People with an intellectual disability are experiencing increasing rates of life-limiting conditions but are under-referred to palliative care services. Further, there is currently no model of palliative care in Australia for services to meet their unique needs. Efforts to progress palliative care research in this area have begun internationally, but robust epidemiological data and a co-designed model of care to suit the Australian health care environment are needed.
Our project will utilise a mixed-methods approach incorporating large linked administrative datasets and qualitative data to examine access to and the impact of palliative care for people with ID. The broad aims of our research program are to:
- provide evidence regarding the current access to and impact of palliative care for people with ID;
- co-design, trial, and undertake a preliminary evaluation of a tailored model of palliative care for people with ID, and disseminate an associated Toolkit to build capacity across the sector;
- establish a mechanism for future routine data collection related to palliative care provision to people with ID nation-wide.
Professor Julian Trollor
Dr Rachael Cvejic
Page created 20 October 2020