In memory of Derek Coyle. Image artwork copyright Derek Coyle, an artist supported by Sunshine's Community Access Program Art Studio.
DYING TO TALK: COMMUNITY LIVING STAFF HELPING PEOPLE WITH INTELLECTUAL DISABILITY TO UNDERSTAND AND PREPARE FOR THE END-OF-LIFE
Like all Australians, people with intellectual disability have a fundamental human right to information about dying and death so that they can understand and make preparations for it. Currently, many people with intellectual disability encounter death without understanding what is happening, both when loved ones die or when they themselves approach death.
The Centre for Disability Research and Policy at the University of Sydney, in partnership with the Lorna Hodgkinson Sunshine Home (Sunshine) and Keele University, have commenced a three-year ARC Linkage project (2013-2016) to address this issue. The project team comprises Professor Roger Stancliffe and Dr. Michele Wiese from the University of Sydney, Associate Professor Josephine Clayton from HammondCare's Palliative and Supportive Care Service and the University of Sydney, Professor Sue Read from Keele University, and Ms. Gail Jeltes from Sunshine. The Dying To Talk project aims to ensure ensure that adults with intellectual disability know about the end of life and receive support to make decisions and plans for it. The team will develop and trial a system of training staff of community living services to achieve this aim. Specifically, the research team will:
- Determine end-of-life understanding by both adults with intellectual disability and community living staff;
- Use these findings, together with the clinical and research evidence base, to design a training toolkit for staff to assist adults with intellectual disability to better understand dying and death, and to trial this over a six-month period in which trained staff will deliver individual intervention to clients through discussion of end-of-life planning in everyday contexts;
- Evaluate the impact of using the toolkit on both staff and adults with intellectual disability with respect to a) their understanding of dying and death, b) their knowledge of planning for the end of life, c) documented end-of-life plans by people with intellectual disability, d) their emotional distress, and e) their fear of dying and death.
These findings will be the first in the world to provide an evidence base for the consequences of educating people with intellectual disability about a universal condition that inevitably touches every individual.
Listen to Dr Michele Wiese being interviewed about the END OF LIFE project on radio 2SER
For more information about the Dying To Talk project please contact:
T: +61 2 9351 9984
T: +61 2 9036 7418
Centre for Disability Research and Policy