Abstract
BACKGROUND: The distribution of hepatitis C (HCV) infection in Canada signals a widening gap between Indigenous and non-Indigenous people. Current evidence demonstrates that the rate of HCV infection among Indigenous people is at least five times higher than the rest of Canada. This analysis provides a reconciliatory response, which exposes the colonial etiology of the HCV gap in Canada and proposes potential anti-colonial approaches to HCV wellness and health care for Indigenous people. Methods: This analysis applies Two-Eyed Seeing as a reconciliatory methodology to advance the understanding of HCV burden and identify the key elements of responsive HCV care in the context of Indigenous nations in Canada. Results: The analysis underlines the colonial distribution of HCV burden in Canada, highlights Indigenous perspectives on HCV infection, hypothesizes a clinical pathway for the underlying colonial etiology of HCV infection, and identifies Indigenous healing as a promising anti-colonial conceptual approach to HCV wellness and health care among Indigenous people. Conclusions: In the eyes of Indigenous people, HCV infection is a colonial illness that entails healing as an anti-colonial approach to achieving wellness and gaining health. Future empirical research should elaborate on the colonial HCV pathway hypothesis and inform the development of a framework for HCV healing among Indigenous people in Canada.
Indigenous knowledge systems are too frequently made into objects of study, treated as if they were instances of quaint folk theory held by the members of a primitive culture. The decolonizing project reverses this equation, making Western systems of knowledge the object of critique and inquiry. (1 p6)
This article is a reconciliation-based analysis of hepatitis C (HCV) infection among Aboriginal (Indigenous) people in Canada (ie, First Nations, Métis, and Inuit). It is intended to provide a HCV-focused response to the Truth and Reconciliation Commission of Canada, which calls for closing the health gap between Indigenous and non-Indigenous people, as well as for ‘[acknowledging] that the current state of Aboriginal health in Canada is a direct result of previous Canadian government policies, including residential schools’ (2 articles 18–19). This analysis focuses on addressing the colonial health gap in the context of HCV infection by exposing colonialism as a direct determinant of the inequity in HCV burden among Indigenous people and by underlining potential anti-colonial approaches to HCV care. The term anti-colonial is used to emphasize a comprehensive approach to resisting colonialism that encompasses prevention and reversal (i.e., de-colonization) of colonialism. Here, colonialism is applied as an umbrella term for all past and contemporary processes of oppressive colonial systems, including colonization, neo-colonialism, and racism (3–5).
This analysis applies Two-Eyed Seeing, described later, to foreground Indigenous orientations of HCV among Indigenous people. First, it exposes the colonial distribution of HCV burden in Canada. Second, it uses Indigenous wholistic theory to emphasize Indigenous perspectives on HCV infection. Then, it applies historic trauma (HT) theory to introduce a hypothetical pathway for the underlying colonial etiology of HCV infection. Finally, it explores trauma-informed care (TIC) as an approach to anti-colonial HCV care and underscores Indigenous healing as a promising conceptual framework for Indigenous HCV HT-informed care.
The distribution of HCV infection in Canada signals a widening gap between Indigenous and non-Indigenous peoples in Canada (6–8). Current evidence demonstrates that the rate of HCV infection among Indigenous people is at least five times higher than that of the rest of Canada (9–12). This sharp disparity encompasses many HCV-related epidemiological statistics, including incidence, prevalence, and health outcomes such as baseline viral loads, disease progression, and mortality (7–8,13–16). Also deviating from the national trend are the demographics of HCV infection, where young women have emerged as the face of HCV among Indigenous people (7–11,15–18). This is in contrast to the middle-aged male profile of HCV in Canada (6).
The inequitable distribution of HCV among Indigenous people mirrors the distribution of HCV risk factors (5–6,19). The gap between Indigenous and non-Indigenous HCV risk and outcomes is exemplified by the burden of injection drug use (IDU). As a critical determinant of HCV risk, IDU is inequitably prevalent among Indigenous people (6–9,20). The fact that young Indigenous people (aged 24 years or younger) carry the burden of 70%–80% of HCV infections among people who inject drugs (PWID) in Canada is alarming (6–11,16,20).
It is important to highlight that HCV data for Indigenous people are limited (6,9–11,16,20–21). In our view, these data deficiencies compound the inequities in the distribution of HCV burden among Indigenous people because they impede the Canadian health care system’s capacity to ‘identify and close the gap on the health outcomes between Aboriginal and non-Aboriginal communities’ (2 article 19).
Also violating the reconciliation mandate are mainstream orientations to HCV in Canada, which seem blinded to its colonial distribution. The colonial distribution of HCV is a reality in colonized countries, where HCV burden is constitutively higher among Indigenous people relative to their non-Indigenous counterparts (7,13). Nevertheless, mainstream orientations lack an explicit recognition of this colonial HCV gap; in turn, they fail to address colonialism as a direct determinant of HCV burden among Indigenous people.
Specifically, in Canada, the blinded orientations stem from a major misclassification of HCV risk. This is exemplified in ‘Hepatitis C in Canada: 2005–2010 Surveillance Report’ (6). In this report, Indigenous people are classified among the five populations at high risk for HCV infection: PWID, inmates, men who have sex with men, street youth, and Aboriginal populations (6). Although the grouping qualifiers for the first four populations are behavioural, circumstantial, or both, the latter is ethnic. This is clearly a misclassification.
This misclassification is problematic on several fronts. First, it distorts the universality of HCV risk factors among Indigenous and non-Indigenous peoples. Indigenous people are represented in all the other four high-risk groups and are overrepresented among PWID, inmates, and street youth (8–9,16,20,22–23). Consequently, a more precise orientation would locate Indigenous people as a central rather than parallel group of analysis in relation to HCV risk (Figure 1).
Figure 1: Blinded versus sited orientations of HCV distribution in Canada
Second, the misclassification overshadows colonialism as a plausible confounder of the observed association between Indigenous ethnicity and HCV burden in Canada (7). Colonialism is a collective risk exposure that is unique to Indigenous people. It is also an established determinant of Indigenous health (2 article 18,5,19,24). The potential for confounding arises because of the tight association between colonialism and Indigenous ethnicity, as well as between colonialism and Indigenous health outcomes. The concepts of ethnicity and identity (as understood in an Indigenous context) are distinct. Indigenous identity refers to contextualized and dynamic collective experiences. According to King, Smith, and Gracey, positive and negative identities are experienced among Indigenous people in Canada and are associated with predictable health outcomes (19). Negative Indigenous identities are constructed in the colonial context and are directly associated with adverse health outcomes (5,19). The opposite is true for anti-colonial contexts (5,19). A more accurate classification of Canadian populations at high risk for HCV infection could perhaps include a category for populations resisting colonialism and not for ‘Aboriginal populations.’
Third, the misclassification inaccurately frames Indigenous ethnicity as an independent HCV risk factor rather than as a protective factor. Indigenous ethnicity fails to qualify as an independent explanatory factor of the HCV distribution among Indigenous people. Indigenous ethnicity is not a common exposure for Indigenous people because they are ethnically diverse (7,25). Moreover, many of the unifying traditional elements of Indigenous ethnicity are indicated as protective against adverse health outcomes, including HCV infection (26–28). The variation in and protective strengths of Indigenous ethnicity challenge the validity of an independent association between Indigenous ethnicity and HCV burden among Indigenous people, further pointing to the possibility of colonial confounding.
Despite these factors, mainstream orientations are blind to the colonial HCV gap. These orientations dislocate HCV risk within ascribed and decontextualized pan-Indigenous ethnic boundaries, which do not account for the diversity and protective elements of Indigenous ethnicity and for the direct links between colonialism and HCV burden among Indigenous people. Therefore, we argue that this problematic framing warrants a sighted orientation that recognizes HCV burden among Indigenous people as colonialism determined and Indigenous centred.
The adoption of a sighted orientation is an ethical, reconciliatory, and epidemiological obligation. This adjustment provides a normalizing and accurate perspective that externalizes HCV risk relative to Indigenous ethnicity while centring HCV burden—hence, action priority—among Indigenous people. From an ethical perspective, a focus on colonial risk will buffer the inadvertently colonizing orientation that segregates Indigenous people from the rest of Canada despite their overlapping baseline HCV risk factors. It also proffers reconciliation-based approaches to honour the mandate to acknowledge colonialism as a direct determinant of Indigenous health (2 article 18). From an epidemiological perspective, the adjustment responds to the imperative to target colonialism to address the colonial HCV gap. Operationalization entails an anti-colonial approach to HCV care that prioritizes Indigenous people and focuses on colonial risk as a primary target for HCV care. A sited orientation starts with Two-Eyed Seeing.
Etuaptmumk, or Two-Eyed Seeing, is an anti-colonial approach to health research and practice (29–31). It provides a balancing lens that emphasizes Indigenous health perspectives while upholding and valuing mainstream perspectives (30). This seeing enables a reconciliatory assertion of Indigenous–Western duality as a principle; it also activates the wider reconciliatory health agenda that situates the responsibility of Indigenous health care dualistically within Indigenous and mainstream realms (2 articles 18–24,32). More important, Two-Eyed Seeing respects the great diversity of Indigenous people’s worldviews (33–35).
This analysis applies Indigenous wholistic theory to promote Two-Eyed Seeing of HCV infection among Indigenous people. The theory provides a stark contrast to mainstream worldviews (32). A pivotal point of divergence between the two is the conception of the self or the person. This is mirrored in the differential paradigmatic constructions of HCV infection between Indigenous wellness care and mainstream health care.
The theoretical conceptions of the Indigenous self or person are wholistic and complex. The concept of wholism captures the multi-dimensional and relational existence of the Indigenous self or person. This concept is not associated with holism, which is a system of therapeutics, especially once considered outside the mainstream of scientific medicine, such as homeopathy, naturopathy, or chiropractic. The self is understood beyond the boundaries of the individual; it is seen as a spiritual web of relationships with all elements of creation, including other humans, the land, and the spirit world (33–34,36). This complexity is captured by Absolon: the self is described as reciprocally interconnected levels of beings—individual, family, community, nation, society, and ecology of creation. Each level of being has four life dimensions—emotional, mental, physical, and spiritual. Each level of being is experienced within a wholistic context—economical, historical, political, and social (37). Indigenous cultures are located at the very core of the Indigenous existence or self (33–34,38; Figure 2).
Figure 2: Depiction of the Indigenous self as a spiritual web of relations
The wholistic conceptions of the Indigenous self or person challenge individualistic mainstream constructions of the person. Indigenous perspectives weave the individual into creation to construct the self (39). Here, the individual is seen as an integral part of the web of self relations. This proffers a sharp contrast to mainstream perspectives, which apply the concepts of the individual and the self interchangeably to construct the individual and creation as distinct yet connected entities (40).
These contrasting constructions of the self lead to different understandings of HCV infection. For Indigenous people, HCV can be seen as embodied within a complex Indigenous self and understood wholistically from a relations-centred, rather than an individual-centred, point of view. This wholistic perspective on HCV infection surpasses contextualization. The former is unifying; the latter is stratifying. Contextualization stratifies individual and structural factors as proximal (e.g., health behaviours) and distal (e.g., colonialism) determinants of Indigenous health, respectively (5–6). This leads to a mirroring stratification of health care priorities, which locate colonialism upstream as an indirect target for HCV interventions. In contrast, the wholistic conceptions of the Indigenous self bridge the individual–structural divide and collapse the space between proximal and distal determinants of Indigenous health, pushing forward colonialism as a direct determinant of HCV burden and target for HCV intervention.
Consequently, addressing HCV infection among Indigenous people requires a wholistic HCV care approach, which attends to the presenting individual and his or her self relations as one entity while simultaneously addressing colonialism within the boundaries of one’s relations.
The conceptualization of Indigenous wellness further demonstrates how HCV infection and care are envisioned among Indigenous people. Wellness is defined as a dynamic state of self-balance (19,33,37). The absence of wellness is conceptualized as illness, a state of self-imbalance that is induced by misbalancing risks such as colonialism (19,33,37). HCV infection among Indigenous people can be seen as an embodied or physical dimension of colonial illness, which can be addressed wholistically by restoring wellness. Wellness (and illness) are wholistic concepts that envision health and disease as individual-level sub-states of self wellness and self illness, respectively. Consequently, mainstream HCV health care can be envisioned as a critical element within an encompassing Indigenous wellness strategy.
Wellness care involves more than health care. Achieving wellness entails strengthening Indigenous resilience (41–42). Indigenous resilience hinges on culture; this relationship is conceptualized as cultural resilience (37–38,41–44). Connection and mobilization of Indigenous culture can be enabled through healing, which is experienced as an ongoing cultural journey toward strengthening resilience and achieving wellness (33–35,41,45–46). Indigenous healing is wholistic, strengths based, and culture rooted; this is in contrast to mainstream health care, which is individualistic, pathology based, and science rooted (5,19). (Here, we refer to Indigenous healing as a paradigm and apply it as a concept or approach rather than a specified model or program. We recognize that Indigenous healing practices are diverse and unique to individual Indigenous communities and cultures. We do not assume the existence of a pan-Indigenous model of healing.) The flexibility of healing paradigms allows them to recognize the value of compatible mainstream health care and integrate it as a sub-category of wellness care (33–35). This allows Indigenous healing to provide a reconciliatory Two-Eyed Seeing approach to HCV care, which responds to the unique and dynamic HCV wellness needs of Indigenous people. From an Indigenous perspective, addressing HCV burden starts with healing from colonialism through a wholistic, cultural, and strength-based process of wellness and health care.
HT theory provides a foundation for a hypothetical clinical pathway, the HT HCV pathway, that links colonialism and HCV infection among Indigenous people. It also introduces colonialism health indicators for research and practice. Grounded in HT theory, we hypothesize that the HT HCV pathway is triggered by colonial stress (ethnostress). This manifests as HT and leads to the historic trauma response (HTR) that is embodied as HCV infection.
Although the links between colonialism and trauma are well established, in this analysis we emphasize the severe impact of colonial stress that transcends general psychological trauma (3–4,46). Colonialism causes historic loss. The extent of this loss is massive inasmuch as it is collective and experienced by the Indigenous self at all its levels and relations, and it is cumulative across a life course and chronic across generations (3–4,47–48). The upshot has been a mirroring disruption of Indigenous wellness, which is conceptualized as ethnostress (33; Figure 3). Ethnostress manifests as HT: it is a 4-C caliber trauma: colonial, collective, chronic, and cross-generational (3–4,33,37,41,49); it is severe and distinct from general psychological trauma (3–4,50–51). Historic trauma refers to the ongoing and intergenerational traumatization of Indigenous people as a group. The word historic emphasizes the colonial roots of this lingering and pervasive trauma; it is applied to describe this trauma as a past or historic event. Here, we underscore this fact by stressing the 4-C caliber of HT and HTR. The disfiguring severity of HT is captured by its conceptualization as the soul wound, in reference to the colonized self (33–34; Figure 3). This wounding of the Indigenous self leads to HTR, which is defined as a collective, chronic, and cross-generational ‘constellation of features associated with a reaction to [historic] trauma’ (4 p283) and involves historic unresolved grief (HUG), emotional deregulation, and psychological challenges, including substance use (i.e., IDU) (3–4). HUG is the spiritual dimension of HTR. HUG is conceptualized as ‘the profound unsettled bereavement resulting from cumulative devastating losses, compounded by the prohibition and interruption of burial practices and ceremonies’ (4 p283. This loss is attributed to both cultural and interpersonal losses (including death and disturbed relationships) rooted in colonization and its legacies (4). As a major determinant of HCV risk and a well-established dimension of HTR, IDU provides an etiological bridge between HCV infection and HT exposure among Indigenous people (3–4,7,20, 28,47–48,51–56). Here, IDU can be envisioned as an adaptive, collective, psychological HTR, which is embodied as HCV infection among Indigenous people (Figure 4).
Figure 3: Depiction of the colonized self
Figure 4: Hypothetical pathway for the colonial etiology of HCV infection
The association between colonialism and HCV infection is supported by empirical evidence. HT has been directly associated with the elevated HCV burden among Indigenous people (7,15,24,28). Also well-evidenced is the direct and behaviour-mediated neurobiological association between exposure to traumatic stress and a spectrum of adverse health outcomes (55,57–60).
The proposed HT HCV pathway exposes the underlying colonial etiology of HCV infection while normalizing and externalizing IDU among Indigenous people. As dimensions of HTR, IDU and HCV infection are seen as natural and non-individualistic responses to HT (i.e., the wounding of the Indigenous self and the disruption of Indigenous wellness). This underlines the imperative for a responsive anti-colonial and wellness-based approach to HCV care for Indigenous people.
The HT HCV pathway defines a potential path to address the colonial HCV gap, which situates HT as a primary focus for HCV intervention. Operationalization could entail targeting established HT and HTR metrics as colonialism health indicators, including the Historical Loss Scale, Historical Loss and Associated Symptoms Scale, and Indigenous Peoples of the Americas Survey, which measure HT and HTR (4,49). It would also involve a three-pronged strategic focus on prevention of HT, HT harm reduction, and promotion of wellness:
HT prevention involves shifting the prevention focus from IDU to HT, as well as from the individual to the system of HCV care. Here, IDU is approached as a normal adaptive HTR rather than a primary risk target, and the focus is instead channeled toward the prevention of re-traumatization within the context of HCV care. The latter entails Two-Eyed Seeing to enable the provision of de-colonized, non-traumatizing HCV care. The resulting normalization should address the stigma and cultural safety barriers to HCV care among Indigenous people (3–4,7,15,18,26–28,54,61–62).
HT harm reduction entails the adaption of trauma-focused harm reduction models of HCV care. The primary objective is to strengthen Indigenous resilience against existing HT by promoting cultural approaches to coping and enabling stabilization through the realization of a balanced Indigenous self (33–34,51,55).
Wellness promotion involves addressing HCV infection as a physical dimension of HTR and entails restoring wellness to concurrently promote healing from HT and HCV infection. Here, HCV care is wellness centred rather than HCV centred and resilience based rather than treatment based.
TIC is a promising approach to anti-colonial HCV care. TIC recognizes trauma as a prevalent risk factor for a spectrum of health outcomes (55). By addressing trauma as a primary health care target, TIC can be responsive to the HCV care needs of Indigenous people (55). TIC is compatible with Indigenous culture because it is wholistic in scope and adopts a strength-based approach that addresses trauma responses (eg, IDU and HCV) as adaptive coping strategies rather than as symptoms of underlying pathologies (51,55). Moreover, TIC is grounded in three Indigenous-relevant principles: safety against re-traumatization within health care, stabilization through normalization and strengthening resilience, and empowerment to promote self-management, as well as engagement in health care and therapy-oriented trauma-specific care (TSC; 33,51,55). These principles can be applied as strategies for anti-colonial HCV care, where safety enables the prevention of HT; stabilization facilitates HTR, and empowerment enables the promotion of wellness. TIC proffers an alternative approach to health care and a springboard toward the operationalization of anti-colonial HCV care (Figure 5).
Figure 5: TIC
Indigenous healing, as a conceptual framework, can be envisioned as an approach that intersects with and extends TIC for Indigenous people (Figure 5). From an Indigenous perspective, healing approaches surpass TIC in relevance and capacity. Indigenous healing proffers well-established mechanisms to connect to and mobilize Indigenous cultures, which are vital for wellness and provide effective HCV interventions for Indigenous people (3–4,28,31,33–34,63–65). This capacity has stood the test of time and is exemplified by the successes of the Aboriginal Healing Foundation’s various healing programs (33–35,45). These programs did not necessarily have a HCV focus, but they addressed its colonial determinants (i.e., HT) within healing frameworks that are more established than TIC, as well as encompassing of TSC (34–35,51,55). Consequently, Indigenous healing is well positioned to deliver HCV HT-informed care (HCV HTIC). This flips the HCV care equation for Indigenous people, where compatible HCV health care is integrated into a broader wellness strategy, rather than the other way around (Figure 6). The flexibility of Indigenous healing enables it to use mainstream HCV care while remaining steadily Indigenous (34–35). As such, HCV HTIC exceeds the standards of culturally competent and safe HCV care (66–67). Rather than appending cultural standards or healing programs secondary to mainstream HCV care, HCV HTIC prioritizes Indigenous cultural capacities as the foundation of HCV wellness and health care. From a reconciliatory perspective, this duality is paramount because it accounts for Indigenous (hence, culture bound) and mainstream (hence, science bound) perspectives (34–35).
Figure 6: Conceptualization of HCV HTIC
In the eyes of Indigenous people in Canada, HCV is a colonial illness that demands a healing journey toward wellness. Further empirical research must emphasize the HT HCV pathway and establish the key components of a flexible and scalable framework for HCV HTIC. This research will involve the establishment of Indigenous-relevant HCV wellness indicators, which may include Historical Loss Scale, Historical Loss and Associated Symptoms Scale, and Indigenous Peoples of the America Survey (4,49). It will also entail the development of systematic strategies to amend the limitations in HCV data for Indigenous people. We will also develop an Indigenous research tool kit to enable the contextualization of the HCVHTIC framework within the diverse Indigenous communities in Canada.
Acknowledgements
The formative aspects of this article arose from a directed reading course taken by S. T. Fayed and co-supervised by A. and M. King (SFU HSCI 893). The research was funded through various grants received by A. and M. King from the Canadian Institutes of Health Research (CIHR). This article is part of a special topic series commissioned by the Canadian Network on Hepatitis C (CanHepC). CanHepC is funded by a joint initiative of the CIHR (NHC-142832) and the Public Health Agency of Canada.
Conceptualization, STF; Methodology, STF; Investigation, STF; Writing – Original Draft, STF; Writing – Review & Editing, AK, MK, CM, JD, NR, BH, SG; Funding Acquisition, AK, MK; Resources, STF, AK, MK, CM, JD, NR, BH, SG; Supervision, AK, MK.
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