Embarking on a journey to explore the realities of pediatric solid organ transplantation for Indigenous patients, families and communities across Canada

Principal Investigator: S. Anthony
M. Beaucage, A. Dart, M. De Angelis, E. Ghent, A. Goldberg, D. Hartell, M. Matsuda-Abedini, S. Urschel, M. Weiss
Patient Partners: R. Henderson, C. Toulouse

Indigenous children, including First Nations, Inuit and Métis, experience persistent health and social inequities and face higher rates of end-stage organ failure, requiring solid organ transplantation (SOT). The reasons for these inequities are multifaceted, linked to Canada’s history of colonialism and racism. This program of research leverages innovative concepts and methodological approaches to disrupt Western notions of research and consider the multiplicity of knowledge to address health inequities in pediatric SOT.

Our ultimate aim is to advance child health equity by improving access to and health outcomes of pediatric SOT for Indigenous patients and families. This research is rooted in community-based participatory research, Two-Eyed Seeing and Indigenous data sovereignty, and co-led by an Advisory Committee to share power, build capacity and facilitate knowledge translation.

Methods: Our research program includes four phases: Phase 1) a scoping review to characterize the current landscape and identify knowledge gaps relating to access, survival and health outcomes of SOT among Indigenous children, Phase 2) a retrospective cohort study of the Canadian Organ Replacement Register to examine SOT outcomes between Indigenous and non-Indigenous children, Phase 3) qualitative interviews with Indigenous patients, families and stakeholders (e.g., Elders and Knowledge Keepers, clinicians caring for SOT patients and Indigenous health researchers) to capture their stories and identify opportunities to enhance SOT access and care, and Phase 4) a reciprocal knowledge-sharing workshop to share and apply research findings in a meaningful way.

Results: Pending. Findings will inform the creation of a culturally safe, collective teaching story to be disseminated to patient and community partners, stakeholders and institutions to mobilize action. With a better understanding of patients’ lives, stories and cultures, healthcare systems will be better equipped to improve SOT access and care for this resilient population.

Knowledge Translation: Bioethics Week Embarking on a Journey Poster

Funded by: Canadian Institutes of Health Research and The Leong Centre for Healthy Children