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

Abstract

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.

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.…”

“…Having the family and community close by and involved in shaping the care to be provided was vital to respectful care. [16][17][18][19] Specific to health care determination were the articles by Hughes et al, 17 Richels et al 16 and Walker et al 20,21 where participants expressed that it was crucial J o u r n a l P r e -p r o o f that they, in addition to family members, and communities, be more involved in decisionmaking. For example, the systematic review by Walker et al 20 supported the acceptability of kidney transplantation, however there were concerns when the subject of transplantation remained elusive within discussions with health care providers.…”

“…Four themes emerged from the interviews revolving around time, culturally specific care, health care team relationships, and issues within nursing practice. As apparent in the publications by Richels et al 16 and Hughes et al, 17 the need for interpreters and culturally appropriate and Indigenous specific resources was pinpointed. Further, there were recommendations for "having cultural input into changes in health service systems; nurses having better access to and engagement with culturally appropriate social workers and cultural support personnel; and the promotion of kidney nursing to Ma ōri and Pacific students."…”

“…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.…”