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Identifying barriers to preventive care among First Nations people at risk of lower extremity amputation: a qualitative study

Tyrell Wees, Mamata Pandey, Susanne Nicolay, Juandell Windigo, Agnes Bitternose and David Kopriva
October 10, 2023 11 (5) E906-E914; DOI: https://doi.org/10.9778/cmajo.20220150
Tyrell Wees
College of Medicine (Wees, Kopriva), University of Saskatchewan; Research (Pandey), Saskatchewan Health Authority; Wellness Wheel Medical Clinic (Nicolay), Regina, Sask.; Muskowekwan First Nation (Windigo), Lestock, Sask.; George Gordon First Nation (Bitternose), Regina, Sask.
BSc MD
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Mamata Pandey
College of Medicine (Wees, Kopriva), University of Saskatchewan; Research (Pandey), Saskatchewan Health Authority; Wellness Wheel Medical Clinic (Nicolay), Regina, Sask.; Muskowekwan First Nation (Windigo), Lestock, Sask.; George Gordon First Nation (Bitternose), Regina, Sask.
PhD
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Susanne Nicolay
College of Medicine (Wees, Kopriva), University of Saskatchewan; Research (Pandey), Saskatchewan Health Authority; Wellness Wheel Medical Clinic (Nicolay), Regina, Sask.; Muskowekwan First Nation (Windigo), Lestock, Sask.; George Gordon First Nation (Bitternose), Regina, Sask.
RN BA
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Juandell Windigo
College of Medicine (Wees, Kopriva), University of Saskatchewan; Research (Pandey), Saskatchewan Health Authority; Wellness Wheel Medical Clinic (Nicolay), Regina, Sask.; Muskowekwan First Nation (Windigo), Lestock, Sask.; George Gordon First Nation (Bitternose), Regina, Sask.
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Agnes Bitternose
College of Medicine (Wees, Kopriva), University of Saskatchewan; Research (Pandey), Saskatchewan Health Authority; Wellness Wheel Medical Clinic (Nicolay), Regina, Sask.; Muskowekwan First Nation (Windigo), Lestock, Sask.; George Gordon First Nation (Bitternose), Regina, Sask.
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David Kopriva
College of Medicine (Wees, Kopriva), University of Saskatchewan; Research (Pandey), Saskatchewan Health Authority; Wellness Wheel Medical Clinic (Nicolay), Regina, Sask.; Muskowekwan First Nation (Windigo), Lestock, Sask.; George Gordon First Nation (Bitternose), Regina, Sask.
BSc MDCM
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    Figure 1:

    Interplay of social barriers that perpetuate diabetic foot complications. Note: LEA = lower extremity amputation.

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    Table 1:

    Main themes, intermediate theme and quotes from focus group with community health care teams and patients*

    Main themeIntermediate codesQuotes from participants
    Factors affecting health care accessServices available within communities“We help them stay on top of their appointments ‘cause, you know, sometimes people when noncompliant, sometimes it’s because they forgot or whatever. So with our high-risk clients, we try to keep on top of their appointment. We’ll call and remind them and make sure that they in Connected for medical transportation to make sure that they have a right to their appointment.” (CHCT 12)
    Funding“While provincial health stopped funding Podiatry services, we are covered through Non-Insured Health Benefits (NIHB) we didn’t even realize it as a home care team. You can make this appointment. It’s not going to cost you a thing and you’re treaty number NIHB will cover it, so we make sure to make them aware.” (CHCT 11)
    Lack of primary health care“Lots of people don’t have family doctors. We see whoever we can see when we need to see a doctor … there’s times too where we can’t get their doctors to sign off on medications but they need refills. But there are circumstances where the doctor will say I’ll renew for 1 month, so we’ve arranged the refills for a month and then we got to make darn sure that the person comes in to see the doctor.” (CHCT 3)
    Travel barriers“So far we’ve got 3 vans and 2 are used for dialysis patients and the vans run Monday, Wednesday, Friday for dialysis, sometimes Saturday, Tuesday and Thursdays. The vans are used for people to See specialists.” (CHCT 14)
    “The travel rates has been like that for maybe 20 years …, it hasn’t changed. We give them $57.60 to go to Regina for a specialized appointment.” (CHCT 5)
    “And it’s kind of hard to find someone to drive you to Regina for $57 with the cost of gas.” (Patient 1)
    Racism and mistrust“Most of us, they don’t trust people from here. They don’t trust that they are professional enough to keep things confidential so that a barrier to accessing care.” (CHCT 6)
    “As a nurse, I had a sister who had an issue with her leg. The first thing I told her, one, go to the hospital, go to emergency, two, tell them you’re not drug-seeking because your First Nation, they’re going to assume that right away, three, ask for these tests, let’s rule out a break because it’s so swollen, let’s see if there’s a clot. Then the doctor spent less than 5 minutes with her, told her she had a skin infection, and sent her home. She walked on that leg for another week, her leg was broken!” (CHCT 17)
    “Big pharma are driven by greed. They probably have the cure to diabetes but they won’t make as much money.” (Patient 5)
    “It comes down to talking with people who trust, trust is big with First Nations people. The way you talk to them will be the deciding factor if they’re going to listen to you or if they’re going to be noncompliant.” (CHCT 1)
    Poor patient–provider communication“When my diabetes was out of control, doctor said I could take up to almost 100 units of insulin a day. I did not want to do that. So I started keeping track of what and how much I was eating, exercise daily, then it comes under control. One day, I went talk with him, and again his plan for me was just giving myself higher doses of insulin. I did not agree with that and I thought, geez, this is coming from a doctor. His solution for my high sugars is to just keep giving myself more insulin.” (Patient 7)
    “I don’t know if he understood that they were taking his legs because he didn’t speak English too well, he spoke his own language when he woke up, he’s like, oh, what happened? So yeah that was a big loss for him.” (Patient 2)
    Personal factors“I think the generational trauma has caused a lot of it, so we look at the they’re doing, drugs, alcohol model; that is just a painkiller to them. There’s extensive trauma from childhood that we’ve never dealt with, like the abuse. So I said before, so the trauma leads to a lot of illnesses too within your body.” (CHCT 16)
    “I’ve had diabetic ulcers and holes at the bottom of both my toes that went on for 6 years because I wouldn’t leave work and sit there and let them heal well, now they’re healed, but now I have a bone infection in my toe and I’m waiting for the doctor to phone me to tell me whether they’re going to put me on IV to heal my bone or else if they’re just going to cut off my big toe.” (Patient 3)
    “There’s a stigmatism, I know that my client who has cancer and she is treating both traditional and Western, she does not tell her doctor that she is treating with traditional medicine. She’s scared to be blamed … that this is why it’s not working or a lot of times the doctors don’t understand the traditional ways right so right away there you get that stigmatism like you’re doing something wrong.” (CHCT 9)
    “We have a dietician, she gives us the foods but I have a problem a lot other people in the community have the same problem … . It’s really hard for the people to follow the diet because of financial issues.” (Patient 4)
    COVID-19 impacts“Pre-COVID, we had our yearly health fair where every program that health and wellness offers where we set up booths and provided that information.” (CHCT 7)
    Impacts on patient careHealth care experience“A few years back, client phoned me, I went over there right away. She was having a stroke, I took her to the hospital. She had 2 mini strokes on the way to the hospital and they still made her sit. I went up to the front and I tried I just told them where I was from and I was a CCA in community and how we’ve been sitting here just about an hour. She’s now she had a massive stroke. Her face is red now. I explained to them right away when we first got in here that she’s having a stroke, her high blood, her blood pressure, her sugars are way up. I said she’s going to have a heart attack, but they just let her sit there. Finally, when she did have a massive stroke there, that’s when they raced around.” (CHCT 2)
    “People in the community are scared to lose their toes or their feet. A client just refused to go see the doctor and his big toe turned black only then he went to the hospital ended up losing that toe. Because he waited too long, when the big toe started to heal, the other toes got infected, so he lost his foot. That person eventually lost his 1 limb below the knee and that all started, just from the big toe.” (CHCT 4)
    Health care coordination“We do our best to refer them to Podiatry and connect them, if it’s serious enough, with the Wellness Wheel doctors because they offer such great services to the community. We trust that they’re going to send them to the right specialists to get the issues taken care of as quickly as possible.” (CHCT 12)
    “A client from this community, discharged from hospital, has below the knee amputation. He had an instrument catheter. He wanted his meds and his leg site was still fresh, so his bandages were leaking … . So that I could change on my own but as for everything else, I was kind of lost as to what to do with this man. I looked on his eHealth and even that was like barely helpful, so it was really hard coordinating care for that fellow.” (CHCT 15)
    Attitudes and beliefs“We had a single father last year, discharged himself early with a VAC dressing because he had young kids all under the age of 12 and he was our primary provider … . They come home early, a lot of them do discharge themselves and then they always end up going back all the time.” (CHCT 6)
    After-care“Client got fitted … . This bone here [indicating tibia] just rubs on that prosthesis and he’s always got it open, it hasn’t been infected where it’s bothering him … it’s so frustrating because we went on September, for the 8th appointment … . They filed the prosthesis down. It’s still worse, so it’s been quite frustrating with his walking … I go home for lunch every day because of his health. His heart is also working only at 20% and like yesterday I went home and he fell and he couldn’t get up, so he had to wait till I got home.” (CHCT 8)
    SolutionsStronger partnerships with urban care providers“Here, it works good with the Wellness Wheel, there’s always some who advocate in there with the doctor. But like, somewhere else, there’s not going to be someone out there advocating for you.” (CHCT 10)
    Improved education“Consistency is a major thing … also education on those pills ‘cause I didn’t know taking metformin was no good for my kidneys. I took metformin for 12 years. And then doctor said I need to get you off metformin. Because metformin is filled with chalk, actually blocks off your kidneys.” (Patient 6)
    “For people with first-time diagnosis, it would be good for like a doctor to explain to people after years of being diabetic about losing the veins and sensation in your leg and the circulation.” (Patient 8)
    Innovative strategies“But I start eating less, just small portions and that the nurses give me, and eating less done more good than medicine, I didn’t really change what I eat … I started eating less. I went from 238 to 192; my last A1c was 6.8, it went down as low as 5.8.” (Patient 10)
    • Note: A1c = glycated hemoglobin, CCA = continuing care assistant, CHCT = community health care team, IV = intravenous, VAC = vacuum-assisted closure.

    • ↵* Patients were people who had undergone lower limb amputation or were at risk of amputation.

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CMAJ Open: 11 (5)
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1 Sep 2023
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Identifying barriers to preventive care among First Nations people at risk of lower extremity amputation: a qualitative study
Tyrell Wees, Mamata Pandey, Susanne Nicolay, Juandell Windigo, Agnes Bitternose, David Kopriva
Sep 2023, 11 (5) E906-E914; DOI: 10.9778/cmajo.20220150

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Identifying barriers to preventive care among First Nations people at risk of lower extremity amputation: a qualitative study
Tyrell Wees, Mamata Pandey, Susanne Nicolay, Juandell Windigo, Agnes Bitternose, David Kopriva
Sep 2023, 11 (5) E906-E914; DOI: 10.9778/cmajo.20220150
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