The Medicine Wheel: informing the management of tuberculosis outbreaks in Indigenous communities

ABSTRACT

Many Indigenous communities in Canada experience endemic tuberculosis with superimposed periodic epidemic outbreaks. Failures in outbreak management have resulted in the “seeding” of future infection and disease. In this paper we present a model that may be used in planning, implementation and review of tuberculosis outbreak management in Cree Indigenous communities in Canada, based on the Medicine Wheel, a paradigm for holistic living. In the context of tuberculosis management, the Medicine Wheel provides a path for the establishment of respectful cross-cultural relationships, the expression of values through action, true community engagement and partnership, and the establishment of culture-based processes of transparency, accountability and change.

KEYWORDS:

• Tuberculosis
• health
• culture
• First Nations
• traditional knowledge
• knowledge translation

Introduction

In 2018 the incidence of tuberculosis (TB) in First Nations peoples (Indigenous persons who are distinct from Metis and Inuit) was 49.7, 27.1 and 8.3 per 100,000 in the Canadian western prairie provinces of Manitoba, Saskatchewan and Alberta respectively [1]. In the same year, the incidence among Canadian born non-Indigenous people was 1 per 100,000 in Manitoba and < 1 per 100,000 in Saskatchewan and Alberta [1]. The experience of many First Nations communities in western Canada is one of TB outbreaks superimposed on pre-existing high incidence rates of infection and disease [1–4]. While the national Canadian Tuberculosis Standards document provides general information regarding the management of TB outbreaks, it is not specific regarding the management of outbreaks in Indigenous communities [4,5].

In this paper we explore how the First Nations Cree Medicine Wheel can inform the approach to the management of TB outbreaks in Indigenous Cree communities. The Medicine Wheel is a design with a “hub and spoke” pattern, resembling a wheel. Physical structures consisting of ancient stones arranged in this pattern can be found on the western plains of North America [6]. The design reflects the balance and harmony that is at the heart of individual and collective well-being [7]. To the extent that some concepts embodied by the Medicine Wheel may be shared by other Indigenous communities nationally and in other countries, the ideas presented here may be of interest to Indigenous programs globally.

The authors of this paper are of Indigenous First Nations Cree (KM) and non-Indigenous (LL and PO) identity. There are variations of the Medicine Wheel between and among communities. The ideas developed here are part of a dialogue that takes as a starting point one version of a Cree Medicine Wheel (Figure 1) [7–9]. They reflect what we have learned from the teachings, gifts and traditions of First Nations Elders and communities, and from our own experiences as health workers, care givers, researchers, educators and advocates. Our aim is to explore concepts, and their application, emerging from this work. We do not speak on behalf of communities, groups or organisations.

Figure 1. Stylized representation of a Medicine Wheel [7–9].

The Medicine Wheel

Although the Medicine Wheel is not a paradigm used by all First Nations communities in Canada, the symbol of a circle representing the life cycle is ancient and universal. The number 4 refers in various contexts to four seasons, elements, directions, aspects of human nature (physical, mental, emotional, spiritual), winds, races, stages of life, gates and animal connections [7,8]. The presentation of a wheel, a circle, may change in terms of colours or form, depending on the community and region, but the underlying message of balance and harmony as the foundation of well-being is unchanged [10].

The Medicine Wheel represents the spiritual, physical, emotional and mental aspects of human beings, and our interconnectedness with the world around us [7–9]. The Figure and the accompanying description represent one form of the Medicine Wheel that is used in some Cree communities on the Canadian prairies [7–9].

The directions do not stand independently from each other, as each represents aspects of our inner selves, our environment, and our relationship to our environment. Its message is to seek balance and integration in these components of our inner and outer worlds. The wheel demonstrates a continuous, not a linear, process in achieving balance [8]. Although its application often starts in the eastern direction, which connects with sunrise, the directions inform each other; entry points may depend on the circumstances and issues to be addressed [8]. The Medicine Wheel should be visualised as lying horizontally on the ground, not vertically on a wall, as all directions are equal; one is not more elevated than another [8].

The Eastern Direction represents the spirit and awareness, and is the direction of the rising sun. It is associated with the spring season, and fosters the birth and nurturing of caring and healing relationships. This involves entering what Cree Elder Willie Ermine has described as an “ethical space” formed “when two societies, with disparate worldviews, are poised to engage each other”. [11] Knowledge is shared here. This is different from “education”. Pre-packaged plans are not imposed. The sharing of knowledge does not mean that one “way of seeing” dominates or replaces the other.

Resting in an ethical space allows movement to the Southern Direction which stands for the heart, emotional energy, values and attitudes. It is associated with the summer season when the sun is high in the sky. It is a place of kindness and generosity to others, and sensitivity to needs and feelings [7]. There is room for the recognition and expression of emotions, including hurtful ones resulting from the dark legacy of colonialism and oppression of Indigenous peoples in Canada [4,12]. The Southern Direction inspires Cree law which requires the treatment of others with kiitimahkinawow, the duty to care for elderly, poor, homeless and sick, and encompasses the need for compassion and subsequent action [13].

The opening of the heart fosters the development of goals and ideals. Summer transforms into autumn, the Western Direction, which stands for the body, physical energy, the realm of action that moves outwards to the community and environment. It is a time of vision of what it is to be fully human, and the embodiment of that vision in action [7].

Action must be analysed and reflected upon if we are to learn and grow to our full potential as individuals and communities. The Northern Direction stands for the mind, mental energy, wisdom, logic, strategy and decision making, and is associated with the winter season, a time to assess our actions and to transmit knowledge [8]. The mind is not superior to the other components of the Medicine Wheel, nor is it the end of a journey. The Northern Direction is part of an endless process of achieving balance and our full potential as humans.

The Medicine Wheel is used by individuals in their personal growth, but also by programs and organisations working in education, justice, health, social and political systems [7–10,13,14]. In terms of health care, there are opportunities to apply and learn from the application of the Medicine Wheel in the management of TB outbreaks in Indigenous communities in Canada and potentially elsewhere.

Tuberculosis outbreaks in First Nations communities in Canada

In 2018 the incidence of TB among First Nations people living in the western prairie provinces of Alberta, Saskatchewan and Manitoba was 8–49 times higher compared to the rate in non-indigenous people [1]. Periodic outbreaks occur due to reactivation of latent infection in a previously unidentified or untreated contact, or due to reintroduction of infection associated with migration [2,3]. However burden of TB disease is not homogeneous among First Nations peoples regionally within western Canada, nor nationally within Canada. Some rural and inner-city communities are more affected than others in the western provinces, and other Canadian First Nations such as the Cree of Eeyou Istchee in Quebec experience a low incidence of TB [2,15].

Health care for First Nations peoples living on reserves in Canada is provided by a patchwork of federal, provincial and territorial governments and in some cases by Indigenous organisations. Outbreak management usually involves sending non-Indigenous health care workers (HCWs) to communities, where the availability and skill of local workers is variable. Experience demonstrates that these efforts will only be successful if they are done through respectful relationships and partnerships [4]. Taking a western medical model of health care and “translating” it into the language and culture of First Nation communities, while failing to engage and respect First Nation knowledge and ways of being, is a disrespectful process of limited efficacy in terms of achieving measures of health that extend beyond the “counting of cases”.

In 2010 Chiefs Angus Toulouse and Joe Dantouze reported to the Canadian parliament on their experience of government failures in the management of epidemic and endemic TB in Canadian Indigenous communities [16]. They described a lack of consistency in how to define an outbreak, the need for local community Indigenous TB workers, the need for true partnership in planning and implementation activities, insufficient resources, poor or absent communication of health authorities with community leaders and members, lack of nationally implemented standards and performance targets that are applied and assured equally to Indigenous and non-Indigenous peoples, and inadequate availability and transparency of data required for programming and monitoring, and the need for accountability on the part of health authorities.

The themes of communication and relationship expressed to government by the Chiefs remain relevant today [4,16–18]. We cannot assess the effectiveness of TB outbreak management in many Indigenous communities because data are not made available to the communities themselves and to the general public [4,16–18]. We can only see that outbreaks continue to occur, that failures of contact investigation and therapy seed future outbreaks, and that communities express concern about processes, communication and accountability [1–4,16–20].

In a strategic framework and action plan developed at the Global Indigenous Stop TB Experts Meeting in Toronto in 2008, the importance of Indigenous self-determination within TB programs was emphasised [20]. The plan indicates that “Actions will be determined by indigenous people for indigenous people”., and that “Indigenous leadership will be engaged and equal partners … ” within programs [20]. Indigenous input and control over the collection and interpretation of TB data, and the translation of that data into the activities of prevention and care, provide the foundation for a program that is successful and just. 169

How the Medicine Wheel may inform the approach to TB outbreak management in Cree First Nations

Communities

Applying insight from the eastern direction: spiritual

In Canada there have been variable definitions of a TB outbreak over the past 2 decades. While previously based simply on the occurrence of more cases than expected over a given period of time, currently the national Canadian Tuberculosis Standards document uses a definition based on a certain number of linked cases [4,5]. However in communities that already have a very high incidence of disease, it may be difficult to determine whether an increase represents an outbreak or a “hyperendemic” variation, a decision that brings with it important implications for health services and the community [5].

First steps may draw on the eastern Direction through the establishment of relationship, which may start with a community invitation to health care workers (HCWs) to meet, rather than external HCWs entering communities without preparatory communications and invitation. Protocols of respect must be followed according to specific community traditions [10]. Investment in relationship building and cultural understanding is best done before the occurrence of a health care crisis.

This is a time when the nature and causes of disease and of health are discussed. It is not necessary for views and beliefs to be uniform or agreed upon within the ethical space. There is room for multiple cosmologies. A Manitoban Dene Elder once informed one author that the cause of TB in his community was the building of hydroelectric dams in the region, which profoundly altered the environment, creating disharmony, imbalance, spiritual and physical harm. This explanation reaches beyond the biomedical model of disease to encompass the resultant profound alteration in an ecosystem [21].

Applying insight from the southern direction: emotion

It is important to “hear” communities and individuals with the heart as well as the mind.

The legacy of tuberculosis in many Canadian First Nations communities is one of sadness, fear and anger due to the profound historical death toll and the acts of omission and commission on the part of successive governments and societal structures [12,22]. Many residential schools in Canada became deathtraps due to TB, malnutrition and injuries [12]. The burial of the dead children in unmarked graves, far from home communities, and the failures to notify families of deaths and burials, are sources of grief and anger.

When relationship is established in an ethical space, and when listening is generous, sensitive and caring, common goals can be achieved.

From a biomedical standpoint, the goals of TB outbreak management include the identification of those with active disease, treatment to cure, and the identification and appropriate treatment of latently infected contacts. In this way the chain of infection transmission with progression to disease is stopped. It is not uncommon for differences to emerge regarding how to approach and care for people who refuse medication, examinations or infection control procedures. For Cree people, well-being resides in the exercise of one’s free will within an identity that is both individual and rooted in community [7,8,10,11,21]. There is room within the ethical space to establish dialogue. Solutions may be found that balances Indigenous traditions and principles of justice with regional legislation (e.g. the Public Health Act), and with international guidelines such as the Patient’s Charter for Tuberculosis Care and the International Standards for Tuberculosis Care [4,14,23,24].

Applying insight from the western direction: physical

The western direction reminds us of the necessity to transform goals into action. However, effective action can only be achieved when adequate resources are provided. In his address to the Canadian parliament Chief Angus Toulouse cited data from the World Health Organization and the Public Health Agency of Canada showing a wide discrepancy between the amount of money Canada invests per Indigenous versus non-Indigenous case of TB [16]. Effective programs cost money, but they are not as expensive as the consequences of ineffective programs.

Outbreak management is best done by First Nations people themselves, supported by and in partnership with others [2,4,16–20,25]. Unfortunately it is often the case that community workers are hired during a crisis, then “terminated” when it is perceived to end [16,19]. This pattern does not promote investment in long term community knowledge, partnership and change.

The system of intermittent employment of community workers whose sole task is TB prevention and care also creates a “siloed” approach to health. Some First Nation communities in Canada have full time community health representatives (CHRs), who form a bridge between community members and the health and social system [26]. They are involved in many health promotion and sustaining activities including but not limited to maternal and child health, nutrition, mental and environmental health. However, not every Indigenous community has a CHR, and in those communities in which one is present there are many activities, including TB prevention and care, which are either not in the workers mandate or skill set, or cannot be “added on” to their current duties. Community health representatives are not just “another pair of hands” [27]. Despite a 2004 review describing the deficiencies of the Canadian CHR programs, there is still no national CHR training program nor a defined scope of wholistic and integrated practice in Indigenous communities [28].

Building capacity at the community level also involves exploring and innovating in terms of physical resources, following Cree traditions of openness to new learning, assessing and utilising “what works” [29]. Canada has been slow to adapt new technology where it is most needed – high incidence Indigenous communities [30]. Telehealth technology and Xpert-MTBC/RIF have recently become available in some Cree communities, but Interferon Gamma Release Assays (IGRA) for diagnosing tuberculosis infection, and digital radiography, are not generally available [31]. Why is new technology for the diagnosis and care of persons with TB more rapidly and widely studied and embraced in many low-income high TB incidence countries than in our high incidence Indigenous communities in high income Canada? [32]

Contact tracing must be adapted according to culture and circumstances. The classic “concentric circle” approach may not work well in communities in which the social and physical environment is such that all or almost all members can be considered one “family” [4,33,34]. It is important in the introductory phase of outbreak management to arrive at a common understanding of how community members interact, a form of social network analysis expressed in the language and culture of the community, and a common understanding of whether the contact investigation will centre around cases or will be community wide. In a contact investigation study in Alberta, Indigenous persons with TB identified more contacts than non-Indigenous persons [34]. Cultural values of sharing and familial closeness is part of the explanation, but the more overriding issue is one of crowded and poorly ventilated houses in both rural Indigenous “reserve” community and in the urban inner city.

Applying insight from the northern direction: mental

The Northern Direction of the Medicine Wheel turns to the mind in order to learn, strategize, and plan. In a western non-Indigenous framework this is similar to the quality improvement, assessment and analysis function that is seen as a requisite pillar of TB programs. But who defines what is meant by “effective”?

Transparency, in terms of timely available information, is required in order for programs to be accountable to the people they serve. Canada lags behind other countries in the world in its failure to comprehensively implement and report on standard national performance measures and targets [35]. Too often programs have been evaluated according to “output” (what was done) rather than “outcome” (what was actually achieved) [16,36].

Based on interviews with Cree and other First Nations informants in Manitoba, Rowe and Kirkpatrick noted that in the Cree language there is no single word for evaluation but there are terms for reflection and contemplation within a process of “taking stock and reflecting on previous experience in order to move forward” [37]. In cultural school programs Cree Elders emphasise the need for critical analysis of the world and for engagement in action based on this analysis [8]. Furthermore, the knowledge that comes from analysis and evaluation must be made available (transparency), result in accountability, and lead to change [36].

Cree cosmology calls for looking beyond the proximal causes of events, to larger and more fundamental causes [7,38]. If there is disharmony and imbalance, from whence does it come and what is the remedy? The identification and treatment of individuals within a community must be accompanied by identifying and treating the root causes of disruption in individual and collective well-being. The two strategies must be in tandem. Blaming the socioeconomic and political determinants of TB for failure to make headway on TB elimination, while failing to provide adequate clinical and public health care, is a form of fraud. The converse, providing adequate care while failing to advocate for the elimination of the determinants of TB, is also a course of action that lacks credibility and integrity; this latter situation is hypothetical at present as adequate care is not being provided in many TB affected Indigenous communities in Canada [4,16,19,20].

Unfortunately, the experience of many community members and those who work in TB care is that government and non-governmental agencies with responsibility for health, housing, economic development, education, justice and other jurisdictions not only do not work cooperatively, but often work at odds with each other, pointing fingers in a “game” of blame and evading responsibility [16]. That this need not be so is demonstrated in other countries, such as Peru, where social support for TB patients and their families is achieving some success through in inter-jurisdictional cooperation, integration of activities, and above all political will [39].

First Nations ways of “taking stock” and non-Indigenous methods of evaluation are not mutually exclusive within an “ethical space”. Non-Indigenous evaluation frameworks for TB programs are primarily quantitative, although there is an increasing call for qualitative measures looking at aspects of person-centred care such as the recognition and protection of human dignity [4,40]. Cree and other Indigenous groups in Canada have created culturally based frameworks and “tool-kits” to evaluate health programs and other systems [36,41–43].

In recent TB outbreaks in First Nations Canadian communities, particular concern has focused on several issues including who has access to data and the degree to which the programs are truly community based [16–18].

Some health authorities have been reluctant to release case number data to Indigenous communities, citing the need to protect the confidentiality of patients who may be at risk of identification [44]. The answer regarding how to balance the rights of the community and the rights of individuals will vary between communities and cultures. However, when discord occurs over this issue in the midst of a TB outbreak, the message upon which to reflect is the failure of relationship, dialogue and process originating from the initial meeting at what we have considered as the “Eastern Direction”.

In terms of using community-based methods in TB control in Indigenous communities, we can look to several examples including the “Taima TB” (translated from Inuktitut, the Inuit language, as “Stop TB”) project among the Inuit people living in the northern Canadian territory of Nunavut, which was a response to a high incidence of TB [24]. The project began with extensive community consultation and was conducted largely by community workers who met people in their homes. Community Workers were specially hired and trained. However, the Taima project was just that, a project limited in time and money. A pattern of surge TB outbreak response followed by withdrawal of adequate ongoing community programs and resources, only to encounter subsequent missed active cases, missed opportunities for treatment of latent infection, and subsequent reactivated disease is a pattern in Canadian Indigenous communities [2,3].

Conclusion

The four directions of the Medicine Wheel provide wisdom in our approach to TB outbreak management in Cree communities: the building of relationship within an ethical space, the processing of emotions and values in collective planning, implementation driven by community members and ensuring a culture-based process of transparency, accountability and change. In the accompanying text box, we provide an example of what the implementation of some of these principles at the policy and community levels might look like. The “Two Row Wampum” project in Northern Alberta and Saskatchewan was initiated in 2015 with the goal to repatriate TB data to First Nations communities and to share decision making within a relationship of equity and respect [17,18].

It is important not to homogenise First Nations teachings as if they all are the same among different Indigenous peoples. However, the perspective presented here may inform discussions in other communities regarding the relational work that is required when disparate worldviews meet.

Table

Text box. The Two Row Wampum Agreement for TB management

In response to community concerns, a process was initiated in 2015 leading to an agreement between health authorities and four high TB incidence Indigenous communities in the Canadian provinces of Saskatchewan and Alberta [17,18]. The goal was in to develop TB programs with, by and for the Indigenous people themselves. The protocols and processes that were developed abide by the Patient Charter for Tuberculosis Care, the United Nations Declaration on the Rights of Indigenous Peoples, and The Truth and Reconciliation Commission of Canada. The programs operate within an ethical space using a shared statement of values, consensus decision making, data transparency and standards of accountability. The program is inspired by the “Two Row Wampum Belt”, woven material made of shell beads created in 1613 to record a treaty agreement between the Haudenosaunee First Nations peoples and the Dutch newcomers to their land. It displays two rows of beading, representing “Indigenous and non-Indigenous peoples traveling side by side in harmony and health, with neither having jurisdiction over the other”[17].

Disclosure statement

No potential conflict of interest was reported by the author(s).