Presented by: Andrea Grindrod
This presentation reports on a three year study that used a public health approach (health promoting palliative care) to embed end-of-life care into the core practice of government-managed residential services for people with intellectual disabilities in Victoria, Australia. Our research began in response to the finding that this group has poorer end-of-life outcomes compared to other citizens, and proceeded by surveying the resources available for end-of-life care in residential services in one Victorian health region that included both metropolitan and rural settings. Staff attitudes to providing end-of-life care to residents were explored through a survey (n=174) while focus groups (n=26) and research interviews (n=6) elicited staff members’ experiences. Findings from analysing the structural, cultural and practical factors that influence end of life outcomes will be shared, with a focus upon how these factors inform a model for sustainable organisational change. In particular, we developed organisational strategies that encourage residential care workers to see themselves as central to end-of-life care, rather than existing on the fringes of, or being secondary to, palliative care expertise. Making the model sustainable has also meant revisions to some health and welfare policy.
We will share with participants our experiences of developing and implementing this model both at the study site and more broadly in other related Australian disability systems. Although our findings are drawn from the disability sector, the approach potentially applies to other settings where citizens are dependent upon the welfare sector.