Children, young people, and families living with life-limiting conditions are at the heart of a new research initiative announced by the Commonwealth Government.
The Centre of Research Excellence in Paediatric Palliative Care in Australia has been funded with a $3 million grant from the Australian National Health and Medical Research Council (NHMRC).
"This is very welcome news and will help support better planning and service delivery for the estimated 40,000 children who could benefit from palliative care each year," says Camilla Rowland, Chief Executive Officer, Palliative Care Australia (PCA).
"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.
"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."
The new Centre of Research Excellence will be led by QUT (Queensland University of Technology) under Chief investigator, Professor Natalie Bradford from the School of Nursing at and the Cancer and Palliative Care Outcomes Centre.
Palliative Care Australia's Paediatric Palliative Care Manager, Annette Vickery will be an Associate Investigator, building on her four-year commitment to the Paediatric Palliative Care National Action Plan Project.
Other supporting organisations include:
University of New South Wales
Royal Children's Hospital Melbourne
International Children's Palliative Care Network
Children's Health Queensland Hospital and Health Service
Sydney Children's Hospitals Network
Flinders University
"Children referred to paediatric palliative care have diverse, complex disease and accompanying needs and are often referred late," says Professor Bradford.
"We want to ensure high quality of care is available to all families who need it, regardless of where they live."
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.
"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," says Ms Rowland.
"The voice of lived experience will also be central to the work QUT will now lead."
Working closely with researchers, health and consumer organisations, the new Centre of Research Excellence will generate and share 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
"PCA looks forward to supporting this important work," Ms Rowland says.
