Written by Hal Siden

RESEARCH PROJECT: Children living with health complexity

Lead investigators/designated PI’s

Hal Siden

Investigator/study status

Ongoing series of projects within the overall program theme

Approval Date

December, 2017


Cluster grant initiated Jan 2018 and work continues


March 8, 2022

The number of children living with health complexity is increasing throughout the industrialized world. They are less than one percent of all children but access greater than thirty percent of healthcare resources. Children requiring pediatric palliative care (PPC) form an overlapping group, primarily because of the predominance of perinatal and congenital conditions that are long-lasting, and can be stabilized but not cured. One way to re-examine their situation within health care (and other contexts) is through a lens of complex adaptive systems.

The purpose of this study is to learn more about children living with health complexity and their families, better determine their needs, and design new approaches in health care service delivery. 

There have been multiple projects in this program. It began as a UBC Cluster Grant entitled The Frail Young. The major activity of that grant was to undertake human centered design activities for parents to describe their situations, and to host an international workshop. Additional design activities included health professionals, followed by two seminars on social (healthcare) transformation, oriented towards developing small experiments in new ways of caring for children and families in PPC/Health Complexity. Knowledge translation activities have included zoom conferences and Twitter chats