Co-Developed Indigenous Educational Materials for Chronic Kidney Disease: A Scoping Review

Abstract

Background: Canadian Indigenous populations experience significantly more chronic kidney disease (CKD) than the general population. Indigenous people who live in rural and remote areas may also have difficulty accessing both information and care for their CKD. Informed decision making about treatment options for advancing kidney disease may be delayed, which can result in poor health outcomes and decreased quality of life. Moreover, Indigenous people may experience marginalization within Western health care systems. Objective: The objective of this scoping review is to identify culturally appropriate and co-developed Indigenous educational tools that will ultimately support CKD learning and end-stage kidney treatment decision making. Design: Scoping Review Setting: Databases included Embase, CINAHL, Medline (OVID), ERIC, and the Canadian Agency for Drugs and Technology Gray Matters. Study Participants: Community-based Indigenous patients, families, health care workers, and community members. Methods: We systematically reviewed the literature to explore the availability of co-developed Indigenous educational tools and material for CKD treatment options. Titles, abstracts, and full texts were reviewed independently by 2 reviewers with disagreements resolved through a third. All aspects of this project, including searching the databases were done in consultation with an Indigenous Elder. Results: Only one retrieved article identified a comprehensive CKD tool co-developed by researchers, health care providers, and an Indigenous community. Three themes emerged from the scoping review that may inform characteristics of co-developed tools: cultural appropriateness; appraisal of utility and effectiveness and; content informed by co-development of traditional and Western chronic disease knowledge. Limitations: Consistent with scoping review methodology, the methodological quality of included studies was not assessed. In addition, it was difficult to synthesize the findings from the research and gray literature. Conclusion: Little is known about the co-development of Indigenous educational tools for CKD. Further in-depth understanding is required about how to best engage with Indigenous communities, specifically to co-develop contextualized CKD tools that are acceptable to Indigenous people. Trial registration: Not applicable as this review described secondary data.

Furthering Cultural Safety in Kidney Care Within Indigenous Communities: A Systematic and Narrative Review

“…The publications by Richels et al, 16 Hughes et al, 17 Jansen et al, 18 Nelson et al 19 and Walker et al 20,21 were consistent with the concept of Cultural Safety within kidney care and expressed relationality, engagement, and health care self-determination.…”

“…Moreover, the review highlights issues with trust within the health care system and the need to incorporate traditional ways in order to foster kidney organ donation and transplantation. Overall, the need to further Cultural Safety and eliminate ignorance and prejudice was a finding shared by Richels et al, 16 Hughes et al 17 and Jansen et al 18 .…”

“…The need for individualized education and support for caregivers was further highlighted. 16 Similarly, a qualitative study by Hughes et al 17 and a scoping review from Jansen et al 18 emphasized community relational strengths and included supporting, assisting each other, and learning from and listening to Elders. These studies and another study by Nelson et al 19 also identified a need for resources beyond written format that are inclusive of local language, traditional protocols, and ceremonies developed by communities themselves.…”

“…Walker et al 20 completed a systematic review of qualitative studies related to Indigenous experiences, perspectives, and values regarding kidney transplantation with participants from Australia, New Zealand, Canada, and the United States. A recurring theme which is shared with the articles by Richels et al, 16 Hughes et al, 17 and Jansen et al 18 was the lack of patient engagement in kidney healthcare decision-making, including prioritizing transplantation. Moreover, the review highlights issues with trust within the health care system and the need to incorporate traditional ways in order to foster kidney organ donation and transplantation.…”

Barriers to Peritoneal Dialysis in Saskatchewan Canada: Results From a Province-Wide Survey

“…42 These perceptional challenges in our jurisdiction will have to be addressed proactively by collaboration between First Nation leaders, senior health region administrators, and by an education program with Indigenous teaching tools tailored toward the patients, families, and communities. 43 …”