Health care experiences of Indigenous people living with type 2 diabetes in Canada

Theme 1: The colonial legacy of health care

For several participants, diabetes care was mediated by traumatic historical relations between Indigenous people in Canada and the government, most often materializing in avoidance of health care systems, mistrust of physicians and resistance to other health service providers.

Participants described avoidance and resistance to health care providers when interactions stirred memories of negative childhood experiences from residential schools.18 These memories could be easily triggered in the clinical encounter when doctors were too prescriptive or authoritarian, making participants feel “tired of being told what to do” (BC-FN-2). One participant related such experiences to what physicians sometimes label “noncompliance,” noting that physicians often “can’t figure out why [patients] are doing a certain thing, or why they’re not looking after their sugar properly” (ON-FN-2). Multiple participants suggested that health care providers lacked education about residential schooling, including long-term effects: “I think the doctors do have to be educated on what happened, and also to realize that it’s intergenerational” (ON-URBAN-2). Memories of lining up to be attended to, being ordered what to do and the presumed authority of government or church workers were often triggered by similar experiences in health care today, aggravating distrust.

For some participants, another trigger involved past experiences with federally sponsored on-reserve health care, examples of which included past government providers using coercion to force compliance with the Bacillus Calmette–Guérin (BCG) vaccine (Box 1).

Mistrust emerged as a substantial subtheme that clearly stemmed from historical experiences. Participants in 1 group suspected that during the mid-20th century, Indigenous patients with tuberculosis “were used as guinea pigs” (AB-FN-5), presumably observed or tested upon without access to the same interventions provided to non-Indigenous patients. This speculation resonated in a discussion from another focus group, where a participant described feeling like a “rat” whenever new medications were prescribed to control diabetes and epilepsy (BC-FN-1).

Theme 2: The perpetuation of inequities

Participants recalled contemporary experiences with health care systems that reinforce historical relationships through ongoing racism, discrimination and stereotyping. These included being denied care, perceptions and experiences of inferior care and policies unsupportive of cultural practices in care.

Participants experienced interactions that they interpreted as racially motivated on the part of health care providers. One First Nations man described having travelled a long distance from his home community to an urban centre for what he understood would be a biopsy, only to be sent home without an explanation or having the procedure completed (Box 2).

Another participant recalled sitting in a waiting room and overhearing a physician say to his secretary: “Skip through these so we can get to the real patients” (BC-FN-5). The participant described watching as the secretary then called 2 Indigenous women and then an older Indigenous man for their appointments. His anger led to abandoning the appointment after speaking up: “As I left, I went over to her and said ‘we’re all real patients, all of us.’”

One participant recalled when he first received his diabetes diagnosis; he had gone to the hospital with flu-like symptoms and bleeding from the mouth. Emergency department staff assumed he had been “sniffing nail polish,” although his blood glucose level would later prove dangerously high (AB-URBAN-1) (Box 3).

A lack of consideration for cultural practices was also discussed. Some participants acknowledged that, increasingly, hospitals set aside spaces for Indigenous ceremony, but noted that access to these is not always possible for patients confined to a bed. Likewise, it is not uncommon for Indigenous extended families to come to hospitals in support of a patient. Tensions arising from visitations resonated for 1 participant who was told during an interaction with a senior hospital administrator to “tell your community that we’re not running a lodging service here” (ON-URBAN-2). For this participant, “when one of us gets sick, our whole family is there. He didn’t like that.” The administrator’s words led the patient to stop engaging in health services, perceiving a bias against Indigenous clients and disregard for family supports.

Theme 3: Structural barriers to care

Participants discussed barriers at systemic levels that prevent effective care, including First Nations health policies and challenges around access, such as physician shortages, geographic isolation, appointment time allocation and health care worker turnover or continuity of care.

Often, participants recalled instances where new physicians or residents came to their communities to gain experience with complex and diverse diseases before moving on to presumably “better places” (AB-FN-3). Participants felt that once doctors gain experience, “they want more money here, and if they don’t get it, they quit and move on” (AB-FN-3). A considerable challenge identified by participants was that each visit to a clinic off-reserve could lead to interacting with a new provider, retelling one’s history and leaving with yet another care plan. A shortage of on-reserve physicians threatened continuity of care. Although participants were told to go to their family doctor, they found it difficult to get a timely appointment. This led some participants to question doctor – patient ratios for Indigenous people across Canada, arguing that concern over doctor shortages should be amplified for populations with disproportionate rates of diabetes (Box 4).

Participants argued that high-volume clinical services, with short clinical interactions (10 min), inadequately address complex care issues among Indigenous patients, which impedes the development of appropriate care relationships. This was described by one participant as a race to fit as many patients in as possible (ON-FN-3). Another declared that she would “die of old age” before finally being placed with a family doctor (ON-FN-1). In the mean-time, she dealt with the doctor at a walk-in clinic whose impersonalized care made her feel like “somebody on an assembly line.”

Particularly troubling was the lack of time physicians had to visit with patients, especially when physicians instructed patients to book another appointment when presenting with multiple concerns. Participants at 1 site (BC-FN) found this more common among younger practitioners, who were often seen as unwilling to hear all that a patient considers important to share. For other participants, the greatest barrier emerged in the lack of access to trained professionals on their home reserves, resulting in the need to travel to surrounding non-Indigenous communities for care.

Also discussed were health policies of the federal government, which govern First Nations health care services in Canada. Some participants reported being unable to secure necessary supplies, such as insulin pumps, because of the complexity of the government funding forms and physicians ill-disposed or unwilling to fill these out. Participants at 2 on-reserve sites spoke of the government’s Health Transfer Policy, believing that the reserves were not supported in taking over control of their health services, which set them up for failure. Such policies were seen to lead to inequity between communities, with smaller reserves receiving fewer resources.

Theme 4: The role of the health care relationship in mitigating harm

The quality of relationships between health care providers and participants was integral to perceptions of the effectiveness of clinical interactions.

Good therapeutic relationships were described as having the quality of humility, whereby providers would admit when they were unsure and take time to investigate further. Humility, which resonated culturally with participants, was described as having won over initially reluctant patients. One doctor was seen to level the power imbalance with his patient by beginning with an admission that he did not have much training in diabetes. With this, he told a participant “I want you to teach me,” to which the participant felt honoured to be invited to work together (ON-URBAN-2).

Although exceptionally uncommon, participants appreciated physicians who phoned them at home (ON-URBAN-5). One physician took time to involve family and partners in care plans, and another was praised for listening (BC-URBAN-2). Participants also appreciated doctors who were not condescending when patients wished not to be referred to certain specialists perceived to scold them (AB-FN-5) (Box 5).

Doctors who showed interest in Indigenous cultural practices that contributed to patient health were also considered effective. Instead of solely focusing on whether or not a patient was taking traditional medicines, one physician was described as enquiring about “eating habits, wild food and what traditional games we have out there, and questions about spirituality” (BC-FN-1).

Negative interactions were characterized by physicians “lecturing” patients to the point that participants refused to share simple information, like what they had eaten for breakfast (AB-FN-6). One participant disclosed having not elaborated on their symptoms because of the absence of meaningful communication: “every time you tell him a story, he’ll add a pill to your collection” (AB-FN-1). Participants argued that such interactions reflected a presumed authority over patients on the part of many doctors. Physicians who focused too directly on what was wrong, on quick remedies and on getting the patient out the door were perceived to have a cold persona (ON-URBAN-1). Any presumed authority or power differential was considered fundamental to the breakdown of health care relationships.

Finally, the physical space in which clinical interactions took place was important. Participants often wanted services provided in their communities or in Indigenous health centres. Examination rooms could stir mistrust before a clinical interaction even began. This occurred with 1 doctor who displayed a picture of the “holy land” on his office wall that read “repent” (ON-URBAN-7). Presence of the physician’s religious values made the patient uneasy about discussing his or her own, including use of traditional medicine. Such visual cues inspired participants to lie to their physicians: “because I don’t want to hear the lecture and don’t want to hear the ‘well you know if you keep this up you’ll be dead by this age’” (ON-URBAN-3). This lends additional insight into why, in multiple sites, participants who admitted to seeking traditional medicines for their diabetes would not disclose doing so to their doctors.