Leading the Way: Research in Pediatric Palliative Care
At Canuck Place, our clinical care research is directly linked to the care we provide to the children and families on our program. Paediatric palliative care is a complex and expanding field. As acute care improves, we are seeing a higher number of children requiring specialized expertise in chronic and complex care especially those with life-limiting /life-threatening conditions.
Canuck Place is a research and knowledge leader. We believe ongoing engagement in research, knowledge acquisition, and information sharing are essential elements in the ability to respond to the changing needs of families in our care, and the evolving field of pediatric palliative care as a whole. Canuck Place Medical Director, Dr. Hal Siden, heads a national network of Pediatric Palliative Care research, focused on the discovery of information and evidence that will help improve the practice of pediatric palliative care, with the aim of improving quality of life and complex care management for vulnerable children.
The Frail Young Project
One of the research initiatives Dr. Siden is currently working on is the Children Living with Frailty Project. Funded by a grant for Catalyzing Research Clusters, Office of the Vice-President, Research at UBC, the 2018 Frail Young workshop gathered select clinicians and researchers working in the area of pediatric palliative and/or complex care in order to identify and understand significant changes we perceive are occurring in the child health care system.
The intention of the workshop was to explore the concept of care in these contexts, begin conversations toward developing new language and new foundational models of care, and to generate specific (perhaps researchable) questions.
Three questions framed the activities of the day.
- Who are the Frail Young?
- What are our assumptions about our current models of care?
- What worries us about how we provide care to the Frail Young and their families?
Highlights of 2018 Workshop Discussions
There is a group of children, nominally called the Frail Young, who are high users of the health system, and whose families invest their energies on interactions with the health system. This population is growing.
There is widespread concern about the current model of care, in its ability to care for the Frail Young. The current model was designed for complicated, not complex, care, and it doesn’t produce the best possible outcomes for children or their families.
Inadequacies in the current system are:
- Trust, amongst clinicians and between clinicians and family members, is difficult to establish and takes time.
- Families and children find their experiences frightening and overwhelming. They experience chronic sorrow (living bereavement).
- Providers find the experience of providing care frustrating, and at times overwhelming
It was determined that the path forward with this research group was to continue the work of defining the current system, and engage families to understand their perspectives, and challenges.
Adding to our Understanding
Throughout 2108 and 2019 we then engaged in a series of engagement activities with parents of children with frailty. Many of these families are on the Canuck Place program. Families participated in individual conversations, and in a variety of small group activities The activites were based on the principles of Human-Centred Design, and we worked closely with the Health Design Lab at Emily Carr University of Art and Design.
The results of these findings were then shared with groups of clinicians and health care administrators to have them create a link between the parents’ experiences and the care that is provided.
Next steps – Upcoming 2020 Workshop on Children and Frailty
In light of these unprecedented times with Covid-19, Dr. Siden is continuing the work of the Children with Frailty Project alongside a select group of clinicians and researchers in the field, by hosting an online workshop on May 6th & 7th, 2020.
The two topics for dialogue for this workshop are:
- Understanding the complex adaptive system that is our health care system.
- How can health care providers use the power that they have to improve care provision for the Frail Young?
Pediatric palliative care is literally evolving right before our eyes – it is a field of medicine only 30 years old. Here in BC, we have a unique model of centralized pediatric care and the research Canuck Place is engaging in with projects such as the Frail Young, will have an incredible and direct impact on outcomes for children with complex conditions and diseases.