Unisson Disability, in partnership with a number of organisations, have released a world-first online resource to support people with intellectual disability understand end-of-life.
Researchers from the University of Sydney, Western Sydney University, HammondCare and Flinders University, in partnership with Unisson Disability and CareSearch embarked on a landmark project to ensure Australians with intellectual disability understand the concept of death and their own mortality, and are appropriately supported to comprehend and cope with end-of-life issues.
In a world-first, the Talking End of Life (TEL) project has been developed as a research-based online toolkit to support staff and carers to deliver end-of-life information to adults with intellectual disability, and discuss end-of-life planning in everyday contexts.
TEL reflects 10 years of Australian research on end-of-life and people with intellectual disability, with research demonstrating that currently, many people with intellectual disability encounter death without understanding what is happening, both when loved ones die or when they themselves approach death.
Professor of Intellectual Disability, Roger Stancliffe, from the University of Sydney asserted, “People with intellectual disability shouldn’t be left out of conversations about death and dying. However, our research shows that far too often they are, but that’s where the TEL toolkit becomes such a valuable resource.”
Western Sydney University’s Dr Michele Wiese commented, “Many people with intellectual disability have limited understanding of death and dying. One major reason for this is that other people won’t talk to them about these topics. Helping them to understand needs repeated participation in conversations and activities about end-of-life. And that is the basis of the TEL online toolkit – giving carers the information, skills, confidence and comfort to have these conversations.”
Gail Jeltes, General Manager for Client Services at Unisson Disability said, “People with intellectual disability already make important decisions about employment, relationships and living arrangements. So, with assistance, they can be supported to understand and plan for death and dying”.
Stancliffe went on “Our research shows that there are several key reasons why many carers avoid these conversations: fear of upsetting the person, concern that the person does not understand, carers feeling that they do not know what to say or how to explain dying and death, or carers sidestepping the topic due to their own discomfort. The TEL toolkit deals with all these issues to help carers such as disability support staff, have conversations about end of life in a supportive and sensitive way.”
The toolkit aims to equip direct support professionals and carers with the information to begin essential end-of-life conversations early. As Wiese added, “A key message in TEL is to have these conversations throughout life, starting when people are well.”
The ground-breaking project is supported by funding from the Australian Government Department of Health under the Public Health and Chronic Disease Grant Program and will launch on Friday 18 May, preceding National Palliative Care Week held on 20 – 26 May.
The toolkit comprises 12 modules on topics including what death is, funeral wishes, and bequeathing. Each module contains individual stories, video examples, practical tips, resources, and links to available research that underpins the content. The toolkit is available from Friday 18 May at https://www.caresearch.com.au/TEL/ and is free to access.
Contributors to the TEL Project:
Key contributors to the TEL project include Prof. Roger Stancliffe and Ms. Sarah Wagstaff of the University of Sydney, Dr. Michele Wiese of Western Sydney University, Prof. Josephine Clayton of HammondCare and the University of Sydney, Prof. Jennifer Tieman of Flinders University and Director of CareSearch, Ms. Gail Jeltes of Unisson Disability, as well as staff from CareSearch, Unisson Disability, Macarthur Accommodation System, and Summer Hill Media.
Listen to Gail Jeltes, General Manager - Client Services, talk about the TEL project on ABC LifeMatters Radio National Show :