Webinar: How to co-produce end of life research with people with a learning disability

Abstract

I will tell you about two of our NIHR-funded studies: the Victoria & Stuart Project (co-producing a toolkit of co-created resources that help people with a learning disability to be involved in end of life care planning) and the DAPPLE Project (looking at models of palliative and end of life care delivery for people with a learning disability). Both projects involved groups of people with a learning disability.

In this session, I will use video recordings of these groups that will show you:

• How we made the Victoria & Stuart toolkit (almost 200 people were actively involved, including 36 people with a learning disability)
• How the DAPPLE co-production group works together to think about study findings

I will talk about the important principles of co-production, and why it is essential that we include the people who matter most. This might give you ideas that you can take back to your workplace – whether you do research or work with people with a learning disability, or not!

The toolkit is free to download at End Of Life Care Planning | The Victoria And Stuart Project
The DAPPLE project is ongoing: Palliative care, Learning disability services, end of life care, Dapple Project | end of life care for People with a Learning disability.

Biography

Irene Tuffrey-Wijne is a Professor of Intellectual Disability & Palliative Care at Kingston University, London. She leads the KIND (Kingston University Intellectual Disability) Research Group, which includes researchers with and without learning disabilities who do research together about death, dying and bereavement. The team has won several national and international awards for their work.

In the 1980s Irene lived and worked in L’Arche London (a community with people with learning disabilities). In the 1990s she worked as a nurse at Trinity Hospice, London. Since 2001, Irene has led a programme of research and development focusing on learning disability, bereavement and palliative care. She has published widely and presented her work in the UK and across the world, and is recognised as the leading international expert in the area of palliative care for people with learning disabilities. Inclusion of people with learning disabilities as study participants and as salaried researchers is a key part of her work. There is growing international interest in the KIND Research Group’s methods and development of creative ways to enable inclusion in research.

LinkedIn, Facebook, Instagram:

• Irene Tuffrey-Wijne
• The KIND Research Group