Exploring structural barriers to diabetes self-management in Alberta First Nations communities

Diabetes mellitus (DM) is a consequence of colonization that remains a substantial problem for indigenous communities across Canada [1‐3]. First Nations (FN) individuals have a 76–87% lifetime risk of developing diabetes [4]. Canadian indigenous populations shoulder a heavy disease burden as evidenced by the high incidence of diabetes [1, 5]. Additionally, FN individuals have higher rates of diabetes-related hospitalizations [6], chronic complications [7, 8], and mortality [9]. Many have articulated how health system deficits and historical injustices are to blame for these disparities in care and outcomes [10]. These deficits include discordance between patient and provider viewpoints [11], ineffective doctor-patient communication [12], mistrust of the healthcare system related to the Canadian legacy of residential schools [13, 14], and tuberculosis sanatoria [15]; which may result in disengagement from health services [16‐19].

Given these disparities and the historical context in which they occur, there is a need to explore the health experiences of FN individuals with diabetes, and identify practices and processes that are required to meet the needs of individual patients and support self-management [20]. Engagement in DM education programs, has been shown to improve diabetes-related outcomes [21] and that self-management support programs are more effective when adapted to overcome barriers faced by specific populations [22]. Furthermore, glycemic control is closer to target when perceived barriers to self-care are low [23]. However, prior studies in FN populations with diabetes have focused on identifying gaps in diabetes management and outcomes [24] and provider perspectives about barriers to care [25, 26], leaving a relative knowledge gap on the specific barriers and experiences of FN individuals with diabetes, particularly as related to self-management behaviours.

Recently, Jacklin et al. [27] thoroughly explored health care experiences of Indigenous Canadians with diabetes, and identified key themes of the colonial legacy of healthcare, the perpetuation of inequalities, and structural barriers to care. Their conclusions centre on the importance of healthcare provider training to provide patient-centred care that is founded in cultural safety. Cultural safety has been defined as “an environment which is safe for people; where there is no assault, challenge or denial of their identity, of who they are and what they need. It is about shared respect, shared meaning, shared knowledge and experience, of learning together with dignity, and truly listening” [28]. Jacklin et al. point out that structural barriers were a key theme, but their analysis and discussion focus largely on the other two themes, which are of critical importance in improving health equity for indigenous Canadians [27]. This paper, however, will use a different dataset to focus on the third theme they describe: structural barriers to optimal diabetes self-management.

We explored the structural barriers to diabetes management experienced by 5 participants living in FN communities, who were interviewed as part of the larger study. This sample included four women and one man, between 30 and 65 years of age. All participants lived in First Nations communities adjacent to a major western Canadian city.

As described by Jacklin et al. [27], unique barriers exist for FN individuals with diabetes, sculpted by the complex history leading to policies that affect the daily lives of FN people today. Since that paper focused on the social and historical barriers, we have decided to focus on the financial and structural factors that complicate diabetes self-management. We grouped these reported barriers thematically into three major categories: geography; finances and health insurance; and lack of diabetes education. We describe these themes, supported with direct quotations (italicised) from the interviews and discuss each theme in the context of supporting literature.

Diabetes is a growing problem in FN communities across Canada [1‐3] and worse yet is that this population continues to be ineffectually served by the current health system leading to poor disease outcomes [10, 16‐18]. Barriers to optimal care are complex and inextricably intertwined with culture, values, history, and geography. Jacklin et al. [27] recently examined the role of healthcare provider reeducation/training to improve patient centered care and promote cultural safety in consideration of the colonial legacy of healthcare and present day perpetuation of inequalities. Here, we explore the unique structural barriers to diabetes self-management experienced by FN patients.

Finances were a major concern in one form or another for all participants. FN Canadians are known to have a significantly lower total annual income compared with non-FN Canadians (CAD $19,114 compared with CAD $33,394) [36, 47]. Many of these financial barriers were exaggerated by the geographic isolation that is faced by many FN individuals. Our findings about geographic isolation were similar to other studies suggesting that geographic isolation is not entirely responsible for poor health outcomes, but is a significant contributor when coupled with low socioeconomic status and historical factors [48, 49]. In addition, we found that quality diabetes education was lacking, which hinders diabetes self-management and promotes disease stigma. This too was limited by geographic isolation, as many of the programs available are offered in major urban centres. This has been addressed in Australian Aboriginal populations with online resources and has been shown to improve diabetes outcomes [50].

The barriers reported in this study are likely more complex and deep rooted than the individual proximal negative experiences that we heard. Undoubtedly, generations of mistreatment and multigenerational trauma contribute significantly to these difficulties, as recently explored by the Truth and Reconciliation Committee [14], and the recent paper by Jacklin et al. [27]. The failed historical relations between government and FN communities limit health care delivery to FN individuals. This history, as well as ongoing racism and exclusion, leads to considerable mistrust of healthcare providers that limits the quality of care that can be provided. Care providers must be mindful of these issues, and practice cultural humility [51, 52] with openness to Indigenous ways of understanding health [53] that incorporate patient centered interventions [26] in order to produce productive therapeutic relationships [27]. Furthermore, Hackett [19] suggests that acknowledging the failed historical past of the healthcare system’s interactions with FN communities could be incorporated into educational programs to break down the legacy of mistrust.

This exploratory study is limited to the perspectives of the individuals interviewed. The sample contributing to this data is quite small, even for typical qualitative research. Morse [54] has suggested that for phenomenological studies, small samples of 6–10 can be adequate. Phenomenology is a methodology used to understand participants’ lived experiences [55], while we did not undertake true phenomenology, this work clearly followed some phenomenological principles-attempting to understand and characterize the experience of structural barriers in the context of diabetes for FN Canadians. Furthermore, qualitative studies, which ask a focused question of a homogenous group require smaller samples [33]. While in the broader qualitative study, participants were sampled to saturation; the data obtained from this sub cohort was not fully saturated. Despite these limitations, we feel that the narratives in this study undeniably elucidate real barriers that may well be experienced more broadly by many FN individuals with diabetes in Canada. Others have written that: “a case study involving a single research participant can be of importance and can generate great insight. This logically means that the smallest acceptable sample size in these types of qualitative research is a sample of one” [56].

Future research in this area should incorporate indigenous ways of knowing [57] and participatory-action methods [58] within an Aboriginal-guided research framework [59] to achieve a better understanding of the structural barriers faced by FN individuals with diabetes. It would also be helpful to further quantify the presence of various types of financial barriers for FN individuals with status and without status, as well as FN peoples who live in FN communities compared to those who live in major urban centres.

Through our interviews, it became evident that diabetes care for persons living in First Nations communities is a complex issue with a myriad of barriers—which include structural factors. Many of the important cost-related barriers were exacerbated by geographic isolation. These included the direct and indirect costs associated with travelling into the city for specialist appointments, allied health care, and to obtain healthy food. Using in-depth qualitative methods, we have gained a greater understanding of FN patients’ experiences with barriers to diabetes care and propose several avenues for future research and policy that may help achieve better health outcomes for First Nations persons with diabetes.