A new paediatric palliative care centre aims to address the unique needs of children with life-limiting illness.
Boosted by a $3m million grant from the Australian National Health and Medical Research Council, the QUT-led project team said the proposed Centre of Research Excellence for Paediatric Palliative Care would work to improve the life of young patients and their families.
Chief investigator Professor Natalie Bradford, from the QUT’s School of Nursing and the Cancer and Palliative Care Outcomes Centre said an estimated 40,000 children and adolescents lived with a life-limiting condition in Australia, more than double the number of adults who received a palliative medicine consultation in 2022.
“It is important to remember that palliative care is not synonymous with end-of-life care, but rather is an approach to care that improves the quality of life of patients and their families as they face life-limiting illness,” Professor Bradford said.
“Despite children’s palliative care being a national health priority for Australia, we still lack sufficient evidence to support planning and delivery of these much-needed services.”
She said more research was required to understand the prevalence of life-limiting conditions in First Nations children, who appeared over-represented in the data compared with non-Indigenous children with conditions that may be preventable.
Professor Bradford said children’s palliative care needs were different from adults.
“They are not simply ‘little adults,’ they have unique caring, ethical and legal issues and needs,” she said.
“Children referred to paediatric palliative care have diverse complex disease and accompanying needs and are often referred late.
“We have evidence that we can provide gold-standard patient and family centred care, which improves the quality of care provided and enhances quality of life for the child and family. We want to ensure high quality of care is available to all families who need it, regardless of where they live.”
She said the research centre would generate new knowledge about:
- Models of care appropriate for geographically dispersed and diverse populations of children and families.
- New approaches to shared decision-making that integrate the perspectives of children, family members and clinicians to ensure care in line with child and family goals and wishes.
- Methods to measure children’s and their families’ experience and outcomes.
