Not every child enjoys a healthy start to life – and too often the task of addressing childhood mortality becomes a fraught conversation that struggles to address crucial things we don’t want to talk about. Flinders University, a global leader in palliative care research, is now addressing better ways for parents, health professionals and seriously ill children to communicate when they confront this very difficult situation.
Associate Professor Stuart Ekberg, who recently joined Flinders University’s Caring Futures Institute, has been exploring this relatively new research area of paediatric palliative care as an extension of his broader research focus of communication in healthcare.
“I’ve always been drawn to the most challenging areas of clinical practice, because that’s where we have the potential to make the biggest difference to people’s experiences of health care,” he says.
“Paediatric palliative care is more than you think. It is about improving the quality of life for infants, children and young people diagnosed with a life-limiting condition, and supporting those who care for them.”
A First Nations scholar who hails from Port Augusta, Associate Professor Ekberg came to Flinders after more than a decade working in Queensland and England, specifically because of the strength of the palliative care research resources at Flinders, and to make significant impact in this growing area of childhood health research.
Having initially trained in psychology, Associate Professor Ekberg moved into transdisciplinary health research to examine how social factors – and particularly communication – influence how health care is delivered. “Communication is the most common procedure used in health care, but we rely on quite poor evidence to understand that procedure. Communication is largely studied using indirect recollections of what people have said, but I go into clinical spaces with a camera to record what actually happens. This gives us much better insights to understand and improve communication.”
Using insights from video recordings of actual clinical practice, Associate Professor Ekberg and colleagues have developed resources called discussion prompt lists – for initial paediatric palliative care discussions, and also for more grave discussions when the end of a child’s life is approaching – which are now available across the network of specialist paediatric services and hospices around Australia. These are now in a second print run, and are also embedded electronically through Palliative Care Australia so that anyone access these resources.
They represent an important initial step in this new area of paediatric health research, which will be developed further with the recent announcement of an Australian Research Council Discovery Project exploring advance care planning conversations across the lifespan, from paediatric care to care for the oldest Australians. The NHMRC has also announced a new Research Centre of Excellence for Paediatric Palliative Care, for which Associate Professor Ekberg will be a Chief Investigator.
“We are at a pivotal moment in the development of paediatric palliative care in Australia,” says Associate Professor Ekberg. “Last July, the first National Action Plan for Paediatric Palliative Care was launched, and research is one of its four key priorities. Australia is positioned to be a major contributor to advance both clinical practice and the research underpinning it.
“I’m so excited to be able to deliver on that program of work at Flinders, which is uniquely placed to translate research into training for clinicians. Doing this work in such an important area of new discovery represents an exciting next phase of my career.”