A Retrospective Study of Chronic Kidney Disease Burden in Saskatchewan’s First Nations People

Background: Renal replacement options or dialysis can be delivered in the home setting or hospital setting. Home dialysis offers a number of benefits over hospital-delivered dialysis. These advantages include improved quality of life, less travel, and fewer dietary restrictions. Despite the benefits, home-based dialysis therapies are significantly underutilized by First Nations with only 16.2% uptake versus 25.7% uptake in non-First Nations people in Saskatchewan. It is important to recognize that First Nations have a greater burden of end-stage renal disease including higher prevalence, younger age at diagnosis, increased severity of disease, mortality at an earlier age, and increased travel distance to access kidney services. Objective: The goal of this study is to identify the existing barriers to home peritoneal dialysis and provide insight for future programs in Saskatchewan First Nations communities in a culturally meaningful framework. Design: Through qualitative research utilizing sharing circles and individual interviews, barriers to utilizing home-based dialysis were identified. Setting: Four sharing circles were held and interviews were conducted with four First Nations dialysis patients. Participants: Total number of participants in sharing circles were 67. Sharing circles were composed of patients with chronic kidney disease, patients on hospital-based dialysis, patients on home-based peritoneal dialysis, family members, health care providers (nurses, physicians, dietitians, primary care director, and coordinators). Face-to-face interviews were conducted with four First Nations dialysis patients. Measurements: The data from the sharing circles and interviews were transcribed and analyzed by a PhD researcher using constructivist grounded theory, with elements of narrative inquiry to ascertain participants’ experiences of care. Data were coded and then grouped into categories using qualitative research software NVivo. Saturation of data was achieved. Methods: Documenting and recounting patient and community experience with chronic kidney disease through sharing circles involving patients, family members, and health care providers has been the central information base for this project. Qualitative interviews were conducted with patients who currently use home dialysis and those who travel to hospital for dialysis. Written consent was obtained from all participants. Information was gathered via audio recording of all sharing circles and interviews. Transcription of the interviews was completed with confidentiality maintained during transcription. Results: The main theme of our results was addressing the underutilization of home-based peritoneal dialysis in First Nations Communities. Five subthemes emerged from the main theme and included logistics, education and information, training and support, community support, and culture and leadership. Through sharing circles, a secondary theme of observations about living with chronic kidney disease and experiences of being on dialysis was explored. Limitations: A small number of First Nations communities were involved in this project, and although the data reached saturation, we cannot presume that the information is representative of all First Nations in Saskatchewan. There were a limited number of patients currently on home-based peritoneal dialysis, and therefore their perceptions may not be adequately captured. Participant characteristics (patient, caregiver, nurse, etc) were not captured when speaking in the sharing circles, and therefore participants are not classified when quoted. Conclusions: Strategies to help improve home-based dialysis included improved education, local support, integrated traditional medicine, cultural sensitivity, and leadership prioritization.

Section: Introductionmentioning

confidence: 99%

Community-Based Dialysis in Saskatchewan First Nations: A Grassroots Approach to Gaining Insight and Perspective From First Nations Patients With Chronic Kidney Disease

Richels

Sutherland

Prettyshield

et al. 2020

“…24 Indigenous patients are more likely to have an earlier onset of chronic kidney disease (CKD), to have diabetes either as a comorbid condition or as the cause of their CKD, and to travel further to receive kidney care compared with non-Indigenous patients. 24 - 27 There is also a higher prevalence of severe CKD among Indigenous patients compared with non-Indigenous patients in Canada. 25 - 27 While it has been noted that Indigenous peoples have substantially reduced access to KT and LDKT, 12 , 24 the specific factors leading to this inequitable access have not been fully characterized or understood.…”

Section: Introductionmentioning

confidence: 99%

“…24 - 27 There is also a higher prevalence of severe CKD among Indigenous patients compared with non-Indigenous patients in Canada. 25 - 27 While it has been noted that Indigenous peoples have substantially reduced access to KT and LDKT, 12 , 24 the specific factors leading to this inequitable access have not been fully characterized or understood. Furthermore, there have been few targeted efforts to improve equitable access to KT and LDKT for Indigenous communities in Canada.…”

Section: Introductionmentioning

confidence: 99%

Barriers to Accessing Kidney Transplantation Among Populations Marginalized by Race and Ethnicity in Canada: A Scoping Review Part 1—Indigenous Communities in Canada

El-Dassouki

Wong

Toews

et al. 2021

Background: Kidney transplantation (KT), a treatment option for end-stage kidney disease (ESKD), is associated with longer survival and improved quality of life compared with dialysis. Inequities in access to KT, and specifically, living donor kidney transplantation (LDKT), have been documented in Canada along various demographic dimensions. In this article, we review existing evidence about inequitable access and barriers to KT and LDKT for patients from Indigenous communities in Canada. Objective: To characterize the current state of literature on access to KT and LDKT among Indigenous communities in Canada and to answer the research question, “what factors may influence inequitable access to KT among Indigenous communities in Canada.” Eligibility criteria: Databases and gray literature were searched in June and November 2020 for full-text original research articles or gray literature resources addressing KT access or barriers in Indigenous communities in Canada. A total of 26 articles were analyzed thematically. Sources of evidence: Gray literature and CINAHL, OVID Medline, OVID Embase, and Cochrane databases. Charting methods: Literature characteristics were recorded and findings which described rates of and factors that influence access to KT were summarized in a narrative account. Key themes were subsequently identified and synthesized thematically in the review. Results: Indigenous communities in Canada experience various barriers in accessing culturally safe medical information and care, resulting in inequitable access to KT. Barriers include insufficient incorporation of Indigenous ways of knowing and being in information dissemination and care for ESKD and KT, spiritual concerns, health beliefs, logistical hurdles to accessing care, and systemic mistrust resulting from colonialism and systemic racism. Limitations: This review included studies that used various methodologies and did not assess study quality. Data on Indigenous status were not reported or defined in a standardized manner. Indigenous communities are not homogeneous and views on organ donation and KT vary by individual. Conclusions: Our scoping review has identified potential barriers that Indigenous communities may face in accessing KT and LDKT. Further research is urgently needed to better understand barriers and support needs and to develop strategies to improve equitable access to KT and LDKT for Indigenous populations in Canada.

“…Canadian Indigenous populations, experience significantly more chronic kidney disease (CKD) than the general population. 1,2 Indigenous people with CKD, especially those who live in rural and remote areas may struggle to access treatment and information for their conditions in a timely manner. 3 Informed decision making about treatment options for kidney failure may be delayed for themselves, their families, and their health care provider.…”

Section: Introductionmentioning

confidence: 99%

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

Jansen

Maina

Horsburgh

et al. 2020

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.