The needs of Indigenous cancer patients were identified by service providers’ perceptions of barriers to care and limitations of existing formal supports specific to Indigenous peoples. Needs were identified and categorized into five themes: 1) addressing travel-related issues, 2) logistical challenges, 3) improvements to Indigenous-specific health care supports, 4) cultural sensitivity in health care, and 5) consistency in care. To note, quotes will reference participant (P) and group interview (GI) numbers.
Theme one: addressing travel-related issues
Participants highlighted several challenges for Indigenous patients living in rural and remote communities. Support needs regarding transportation and accommodations were identified in light of these challenges and summarized in the following sub-themes: properly resourced medical taxis, Indigenous-specific accommodations, and expansion of formal and informal supports to Northern communities.
Properly resourced medical taxis
Participants noted from previous discussions with First Nations cancer patients that there were concerns with the medical transportation service provided by the NIHB. Concerns ranged from issues relevant to all patients, such as passengers smoking inside the medical taxi, to issues specific to passengers with cancer, such as a lack of properly resourced vehicles or travel itineraries that did not meet the unique needs of cancer patients. For example, patients undergoing chemotherapy may require more rest stops in order to alleviate the side effects of their treatment, and patients with cancers that may be particularly uncomfortable during travel (e.g., anal cancer) should also be accommodated (e.g., more rest stops, appropriate seating). The following excerpt relays the experience of using medical taxis as recounted by one participant:
I’ve had people tell me that they’re crammed into a vehicle of some kind, and if you’ve got some side effects like diarrhea and that kind of thing along the way there’s no place to stop and go to the bathroom. They’re not feeling well and they’re on some crappy road that is [a] very long distance… (GI 1, P 4)
Although discomfort may be experienced by any cancer patients, the medical transportation service by the NIHB is exclusive to First Nations patients. As discussed by participants, the service ought to provide support beyond its utility of transport by inquiring about and accommodating the specific travel needs of First Nations cancer patients.
Participants noted that accommodations for cancer patients known as “cancer lodges” were not frequently or often being utilized by Indigenous patients (“That’s not where there the Indigenous people are staying”; GI 1, P 2) despite being the only specific accommodations that cater to the needs of cancer patients undergoing treatment. Several participants relayed why First Nations and Métis patients are finding refuge elsewhere. One provider said:
…we have had some stay there and specifically state, they felt uncomfortable. I mean, we don’t have control over the other people who stay there, and maybe they’re racist. I’ve heard that from several patients, Indigenous ones, that that was an uncomfortable place for them to stay, which is too bad. (GI 1, P 5)
Rather than staying at the cancer lodges, participants from Prince Albert noted that First Nations patients were going to an Indigenous-specific boarding home that offers medically-approved lodging and transportation to registered First Nations patients. This service is not offered in other cities that house the cancer centres, and participants stated that patients were instead opting to stay at hotels. While both hotels and the boarding home for Indigenous patients may provide more comfort to patients, participants noted some limitations with these accomodations:
The problem with Spruce Lodge for our cancer patients is that it is a shared bathroom, so you’re exposing everybody in Spruce Lodge to chemo, and you’re also exposing those patients to everybody else’s bacteria and stuff like that… Now it has shifted that a lot of the chemo patients will stay in hotels as opposed to staying at Spruce Lodge, which has worked out a lot better. However, depending on which hotel they stay at is dependent on how much sleep they get the night before kind of thing. Cause lots of our people will come in the day before, and we’ve had people say, “I just didn’t sleep last night, we stayed at whatever hotel and it was loud in the hotel”. (GI 2, P 4)
Providers agreed that addressing the above issues would be improved by Indigenous-specific lodging that accommodated those undergoing cancer treatments. An exemplar of this conclusion is summarized by one participant, “If we can’t provide [cancer care] in the community, then the least we can do is accommodate here some place”. (GI 1, P 2)
Expansion of formal and informal supports to Northern communities
Many barriers identified by service providers concerned patients having to travel long distances and for sometimes extensive time periods. Being away from the community holds psychosocial implications for Indigenous patients that can compromise their willingness to receive cancer treatments. This circumstance is illustrated with the following quote:
…I did work for a northern health organization… where we would have people who would just choose not to get treatment because of the time that it would take them away from their community. Just the difficulties with family and the community, you know, being away from home. (GI 3, P 5)
Due to numerous travel barriers, providers from all group interviews determined that formal supports, such as some cancer treatments, and informal supports, such as home care and nutrition services, requires northern expansion (e.g., “So all of our treatment facilities are basically south of halfway of our province. So yeah, additional COPS centres [community oncology programs] or health facilities, in more locations” [GI 1, P 2]). While expanding COPS centres would be ideal to delivering basic outpatient care and treatments (e.g., chemotherapy, radiation), one patient notes that training health care providers in northern communities to deliver similar services could be another option. As one participant explains:
One thing that we do find is they need more support in their home communities. Such as line care, for example… Some of the communities aren’t comfortable, I guess, with removing those lines and flushing those lines appropriately. As a result, those patients have to remain with us for a couple days so that homecare here in the city can remove the line… So education to the communities of how to care for these lines would be valuable I think. (GI 3, P 3)
An additional solution to decreasing travel was suggested by one provider who stated that oncology appointments could be provided by distance if the province’s TeleHealth was effectively utilized: “I think a lot of the centres too, in the north, that Telehealth is down. It’s not working consistently, it’s not a reliable tool to be used”. (GI 2, P 4) Together, participants determined that further training for northern health care providers on out-patient cancer care, expansion of cancer treatment programs in the north, and reliable medical appointment technology would reduce the need for patients to travel from their communities for cancer care.
Theme two: logistical challenges
A significant focus of each group interview was about the complexities of Indigenous patients accessing existing supports, and that these complexities often compromised the benefits that the supports were intended to deliver. Three sub-themes emerged regarding needs that addressed logistical issues: coordinating care with NIHB (travel, prescriptions) for First Nations patients and reimbursing First Nations patients for medications and/or travel up-front.
Coordinating care with NIHB (travel, prescriptions) for First Nations patients
To reiterate, the NIHB is medical coverage by the federal government that applies only to Registered First Nations and Inuit (i.e., excludes Métis). Although NIHB is intended to provide support (e.g., travel coverage), participants consistently noted frustrations when having to contact employees of the program. Any additional effort to advocate for patient supports were often denied by the NIHB Program, and the program’s rigid regulations surrounding medical travel.
One provider stated that their issues with contacting the NIHB Program was often the time required to communicate with those who run the program when coordinating coverage on behalf of the patient:
…my longest [time on hold on the phone] was an hour and 21 minutes waiting to get through to them. So that’s formal resources being used inappropriately. When you finally get through to them, sometimes they can’t help – because you’re phoning a call center, these aren’t people that dedicated their lives to Indigenous issues. (GI 1, P 1)
A second provider notes that an additional weakness of this communication model is that there is no consistent contact with NIHB employees. They state that this leads to time loss because providers are “repeatedly calling [the NIHB Program] back” regarding the same patient and that they would often be “getting a different person” and therefore “taking a lot of time to re-explain the situation and re-advocating for the same things”. (GI 1, P 2)
Specific to travel, providers discussed several logistical issues. One participant stated having to advocate for a patient in order to receive travel deemed unnecessary by the NIHB Program. As one provider explains:
Well on one phone call I may have to advocate for taxis in town, whereas the next one I’m getting told “no, because they’re close enough to the hospital that you shouldn’t need a taxi.” So then I’m fighting about that… So if we don’t know the system, then our patients aren’t getting the services needed. (GI 1, P 1)
An additional travel-related issue regards the relatively limited timeframe in which travel coverage can be coordinated, as medical travel provided through the NIHB must be arranged at least two weeks prior to the appointment. Participants stated that the timeframe required to schedule medical travel was particularly burdensome if care was urgent or if a last-minute appointment time became available to First Nations patients. The limited timeframe to submit requests for NIHB-covered patients also extended to receiving medications, indicating that this logistical issue is impeding participants from taking their medications (“then there’s that whole wait time and people not getting their supportive meds in a timely fashion that they need it… It’s very, very challenging”). (GI 1, P6)
Reimbursing First Nations patients for medications and/or travel up-front
Participants noted an economic barrier experienced by some registered First Nations patients was the delayed medical coverage for their cancer-related expenses. A discussion between participants illustrates this issue (GI 2):
P1: …there was lots of First Nations who travelled from reserves that were 800 kilometers from Saskatoon so then they need to fly in, they need to have a hotel stay and stay overnight – it’s a major expense for an individual. It seemed to be a somewhat complicated funding structure because they’d go through the band office and that would have to be approved. It never seemed easy for those people to get to the clinic
P2: Sometimes it’s a fight to have that money come up front and then have to submit all that paper or receipts or whatever and then get that payback. But that’s subjective to each nation, right?
P3: And if they don’t have the actual money to put up front-
P1: Yeah, some don’t even have it.
P3: They can’t go, ‘cause getting money after they come back isn’t doing them any good, ‘cause they haven’t any to get here.
As stated in the dialogue, travel or medical coverage through NIHB may still not be accessible to First Nations patients from low-income households because of the up-front costs. Participants highlighted that the current model of medical coverage is not adequate to accommodate the patients who require this support the most. Instead, expenses should be covered directly through funding body (e.g., the NIHB Program).
Theme three: improvements to Indigenous-specific health care supports
Participants identified limitations within existing services available to Indigenous patients within hospitals and other health care facilities in the province. The following sub-themes outline proposed improvements to: Indigenous language interpreters, elder support, and standardizing identification of Indigenous identity to ensure that Indigenous-specific health Care supports can be offered.
Indigenous language interpreters
Adequate interpretation was repeatedly discussed, with one participant asserting that “language is one of our biggest barriers, and trying to rectify that would be a huge step in the right direction”. (GI 1, P1) Providers acknowledged that interpretation was offered for some First Nations languages but noted limitations with translation services. Despite having access, there were not enough translators to meet the demand of patients. Increasing the number of interpreters was suggested by one participant: “even though we do have interpreters, I think having additional, having enough or having more would be very beneficial”. (GI 3, P6) Another provider discusses including more Indigenous languages for language translation. They state: “Yeah, we do have regular struggles with Dene because it’s – We don’t have as many. Like we have a few, even staff that can speak Cree in the building at any given time. But Dene seems to be the more common struggle”. (GI 3, P 5)
An additional concern was that translators were not immediately offered to Indigenous patients with medical companions. One participant expressed that translators were still necessary because they were unsure of the quality of information that family members translated to the patient: “…a lot of times we get translators from the community coming in, and you never know how much information is actually getting through to the patient, which is bothersome to me.” (GI 1, P5) Participants asserted the importance of interpreters particularly for their training in medical translation, which is a skill that medical companions do not necessarily have. The following participant states their recommendation:
I almost wonder too, yeah, if just – especially maybe their first appointment with an oncologist in Saskatoon, if there’s a translator that’s not family present at that, and it’s just not questioned. This is just how we do things, this is how it is, they’re a medically trained translator, they’re here no matter what, kind of thing. (GI 3, P 4)
A final proposed solution to address issues with current language translation supports models a current service offered to patients who speak non-Indigenous languages. The provincial health agency uses MCIS Language Services, an external organization that provides professional interpretation services 24 hours a day, seven days a week for patients. This organization does not offer translation in any Indigenous languages, but a comparable system was proposed. The following details this service by one participant:
It has to be pre-arranged. There’s a 1-800 number. I mean you could contact them and you may get same day service, it’s just not immediately... Because even with Cree and Dene, a lot of things are difficult, it’s not just the language it’s the medical aspect… then not only are they [the telephone interpreter] fluent in the language, but also fluent in medical language too. (GI 3, P 5)
Elder support that is offered to Indigenous patients through the province’s First Nations and Métis Health Services was praised by service providers for providing patients with advocacy, representation in health care, and culturally relevant supports. One participant notes:
He’s amazing and he’s got lots of knowledge, he helps guide - he’s one of those people who’s a key - there’s the traditional pathways for Indigenous pathways and then we have the mainstream way of doing things, he serves as a “Let’s find a way for both”. (GI 2, P 5)
However, Elder support is exclusively offered in hospitals because the cancer centres are a separate institution, and those using medical travel through the NIHB Program are only provided transportation to and from the location where the patient received cancer care. Consequently, First Nations patients using medical travel may not have access to Elder support.
Providers also discussed needs for stronger relations between the provincial health agency and influential members within Indigenous communities, such as Elders. The advantage is that Elders can assist with advocating for health and wellness through education such as cancer prevention. To facilitate this, health officials need to “try to bridge the gap of getting some buy-in from the community level” in order to have community members advocate to “to try and help get people out and motivate them to take action for their health…”. (GI 2, P 4)
Standardizing identification of Indigenous identity to ensure that Indigenous-specific health care supports can be offered
Indigenous specific supports from First Nations and Métis Health Services may be suggested by service providers, but participants stated that no systematic approach existed for identifying Indigenous patients that might benefit from this service. The lack of formal approach was evident from the varied answers that providers gave when asked how they determine if a patient is Indigenous. Answers included patient’s self-identification; asking the patient; judgements of the patient’s racial identity, last name, or home address; and from observing registration numbers of Indian status cards from First Nations patients’ electronic charts. This lack of reliable approach is problematic because individuals can be Indigenous without physical characteristics and last names provide no guarantee of Indigeneity. Further, a significant proportion live in large population centres (27.5% in Saskatchewan) , and other Indigenous groups such as Métis do not have Indian Status and thus do not have registration numbers. Participants concluded that the presence of Indigenous-specific services was a positive support, but that an emphasis on a methodical approach to identifying Indigenous patients was needed.
Theme four: cultural sensitivity in health care
Participants acknowledged that most health care providers are non-Indigenous, and that non-Indigenous providers are less likely to be informed on how to provide culturally relevant care to Indigenous cancer patients. Participants discussed how culturally relevant care could be better facilitated by the following themes: cross-cultural understanding for non-Indigenous service providers and Indigenous service providers in all stages of cancer care continuum.
Cross-cultural understanding for non-Indigenous service providers
Health care professionals in Saskatchewan are often obligated to complete Indigenous sensitivity training during post-secondary education or workplace in-services to facilitate cross-cultural understanding. However, as participant 5 (GI 2) states, “It needs to be more than just an Indigenous sensitivity training that usually is typical of checked box… They facilitate a conversation about it but don’t continue… doing more initiatives”. One initiative discussed was education on traditional healing methods to inform providers what it is, how it may be integrated with Western medicine, and how to discuss its integration with patients (“…having a better understanding and respect for the holistic side of things too, to integrate them better, present all the options, make informed decisions”; GI 2, P 4). Further, it could address potential stigma that providers have about non-Western treatment options (“if you know a disease is curable but they’re going to go traditional medicine, as medical professionals I think we have difficulty with that”; GI 2, P3).
Indigenous service providers in all stages of cancer care continuum
To promote cultural sensitivity in health care, participants highlighted the need for Indigenous representation from cancer care providers. One participant emphasized the need for representation from both dominant Indigenous groups in Saskatchewan: “[First Nations and Métis] have very different realities in terms of practically everything. Very different experiences, very different supports that they have access to” (GI 2, P 7). The quote illustrates that the experiences of navigating the health care system will differ between First Nations and Métis due to the supports available to each group, but also, that their experiences differ because they are distinct cultural groups. This highlights the importance of avoiding a pan-Indigenous approach by ensuring that needs (e.g., representation) are met for the predominant Indigenous groups in the province.
Theme five: consistency in care
Participants issued concerns relating to inconsistencies in both formal and informal care providers. The consequences of inconsistencies are among the following two themes: consistency from service providers (i.e., formal supports) and consistency from travel companions (i.e., informal supports).
Consistency from service providers (i.e., formal supports)
Participants acknowledged that there are higher inconsistencies in care for Indigenous patients living in the rural and remote areas of the province because of unreliable virtual appointments through Telehealth. Oncologist care was noted to be particularly unpredictable for Telehealth appointments:
They’re doctors, they’re oncologists, but they’re not their primary oncologist. And so they might go to telehealth in January and see their primary oncologist who’ve they’ve always seen, and then they go in February, March, April, May, and they see somebody different. And it may be a different person each time, let alone just one person. (GI 3, P 4)
Participants highlighted two virtues of consistent cancer care providers. One provider captured both strengths of consistency in the following quote:
… I think that transition [of primary care providers] for a lot of people, especially people from the north when you talk about trust issues, that is not good to have fill-in doctors come in. They don’t have the same rapport. The stuff they talked about at one telehealth may not ever come up again. (GI 3, P 4)
When patients must consistently retell their experiences, they may fail to share all details and consequently, as discussed among participants, the provider would be unaware of key details that could assist the patient.
Consistency from travel companions (i.e., informal supports)
Travel companions are a valuable informal support to Indigenous patients and can also be helpful for conducting language translation. Despite their benefits, participants mentioned that communication issues can arise when patients bring a different medical companion for each appointment. For instance, one participant posits that patients may selectively disclose information based on which companion accompanied them:
… I think the other problem that we’ve had too, is sometimes it is a daughter or son that comes down with their parent, or even a husband and wife, and the patient may not be comfortable talking about certain things in front of who’ve they’ve brought… Dad may be comfortable in front of one child and not in front of the other child (GI 3, P 4)
Another provider speculates that the inconsistency of health companions may be due to the limits of the NIHB Program. They state: “…one of the biggest things that we always say to people coming to the Cancer Clinic is, “you can bring several family members with you. Whoever’s gonna make you feel comfortable.” Often many of the First Nations people are limited to one person to be able to come. To me that’s not quite right…”. (GI 1, P 4) To elaborate, because First Nations patients are only funded for one medical companion, the patient may be less likely to articulate their experiences to the provider in front of the sole companion. If multiple travel companions were funded to accompany the patient, family members would be less likely to rotate as travel companions and thus, facilitate better companion consistency.