The project aims to learn more about the unique needs of children and adolescents facing life-limiting illness. See who is involved.
Paediatric palliative care needs are different to those of adults, frequently fall through the cracks and are “often referred late”, say Queensland researchers.
But an expert team are setting out to change that landscape for the estimated 40,000 children and adolescents living with a life-limiting condition in Australia – more than double the number of adults who received a palliative medicine consultation in 2022.
The Queensland University of Technology-led Centre of Research Excellence for Paediatric Palliative Care in Australia has received a major boost in the form of a $3 million grant from the NHMRC. The centre will include collaboration with New Zealand researchers.
Chief investigator Professor Natalie Bradford from QUT’s School of Nursing and the Cancer and Palliative Care Outcomes Centre, said it was important to remember that palliative care was not synonymous with end-of-life care, but was an approach to care that improved the quality of life of patients and their families as they faced life-limiting illness.
“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 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 has a number of focus areas to investigate, including:
- 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.
By working closely with researchers as well as health-system and consumer organisations, the new Centre for Research Excellence plans to translate and transfer findings to improve access, enhance decisions and deliver meaningful outcomes for children and their families and clinicians.
Professor Bradford said they also hoped to 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 comprising clinicians, health economists, statisticians and implementation scientists.
They aim 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 saidit 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.”
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; Dr Hannah Carter, from QUT’s Australian Centre for Health Services Innovation and the Centre for Healthcare Transformation; Dr Ursula Sansom-Daily, from the University of NSW and Sydney Children’s Hospital; Associate Professor Jenny Hynson, from the Royal Children’s Hospital Melbourne; and Dr Holly Evans, from the University of NSW.
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; and Simon Waring and Annette Vickery, Palliative Care Australia.
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Camilla Rowland, CEO of Palliative Care Australia, welcomed the grant which it said would help support better planning and service delivery for the 40,000 paediatric patients who could benefit from palliative care each year.
“The Paediatric Palliative Care National Action Plan identified the need and value in taking this coordinated approach and consolidating the sector’s existing and future research under one umbrella,” she said.
“What comes with that is a critical mass of the best research and information that is connected across state and territory borders with the sole aim of enhancing the safety and quality of care for some of our communities most precious people.”
One of the strengths of the Paediatric Palliative Care National Action Plan, was the involvement of people with lived experience in shaping the four priority areas for action, said Ms Rowland.
“Funding for the Centre of Research Excellence is a direct response to what we heard from the families and health professionals we consulted with, this is action 4.3 in the plan to be precise, and it’s a credit to those people that the government has heard their advice,” she said.
“The voice of lived experience will also be central to the work QUT will now lead. PCA looks forward to supporting this important work.”
