Younger Australians with life-limiting conditions often face critical gaps in care, including significant barriers to accessing end-of-life support at home.
New research from Associate Professor Ali Lakhani and Associate Professor Rwth Stuckey has uncovered some of the systemic failures contributing to these barriers.
Their study, published in Palliative Medicine, found that adults aged 18–64 often can’t access the combination of supports needed to stay at home during palliative care, including in home assistance, respite services and help navigating complex health and social care systems.
“Residential aged care can become the only practical way to receive 24-hour care, even when it is not appropriate for this age group,” Associate Professor Lakhani explains.
The researchers identified five interconnected factors that shape whether community living can be sustained for younger adults: informal care, formal care, respite access, service navigation and condition severity.
Strengthening support for carers and improving service navigation emerged as the two areas with the greatest opportunity for improvement.
“If we want to reduce avoidable institutionalisation for younger adults with life limiting conditions, we must treat respite, carer wellbeing, practical assistance and navigation support as core components of community based palliative care, not optional extras,” Associate Professor Lakhani says.
The next phase of the research will explore new approaches to respite and service navigation.
