Program Report: Nîsohkamâtowak—Helping Patients and Families Living With Kidney Disease in Northern Saskatchewan

Abstract

Purpose of the Program:

Nîsohkamâtowak, the Cree word for Helping Each Other, is an initiative to close gaps in kidney health care for First Nations and Métis patients, their families, and communities in northern Saskatchewan. Nîsohkamâtowak emerged from a collaboration between the Kidney Health Community Program and First Nations and Métis Health Services to find ways to deliver better care and education to First Nations and Métis people living with kidney disease while acknowledging Truth and Reconciliation and the Calls to Action.

Sources of Information:

This article describes how traditional Indigenous protocols and storytelling were woven into the Nîsohkamâtowak events, gathering of patient and family voices in writing and video format, and how this work led to a collaborative co-designed process that incorporates the Truth and Reconciliation: Calls to Action into kidney care and the benefits we have seen so far. The teachings of the 4 Rs—respect, reciprocity, responsibility, and relevance, were critical to ensuring that Nîsohkamâtowak reports and learning were shared with participants and the communities represented in this initiative.

Methods:

Group discussions and sharing circles were facilitated in several locations throughout northern and central Saskatchewan. Main topics of discussion were traditional medicines, residential schools impact, community and peer supports for kidney disease patients, and cultural safety education for health care providers.

Key Findings:

The general themes selected for improvement were education, support within the local community, traditional practices and cultural competency, and delivery of services. To address these gaps in kidney care, the following objectives were co-created with First Nations and Métis patients, families, and communities for Kidney Health to provide culturally appropriate education and resources, to ensure appropriate follow-up support to include strengthening connections to communities and other health authorities, to incorporate traditional practices into program design, and to ensure appropriate service delivery across the spectrum of care with a focus on screening and referral, which is strongly linked to coordination of care with local health centers.

Implications:

As a result of this work, the Kidney Health Community Program restructured the delivery of services and continues to work with Nîsohkamâtowak advisors on safety initiatives and chronic kidney disease awareness, prevention, and management in their respective communities. The Truth and Reconciliation and Calls to Action are honored to close the gaps in kidney care.

Limitations:

Nîsohkamâtowak is a local Kidney Health initiative that has the good fortune of having dedicated funding and staff to carry out this work. The findings may be unique to the First Nations and Métis communities and people who shared their stories. Truth and Reconciliation is an ongoing commitment that must be nurtured. Although not part of this publication, the effects of COVID-19 have made it difficult to further advance the Calls to Action, with more limited staff resources and the inability to meet in person as in the past.

What was known before

The burden of kidney disease for people living in northern Saskatchewan is significant and current models of care do not meet the needs, cultural values, and preferences of First Nations and Métis patients and families.

What this adds

In collaboration with First Nations and Métis patients, families, and Elders, Kidney Health partnered to design and integrate a culturally sensitive Home First model of care into the daily operations of the Kidney Health Community Program (KHCP). Together, we worked to better understand how personal, family, and community factors relate to improved quality of care outcomes. Nîsohkamâtowak, the Cree word for Helping Each Other, is about recognizing and acknowledging the Truth and Reconciliation: Calls to Action and closing the gaps in kidney health care for First Nations and Métis patients, their families, and communities.

This article describes the traditional protocols and storytelling used, and how this work led to a collaborative co-designed process that incorporates the Calls to Action into kidney care and the benefits we have seen so far.

Purpose of the Program

The burden of kidney disease for people living in Canada is significant. According to the Kidney Foundation of Canada reports Facing the Facts 2020 ¹ and the Canadian Organ Replacement Register (CORR) annual statistics 2019, ² 1 in 10 adult Canadians has kidney disease, or 4 million people. ³ The CORR statistics (excluding Quebec) show that the leading cause of kidney failure is diabetes at 38% and the number of people living with end-stage kidney disease has grown 35% since 2009. Of note, more than 50 000 Canadians are being treated for kidney failure. ²

Overall measures of health and life expectancy from kidney disease are improving, but significant health inequities continue between population groups, socioeconomic levels, and geographical areas in health outcomes. As with many chronic conditions, chronic kidney disease (CKD) rates, morbidity, and mortality worsen according to levels of disparity on social determinants on health. Populations with greater disparity have higher prevalence and are more likely to be hospitalized for care relating to CKD.^{4 -8}

The CKD and its related comorbidities are more prevalent among First Nations than non-First Nations people, and at diagnosis, First Nations people present with more advanced disease.^{9 -11} As reported by Thomas et al, ¹² in Saskatchewan, First Nations had higher burden of CKD severity, used fewer home-based dialysis therapies, and had longer travel distances than their non-First Nations counterparts. Clearly, more research and innovative solutions are needed to design a culturally sensitive model of care, improve access and utilization of home-based dialysis therapies, and better understand how personal, family, and community factors relate to improved quality of care outcomes.

In partnership with First Nations and Métis Health Services, the Saskatchewan Health Authority (SHA) Kidney Health program started work provincially with patients to better address the Truth and Reconciliation Commission of Canada ¹³ recommendations and close the gaps in kidney care. This document, released in 2015, lists 94 action items to “. . . readdress the legacy of residential schools and advance the process of Canadian reconciliation.” Of the 7 items under “Health,” the Kidney Health Programs and local partners are collectively working to address 4 of these Calls to Action:

• Item 19: “identify and close gaps in health outcomes between Aboriginal and non-Aboriginal communities”;

• Item 20: “recognize, respect, and address the distinct health needs of the Métis, Inuit, and off-reserve Aboriginal Peoples”;

• Item 22 (iii): “those who can effect change within the Canadian healthcare system . . . recognize the value of Aboriginal healing practices and use them in the treatment of Aboriginal patients in collaboration with Aboriginal healers and Elders . . .”;

• Item 23: “Provide cultural competency training for all healthcare professionals.”

According to the report on End-Stage Renal Disease Among Aboriginal People in Canada: Treatment and Outcomes, ⁹ interventions to improve chronic care and end-stage renal disease should include 3 categories: create supportive environments—incorporation of culturally appropriate practices to improve access; strengthen community action—identifying and planning for local needs to improve access and fostering patient and community empowerment in addition to collaboration between communities and between different levels of government toward innovative interventions; and delivery system design and reorientation—improving responsiveness to local needs, capacity building, culturally safe practices, and providing service closer to home. ⁹ It remains imperative to address and close these gaps in kidney care for First Nations and Métis patients, their families, and communities.

After many weeks of consultation, incorporating traditional protocol, Elder guidance and storytelling, Nîsohkamâtowak, the Cree word for Helping Each Other, was chosen to reflect the spirit of this initiative by friends and colleagues at First Nations and Métis Health Services, KHCP Improvement Team, and First Nations and Métis patients, families, and community members. Reconciliation and addressing the Calls to Action is critical to guide this collaborative work, along with the SHA goal to provide the best patient- and family-centered care possible. Relationship building is a key component through which we can “help each other.” This approach is intentional about following Indigenous traditional protocols and creating safe spaces for those relationships to grow.

This partnership served to co-create strategies to incorporate tradition and protocol in planning, delivery, and evaluation of the Nîsohkamâtowak events, patient interviews and sharing circles, and actions plans to better address Truth and Reconciliation. The Nîsohkamâtowak initiative, results, and impact on Kidney Health programming have led to a strong partnership with First Nations and Métis patient and families.

Home-Based Dialysis—Peritoneal Dialysis (PD) and Home Hemodialysis (HHD)

Currently, the uptake of home-based dialysis therapies in First Nations and Métis communities is low in the Saskatoon Kidney Health program: PD 17.2% (27 of 157 patients on PD) and HHD 12.0% (3 of 25 patients on HHD). PD is an important model of home-based therapy to avert or delay the need for hemodialysis and uses the peritoneum and dialysate solution to clean the blood. The HHD is done in the patient’s home, where blood flows from the patient’s vascular access through a dialysis machine. The dialysis machine cleanses the blood of extra waste and fluids and sends the clean blood back into the body. There are significant benefits from PD and HHD modality usage for the health system, including significant cost differences between hospital-based, satellite, and home-based dialysis and lower resource utilization with home dialysis.^5,7 Other substantial benefits for patients include not having to fit into rigid health service schedules and a reduction in travel time and costs.^3,7 Supporting the patient to choose the best home-based modality has been shown to have a great impact not only on health-related outcomes but also on quality of life. ⁴ Thus, it is important to consider the social implications of each modality on the patient’s life and tailoring a patient’s care pathway will enhance the uptake of home-based dialysis therapies and quality of life, should they choose either PD or HHD.^5,8

Program enhancements for PD and HHD are needed to better understand and serve these patients in their home communities. According to a recent publication by Richels et al, ¹⁴ home PD offers better quality of life, lessens the burden of travel, requires fewer dietary restrictions, and is approximately half the cost of hospital-based dialysis, yet remains significantly underutilized by First Nations communities. The reasons for the disparity in utilization and the barriers to home dialysis in First Nations communities in Saskatchewan need to be addressed to improve quality of care. ¹⁵

Unique challenges for PD and HHD in First Nations and Métis communities include rapidly growing populations with higher rates of end-stage renal disease at a younger age, poor housing with a mix of urban, inner city, reserve, and remote homes, each with different challenges, poor water quality, socioeconomic disadvantages, and limited access to treatment facilities.^4,8,9,14 Indigenous patients experience higher technique failure, less survival benefit, higher rates of peritonitis, higher PD dropout rate and transfer to hemodialysis, and a lack of culturally sensitive models of care.^{9,11,14,16,17} There is also a lack of information and specific kidney health education for health centers on reserves and the potential of home-based therapies is not routinely talked about (Nîsohkamâtowak 2017).

Method

The KHCP held several Nîsohkamâtowak events at Wanuskewin, Meadow Lake, and La Ronge, in partnership with the SHA, First Nations Improvement Team members, and Elders. These events were guided by a holistic participatory framework honoring Indigenous protocols, traditions, culture, and spirituality. The events were advertised using posters and brochures. Patients and their families were invited to attend. Those that chose to attend, signed an SHA media consent and release form. Sharing circles embraced conversational methods/storytelling to gather knowledge and wisdom regarding patient and family experiences living with kidney disease. Videos/short stories were gathered to promote a better understanding of cultural competency, blending traditional and Western medicines, to improve the care experience for patients and families in their home communities.

The teachings of the 4 Rs—respect, reciprocity, responsibility, and relevance—also guide the KHCP Improvement Team. This preliminary work helped to inform how to tailor a culturally sensitive model of care for PD as a modality option for First Nations and Métis people. Of note, the Nîsohkamâtowak collaborative model has demonstrated positive outcomes related to the Calls to Action. It is also unique in terms of integration of protocol, prayer, and Elder guidance in planning, community partnerships, traditional medicine teachings, and building cultural competency.

Nîsohkamâtowak objectives are the following:

• To identify factors that make significant contributions to improved health status for patients who choose PD as a treatment modality;

• In collaboration with First Nations and Métis people and Elders, improve access to PD, and design a culturally sensitive model of care;

• To engage health care teams in building cultural competencies, storytelling and active listening, and to participate in quality improvement with First Nations and Métis community partners;

• To better understand personal, family, and community factors related to improved PD and quality-of-care outcomes; and

• To honor the lived experience of patients and families, and the wisdom of the Elders.

Figure 1 shows some of the participants at the Wanuskewin Event in 1 of the group sessions that explored kidney health.

Figure 1.

Photograph provided with consent, showing a group session at the Wanuskewin Event.

We cannot improve outcomes without the voice and perspectives of the people in which we serve. This requires active listening on the part of the health care professional. “Reconciliation must inspire Aboriginal and non-Aboriginal peoples to transform Canadian society so that our children and grandchildren can live together in dignity, peace, and prosperity on these lands we now share”—Truth and Reconciliation 2015. ¹³

Key Findings

Nîsohkamâtowak 2015

In October 2015, the first Nîsohkamâtowak event was held at a traditional ceremony site at Wanuskewin Heritage Park Saskatoon, Saskatchewan. The purpose of the event was to gather First Nations & Métis people living with kidney disease to co-develop a plan to deliver better education, treatment, and care. Nîsohkamâtowak helped develop a strong partnership to create action plans for better care. Figure 2 shows a representation of the feathers that were incorporated as part of the sharing circle and were passed between participants when they told their stories.

Figure 2.

Feathers symbolizing sharing circle theme.

Nîsohkamâtowak incorporates traditions, culture, and spirituality in a safe, open atmosphere that promotes equal opportunity for all to share and learn, where health care professionals listen versus teaching and talking. Audio and video professionals were present at the event. They recorded footage of the events and produced educational video clips for use by Kidney Health programs, and with First Nations & Métis Health Services assistance.

The short storytelling videos can be viewed at https://www.stpaulshospital.org/foundation/donate/nisohkamatowak.php?page=270

• Video 1: Nîsohkamâtowak

• Video 2: Chronic Kidney Disease Education

• Video 3: Nîsohkamâtowak Process

• Video 4: Challenges

Each day began and ended with a tobacco offering to an elder who prays in both English and his or her own native language. Traditional foods were served for breakfast, lunch, and snacks. As a thank you gift, participants were given a small fresh fruit basket, a coffee mug, and a bag of muskeg tea that was picked and blessed by an Elder from First Nations & Métis Health Services. Facilitators were present to guide and mediate discussions. The facilitators used small group discussion format, large group discussions, and sharing circles, providing a safe, trusting, and judgment-free environment that made it easier for people to openly share ideas and stories. These activities link to the Call to Action items 19, 20, 22, and 23. Costs to host the events were provided by St. Paul’s Hospital Foundation Saskatoon, Meadow Lake Tribal Council, Lac La Ronge Indian Band, and Peter Ballantyne Cree Nation. A total of 27 First Nations and Métis kidney patients and family members participated in the Wanuskewin event.

The common themes expressed by participants included the following:

• The need for communication and culturally appropriate understanding and acceptance;

• Incorporation of Western and traditional ways—medicines, foods, prayers and customs;

• Patients want to guide their own care;

• “Up to date” and timely education;

• Peer support and workshops in their communities;

• Education—improved kidney health education, information delivery and print resources;

• Wellness—improved support for healthy diet and exercise; and

• Cultural Competency—better understanding by health providers, translation of education materials into indigenous languages, and as part of patient visits.

Many participants at the first event recommended that Nîsohkamâtowak workshops be held in communities throughout northern and central Saskatchewan. The KHCP proceeded to host Nîsohkamâtowak events in Meadow Lake (Meadow Lake Tribal Council), La Ronge (Lac la Ronge Indian Band) and Pelican Narrows (Peter Ballantyne Cree Nation), North Battleford, Saskatoon, and Touchwood Agency Tribal Council. Participants at the 2015 Nîsohkamâtowak gathering also recommended that a follow-up event should take place at Wanuskewin every 2 years. The themes for future events are chosen in collaboration with First Nations and Métis patients and their families and will reflect current needs and preferences for enhancing kidney care.

Sharing Circles 2016 and 2017

In 2016, KHCP work focused on 2 of the common themes that emerged from Nîsohkamâtowak discussions: welcoming traditional medicine in a Western medicine world and learning from each other.

Nîsohkamâtowak Sharing Circles took place in Meadow Lake, La Ronge, and Pelican Narrows. Overall, the events were a success with 54 participants in total. Major themes of community discussions mirrored those of the initial Nîsohkamâtowak event and included the following:

• Education—More education needed (health care staff, patients, families, and those who do not already have kidney disease);

• Cultural training for health care providers to promote understanding and acceptance;

• Traditional medicine—there is a place for both Western medicine and traditional medicine that can and should both exist in our world and must follow the land-based teaching of the Elders;

• Communication issues—listen more and let the patient be in charge; and

• Continue our current work, but seek to partner more with existing health care staff, educators, and Elders from the communities we visit.

In follow-up to the sharing circle discussions, 4 patients offered to share their health care experiences and their words gave the team time to pause and reflect on the pressing need to advance the Calls to Action:

I need fasting blood work and I have to book a medical taxi so far in advance or only at certain times of the day that I forget to keep fasting or I can’t go hungry that long. I have no money or car to drive myself or I would do that.

When you go to the hospital and you get yelled at by doctors and told they aren’t going to do anything for you so go home, you are afraid to go back.

What rights do we have and who can we talk to that can advocate for us when we are treated poorly while getting healthcare services?

I have had diabetes for 30 years, so why has no one ever taken the time to teach me these things before? No one has ever explained why I need bloodwork done, they just get mad at me when I don’t get it done. I don’t even understand what’s being tested so why would I do it?

The sharing circles focused on opportunities to better understand why First Nations people do not generally use home-based dialysis therapies (PD and HHD) and to develop some ideas for improving access and uptake. The themes that emerged from the sharing circles in 2017 were the following:

• Education and information about diet, diabetes, and kidney disease is nonexistent, too general, anecdotal, or not trusted (education and information need to be specific and culturally appropriate).

• Community Support is inconsistent (support needs to be consistent and mentors and role models need to be developed).

• Leadership and Culture—Elders, traditional medicines and foods, and local leadership need to be more involved in kidney health.

• Training and Support provided by the program needs improvement as patients are frightened in the beginning, depressed and anxious, or feel unprepared (assisted PD options should be available; mentors and role models need to be developed; mental health supports need to be available).

• Logistics—housing, hygiene, storage and supply, water and electricity, and travel are often inadequate (central storage; central locations for PD; local walking programs should be considered).

The themes and findings from Nîsohkamâtowak 2016 are similar to those reported by Richels et al, ¹⁴ in which the authors concluded that strategies to help improve home-based dialysis included improved education, local support, integrated traditional medicine, cultural sensitivity, and leadership prioritization.

Nîsohkamâtowak 2017

Patients and family members, community health workers, and the Improvement Team staff gathered at Wanuskewin in March 2017 to continue the collaboration designed to improve Kidney Health services for First Nations and Métis patients. Nîsohkamâtowak continued to evolve in process, tradition, and protocol based on trust, cultural diversity, and shared learnings.

Participants who attended Nîsohkamâtowak expressed that they learned a great deal from the workshop. Comments such as “this conference made me feel I am not alone,” “this helps me accept my sickness and learn how to take better care of myself in the native way,” and “when I attend these things I leave and want to share everything I learned with my home community” were very common. The exchange of knowledge and ideas, and helping others to feel they have support is the first step in better management of CKD.

Figure 3 is a picture of prairie crocus flowers chosen by the Nîsohkamâtowak team as a symbol to represent spring and family.

Figure 3.

Wahpee Kwanees “Little Flower.”

Participants had the honor of listening to the story of a Residential School Survivor, which truly empowered our hearts and minds. Gilbert Kewistep, Knowledge Keeper, offered these words in Salteaux Kitchi Meg-wetch Kahn-doh-tah-we-ang—A big thank you for listening to our voices.

Tables 1 and 2 show the Nîsohkamâtowak 2017 discussion topics and themes that emerged from this patient and family community event.

Table 1.

Nîsohkamâtowak 2017 Discussion Topics.

Discussion topics
• How do you feel about chronic kidney disease? • What are barriers to receiving kidney health services? • How can we fix these barriers? • What can the Kidney Health program staff do better? • How important to you is kidney health in the youth in your community? • How can traditional medicine be incorporated into Kidney Health programs?

Table 2.

Nîsohkamâtowak 2017 Themes.

Sharing circle themes that emerged

• Patients in charge—let patients and families guide their own care • Education—more timely education at initial diagnosis and at all milestones along the continuum of kidney disease • Support—to accept diagnosis and progression of disease. Support groups in local communities and better education for health care providers on cultural needs, as well as the use of Elders • Communication—improvements are needed between patients/families and health care providers; between health care providers within our program; between our program and health care providers in our patients’ communities • Understanding and acceptance—doctors and other health care providers need more education on traditional ways. Cultural training means a better understanding, leading to acceptance and compassion • Fear—patients and families are afraid to stand up for themselves regarding traditional ways • Youth—work more with schools to provide education on risks and causes of kidney disease, empower teachers to promote kidney health in youth

The general themes highlighted for improvement were education, support, traditional practices and cultural competency, and delivery of services. To address these gaps in kidney care, the following objectives were co-created:

1. Kidney Health commitment to provide culturally appropriate education and resources for patients, families, and communities. This would include youth, adult, family, and community audiences. Areas of focus for education and resources include awareness, prevention, screening, and treatment.

2. Kidney Health to ensure appropriate follow-up support for First Nations and Métis patients and families. This means connections to communities and other health authorities already made will be strengthened, as well as new connections and relationships formed.

3. Kidney Health to incorporate traditional practices into program design. This will involve partnering with Elders, redesigning clinic flow and follow-up visits, and working with our clients to support the use of traditional medicines (alone or in conjunction with Western practices).

4. Kidney Health to ensure appropriate services across the spectrum of care. A key area of focus will be screening and referral, which is strongly linked to coordination of care with local health centers. There is also a need to redesign how treatment options education is delivered to patients and families, with a possible change in structure to being a “Passport to Kidney Health.”

5. All Kidney Health staff should receive cultural competency training and be provided with a variety of modes for self-learning and professional development in this area.

Implications—Closing the Gaps in Kidney Care

Since 2017, the KHCP has continued to work toward a more culturally tailored model of care. Recent comments from First Nations and Métis patients show that Kidney Health is making progress: “We are on the team,” “My traditions and beliefs are respected,” and “Staff care about me.” Both the PD and HHD programs have partnered with rural and remote communities to better support patients in their homes. Kidney Health is currently evaluating the impact of this work on clinical outcomes.

As listed in the Truth and Reconciliation Commission of Canada: Calls to Action 19, 20, 22, and 23, the KHCP has made progress to close the gaps in health care for First Nations and Métis people at risk of developing or living with CKD. The KHCP cannot improve outcomes without the voice and perspectives of the people whom we serve. Having First Nations and Métis people involved in storytelling and sharing important lessons they have learned helps guide everyone in improving kidney care. Kidney Health teams have learned to listen more and let the patient/client be in charge, seek to understand all cultures and traditions and build relationships, that there is a place for both Western and traditional medicine, to continue our current work, and seek to partner more with existing health care staff, educators, and elders from the communities we visit. Table 3 shows the Nîsohkamâtowak Calls to Action progress to date and lists the accomplishments that bring a great sense of joy and pride for Kidney Health.

Table 3.

Nîsohkamâtowak Calls to Action Progress to Date.

Reconciliation item	Accomplishments
19: “identify and close gaps in health outcomes between Aboriginal and non-Aboriginal communities”	• Seek the opinions and guidance of health care colleagues who are First Nations or Métis • Include First Nations and Métis Kidney Health patient representatives in planning and facilitation of World Kidney Day symposiums • KHCP, Saskatoon CKD Clinic team and Can-SOLVE CKD Project Team (Improving Indigenous Patient Knowledge about Treatment Options for Failing Kidneys) 18 partnered with the community of Ile-a-la-Crosse in northern Saskatchewan to host a Community Kidney Wellness Day. Multiple Elders and a traditional medicine man were an integral to this event. Featuring Western and traditional foods, medicines, and knowledge
20: “recognize, respect, and address the distinct health needs of the Métis, Inuit, and off-reserve Aboriginal Peoples.” (Not just on-reserve individuals)	• Kidney/heart/blood vessel health promotion projects with 2 First Nations communities that facilitated the connection of Youth and Elders • Assist and support First Nations and Métis communities’ health care teams to restructure kidney health support to suit their particular community’s health needs • Support and mentor home dialysis patient with education and tools to teach peers, youth, and Elders in home community about kidney health and dialysis • Initial project with 3 Elders and 7 youth, plus 1 health care professional from each reserve; led to follow-up event at 1 reserve planned by 3 youth who invited 2 elders to co-teach workshop with KHCP for 13 youth attendees
22 (iii): “those who can effect change within the Canadian healthcare system . . . recognize the value of Aboriginal healing practices and use them in the treatment of Aboriginal patients in collaboration with Aboriginal healers and Elders . . .”	• Education sessions on traditional medicines (by Medicine Man and Bundle Keeper) for patients, families, and staff • Use of traditional foods and medicines is encouraged by KHCP staff in all community and health care provider presentations regardless of audience or location • Added prayer by First Nations Elder at annual patient memorial for those with kidney disease • Offering tobacco and inviting Elders to be part of planning events and education sessions that include and impact Indigenous people, as well as conduct prayers in both English and their traditional languages
23: “Provide cultural competency training for all healthcare professionals.”	• Kidney Health staff encouraged and supported to attend presentations and Blanket Exercises by First Nations & Métis Health/Representative Workforce; 100% of staff attended • Nîsohkamâtowak videos shared as part of ongoing education and to showcase patients and families • CKD team attended Métis Culture Days • KHCP staff supported to complete U of S College of Medicine Continuing Education Course: The Role of Practitioners in Indigenous Wellness • Cultural competencies built into job descriptions, interview guides, and ongoing staff education • Redesign handouts and education materials in partnership with First Nations and Métis patients and families

KHCP = Kidney Health Community Program; CKD = chronic kidney disease.

Conclusion

The Nîsohkamâtowak initiative is not a research initiative, but an integral part of the daily operational plan for the KHCP. Formal qualitative and quantitative methods were not used, but the results achieved to date show the positive impact of community engagement and incorporation of the Calls to Action 19, 20, 22, and 23 into kidney care program planning, building health care team cultural competencies, and learning about the importance of respecting culture and traditional protocol. The Nîsohkamâtowak process, videos, staff commitment to cultural competency, and positive effect on patient, family, and community experience and engagement have shown tangible progress toward closing the gaps in kidney care and addressing Truth and Reconciliation.

Kidney Health will continue to support First Nations and Métis patients, families, and communities on their healing journey. The incorporation of the Truth and Reconciliation: Calls to Action continue to be implemented throughout the process of delivering patient-centered care for First Nations and Métis patients, their families, and communities. We continue to strengthen relationships and friendships built during the planning and hosting of Nîsohkamâtowak events. The KHCP team works with patient and family advisors, Elders, and health care providers from First Nations and Métis communities to provide guidance in developing better teaching tools and culturally tailored models of care for home-based dialysis therapies.

Future considerations brought forward during peer review include community screening done by culturally competent health care professionals with community support by existing diabetes and support people in the community, the need to include more caregivers in the process, Sanyas or other training related to understanding the effects of colonization on communities for health care professionals, and more work done with youth in terms of education and awareness of diabetes and CKD. These considerations are worth further exploration and align well with advancing Truth and Reconciliation and the Calls to Action, in partnership with patients, families, local communities, and Kidney Health staff.

Limitations

Nîsohkamâtowak is a local Kidney Health initiative that has the good fortune of having dedicated funding and staff to carry out this work. The findings may be unique to the First Nations and Métis communities and people who shared their stories. Truth and Reconciliation is an ongoing commitment that must be nurtured. Although not part of this publication, the effects of COVID-19 have made it difficult to further advance the Calls to Action, with more limited staff resources and the inability to meet in person as in the past. It is hoped that 2022 will bring renewed opportunities to continue to collaborate with First Nations and Métis patients, families, and communities.