Project 453092

In Canada, Indigenous peoples (including First Nations, Métis and Inuit) experience persistent health and social disparities and report higher rates of end-stage organ failure. The reasons for these disparities are complex and have been linked to Canada's history of colonialism and racism. Our ultimate objective is to improve access rates and health outcomes of solid organ transplantation among Indigenous children. This research will explore the following questions: 1) How can we foster meaningful engagement with Indigenous patients and families as equal partners in research? 2) What is known about access to and outcomes of transplantation among Indigenous children? 3) How do transplantation rates and outcomes compare between Indigenous and non-Indigenous children? 4) What are the experiences and perspectives of Indigenous patients, families and knowledge users? And 5) How can we collaborate with knowledge users to create culturally safe tools to improve health outcomes in pediatric solid organ transplantation? Our study design will include four phases: 1) A scoping review to describe the international knowledge about access, survival and health outcomes of transplantation among Indigenous children; 2) A retrospective cohort study to compare transplantation rates and outcomes between Indigenous and non-Indigenous children in Canada; 3) Semi-structured Interviews with Indigenous transplant patients and families, and knowledge users to identify barriers and facilitators to transplant access and care; and 4) A knowledge sharing workshop with community partners and knowledge users. This research will focus on building strong partnerships with Indigenous patients and families to share power and research decision-making. Guided by their experiences and knowledge, this research will co-create new knowledge about transplantation rates and outcomes to inform measurable goals and interventions to improve health equity within pediatric transplantation.