A QUT-led project to establish the Centre of Research Excellence for Paediatric Palliative Care in Australia has been funded with a $3M grant from the Australian National Health and Medical Research Council (NHMRC).
Chief investigator Professor Natalie Bradford from the School of Nursing at QUT (Queensland University of Technology) and the Cancer and Palliative Care Outcomes Centre said an estimated 40,000 children and adolescents live 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.
"More research is required to understand the prevalence of life-limiting conditions in First Nations children, who appear 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."
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.
Through working closely with researchers, health-system and consumer organisations, the new Centre for Research Excellence will:
- Translate and transfer these findings to improve access, enhance decisions and deliver meaningful outcomes for children and their families and clinicians.
- Accelerate the paediatric palliative care research workforce driving collaborations and supporting the development of leaders.
Professor Bradford and several of the team members involved in the Centre for Research Excellence for Paediatric Palliative Care are based within QUT's Centre for Healthcare Transformation, a multidisciplinary health research group that brings together leading clinicians, health economists, statisticians and implementation scientists to improve health research outcomes and strengthen the efficiency and effectiveness of health services.
Professor Julia Downing from the International Children's Palliative Care Network said it was exciting the grant had been awarded to develop a research centre on children's palliative care in Australia and New Zealand.
"At ICPCN we are delighted to be supporting this work along with colleagues from across Australia and New Zealand as well as internationally," Professor Downing said.
"Developing an evidence-base for children's palliative care is essential as we move the field forward and is a core part of the WHO conceptual model for the development of palliative care."
(Image: from left: Dr Alison Bowers, Adjunct Associate Professor Anthony Herbert, Distinguished Professor Patsy Yates and Professor Natalie Bradford. Top inset: Adjunct Associate Professor Stuart Ekberg, Dr Hannah Carter, Adjunct Associate Professor Ross Drake.)
The research team comprises interdisciplinary leaders in child/adolescent palliative care across Australia, including chief investigators Professor Bradford, Adjunct Associate Professor Anthony Herbert, Distinguished Professor Patsy Yates and Dr Alison Bowers, all from QUT's School of Nursing; Adjunct Associate Professor Stuart Ekberg from QUT's School of Psychology and Counselling, Dr Hannah Carter from QUT's Australian Centre for Health Services Innovation and Centre for Healthcare Transformation; Dr Ursula Sansom-Daly, University of New South Wales and Sydney Children's Hospital; Associate Professor Jenny Hynson, The Royal Children's Hospital Melbourne; Dr Holly Evans, University of New South Wales.
Associate investigators are Dr Joanne Wolfe, Massachusetts General Hospital; Professor Julia Downing, International Children's Palliative Care Network; Emerita Professor Myra Bluebond-Langner, University College London; Associate Professor Helen Irving, Children's Health Queensland Hospital and Health Service; Adjunct Associate Professor Ross Drake, Starship Children's Hospital and QUT, Auckland; Dr Susan Trethewie, Sydney Children's Hospitals Network; Dr Bronwyn Sacks, and Dr Sidharth Vemuri The Royal Children's Hospital, Melbourne; Rachel Callander, Paediatric Palliative Care; Simon Waring and Annette Vickery from Palliative Care Australia.
