“Our stories are our strength”: Understanding Indigenous patients, families, and communities’ lived experiences of pediatric solid organ transplantation
On behalf of their research team, Dr. Samantha Anthony (Health Clinician Scientist) and Jia Lin (Research Coordinator) at The Hospital for Sick Children (SickKids), and members of the Edwin S.H. Leong Centre for Healthy Children, provide an update on their study capturing the stories and voices of Indigenous patients, families, and stakeholders to identify opportunities to enhance access to and health outcomes of pediatric solid organ transplantation.
First Nations, Métis, and Inuit children are the fastest-growing cohort of children in Canada, yet experience persistent health and social disparities. Within pediatric solid organ transplantation, Indigenous children report higher rates of end-stage organ failure and poorer outcomes following transplantation. The reasons for these disparities are multifaceted, with upstream factors linked to Canada’s history of colonialism, land dispossession, discriminatory policies, and racism. The ultimate objective of this research is to advance child health equity by improving access to and health outcomes of pediatric solid organ transplantation for Indigenous children and families.
The multi-phased research includes: Phase 1 – Scoping review to synthesize the current status of literature characterizing access to and health outcomes of solid organ transplantation among Indigenous children in settler-colonial states (findings have been submitted for publication); Phase 2 (current phase) – Qualitative storytelling to capture the stories and voices of Indigenous patients, families, and stakeholders, including Elders and Knowledge Keepers, to identify opportunities to enhance transplant access and care; and Phase 3 – Knowledge sharing workshop to share research findings with partners and stakeholders in a meaningful way.
Recruiting from across four pediatric centres (SickKids, BC Children’s Hospital, Stollery Children’s Hospital, and Health Sciences Centre Winnipeg), Phase 2 employs storytelling as the methodology to explore the questions: What are patients, families, and stakeholders’ stories and perspectives of pediatric transplantation and clinical care? What are the opportunities to enhance access and care to improve health outcomes for this population? Storytelling is a meaningful practice that can validate experiences, build resilience, sustain relationships, and nurture knowledge sharing. Storytelling can also derive comprehensive understandings of health inequities to establish measurable goals, culturally safe interventions, and policy change to improve health outcomes.
Our research is rooted in community-based participatory research, Two-Eyed Seeing, and Indigenous data sovereignty, and is co-led by an Advisory Committee comprised of Indigenous patients and families to share power and build trust. As a team, we are participating in the Wabishki Bizhiko Skaanj (‘White Horse’ in Anishinaabemowin), a learning pathway co-created by Co-Principal Investigator Mary Beaucage to build cultural safety and support self-reflection as we engage with Indigenous patients and partners.
We are currently actively recruiting participants and have commenced interviews with patients and families across our four centres. Stories have revealed the unwavering strength of Indigenous self-determination and opportunities to incorporate Indigenous ways of knowing within current Western-based clinical care. As described by one participant: “A lot of times we don’t have access to our knowledge, and we have to really go out there and look for it and be a part of it. So it would be nice if it could be offered to us… knowledge of our own medicines and our own ways of healing… It’s so interconnected. It’s not just about medicine. It’s a holistic approach.” Guided by participants’ lived experiences, this research will co-create new knowledge to address child health inequities in solid organ transplantation for Indigenous patients and families and help to establish culturally-safe recommendations to inform clinical care.
To learn more about this research, please visit https://lab.research.sickkids.ca/anthony/.