Examining structural factors influencing cancer care experienced by Inuit in Canada: a scoping review

ABSTRACT

Inuit face worse cancer survival rates and outcomes than the general Canadian population. Persistent health disparities cannot be understood without examining the structural factors that create inequities and continue to impact the health and well-being of Inuit. This scoping review aims to synthesise the available published and grey literature on the structural factors that influence cancer care experienced by Inuit in Canada. Guided by Inuit input from Pauktuutit Inuit Women of Canada as well as the Joanna Briggs Institute scoping review methodology, a comprehensive electronic search along with hand-searching of grey literature and relevant journals was conducted. A total of 30 papers were included for analysis and assessment of relevance. Findings were organised into five categories as defined in the a priori framework related to colonisation, as well as health systems, social, economic, and political structures. The study results highlight interconnections between racism and colonialism, the lack of health service information on urban Inuit, as well as the need for system-wide efforts to address the structural barriers in cancer care.

KEYWORDS:

• Inuit
• health and wellness
• cancer
• cancer care
• health care
• structural factors
• Canada

Introduction

First Nations, Inuit and Métis are the constitutionally recognised Indigenous Peoples in Canada who inhabit their traditional lands with languages and cultures grounded in holistic ways of knowing [1]. Inuit (singular: Inuk) are one of the three groups of Indigenous Peoples recognised in Section 35 of the Canadian Constitution Act of 1982 [2]. The majority of Inuit live in Inuit Nunangat, with a growing population also living in urban locations [3]. As a result of the Canadian federal government’s Inuit Resettlement Program during the 1950s [4], Inuit in many southern communities such as Inukjuak were coercively moved to the high arctic, an unfamiliar and much more climatically hostile environment lacking the same established infrastructure and resources that had been promised to them [4,5]. Colonial and racist policies such as forced relocations and residential schools have left generations of families with trauma that continue to impact Inuit health [5–7]. It is crucial to recognise Inuit as active participants in the global society striving for holistic wellness and self-determination, but also equally essential to address the ongoing inequities embedded in the Canadian health care system that affect their well-being.

Inuit shoulder a disproportionately higher cancer burden in comparison to non-Indigenous populations in Canada. Researchers have reported an overall increase in cancer incidence among Inuit in recent decades [8,9], with cancer being one of the leading causes of premature Inuit deaths in Canada [10]. This alarming trend is especially reflective of lung cancer, where studies have suggested that lung cancer rates among Inuit women and men are the highest worldwide, about three to five times higher than the overall Canadian average [11,12]. Along with rising incidence, higher mortality rates, and diagnosis at later stages, Inuit are faced with poorer cancer survival rates and outcomes [9,12,13]. Furthermore, Inuit cancer-related disparities are exacerbated by socioeconomic disadvantages and systemic racism, compounded by the historical and ongoing marginalisation by mainstream health services [6,14–16]. As such, Inuit patients continue to experience alienation and lack of trust in health care systems, health needs not met, and on average, higher rates of illness and poor health compared to non-Indigenous Canadians [17,18].

The persistent health disparities between Inuit and non-Indigenous populations are complex and cannot be understood without examining the structural factors that create inequities and continue to negatively impact the health and well-being of Inuit [19]. Structural factors have been described as resembling the roots of a tree where the branches and leaves are the intermediate (e.g. community infrastructure, resources, and systems) and proximal (e.g. health behaviours, physical and social environments) determinants of health [20]. Structural factors have a profound influence on the health of a population through their political, social, and economic influences that trickle down to create favourable or unfavourable determinants of health and health-related outcomes [19]. For instance, historical research has indicated a link between colonialism and diminished life expectancy, a disproportional burden of chronic and communicable disease and social violence experienced by Indigenous Peoples in Canada [21]. With these considerations, failing to recognise and address the structural determinants of health in health care discourses perpetuates inequities that impede the health and well-being of current and future generations of Inuit in Canada [20].

While studies have investigated the rising cancer burden [9,11,12] and barriers to cancer care services [22–25], there has not been a comprehensive review that explores the unique structural factors influencing Inuit experiences with cancer care. Such research is necessary given that the existing cancer-related disparities among Inuit are linked to the structural determinants of health that create health and health care inequalities and inequities. The aim of this scoping review was to synthesise the available published and grey literature on the structural factors that influence cancer care experienced by Inuit in Canada.

Review questions

1. What structural factors influence cancer care experienced by Inuit in Canada, and in what ways do these structural factors influence their cancer care?

2. What aspects of cancer care are influenced by the structural factors identified?

Theoretical underpinning

Postcolonial studies are a family of theoretical and empirical work that converges on the critical analysis of the legacy of colonialism, as well as how it continues to shape people’s lives and well-being, both past and present [26–29]. The fundamental premise of postcolonial studies is that colonisation involved the political and cultural erasure and forced assimilation of Indigenous Peoples in addition to their elimination through genocide, expropriation of their territory, and exploitation of resources [30,31]. In the context of health care, postcolonial studies seek to critically question the dominant Eurocentric biomedical paradigms in mainstream health services, as well as to analyse the conditions in health care that continue to marginalise and discriminate against certain groups due to their race, class, or gender [32,33]. Postcolonial theory uncovers how colonialism is steeped in the broader historical, social, political, and economic structures that shape Inuit health, and acts as the catalyst behind the public’s lack of awareness of political and economic marginalisation today [34]. Hence, postcolonial theory underpins this scoping review to permit a more thoughtful reflection of issues beyond the individual level to understand the structural factors that continue to cause health inequities for Inuit [28].

Methodology

Study design

This scoping review followed the steps outlined by the Joanna Briggs Institute (JBI) scoping review methodology [35]. While there are no universal definitions or purposes of scoping reviews [36], they generally identify and map the available evidence on a given topic [37,38]. The value of a scoping review comes from its flexibility to incorporate various types of literature through a broad scope for research questions that are exploratory and descriptive in nature [35]. The JBI approach to scoping reviews has rigorous and transparent methods for synthesising evidence when the literature is complex and heterogeneous, and also recognises other forms of evidence such as Indigenous expertise and experiences as was gathered in this study [35]. Given the emerging evidence that indicates that structural factors impact cancer care for Inuit [15,16], the scoping review is an appropriate method to explore the breadth of literature that exists and to reveal Inuit perspectives and experiences without the constraints of a rigid methodology that limits study designs [37,39]. In addition, this review was not previously registered under any platforms. By consulting with members of the Pauktuutit Inuit Women of Canada who were informed and consulted throughout the study, we were able to ensure that the study outcomes align with the established study protocol without a formal registration of this scoping review. Guidance and input from Pauktuutit Inuit Women of Canada were sought out and integrated into the study to ensure alignment of the development of research questions and the subsequent extraction and analysis of findings, with local priorities and needs in relation to cancer care.

Inclusion criteria

Population/participants

We focused specifically on literature that included Inuit living in Canada in its study populations, with no exclusions based on age, sex, gender, or types and stages of cancer diagnoses. We also included papers that identified “Indigenous” or “Aboriginal” people within Canada as participants without specifying which Indigenous identity they held, to reduce the possibility of excluding important information that is also relevant to Inuit.

Concepts

Cancer care

Cancer care encompassed the continuum of care from screening, diagnosis, treatment, and follow-up including survivorship care, palliative care, and bereavement [17,40]. We included cancer care in all settings such as inpatient and outpatient clinical care, community centres and agencies, and patient homes.

Structural factors

Structural factors are “embedded within and systematically produced by the political, historical, social and economic structure of a society” (15, p.11). Drawing on the work of Reading [19], Horrill [15], and McGibbon [41], we developed a conceptual framework to guide our understanding and analysis of structural factors that shape inequities in health care and health outcomes, including colonisation, health systems, social, economic, and political structures. Figure 1 depicts the structural factors’ concepts and descriptions. Additional details on each structural factor can be found in Supplemental Material A.

Figure 1. Structural factors that shape inequities in health care and health outcomes.

Context

Due to distinct sociopolitical structures and jurisdictions in different countries, we only included papers that have examined cancer care in Canada.

Types of sources

We included primary and secondary research on all study designs, in addition to text and opinion papers, legal documents, land claim agreements, and publications by the Canadian federal government and Inuit organisations. Only papers that were available in electronic full text were included. Study protocols, conference proceedings, and abstract-only publications were excluded due to the limited amount of information available in them. No date or language limits were applied to reduce the chance of excluding landmarking literature.

Search strategy

A three-step search strategy was carried out in consultation with the University of Ottawa Health Sciences and Medicine Research Librarian (LS). The initial search was completed in CINAHL and Medline, followed by identifying relevant keywords within the title and abstract as well as index terms used to describe the article. A second search was then conducted using the identified keywords and search terms across the selected database. Since articles related to structural factors may use a diverse variety of keywords, terms related to the concept, “structural factors”, were not utilised as search terms in order to enhance the breadth of the search and confidence in the search results. The third step involved hand-searching through the reference lists of all identified articles for additional relevant studies. A sample search strategy in CINAHL is presented in Supplemental Material B.

The search strategy was conducted in the following electronic databases: CINAHL, Medline, Embase, PsycINFO, Nursing and Allied Health Database, Sociological Abstracts, Circumpolar Health Bibliographic Database, Native Health Database, and Arctic Health Publication Database. The grey literature search consisted of Google Scholar, legal databases (LegalTrac, HeinOnline, and WestLaw), and a list of Canadian federal government and Indigenous organisation publications including but not limited to Justice Canada, Health Canada, Public Health Agency of Canada, Indigenous and Northern Affairs Canada, National Collaborating Centre for Aboriginal Health, Native Women’s Association of Canada, Quebec Native Women, Pauktuutit Inuit Women of Canada, Saturviit: Inuit Women’s Association of Nunavik, Inuit Tapiriit Kanatami, and Tungasuvvingat Inuit. In addition, the table of contents of the following journals were hand-searched for eligible articles: International Journal of Indigenous Health, International Journal of Circumpolar Health, Journal of Transcultural Nursing, Pimatsiwin: A Journal of Aboriginal and Indigenous Community Health, Études Inuit Studies, and Recherches Amérindiennes au Québec.

Study selection

All identified citations were imported to Covidence systematic review software [42], and duplicated articles were removed. Two reviewers (the primary author and a PhD student in Nursing [CL]) screened articles independently in a two-step process. The first step involved title and abstract screening against the pre-defined inclusion criteria. Results were moved to the second step, where full-text articles were independently assessed by each reviewer for eligibility with documentation of the rationale for exclusion. Throughout all stages of study selection, any discrepancies were resolved by discussion or a third reviewer (WG) when required. We presented and discussed the results of study selection with members from Pauktuutit Inuit Women of Canada (KG, RU, CG) and incorporated any feedback prior to analysis.

Data extraction

As per the JBI scoping review methodology [35], we designed a tabular data extraction form in Excel to collect details from included pieces on the document type, population/participants, context, and concepts. After reviewing the data extraction table together, two reviewers, including the primary author, independently extracted data from three articles into the charting table and compared results. After clarifying and discussing areas of discrepancy, the remaining data extraction was completed independently by the primary author and verified for accuracy by the second reviewer. Throughout the data extraction phase, the research team iteratively refined the extraction table to ensure the collected data reflected the aim of this scoping review, and additional categories were added as needed.

Assessment of relevance to Inuit

To assess the relevancy and alignment of the included research studies to Inuit participants and/or community’s values, knowledge, and priorities, we used components of the Well Living House Quality Assessment Tool [43,44] to examine the incorporation of Inuit perspectives and ways of knowing and doing through the following four elements: 1) Is the study design/measure(s) in keeping with local community values/beliefs/knowledge systems? 2) Is the study design/measure(s) in keeping with local priorities/aims (e.g. community articulated need for this evaluation)? 3) Is the underlying theory (of evaluation) relevant to the community? 4) Is the study protocol (design and data collection method) vetted by local community members? (See Appendix E). Each component was given a score of either 2 (explicit evidence), 1 (partial evidence), or 0 (none), for a total score of 0 (none), 1–3 (weak), 4–6 (moderate), and 7–8 (strong evidence) for the relevance of each paper to participating communities. See Supplemental Material C for additional details. The Well Living Quality House Quality Assessment Tool upholds the principles of Inuit Qaujimajatuqangit, the term used to describe Inuit epistemology [45]. Particularly, by evaluating alignment of the included studies with community values and priorities, this assessment tool supports the concept of collaborative relationships in the development of knowledge by underlining the importance of conducting research that respects and incorporates Inuit experiences, values, and beliefs.

As authors of this study related to Inuit health, we believe it is also necessary to reflect on the alignment of this scoping review with the same items assessed for the included studies. Specifically, in our perspectives: 1) This review demonstrates relevance to Inuit values/beliefs/knowledge systems through recognising the importance of establishing a trusting and respectful working relationship with members from Pauktuutit Inuit Women of Canada involved in prior work and engagement with Inuit with lived experience, and incorporating their guidance throughout the study development process. Additionally, the choice of conducting a scoping review was supported by Pauktuutit Inuit Women of Canada to synthesise evidence within various types of literature including non-research papers. 2) Our study aligns with Inuit priorities and aims by addressing priorities identified in published research on Indigenous cancer care. The study findings also echoed what we heard from local Inuit community members with lived experiences of cancer care during a research symposium event on Inuit life, health, and wellness, hosted by Pauktuutit Inuit Women of Canada and University of Ottawa Centre for Research on Health and Nursing in December 2022. 3) The approach of this study was informed by the principles outlined in the National Inuit Strategy on Research. The theoretical underpinnings and a priori framework on structural factors have also been approved by Inuit collaborative partners. 4) Furthermore, Inuit representatives at Pauktuutit Inuit Women of Canada have been involved in various stages of the study, providing input and direction on research purposes, questions, data extraction, and analysis of findings. A poster presentation of this study has also been shared with local Inuit community members for feedback during the Inuit research symposium.

Analysis and presentation of results

We conducted a qualitative thematic content analysis of the data extracted from the included articles. As recommended by Braun and Clarke [46], thematic analysis offers an accessible and theoretically flexible method to provide a rich and detailed account of the qualitative data, guided by the research question. We first deductively coded data into the categories of the a priori taxonomy (described above) as they explicitly or intuitively corresponded to the categories and definitions. Any findings that did not correspond to the structural categories within the framework were inductively coded into new categories. We then inductively analysed the data under each category and developed themes as they emerged from the data. Themes were developed using the explicit words from the data and meanings and implications were not interpreted beyond what has been written by the authors [47]. This approach is aligned with the JBI guidelines for qualitative data analysis in scoping reviews, which are generally descriptive in nature with summaries of coded data in particular categories [35].

Results are presented as a narrative summary on the types of literature and the relevance of the included studies to Inuit, followed by a detailed account of the structural factors, and where on the cancer care continuum, they are documented as influencing cancer care.

Ethical considerations

Data were gathered from existing literature, and no human participants were involved at any stages of the study, therefore ethical approval from the affiliated university’s Research Ethics Board was not required because no primary data were collected on human subjects. However, it is pertinent to note that we took guidance and aligned the procedures with ethical principles and guidelines for research with Inuit as outlined by the National Inuit Strategy on Research [48]. This includes advancing Inuit governance in research by consulting members of Pauktuutit Inuit Women of Canada in this study; enhancing the ethical conduct of research by adhering to Chapter Nine of the Tri-Council Policy Statement [49], including developing respectful relationships, collaboration, and engagement between researchers and Indigenous partners; aligning funding with Inuit research priorities by developing the study purpose in response to the priorities identified in the published research on Indigenous cancer care [15] and by representatives from Inuit-specific organisations [50]; ensuring Inuit ownership, control, access, and possession over data and information by recognising and engaging Inuit partners throughout the research process, with transparent access to data collection and analysis; building capacity for Inuit Nunangat research by building a collaborative and respectful relationship with Inuit members from Pauktuutit Inuit Women of Canada as integral research partners.

Results

The initial search located 3652 citations from published databases and hand-searching. After removal of duplicates, 2794 articles were included in title and abstract screening, 113 papers proceeded to full-text review, and a total of 30 papers were included in analysis (see Figure 2 for flow diagram of study selection process). Of the 30 papers included, 18 described 17 research studies (one study was reported in two papers); 72% (n = 13) of the 18 research studies were from journal publications and 28% (n = 5) from grey literature. Research designs included qualitative (n = 14), quantitative (n = 2), and mixed methods (n = 1). Of the 12 non-research papers, 58% (n = 7) were found in journal publications and 42% (n = 5) from grey literature; seven were discussion articles, four were reports, and one was an editorial. Half the number of papers (n = 15) were published between 2019 and 2021 with four to six per each year, while the remaining half were published between 2002 and 2017.

Figure 2. Study selection process.

Slightly more than half (n = 17) of the included papers focused exclusively on Inuit, two of which focused on urban Inuit. Inuit were included in nine papers with First Nations and Métis, and four papers used the terms “Indigenous” or “Aboriginal” without specifying the particular group. Two papers only included women. Settings included secondary and tertiary care settings (n = 7); primary care settings (n = 4), with 19 papers not reporting on the type of cancer care settings.

Relevance of research to Inuit

Of the 17 research studies (presented in 18 papers) assessed for relevance to Inuit participants or communities using components of the Well Living House Quality Assessment Tool [43,44], six studies were rated as having strong relevance [17,23,51–54], four had moderate relevance [50,55–58], one had weak relevance [59], four provided no evidence of relevance [60–63], and two studies were not assessed as they are literature reviews and did not involve study participants [15,64]. The assessed papers most frequently reported evidence of keeping the study design/measures aligned with local priorities or aims articulated by the community. Whether the underlying theory was relevant to the community and whether the study protocol was vetted by local community members were both the least reported relevance criteria.

Structural factors that influence cancer care

Eleven themes were mapped onto the five categories of structural factors in the a priori framework (colonisation, health systems, social, economic, and political). See Table 1 for the themes within each structural factor that influenced cancer care experienced by Inuit, and Table 2 for characteristics of included articles and the categories of structural factors that emerged from each article.

Table 1. Themes of structural factors that influenced cancer care experienced by Inuit.

Structural Factor Category	Themes
Colonization	Colonial practices in westernised Canadian health care Historical legacy of the government and religious institutional projects
Health Systems	Complex coordination of care Lack of Inuit-specific cancer data Biomedical dominance
Social	Limited culturally and linguistically appropriate cancer information Racism
Economic	Exclusion from equitable resources and opportunities
Political	Inadequate recognition and appreciation of issues in geographically isolated northern communities Underestimation of cancer-related disparities Multi-jurisdictional nature of health service delivery

Table 2. Characteristics of included articles and structural factors that influence cancer care.

			Structural Factors
Article/Study Type	Author (Year)	Population, Location	Colonization	Health Systems	Social	Economic	Political	Evidence of Relevance to Inuit
Cancer control report	Canadian Partnership Against Cancer (2011)	Inuit Canada		✓			✓	Not applicable (not a research study)
Cancer control report	Canadian Partnership Against Cancer (2014)	Inuit Inuit Nunangat; rural/remote	✓	✓	✓	✓	✓	Not applicable (not a research study)
Cancer strategy report	Kewayosh et al. (2015)	First Nations, Inuit, and Métis Ontario; on- and off-reserve communities		✓	✓	✓	✓	Not applicable (not a research study)
Discussion article	Ahmed et al. (2015)	Aboriginal populations Canada	✓	✓	✓	✓	✓	Not applicable (not a research study)
Discussion article	Ashton & Torchetti (2020)	Inuit Canada	✓	✓	✓	✓	✓	Strong Knowledge gathering including conversations with community members and service providers Project development guided by an advisory committee Community capacity building through workshops and Inuit-specific resources and supports
Discussion article	Beckett et al. (2021)	First Nations, Inuit, and Métis Canada		✓	✓	✓	✓	Not applicable (not a research study)
Discussion article	Chan et al. (2019)	First Nations, Inuit, and Métis Inuit Nunangat; rural/remote		✓	✓	✓	✓	Not applicable (not a research study)
Discussion article	Fraser (2021)	Inuit Nunavut; rural/remote	✓		✓		✓	Not applicable (not a research study)
Discussion article	Inuit Tapiriit Kanatami (2008)	Inuit Canada		✓	✓	✓	✓	Not applicable (not a research study)
Discussion article	Roberts et al. (2020)	First Nations, Inuit, and Métis Canada	✓		✓		✓	Not applicable (not a research study)
Editorial	Beben & Muirhead (2016)	First Nations, Inuit, and Métis Canada	✓	✓			✓	Not applicable (not a research study)
Mixed methods Retrospective review; thematic analysis and descriptive statistics	Smith et al. (2020)	Inuit Northwest Territories, Nunavut; rural/remote		✓		✓	✓	None identified
Programme report	Tungasuvvingat Inuit (2019)	Inuit Ottawa; urban	✓	✓	✓		✓	Not applicable (not a research study)
Qualitative descriptive study Focus groups and interviews	Enuaraq et al. (2021)	Inuit Inuit Nunangat and Ontario; urban and remote	✓	✓	✓	✓	✓	Strong Research approach grounded in Inuit Qaujimajatuqangit values and principles Study conducted in partnership with Inuit organisations (recognised as co-authors)
Qualitative participatory study Concept mapping, survey	Smylie et al. (2017	Inuit Ottawa; urban	✓	✓	✓		✓	Strong Community-based, participatory research methods Involvement of community representatives as active research members Culturally relevant training and mentorship Research principles included Indigenous leadership, capacity building, respect, cultural relevance, representation, and sustainability
Qualitative study Photovoice and interviews	Brooks et al. (2014)	Aboriginal women Saskatchewan; rural, urban, and on-reserve	✓		✓	✓	✓	Moderate Participatory visual method used to collect stories from Aboriginal women and promote group discussions Focus group with all participants and community stakeholders
Qualitative study Critical discourse analysis	Browne & Smye (2002)	Aboriginal women Canada	✓	✓	✓			Not applicable (not a research study)
Qualitative study Key informant interviews and literature reviews	Cameron (2011)	First Nations, Inuit, and Métis Canada		✓			✓	Weak Key informant interviews across northern and southern regions
Qualitative study Literature review, interviews, consultations	Corvus Solutions & Canadian Partnership Against Cancer (2012)	Inuit Inuit Nunangat; rural/remote		✓	✓	✓	✓	Strong Project methodology and development guided by an advisory committee and stakeholders in each Inuit Nunangat region Findings presented to participants for validation and discussion
Qualitative study Interviews	Galloway et al. (2020)	Inuit Nunavut; rural/remote	✓	✓	✓	✓	✓	Strong Guided by Inuit principles of Piliriqatigiinniq and Iqqaumaqatigiinniq Discussion with community stakeholders Research paradigm used the Piliriqatigiinniq Model for Community Health Research
Qualitative study Focused ethnography	Hordyk et al. (2017)	Inuit Nunavut; rural and remote	✓	✓	✓	✓	✓	Moderate Community capacity theoretical perspective Stakeholders from community organisations involved in pilot testing the interview guide
Qualitative study Scoping review	Horrill et al. (2019)	First Nations, Inuit, and Métis Canada	✓	✓	✓	✓	✓	Not applicable (literature review, no study participants)
Qualitative study Survey	Horrill et al. (2021)	First Nations, Inuit, and Métis Canada	✓	✓	✓	✓	✓	Moderate Critical appraisal of study findings by Indigenous health care providers with knowledge and experience in cancer care Cultural safety and trauma- and violence-informed care incorporated in the study framework
Qualitative study Interviews	Jull et al. (2021)	Inuit Nunavut; rural/remote		✓	✓	✓	✓	Strong Community consultations Study carried out in partnership with Inuit service organisations and community members Research approach guided by the Inuit Qaujimajatuqangit principles
Qualitative study Literature review, document analysis, interviews	McKenzie (2015)	Inuit Nunavut; rural/remote	✓	✓	✓	✓	✓	None identified
Qualitative study Environmental scan, focus groups	Pauktuutit Inuit Women of Canada (2013a)	Inuit Inuit Nunangat; rural/remote		✓	✓		✓	Moderate Advisory committee with cultural, regional, administrative, and subject matter expertise Inuit stakeholders involved in the study methodology and development
Qualitative study Same study as above	Pauktuutit Inuit Women of Canada (2013b)	Inuit Inuit Nunangat; rural/remote		✓	✓		✓	Moderate Same study as above
Qualitative study Literature review, synthesis of annual activity reports	Sheppard et al. (2019)	First Nations, Inuit, and Métis Ontario; both on- and off-reserve communities	✓	✓		✓	✓	Not applicable (review of the literature and patient navigator reports, no study participants)
Quantitative study Geospatial analysis	Chan, Friborg, et al. (2020)	Indigenous populations Rural/remote communities in Canada and Greenland					✓	None identified
Quantitative study Retrospective review	Chan, Linden, et al. (2020)	Inuit Nunavut; rural/remote					✓	None identified

Colonization

Two themes surrounding colonisation as a structural factor emerged from the literature: 1) colonial practices in westernised Canadian health care and 2) historical legacy of the government and religious institutional projects.

Colonial practices in westernised westernised Canadian health care

In this scoping review, westernised Canadian health care is understood as the mainstream health care system shaped by the predominant Eurocentric biomedical model in Canada, in comparison to Inuit holistic approaches for health and wellness. Findings revealed that Inuit were subjected to a number of exploitative colonial practices and policies, including but not limited to the disruption of traditional Inuit settlement patterns and the killing of Inuit sled dogs by the Royal Canadian Mounted Police, as well as biomedical skin graft experiments conducted during 1960–70s [65]. Inuit communities were viewed as a means for testing aetiological hypotheses and developing diagnostic techniques by non-Indigenous physicians and researchers who appropriated, patented, and profited from the data collected from Inuit [65]. It is evident that colonisation created long-term impacts on the physical and emotional well-being of Inuit families and communities [56,66]. Yet, the provision of health services today still reflects traces of colonial practices [56]; these practices have reinforced paternalistic and non-inclusive approaches towards health and health care for Inuit [23,62] and shaped the complex challenges Inuit face in cancer control [66].

Historical legacy of the government and religious institutional projects

Colonial projects between the Canadian government and religious institutions exercised domination over Inuit [51] and sought to eliminate their identity as a distinct group by forcibly seizing their territories and suppressing Inuit languages, cultures, and traditions [66]. Various colonial policies and practices were identified in the literature, including the removal of Inuit children from their homes and placement into the residential school system [15,51,66], forced relocations to the High Arctic and permanent settlements [22,51,66], as well as forced medical treatment and hospitalisation [56,62].

Health systems

Three themes emerged with respect to the structural factors within the health systems: 1) complex coordination of care, 2) lack of Inuit-specific cancer data, and 3) biomedical dominance.

Complex coordination of care

Inuit access to and experiences in cancer care are greatly hampered by the fragmented collaboration, programmes, and processes of care within the current health system [57,59]. Poor communication and coordination exist across different parts of the cancer care system, such as community centres, cancer agencies, and tertiary care centres, leading to delays in follow-up and planning of care [13,15,17,22,52,56,63,66–68]. Numerous papers also noted a paucity of longitudinal and integrated programmes and services within communities [13,15,17,22,50,51,57–59,62,66,67,69–72], such as early diagnostic services, radiotherapy, complex aftercare, and palliative care. As indicated in the Canadian Partnership Against Cancer 2014 report [13], “programs are not accessible in their communities and are not relevant to the unique experiences of Inuit cancer survivors” (p. 44). Furthermore, as travel is often required to get the necessary care, Inuit face additional logistical barriers related to scheduling appointments, paperwork, transportation, and accommodation [15,62,64,70], which further constrains Inuit’s access to cancer care.

Several supports within the health systems were identified in the literature. Patient navigators, case managers, and medical escorts play a key role in supporting Inuit patients and families on their cancer care journey and providing continuity of care [13,17,23,53,58,67,70,72]. The Ottawa Health Services Network Inc. (OHSNI) facilitates patient transfers and stays in southern hospitals, and provides interpretation services and administration support for appointments [62]. The Canadian Cancer Society offers cancer information helpline in Inuktut and peer support services that connects Inuit cancer patients to people with similar experiences [51]. In addition, several initiatives and programmes were found to support Inuk individuals and Inuit communities in cancer prevention, including tobacco reduction [13,17], Well Woman and Well Man Clinics [13,17,71], HPV vaccination [17], as well as mobile screening clinics [22].

Lack of Inuit-specific cancer data

The large information gaps in the cancer incidence, cancer risks, and the uptake of cancer prevention interventions in Inuit populations illustrate a further barrier surrounding a lack of comprehensive cancer control data specific to Inuit across Canada [22,59,68,73]. Currently, the ethnocultural identity of cancer patients is not captured by most health care systems in Canada [13,22,68]. There is a lack of Indigenous identifiers in major health and social databases, such as large population surveys and provincial cancer registries [22,68,69,73], and Inuit may not be identified if living outside of Inuit Nunangat [69]. Each region collects its own cancer data but to varying extents [59]; some systems do not distinguish between Inuit amongst all Indigenous groups, or combine Inuit data with national averages, because the Inuit sample size was deemed too small for analysis [71], thus failing to provide long-term and up-to-date research and surveillance evidence documenting cancer among Inuit. Inuit Tapiriit Kanatami [71] emphasised the need for more comprehensive, Inuit-specific data on cancer-related variables including “age, sex, smoker or non-smoker, medical history, types of cancer, treatments selected, survival and success rates of cancer diagnosis, treatment and essential care” (p. 13).

Biomedical dominance

Numerous papers have drawn attention to the dominance of biomedicine in health care systems and professions [57], which contributes to the unequal power relations inherent in medical encounters between patients and providers [7,56], as well as the tendency in health care to perceive and treat the physical body and diseases as isolated from the person as a whole [57]. Influenced by the biomedical model predominated by non-Inuit, the existing health delivery system favours and prioritises efficiency in time and money over quality of care [56,57], which lacks space for understanding Inuit ways of knowing and doing [13,54,57,66]. Traditional treatment and healing practices are unrecognised in mainstream patient care [22,56,62] and dismissed as ineffective in comparison to Western medicine [66]. Despite disruptions to traditional practices, Inuit retain their resiliency in the face of oppressive hardships, draw strength from healing and wellness practices, and promote deep connections to the land, family/community, language, as well as traditional resources and knowledge [23,51,52,56,64,72]. For instance, spirituality as an aspect of traditional life continues to be highly important to many Inuk individuals and Inuit communities [23,64]. Nonetheless, all components of the health systems must integrate and implement services in a way that is responsive to and sensitive to the practical and cultural needs of Inuit patients and families [13,67,68].

Social

Two themes emerged from the literature: 1) limited culturally and linguistically appropriate cancer information and 2) racism.

Limited culturally and linguistically appropriate cancer information

The limited culturally responsive cancer information available in Inuktut was commonly cited in the literature as an ongoing barrier for Inuit navigating cancer care [13,15,17,22,51,58,62,66,71]. The lack of consistent and dedicated resources and educational activities contributed to the difficulty in obtaining timely and accurate information [15,23,50–52,58,70,71], promoting awareness and communication [13,23,51,52,66,71], and engaging in cancer screening and prevention [17,51,64,71]. Moreover, the shortage of health care providers who are conversant with Inuit culture and languages [13,22,52,70] resulted in miscommunication of diagnosis and treatment plans [22,51,52,70] as well as misinterpretation of non-verbal body language [52,70]. Findings from two studies [52,70] suggest that service providers that were able to effectively support and develop meaningful interactions with Inuit patients were those who had been well versed and understanding of the language, customs, and community ways. In addition, Pauktuutit Inuit Women of Canada developed the Inuusinni Aqqusaaqtara – My Journey booklets [23] as a facilitator to support Inuit patients and caregivers on their cancer journey with plain language definitions, local resources, and easy-to-read cancer information.

Racism

This theme describes Inuit experiences of discrimination and being wrongly defined through racial terms and harmful generalisations [7,55], which included negative stereotypes about Inuit women as lacking willpower and judgement, or that prevention is not a meaningful concept to them [7]. Furthermore, health researchers have decontextualised social barriers faced by Inuit as resulting from differences in individual behaviours or lifestyles, rather than stemming from impoverished socioeconomic circumstances, marginalisation, and political influences [7,55,69,73]. In particular, past epidemiological conclusions in which low breast cancer incidence in Inuit women did not take into account the shifting nature of tumour classification, as well as the potential factors contributing to underreporting of the disease such as Inuit patterns of seasonal migration and resistance against federal medical surveillance amid forced relocations [65]. The flawed notion that breast cancer was rare among Inuit profoundly influenced northern health care systems, leading to many undiagnosed and untreated cases [65]. In response to this epidemiological legacy, breast cancer survivors and advocacy groups in the last two decades have launched public awareness and fundraising campaigns demonstrating that Inuit women do in fact develop the disease, along with new arguments and statistics that have been put forth to help prioritise breast health in the north [65].

Economic

Data extracted for the economic factors were synthesised into a single theme: exclusion from equitable resources and opportunities.

Exclusion from equitable resources and opportunities

Inuit access to cancer care is challenged by a number of socioeconomic stressors [17,55,64]. Several papers highlighted the lack of stable and affordable housing [15,17,51,55–57,64,73], community infrastructure [17,55,57,69–71], as well as nutritious market and traditional foods [15,17,22,23,55,64,70,71]. Inuit living in remote communities face substantial food insecurity as many are unable to afford healthy and nutritious food due to the high costs of food transportation [22,23,71]. Medical travel imposed a heavy burden on families because of insufficient financial and social resources to support local childcare and lost paid work [13,15,52,55,63,64]. Additionally, poverty [15,17,57], unemployment [52,57,73], low income [51,56,57,69], and inadequate support from employer to miss work [56,63] were also cited as barriers in obtaining cancer care.

Political

The political factors encompassed three themes: 1) inadequate recognition and appreciation of issues in geographically isolated northern communities, 2) underestimation of cancer-related disparities, and 3) multi-jurisdictional nature of health service delivery.

Inadequate recognition and appreciation of issues in geographically isolated northern communities

Challenges arising from the remote geographical locations and harsh climate conditions [13,15,51,53,55,57,61,63,69–71,73] were frequently underlined in the literature as a major barrier in Inuit cancer care journey. There is an ongoing human resource shortage across the spectrum of health care services within remote communities [22,51,55,57,67,68,70] because of the high turnover and low retention of permanent staff [13,15,17,55,56,58,62–64,71]. In order to receive specialised cancer services and procedures, Inuit must travel a far distance by flight to larger health centres in urban cities [13,15,17,22,51,52,55,57,61,63,66,69–71]. Developments in the area of telemedicine including tele-oncology [17] are taking place in Inuit Nunangat, which allows Inuit patients to stay in the community and promote interaction between the health care provider, the patient, and their family [71].

Underestimation of cancer-related disparities

Health spending decisions by governments in the north tend to focus on diseases that are higher in prevalence and incidence [17,62,65,69]. Furthermore, neoliberal ideologies and political economics of health risk have shaped the approach taken by Nunavut’s Department of Health to breast cancer prevention and investment in mammography [65]. Currently, Inuit in various regions are taking greater control over health care policy, programming, and service delivery in local communities [68,71]. The land claims agreements require governments to seek Inuit direction in the design and delivery of health services, which marks a crucial step forwards in the development of appropriate health care for Inuit [71].

Multi-jurisdictional nature of health service delivery

The provision of health care to Inuit is operated by multiple, overlapping governments, corporate entities, and agencies [13,15,22,54,66,71]. Ambiguities and complications between the federal, provincial, or territorial jurisdictions over the responsibility for health care costs can lead to delayed or reduced access to cancer services for Inuit patients [13,15,54,62,66,70]. Several limitations in the Non-Insured Health Benefits (NIHB) programme were brought forth in the literature. For example, a lack of alignment was identified between general health care principles and the NIHB policies related to medical travel [23,64,68,71]; the coverage is focused on cancer treatment rather than prevention [13,15,67,68], and expenses of having an accompanying person for travel and appointments are not consistently covered [52,70]. Moreover, not all constitutionally recognised First Nations, Inuit, and Métis are eligible for benefit coverage [68], which varied by the individual’s legal status and place of residence [66,68].

Aspects of cancer care influenced by structural factors

Articles identified different aspects of cancer care that were influenced by structural factors, with many noting more than one type of cancer care being impacted. Aspects of cancer care identified in this review included cancer prevention (n = 15), cancer diagnosis (n = 4), cancer treatment (n = 13), survivorship care (n = 5), and palliative care (n = 9). The literature also examined elements of medical transportation (n = 9) including medevac and patient navigation, which can occur at any point throughout the care trajectory. Four papers did not specify the type of cancer care addressed and used general terms such as “cancer care”.

Influences of structural factors

Structural factors influenced cancer care experienced by Inuit in four central ways: 1) disruptions to care, 2) exclusion and marginalisation, 3) fear, mistrust, and trauma, and 4) financial constraints.

Disruptions to care

The literature reiterates that structural factors disrupt and constrain cancer care for Inuit [13,15,17,22,51,57,58,66,68,70]. Disrupted care contributed to increased risks of chronic illness and cancer [17,66], delayed or missed diagnoses that are often too late for treatment options [13,51,52,54,59,62,67,73], as well as negative impacts on health-related outcomes and meeting Inuit health care needs [62]. Inuit faced lengthy wait times for appointments and follow-up [15,53,54,71], which were worsened by flight cancellations due to inclement weather when they were required to travel for care [13,63,71]. Inuit patients undergoing treatment at tertiary centres were separated from families, communities, and support networks, who are often important sources of emotional support when coping with the challenges of cancer [13,15,17,23,52,58–60,62,67,69–71]. The disjointed continuity of care and relationship between the patient and provider were also reported in the literature [13,15,17,56,57,63,69,71,73], such that Inuit face challenges in obtaining follow-up regarding test results [50,51,58] and have to frequently repeat their medical history whenever encountering a new health care provider [51].

Financial constraints

Being forced to adjust to new financial constraints and challenges were revealed in descriptions of the cancer care journey. In addition to the physical and emotional impact of a cancer diagnosis, Inuit patients and families had to adjust a new range of financial hardships related to loss of employment or income, childcare costs, and disruption in family routine [13,23,52,53,55,57,62,71,73]. Enuaraq et al. [23] emphasised that imposing financial burden on individuals to care for loved ones undergoing treatment in urban centres is an assertion of Western values that does not promote the autonomy of Inuit for culturally safe care. Participants from several studies described having to focus on daily survival and making ends meet [15,55], being unable to afford recommended foods and equipment [55,57], and unable to continue education [52].

Exclusion and marginalization

Experiences of exclusion and marginalisation [23,52,71] emerged as a recurring theme related to the influences of structural factors on cancer care. Eroded Inuit governance and perception of rights [66] became apparent as participants described the lack of knowledge and decision-making in the planning of care throughout their journey to receive cancer care [53,62,67]. Several papers also discussed Inuit cancer-related concerns and/or symptoms not being heard or responded to appropriately by health service providers [52,65], resulting in negative health outcomes and encounters [52]. Additionally, reduced awareness of cancer screening and prevention [13,15,17,22,51,53,62,64,68] was reported in the literature as a barrier resulting from the structural influences on Inuit access to cancer care.

Fear, mistrust, and trauma

The words, fear, mistrust, and trauma were commonly used to describe Inuit experiences in the mainstream health care system [15,22,55,66,67]. The colonial legacy reinforced the deeply engrained silences and a general distrust towards health care providers and procedures [13,15,22,51,67]. Institutional racism against Inuit patients led to feelings of intimidation and fear of being stigmatised [55,69]. Several papers discussed intergenerational trauma stemming from residential school attendance and its effects on Inuit cancer care [15,51,56,62,64,67], such that the grieving process for loved ones with inadequate psychosocial care often aggravated the trauma that resides in collective memories of individuals and communities [56]. Inuit patients and family members described having a lack of appropriate supports and being overwhelmed with information and decisions [13,23,51,52,58,62,70,71], which added stress and confusion of not knowing what to expect in the cancer journey [13,23,58,62,71].

Discussion

Our study aimed to synthesise the available published and grey literature on the structural factors that influence cancer care of Inuit in Canada. The aspects of cancer care of Inuit identified in this review were cancer prevention, cancer diagnosis, cancer treatment, survivorship care, palliative care, as well as medical transportation. The emerged themes fell into all categories of the a priori framework, with more themes in the health systems and political factors than the colonisation, social, and economic factors. In addition, the influences of structural factors on cancer care were: disruptions to care; exclusion and marginalisation; fear, mistrust, and trauma; and financial constraints. These findings prompted to the following points for discussion.

To begin, the structural barriers to cancer care that were identified in this review, particularly those relating to colonisation and social factors, point to the inextricable interconnections between systemic racism and colonialism. The processes of colonisation have led to persistent and entrenched racism against Indigenous Peoples [6], and the two are closely intertwined in terms of how they affect Inuit cancer care and wellness [74,75]. Colonialism is justified through perpetuating racist beliefs about Inuit as fundamentally inferior and shaping public services such as health and health care, education, justice, and child welfare [16,19,76]. Racism further compounds the contemporary impacts of colonialism, which contribute to the obstruction of Inuit self-determination as well as a lack of equitable access to services and resources within the existing health system [6,76]. Addressing systemic racism thus calls for systemic actions to acknowledge and understand how Western health care systems are built upon colonial and racist foundations [77] and to create comprehensive efforts in policies and institutions to eliminate prejudice and discrimination against Indigenous Peoples [78,79].

Furthermore, only two papers have specifically looked at cancer care of Inuit living in urban settings. Our findings mirror the paucity of data around urban Inuit health and health care within the broader literature, which was also echoed in a previous study related to First Nations and Inuit older adults living in Ottawa, Ontario [80]. In Canada, a growing Inuit population lives in urban centres such as Edmonton, Winnipeg, Ottawa, and Montreal [81]. However, urban Inuit continue to experience disparities in social determinants of health such as employment, education, food, adequate housing, and health care [54,67], all of which are rooted in the historical and contemporary effects of colonialism [82]. Dominant colonial narratives reinforce the exclusion of Indigenous Peoples from urban locations, including histories that fail to acknowledge non-Indigenous occupation of the lands as well as perceptions about the incompatibility of Indigenous identities and urban space [83]. Urban Inuit community members may be further marginalised as they lose access to many federal programmes that are only available within land-claim settlement regions [81,83], as well as through services that presume a one-size-fits-all, pan-Indigenous approach without taking into account the unique values and needs of Inuit [80].

Lastly, findings from this study underline the need for principled, comprehensive, and system-wide efforts to address the structural barriers in cancer care that are underpinned by the colonial legacy and racism [23,84]. A basic public awareness has grown over the last decades that the injustices faced by Indigenous Peoples in Canada are rooted in an enduring legacy of colonialism [79]. However, previous research suggests that action and advocacy at the systems and structural levels remain absent, as solutions targeting the structural conditions may be perceived as falling outside of the purview of the health care system or beyond the scope of individual health care providers or institutions [85]. While changes on the individual level may have a greater direct influence on patient experiences, a systemic and coordinated approach involving collaboration across various sectors is required to make meaningful headway in dismantling the colonial structures in policies and practices in Canada [75,78,79]. Strategies for addressing the broader contexts of health include “improvements within the education sector, additional buy-in and accountability within healthcare organisations, broader implementation of cultural safety, and broader recognition of the impacts of anti-Indigenous racism” (85, p.155).

Strengths and limitations

The following strengths and limitations should be considered when interpreting the study findings. A transparent and rigorous approach guided by the JBI methodology, along with a comprehensive search strategy that was peer-reviewed by an academic librarian with expertise in Indigenous health, contributed to the strengths of this scoping review. Consistent with the purpose of scoping reviews, the capacity to incorporate grey literature can also be considered as a strength to this study given that Inuit knowledge and experiences can often be found beyond published data in a wide and diverse range of literature. In addition, a quality assessment was carried out using components of the Well Living House Quality Assessment Tool to assess the relevancy of the included literature to Inuit.

Although no linguistic restrictions are established in the search strategy, the study team did not have the ability to search or capture the literature in Indigenous languages such as Inuktut. The range of data in this scoping review may be limited as relevant evidence may exist in forms other than written documents or in other databases that could not have been identified in the literature search. For instance, Indigenous Peoples’ knowledge has also been shared through oral traditions, songs, arts, and ceremonies, and these local forms of wisdom may not be represented or synthesised in this scoping review.

Conclusion

Our scoping study explored what is known within the current written western science literature and Indigenous organisation publications about the structural factors that facilitate or hinder Inuit cancer care access and experiences and identified an intricate interplay of colonisation, health systems, social, economic, and political structures that influence cancer care of Inuit in Canada. The study findings highlight the link between racism and colonialism, in which colonialism is justified and perpetuated through racism within the health system. There was also limited information regarding cancer care of urban Inuit in Canada, who experience unique and complex challenges in accessing health care. Addressing the structural barriers that Inuit face in the cancer care trajectory requires a system-wide approach. Given the ongoing disparities in cancer-related outcomes among Inuit compared with non-Indigenous patients in Canada, results from this study inform health care policy and delivery with the goal of improving health equity for Inuit in cancer care. Further research in partnership with Inuit is necessary in developing long-term strategies underpinned by accountability to address the structural barriers to cancer care and reduce health and social inequities experienced by Inuit.

Acknowledgments

We would like to extend our gratitude to Pauktuutit Inuit Women of Canada and acknowledge the contributions of the Health Programs team who supported this study. We also thank Inuit community members who provided input on this paper at the Inuit research symposium. We would also like to thank Lindsey Sikora, University of Ottawa Research Librarian (Health Sciences and Medicine), for her guidance and support in conducting the literature search, as well as the contributions of Catherine Larocque as the secondary reviewer in data screening and extraction.

Disclosure statement

The author(s) report no potential conflict of interest with respect to the research, authorship, and publication of this manuscript.

Data availability statement

The authors confirm that the data supporting the findings of this study are available within the article and its supplementary materials.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/22423982.2023.2253604.

Additional information

Funding

The authors received no financial support for the research, authorship, and publication of this manuscript.