RESEARCH PROJECT: DYING TO TALK
Conversations about death or dying aren’t most people’s cup of tea.
Frankly, many of us prefer to ignore the subject altogether. When it comes to people with an intellectual disability, however, the topic is often swept under the rug completely.
The Dying to Talk project shines the spotlight on this important issue, with the goal of finding ways to better communicate the concept of dying and death to people with intellectual disability.
The project began in 2013 when the Faculty of Health Sciences at University of Sydney, Sunshine and Keele University in the UK won an Australian Research Council Linkage Grant. Together our research showed that, compared to disability staff, adults with intellectual disability have a significantly poorer understanding of death, were less self-determined about end-of-life planning, and reported greater fear of death.
We then went on to develop a training toolkit to assist disability support staff to have conversations about dying and death. The aim was to help people with intellectual disability to better understand dying and death, so they could make plans for it if they choose to. An important emphasis was to introduce these conversations early, while people are well, and long before death is imminent.
The toolkit includes a DVD resource, Dying to Talk, winner of an Australian Writer’s Guild Award in 2015. The DVD consists of 9 short sections plus special features. It features real people with intellectual disability and disability service staff (not actors). We are pleased to announce that the DVD is now available. You can view all 9 chapters plus the special features via the links below, or you can request a free copy of the DVD to be sent to you (within Australia) by contacting Sunshine on 1300 266 222 or emailing us at firstname.lastname@example.org.
Our research partnership continues. In 2017-18 we are translating the very successful Dying to Talk training toolkit into a freely available online training curriculum. We will keep you posted. We look forward to building on the insights we have already gained, and to strengthening the understanding of death and dying, including how we approach this when supporting people with intellectual disability.