Research Institute for the Humanities
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Sydney Collaboration on Learning Disability Project
Professor Sue Read has collaborated with colleagues from the University of Sydney on a learning disability research project awarded £183,914 by the ARC.
Professor Read, Professor of Learning Disability Nursing, School of Nursing & Midwifery, RISS, is the UK PI on a successful grant application for a 36 months research study entitled 'A toolkit to build the capacity of disability staff to assist adults with intellectual disability to understand and plan for their end of life'. This collaborative research study, led by Professor Roger Stancliffe, University of Sydney, has been awarded £183,914 by the Australian Research Council (Linkage fund) in conjunction with the Sunshine organisation (an Australian charity).
People with intellectual disabilities (ID) are living much longer than previously, yet this welcome news has various consequences. Because adults with ID now frequently outlive their parents (who have been their primary care providers), rarely have children to support them in old age, and typically have limited care from siblings, they rely heavily on continuous support from disability services in later life, and throughout associated ill health experiences. Preliminary research shows that adults with ID often lack access to pertinent information about death and have limited opportunities to discuss their concerns and wishes around end of life care preferences. The thrust of this research project is to design and trial a toolkit to train disability staff to assist adults with an ID to better understand and plan for their end of life. This mixed methods study will determine whether, following intervention, people with an ID are better able to understand and plan for the end of life. Assessing depression, anxiety and fear of dying over time will yield the first robust research evidence regarding concerns that discussing death could lead to emotional distress.
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