK.
Researchers want to talk with family members and paid carers about the death of a person with a learning disability who they knew well and who did not die from cancer or dementia. They want to find out about what happened at the end of that person’s life.
Supported by Marie Curie, the study is being carried out by researchers from University of South Wales, Kingston University London and University of Southampton. Learning Disability Wales and All Wales Forum of Parents and Carers are assisting the researchers with the recruitment of professionals and parents/carers in Wales who have cared for someone with a learning disability at the end of their life.
Researchers are looking for family members and paid social care support staff of people with a learning disability who died between 6 months and 2 years ago (not from cancer or dementia) to take part in a conversational style interview.
They would like to hear your experiences and thoughts on what happened during the last few months of life of the person you supported and cared for. For example, what you thought went well, as well as what didn’t, and how easy or difficult it was for everyone to talk about what was happening. The information you provide will be confidential and will hopefully be useful in improving care in the future.
You can find out more about the research and how to take part on the Ready Study website www.readystudy.uk.