{"id":3887,"date":"2018-04-30T14:37:30","date_gmt":"2018-04-30T21:37:30","guid":{"rendered":"https:\/\/cansolveckd.com\/?p=3887"},"modified":"2018-07-23T16:15:45","modified_gmt":"2018-07-23T23:15:45","slug":"research-team-builds-relationships-to-improve-indigenous-patients-knowledge-of-kidney-disease-treatment-options","status":"publish","type":"post","link":"https:\/\/cansolveckd.com\/news\/research-team-builds-relationships-to-improve-indigenous-patients-knowledge-of-kidney-disease-treatment-options\/","title":{"rendered":"Research team builds relationships to improve Indigenous patients\u2019 knowledge of kidney disease treatment options"},"content":{"rendered":"

\"\"In Canada, there are many educational materials or tools \u2013 such as booklets, websites and videos \u2013 for patients to learn about chronic kidney disease and treatment options. To meet the needs of patients who aren\u2019t fluent in English or French, some of these tools have been translated into other languages.<\/p>\n

However, sometimes the content doesn\u2019t translate well, and important cultural connections aren\u2019t made. As a result, patients and families may not have the information they need to make informed decisions about treatment options. That\u2019s a lesson clinical nephrologist (kidney specialist)\u00a0Dr. Joanne Kappel<\/a>\u00a0has learned over her many years of practice in Saskatoon where she sees a large number of Indigenous patients and families.<\/p>\n

\u201cSome of the words used in the educational tools aren\u2019t even in Indigenous languages,\u201d says Dr. Kappel. \u201cWe need to develop tools so they make sense to Indigenous people.\u201d<\/p>\n

Working together<\/h4>\n

To fill that gap, Dr. Kappel and\u00a0Dr. Carol Bullin<\/a>, also based in Saskatoon, are overseeing one of Can-SOLVE CKD\u2019s patient-oriented research projects,\u00a0Improving Indigenous Patient Knowledge about Treatment Options for Failing Kidneys<\/a>. The project is taking place in British Columbia, Saskatchewan and Ontario with different team members connecting with Indigenous communities in their respective provinces to co-develop educational materials. The materials will be tested in additional communities and ultimately shared with, and adapted by, other Indigenous communities across the country.<\/p>\n

\u201cBy working together to develop educational tools that are culturally specific, we will have content that is relatable and relevant to the daily lives and practices of Indigenous patients and their families,\u201d says Dr. Bullin. \u201cThis will help with sharing knowledge and making informed decisions about treatment options.\u201d<\/p>\n

Dr. Kappel adds that this isn\u2019t a traditional research project in the scientific sense. \u201cThis is sitting down with Indigenous people and other members of our research team and working together to develop tools that people can use.\u201d<\/p>\n

Dr. Bullin agrees. \u201cThis is qualitative research looking at lived experiences of people\u2019s own interpretations of their kidney condition.\u201d<\/p>\n

One in 10 Canadians are living with kidney disease. Working with Indigenous peoples is particularly important because they experience the disease at a higher rate than the overall population.<\/p>\n

Drs. Kappel and Bullin, who are co-leading the project\u2019s initiatives in Saskatchewan, notice the disparity. For example, while the Canadian healthcare system doesn\u2019t measure the rate of chronic kidney disease by ethnicity, it\u2019s estimated that in Saskatchewan where Indigenous peoples make up about 16 percent of the overall population, about 50 percent of patients on dialysis to treat advanced kidney disease are Indigenous.<\/p>\n

Building trust<\/h4>\n

The Saskatchewan team is investing a lot of time up front on building relationships with the northern community of \u00cele-\u00e0-la-Crosse where they will work with community members to co-develop educational tools. \u201cWe are doing a lot of background work of initiating and building community engagement to develop a relationship of trust,\u201d says Dr. Kappel.<\/p>\n

\u201cThe big piece with this project is that you can\u2019t just go into the community and say, \u2018OK. We\u2019re here. Can we recruit participants?\u2019\u201d says Dr. Bullin. \u201cWe have to be advised and integrate culture and traditions into the project.\u201d<\/p>\n

The team has worked with Elder George Lalibert\u00e9 to be properly introduced to \u00cele-\u00e0-la-Crosse. \u201cIn terms of being able to make connections, he knows everybody,\u201d says Dr. Bullin. \u201cHe\u2019s been invaluable in guiding us and directing us for our foundational work.\u201d Sharing in cultural practices, the team has participated in two sweat lodges and a feast. As well, at the start of meetings, Elder George is presented with ceremonial tobacco, and he opens and closes meetings with a prayer.<\/p>\n

\u201cEvery Indigenous group is different, and it\u2019s been an honour participating in the culture and traditions of \u00cele-\u00e0-la-Crosse,\u201d says Dr. Kappel.<\/p>\n

Working with patient advisors<\/h4>\n

As a patient-oriented research project, it\u2019s essential patient partners \u2013 patients and their family or friends who play caregiving roles \u2013 are involved on the research team. In addition to Elder George\u2019s contributions, Dr. Kappel has received general advice about working with Indigenous peoples from Mary Beaucage who is Co-Chair of Can-SOLVE CKD\u2019s Patient Council and a member of the network\u2019s Indigenous Patient Engagement and Research Council.<\/p>\n

In Saskatchewan, the bulk of patient partner participation will be with community members of \u00cele-\u00e0-la-Crosse. \u201cThese patient partners will make up our Educational Working Group, and although they may come from the same community as Elder George, they will have different lived experiences and ideas,\u201d says Dr. Bullin. \u201cWe need that diversity.\u201d<\/p>\n

Developing a relationship<\/h4>\n

To get to know the people of \u00cele-\u00e0-la-Crosse better, to learn from them, and to provide them with useful information about kidney health, a Kidney Wellness Day was held in the community in March 2018. The event was a collaborative partnership among members of the community, the Can-SOLVE CKD team, the Saskatchewan Branch of the Kidney Foundation of Canada, and the Chronic Kidney Disease Clinic of Saskatoon\u2019s St. Paul\u2019s Hospital, including the clinic\u2019s Kidney Community Health program.<\/p>\n

\u201cTogether with Elder George, a dietician, a diabetic nurse educator, a clinical nurse educator, a pharmacist, a patient educator and a member of the Kidney Foundation, we had booths and three different sessions where people could come and go and learn what they wanted about topics such as diet, drugs, and how your kidneys work,\u201d says Dr. Kappel.<\/p>\n

\u201cAnd we used pre- and post-event quizzes to determine community members\u2019 understanding of kidney disease before and after the information session,\u201d says Dr. Bullin.<\/p>\n

In a follow-up meeting, the presenters learned that the Elders of the community were very pleased with the day and that they had received many comments from community members about how they felt it had been informative, helpful and interactive.<\/p>\n

Achieving project milestones<\/h4>\n

The research project was initiated in 2016 and is expected to run through to the end of 2020. Key steps completed to date include:<\/p>\n