A scoping review of studies from four settler-colonial countries has revealed notable disparities of Indigenous children's access to kidney transplants and related health outcomes. The results have laid the foundation for a national qualitative study in Canada, led by Dr. Samantha Anthony of the University of Toronto. The multi-centre study includes interviews with Indigenous patients, families and stakeholders (e.g., Elders and Knowledge Keepers) to capture their stories and identify opportunities to improve kidney transplant access, care and outcomes.
Dr. Mina Matsuda-Abedini, a pediatric nephrologist and researcher at BC Children's Hospital in Vancouver, was involved in the review and is part of the Canadian study. Of note, the review and study have been co-led by an advisory committee of Indigenous patients and families who partner to set the research direction, and ensure cultural relevance and alignment with the priorities of the Indigenous communities involved.
"As a team, our ultimate goal is improving access and health outcomes for Indigenous children receiving a solid organ transplant, and we felt that, as a starting point, we needed to look globally at what are some of the gaps and barriers," Matsuda-Abedini explains, noting this prompted the research team to first conduct their scoping review.
In total, the team found 24 articles published between 1996 and 2021 that discussed solid organ transplants in Indigenous children in Canada, the United States, Australia and New Zealand - which also has the Indigenous name, Aotearoa.
While there were mixed findings about Indigenous children's access to liver transplants, notable disparities were reported in the context of kidney transplants. For example, the review showed that Indigenous children experienced longer times on dialysis, lower rates of pre-emptive and living donor kidney transplants, and disparities in patient and graft outcomes after kidney transplants. The review article was published in 2024 in the journal Transplantation.
"What was missing in the published articles we reviewed was a meaningful discussion of historical and sociocultural determinants of health, like impacts of settler colonialism, generational trauma, institutional racism and cultural bias, which are all barriers," notes Matsuda-Abedini.
This research team is beginning to dig deeper into the underlying causes of these disparities and learn more about the stories and perspectives of Indigenous children with a solid organ transplant, and their families, through semi-structured interviews. As part of the Canadian study, they also plan to interview health-care providers and research scholars who work with Indigenous communities, as well as interview Indigenous Elders and Knowledge Keepers.
"There are distinct cultural, spiritual and historical contexts that we need to learn more about," emphasizes Matsuda-Abedini, adding, "Our goal at the end of this is to share our research findings - which can be described as a research story - with patients, families and community partners, and establish culturally safe and relevant recommendations."
Study: Access to and Health Outcomes of Pediatric Solid Organ Transplantation for Indigenous Children in 4 Settler-colonial Countries: A Scoping Review
