People with intellectual disability are experiencing increasing rates of life-limiting illnesses such as respiratory diseases, circulatory diseases and cancer, but are under-referred to palliative care services. Further, there is currently no specific guidance or model of palliative care in Australia for services to meet their unique needs.
This project will use a mixed-methods approach incorporating large linked datasets and qualitative data to examine access to and the impact of palliative care for people with intellectual disability. We will consult nationally with people with intellectual disability, carers, and professionals, and will translate our findings into the co-design, trial and preliminary evaluation of a tailored model of palliative care for people with intellectual disability. We will also develop and launch a Toolkit to improve the accessibility and quality of palliative care services for people with intellectual disability.
Finally, we will establish a mechanism for improving the national data collection about people with intellectual disability receiving palliative care services, enabling benchmarking of service provision.
If you have any questions about the project, please contact the Project Officer, Amanuel Hagos on (02) 9348 0111 or IDPalliativeCare@unsw.edu.au