This event is part of the CDAS Conference 2024: Death and Communities. Links to join the event will be sent to all conference ticket holders, but is also free to attend for anyone who would like to join. If you are interested in attending the full conference, full details and tickets can be found here.

“Make it fun!”

Is research about death and dying too difficult or upsetting for people with learning disabilities? Many clinicians, families and researchers worry that it is – leading to exclusion. But how can you really find out what matters to people at the end of life, and how we can improve things, if we don’t include them? Over the past two decades, we have worked with people with learning disabilities as research participants, advisors and co-researchers in this area. In our opening plenary for the CDAS Conference we will reflect on this experience, with Stuart exploring the history of work in this area and Irene reflecting on how to do research. In her work four researchers with learning disabilities, employed at Kingston University, have co-facilitated focus groups and a co-design group who developed resources for meaningful involvement in end of life care planning. Building on Stuart’s reflections on the field, Irene will share some of the methodologies and approaches her team has used – including the importance of creating a truly safe space – and making it fun! Expect pictures, music, hats and games…

Professor Stuart Todd has a career long interest in research in intellectual disabilities. He is a sociologist and based at the University of South Wales and a is lead for the Unit for Development in Intellectual and Developmental Disabilities (UDDID). His interest in death related research in this area stemmed from research work of parents of people with learning disabilities where it seemed death, in different guises, seemed a prominent feature in accounts of their lives as carers. His work has focused on parental bereavement, the death perspectives of people with intellectual disabilities, and patterns of death and dying, and the challenges these pose for people working in intellectual.

Professor Irene Tuffrey-Wijne (RN, PhD) is Professor of Intellectual Disability & Palliative Care at Kingston University London. She has extensive clinical experience in both intellectual disability and palliative care services.

Since 2001, Irene has led a programme of research and development focusing on intellectual 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 intellectual disabilities. Inclusion of people with intellectual disabilities as study participants and as salaried researchers is a key part of her work.