In a world-first, the Talking End of Life (TEL) project has been developed through a partnership between researchers from Western Sydney University, the University of Sydney, HammondCare and Flinders University and in conjunction also with Unisson Disability and CareSearch.
The landmark venture assists Australians with intellectual disabilities to understand the concept of death and their own mortality, and also offers assistance in comprehending and coping with important decisions and issues.
TEL reflects 10 years of Australian research on end-of-life and people with intellectual disability, which demonstrates that many people can encounter death without understanding what is happening; both when loved ones die or when they themselves approach death.
Western Sydney University’s Dr Michele Wiese from the School of Social Sciences and Psychology commented, “Many people with intellectual disability can have limited understanding of death and dying. Helping them to understand requires repeated 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 discussions.”
Professor of Intellectual Disability Roger Stancliffe from the University of Sydney said, “Our research shows there are several key reasons why conversations about death and dying are avoided: fear of upsetting the person, concern that the person does not understand, not knowing what to say, discomfort in discussing the topic. The TEL toolkit helps carers have these conversations about end-of-life in a supportive and sensitive way.”
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. For more information, visit www.caresearch.com.au/TEL/. Dr Michele Wiese notes, “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 has been launched to coincide with National Palliative Care Week held 20 – 26 May.
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In a world-first, the Talking End of Life (TEL) project assists Australians with intellectual disabilities to understand the concept of death and their own mortality.