Three Perspectives on the Experience of Support for Family Caregivers in First Nations Communities
1.1. Working with First Nations Communities
2. Materials and Methods
2.1. Participatory Action Research
2.2. Participant Recruitment
2.3. Data Collection
3.1. Situating Family Caregiving and Who Needs Care
Caregiving: “It’s Part of Our Nature”
3.2. Overarching Theme: “Hierarchy of Challenge”
The systems themselves are very much built on a hierarchy, a Western type of colonialist mentality. So, for whatever reason, and this has been ongoing for a number of years now, where elected leaders are almost at the top, and then the most vulnerable people who actually put us into office seem to be at the bottom. And then in-between there’s all these programs and services like this hierarchy of like challenge.[Leader]
3.2.1. Theme 1: “Caregiving Is a Demanding Job” Yet, “No One in a Sense Is Taking Care of Them”
3.2.2. Theme 2: Difficult Navigation, “I Am Unable to Access That”
3.2.3. Theme 3: Delayed Assessments and Treatment, “and I Don’t Know How They’re Being Missed”
3.2.4. Theme 4: Disconnected Health Records, “It’s Kind of on You to Follow Up”
3.2.5. Theme 5: Racism, “It’s Treated Differently”
3.2.6. Theme 6: Social Determinants of Health, “A Lot of These Factors Have Been Developing for the Longest Time”
4.1. Strengths and Limitations
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|20 years and under|
|Prefer not to answer·||2|
|Family Caregivers||Health and Community Providers||Leader|
|Situating family caregiving and Who needs care.|
|Caregiving, “It’s part of our nature”.|
|I am a Cree Nation member from a musical tribe. I am 56 years old and have always been a caregiver. I think I was born into it. [Caregiver]||I know there’s one family member. She lost her dad and mom and her siblings. She’s the only living person in their family with all of the grandkids now …. So she had to take on that role. How it works is all of my sister’s and brother’s kids are my kids. And she is the only one left technically, in the creative life and family values, that is her role. [Health Provider]||And it wasn’t really a pride thing. It was almost like you signed up for this. This is your husband. This is the cards the creator has given you. You will do this. [Leader and Caregiver]|
|“We are all intertwined”|
|I am a caregiver to my son [Name]. I’m one of his caregivers. We all play a role. His immediate family. So, my husband does. And so do my two older children [ages young adults]. We all love [Name]. So we all share in that. And we also get my two sisters. They live nearby. [Caregiver]||I think for us it really is, you know, the unity of my family. It’s not just my immediate family that loves and cares for [Name of sibling], but it’s all of our family. My extended cousins are always looking out for him. …And I witnessed him with second and third cousins and extended family, and they’re the exact same way. [Health Provider and Caregiver]||When healthcare talks about person-centered care we kind of miss the boat, because in our First Nations cultures, we’re so close and our family units are so expansive, we’re all intertwined. … So patient-centered care is important, but because of the interconnectivity of our families, the family is just as important. It’s not just happening to their loved one, it’s happening to you and the whole family at the same time. [Leader]|
|Theme 1: Caregiving is a demanding job, “No one in a sense is taking care of them”|
|There’s a lot of lot of things to consider when you’re taking care of your dependent adult child in your home. That’s what we as caregivers go through. If anything, what I can say for myself as a caregiver is the lack of rest, the lack of sleep. People say, “Oh, you got to take care of yourself. You’ve got to come first [Caregiver Name]”. And there’s most times I turn away and I drive away crying and I just say to myself, “If only you people knew how hard it was to get free” time for myself. |
So the biggest factors in my life are the lack of sleep and the finances because of the cost of living is making it hard to get through the month. Because I also have my grandchildren to take care of as well. [Caregiver]
|I guess the caregivers in this community face a lot of struggles, one maybe being a lack of resources, even racism. And then another thing is they tend to do everything alone. And I think a lot of times that comes from, I guess, us having to have a person who is disabled, whether there were physical, emotional, psychological disabilities. We raised them without having to resort to anybody’s assistance. The caregivers in this community today really need assistance. Some of them can’t get it here [Name of Health Centre] for example, if they’re raising a disabled child. [Community Provider]||So caregiving is a full-time job. And it’s a demanding job. It’s a job, you know. And if there is no funding in place for training on reserve to promote aging in place, you know, the responsibility is left with family caregivers. Nobody else comes to their aid. [Leader] |
Because they’re caregivers, their tendency in my view, is to overlook their own personal health because of the tasks they take on in urgent situations. They take on events or activities or incidents that can be very traumatic and are taken on by the caregiver with no one, in a sense, taking care of them. So there is a need I see to support caregivers every which way possible. [Leader]
|Primarily without support|
|[Professional/Paid] caregivers in this community are really few and far between. Having been struck with RA (Rheumatoid Arthritis), in [year] I found there was nobody that was available to even tell me what the disease was about and what to expect and the whole bit. And when my husband, started experiencing his health problems, that went to a different level. There’s virtually no services for people in this community. He was on heart meds, you know, he had two heart attacks, barely survived. I had to pay for his medication because he’s Metis. We, my family, were really traumatized. [Caregiver & community provider]||I don’t think they get anything [any training or support] unless they go off reserve. And I really don’t understand what kind of programs that we would provide except for maybe how to lift a person up off a wheelchair. I remember working in a nursing home when I was going to college and they taught us all that how to make beds, lift patients and feed them and everything else. Basically, here, I think it’s just a daily life experience. When we’re living with somebody who needs our assistance on a daily basis, we get up, we feed them, we hug them, we love them. It’s just a regular routine. [Caregiver & Health Provider]||Well off the top of my head there is not a specific program that looks at caregiver education or caregiver support. As far as I know, right now we’re looking at what we can do to support the nurses. And we’re hoping for that trickle-down effect if we can get the nurses supported and have the education and the knowledge that would trickle-down to the client and the caregivers, because the caregivers come in with the clients most of the time. So that would be the first barrier there’s no specific program that I know of for caregivers. [Healthcare Leader]|
|Theme 2: Difficult navigation: “I am unable to access that”|
|We’re still where we were in 1985, when my mother passed away. No nurses. I had to change the bandages on my mother’s breast, and I was only 17 years old, and I had to work the at pool hall. So, I’d work during the day and then I’d go home and clean her bandages and cook for her. And nobody taught me what to cook or how to manage her pain. And now again with my sister, who just recently passed away… I had to reach out to them and say, “Hey, listen, my sister has cancer and she’s dying. And I know it’s going to take her life, but I need some help here”. And they’re like, “Oh, she’s not even on the radar”. [Caregiver and Community Provider] |
They offered a program to bring my child to Edmonton to get assessed, put in a special school, but I would have to live in a city because it would be a daytime program, and with my children, I’m unable to move. I’m unable to access that. And they were trying to help her get past her anxiety, [other identifying conditions]. [Caregiver]
|I think just being told what’s going on. Sometimes the family, they take their families to the hospital, and they don’t know what’s going on. Or maybe the doctors or nurses explained, but maybe they may need to involve somebody like a physician’s support in the hospital to explain things well. Because a lot of patients come to me like, “I don’t even know the plan for my child”. I’m like, “I thought you were in the hospital. Did they explain?” “No, they didn’t explain to me anything”. [Health Provider] |
I think there’s lack of [services] for autism, not labeling it, but stating that they’re in that Autism Spectrum area. Learning how to address it and how to teach them to be sociable in these areas. And I know one of our colleagues has a child in that area, but he had the opportunity to go get training in the States. I don’t think there’s any training here. I know there’s another band member who has [child] on the autism spectrum, and they had to move to be near a place that has some type of training …. So there is no training. [Health Provider]
|We are restricted to a lot of where we can move money and how we can help our community members. Yeah, the government says that they give us how many millions of dollars, but then they separated, they divide up, and then the majority goes to ISC. Or. And then we have follow these rules and regulations like when we give home care we can hire someone to come into your house and clean, but it can’t be your family member. But that’s all that people trust is their family members. They don’t want someone to come into their home and look around because of all the trauma that they had experienced through residential school. We’re only allowed one person. And how can we give adequate services to our elders, to our vulnerable, to our disabled with only one person. It takes two people to bath them or lift them. The rules restrict how we deliver our services to our community members and there’s just there’s not enough funding. [Healthcare Leader]|
|Always advocating for better services|
|And what really angers me about this and the point that I’m trying to make is my husband and I, we can argue for services. We can advocate. But there are lots of families out there who can’t. They don’t have the advocacy skills. They don’t have the [pause] I don’t want to say courage because I think all families who go through this, who have handicapped people in their families, they always have to have courage. But there’s a lot of families who are afraid. They’re afraid of institutions. They’re afraid of the government. They’re afraid of authority, of anybody in power. So a lot of people don’t speak out. I shouldn’t need to be a lawyer in order to get somebody’s attention, in order to get my issues addressed. I just think about all of the families who don’t have advocacy skills. And I have relatives who have had to put their kids in care because they didn’t have the resources and they didn’t have the supports to keep their loved ones at home. And they’ve had to put their children in care. And so, as you know very well, that’s what a lot of families end up doing. They either have to move off the reserve or they put their kids in care. [Caregiver]||I see kids in wheelchairs and with unique transportation needs, and I have families with four or five children where more than one child has complex needs. And I can see that like families are struggling and often there’s a history of trauma and all sorts of other things as well. And it’s heartbreaking to watch a family who, based on social determinants of health has such an uphill battle and then is dealing with super complex medical issues on top of it all. So, they need help with all of those things, I mean, travel in and out of the city, accommodation, a navigator who would be able to help them, just orient them to the system where they go for what, where these buildings are where they’re supposed to go for specialist appointments and how to get around the city. Some system level coordination, so care would be coordinated so families wouldn’t necessarily have to have these desperate kinds of appointments all spread out and have to make lots of trips in and out for separate appointments. But to be able to have somebody who you could call on when people needed care, that the health care system is just not that equipped to provide, language services. Oh, gosh, I could go on for a long time. [Health Provider]||With caregiving comes, I think, a very specific expert knowledge for that particular individual. And that is not really always taken, I think, properly. And the caregiver has not just the role of the caregiving, but they’re serving an advocacy role as well because they’re advocating for their home to be fixed or they have to leave their homes to go move off reserve so that they can get better service within Alberta Health Services programs. But they want to stay home, they want to be in community because when you’re in community, you have access to elders, you have access to family, you have access to ceremony. And, you know, and it’s just nice knowing that you’re in your homeland. But there’s not enough to help them, even something as simple as meals. We don’t have a Meals on Wheels service here. So things like that that aren’t even the radar. Everybody’s looking at the immediate crisis needs. And caregivers are not a crisis and when you’re focusing on immediate crisis needs, you can’t get to proactive planning. [Leader]|
|Theme 3: Delayed assessments and treatment, “And I don’t know how they’re being missed|
|There’s a gap where there’s people that have these illnesses and they’re not being tracked. They’re being missed. And I don’t know how they’re being missed, especially if they come from a huge facility, say the [Name] of cancer facility or whatever hospital. Yeah they are getting missed. [Caregiver] |
I mean, I always want to find out things. I was always reading up on pregnancy. And anyway, I figured out that he had cerebral palsy fairly early on. But the doctors would never confirm that. It wasn’t until he was about five or six that they finally confirmed it. But anyway, on a scale of 1 to 5 he’s a 4. This is how the doctor explained it to me on a scale of 1 to 5, with one being normal and five being catastrophic. [Name] is a four. [Caregiver]
The baby that I traditionally adopted when she was born, she was really sickly when I got her. She was just kind of given to me without any information. I knew that at four months old she was in and out of the hospital three or four times with pneumonia. Right away we knew that she was unable to lay flat because she would start aspirating. So, we had to put her at a 45 degree angle. And I took her back to the Pediatrician and told her what was going on. The Pediatrician was really good, but I’d say a month later, she got really sick again. And we got taken to [hospital]. I was treated like I did something wrong. They even accused me of just putting a bottle in her mouth and leaving her to suck the bottle on her own with something propped up against it. And here it was, I was an Indian. There was a lot of racist comments against me and that wasn’t the case. I took care of her like I had carried her right through [pregnancy]. Two years later, we finally found out it was a cleft larynx, so she was aspirating her food and drink for two years. Why was that missed? [Caregiver and Community Provider]
|So we get a lot of requests for things like FASD assessments or children with special needs, where I have concerns about developmental assessments and developmental pediatrics, and there’s a lot of delay and trouble getting those assessments in a timely manner. Mostly x-ray and lab and whatever is pretty straightforward. It’s mostly diagnostics, like where you’re diagnosing somebody with a syndrome where you need the advice of a specialist. It’s not something that I can, like do an x-ray and say, “This is the problem”. It’s somebody who has that specialized knowledge. I can tell that it’s not normal, but it’s outside the scope of family medicine and then it’s like trying to connect them to the appropriate resources. [Health Provider] |
And my experience is that they’re not that well connected. They come to me and they have a lot of different issues that I am not equipped to handle. I can tell them, for this you have to go here or for this let me call this person and we need to bring them into it. So I can kind of be a little bit of a navigator and an advocate, but at the same time, I don’t have the expertise to deal with all the issues myself. Sometimes I feel like I’m a bit of a quarterback, but I’m not necessarily like the whole team, you know? If I’m the whole team, we got a problem. We need a bigger team. [Health Provider]
|And, you know, and then we consider the Indian Act, right? And then we consider the systemic racism and discrimination that is built into those funding mechanisms, along with the societal systemic bias and racism that when our people try to go access service, be it preventive, be it emergency, be it maintenance of health, our people as Indigenous Peoples, number one, are always expecting to be treated differently or to be treated like they’re being a bother for wanting to make sure that their person that they’re caring for or themselves or their child or whoever, that when they’re accessing that service, they feel like you’re going to have to defend something. You feel like you’re going to have a whole list of really great things to defend. And it’s almost like you’re validating why you’re there, seeking the support, and seeking the assistance. And you can’t just have one reason. It’s like we have to have a whole bunch. [Senior Leader]|
|Theme 4 Disconnected health records, “It’s kind of on you to follow up”|
|We do not have access to our own health records, nor is it in our possession at our own health centers. Everybody else has our records. We need those back. [Caregiver] |
There’s the gap in our records, in services, and in coverage. It is impossible to keep track. This is why Jordan’s Principle came about and became an issue because the province took the view that these kids are a Federal Health responsibility. And Federal Health, the Feds said, well, this the provincial health responsibility. So everywhere we turned, we were told, “You got to go talk to somebody else. You’ve got to go see someone else”. So we felt like ping pong balls. You know, we were always told, “Go ask that person, I can’t help you”. So, all of the government officials nobody ever said, “I’m going to help you. And I’m going to find these answers for you”. That never happened. Not once with anybody. [Caregiver]
|Right. So, there is a provincial communication records system. So, a lot of people on reserve are not able to access it, but also there wasn’t any way that physicians off reserve can access Indigenous records. So, it’s like you’re dealing with double edged sword. [Health Provider] |
Right now, we have access to Netcare, but there’s not really a formal communication system between Alberta Health Services and the band or the health centers. If you sent the patient out, it’s kind of on you to follow up and check Netcare to see what happened to them when they went out. No one will really call you unless it’s quite urgent, like, “I’m sending this patient back. We amputated their leg. You probably need to see them tomorrow”. They don’t really let us know. They’re quite busy. Again, they’re also short staffed. Limited staffing is probably the big thing, but we don’t really have much communication. [Health Provider]
|No, our records aren’t connected. So even Alberta Health Services, we have different health care management. So, we have Phantom, we have Meditech, we have Netcare. All of those things are actually going into Connect Care and then there will be one system. But for FNIHB, we have something called CHIP or C-DOM for a communicable disease management. So FNIHB is a bit connected to system, but not really. So CHIP, we can extract information from Netcare. So let’s say if one of our clients goes into an Alberta Health Services Clinic to get immunized, the nurse enters it into Meditech. Well now. Before it didn’t go to Netcare, but now it’s going to Netcare because of COVID. We need those records. And now in CHIP, we have that option of extracting Netcare’s immunization record and merging it into our CHIPS records. So, we do have a bit of that connection, but we don’t have any connection to Phantom, Meditech, or even ConnectCare at this point. [Healthcare Leader]|
|Theme 5 Racism, “It’s being treated differently”|
|I don’t know if mistreated would be the right word. It’s being treated differently. I would have to say yes, going back to when I was going to school, treated differently. My perspective of the health system is that Aboriginal people are treated differently. My son was diagnosed with [Name of illness] in [rural town]. We went to the U of A, for a lot of treatment. From there, we went to Calgary Children’s Hospital, where we went underwent treatment again. And so, there was an apparent treatment difference between the metro hospitals, the metro health professionals and going just for follow up checkups for bloodwork in [local rural town name]. Oh, my gosh. It was like night and day. I could not believe the difference between the local hospital and those big hospitals. Even my son knew it at 15. He’s seen it and he realized, we are not treated well at [rural town]. This is what we’re dealing with here locally. [Caregiver]||The caregivers really struggle. There’s racism out there and some of them feel like they have to move off reserve just to get the service from the province. I think we need to change those views. We need to make it better for taking care of our own people. [Health Provider] |
More needs to be implemented in terms of racism and discrimination and what it looks like, what is taught and the fact that it actually has an effect on our people’s health and wellbeing. That racism restricts where they can go for care. For example, First Nations are covered with treaty status for dental and some offices refuse clients with that insurance. [Health Provider]
The Indian Act still has the mentally incompetent Indians where, God forbid, if his caregivers passed away, then he becomes a ward of the state. Where’s the kinship in that? That’s not part of our community, that’s more levels of control. Like we need to have something that’s culturally relevant to our people to protect our most vulnerable people. And we need to protect our relatives. [Health Provider]
|Yes, we had residential schools. Certainly, it affected many of us. A few not so much. It has a domino effect where there are issues related to parenting and illness, and knowing how the larger society views you as a population. Of course, it’s going to have a negative impact. When that whole negative stereotypical view of those individuals who ran those residential schools came out, the racism got more evident. You know they thought of us as savages. They thought of that we’re no good. [Leader] |
There is racism in the health institutions. There is racism in the denial of adequate health services to our people because of their race. It’s easily hidden just by someone who says “I’m not willing to serve that patient” and it’s easily denied. We need to come face to face with that issue. We need to be able to talk openly, candidly, honestly about the racism that exists in the health care system as far as Indigenous Peoples are concerned, in particular women and children. That would be foundational. [Senior Leader]
|Theme 6: Social determinants of health, “A lot of these factors have been developing for the longest time”.|
|And programs and services need to recognize that a lot of these factors have been developing for the longest time, and nobody’s addressed how they impact today’s health and wellbeing of individuals in a community. [Caregiver] |
The ramp that was supposed to be done in a professional way. It was not approved. It’s not up to code, but there’s no funds to fix it up. Housing always says there’s no funds. No funds, grandchildren sleep downstairs, and I have mold in the basement. I need a new water well, no funds. We all bathe in unclean water because there’s no funds to do water wells. [Caregiver]
|It really tough working on the First Nations Reserve. I find that a lot of trauma from residential school, trauma from growing up in poverty, and less than desirable conditions and that affects every age group out here. So, I would say everybody out here needs a caregiver or at least someone to talk to. [Health Provider] |
I think of the caregivers in my role, really addressing families at bedside. But when I consider leadership in terms of chief and council’s and government’s role especially with the top-down approach and the staggering intermingling of all these issues, I guess everything is kind of convoluted process. Even talking in terms of the racist policies, that are enforcing what I do and what happens in communities. And where I’m going to try to go with this, is that for support for caregivers is like this across the country. Like there are 600 plus First Nations across Canada that are probably the same boat, probably more likely 95% are in the same boat because we fall under federal jurisdiction and there is no place in policy, especially with the health transfer for family caregivers. [Health Provider]
|So it concerns me, knowing the abject poverty that many of our people live with, and whether or not their access to the service or the program that’s supposed to be available is actually accessible. And because of that reserve funding structure, many of our services hold banker hours, they only work, say 8 to 4 or 9 to 5 or something. And we all know that life happens outside of those hours. So, you know, we end up having a window greater than two-thirds of the day where many of our caregivers or somebody who’s living with a disability don’t have access to service or program. [Leader] |
Unless there’s investment made in every single piece of a healthy community housing, clean water, education, and health, their social determinants of health, it’s the continuum of life, as a man, as a girl, as a boy, as a teenager, as a young mother, as a young father. And despite the myriad of programs and services you’ll find gaps in every area because it’s not comprehensive in nature or is not viewed as being important by the larger society.... Right. And that investment not only made within the programs and services, it has to be made within the capacity development of the people. [Leader]
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© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Ward, A.; Buffalo, L.; McDonald, C.; L’Heureux, T.; Charles, L.; Pollard, C.; Tian, P.G.; Anderson, S.; Parmar, J. Three Perspectives on the Experience of Support for Family Caregivers in First Nations Communities. Diseases 2023, 11, 47. https://doi.org/10.3390/diseases11010047
Ward A, Buffalo L, McDonald C, L’Heureux T, Charles L, Pollard C, Tian PG, Anderson S, Parmar J. Three Perspectives on the Experience of Support for Family Caregivers in First Nations Communities. Diseases. 2023; 11(1):47. https://doi.org/10.3390/diseases11010047Chicago/Turabian Style
Ward, Amber, Laurie Buffalo, Colleen McDonald, Tanya L’Heureux, Lesley Charles, Cheryl Pollard, Peter G Tian, Sharon Anderson, and Jasneet Parmar. 2023. "Three Perspectives on the Experience of Support for Family Caregivers in First Nations Communities" Diseases 11, no. 1: 47. https://doi.org/10.3390/diseases11010047