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Introducing Healthcare CARES: A relational model for HIV and hepatitis C healthcare

Concluding the peer story discussed in this series (parts 1, 2.1 and 2.2), this article introduces a practical approach for fostering authentic connection in healthcare. The intention is to guide on delivering healthcare equality and in turn historic trauma safe healthcare. 

Braiding Voices of reconciliation

This article is part of a series that aims to respond to the Truth and Reconciliation Commission’s Calls to Action and the Calls for Justice of the National Inquiry into Missing and Murdered Indigenous Women and Girls. The series shares learnings from the Peers4Wellnesss project.1 Peers4Wellness is an Indigenous- and peer-led community-based research study in British Columbia (B.C.) on the unceded territory of the Coast Salish peoples. The knowledge shared in the article was gathered during a needs assessment (2017–2021) with the Peers4Wellness community. The assessment explored the need for Indigenous-centred peer navigation programs in B.C. 

This article applies the methodology Braiding Voices, which is influenced by Indigenous storytelling.1–3 The primary storytellers are members of the Peers4Wellness community (referred to subsequently as the community). The first and senior authors are the story stewards. Using quotations, the story is written primarily in the first-person voices of the community and Indigenous scholars. The audience is invited to connect with and gain their own interpretation of the quotes. The unquoted text reflects the first and senior authors' learnings from the community and literature. Braiding Voices honours and privileges the ideas and expressions of the community and Indigenous people.

Story teachings

  1. In healthcare, peer refers to people with lived experience of HIV and/or hepatitis C. Because of their membership in the peer group, IWLE and peer navigators are (re)exposed to historic trauma in healthcare. 
  2. Historic trauma is propagated by the lack of healthcare equality. This is when members of the peer group (IWLE and peer navigators) are denied universal healthcare rights. 
  3. Authentic connection is an Indigenous way of being that can promote healthcare equality
  4. Authentic connection manifests as two-way relationships that are compassionate, respectful, collaborative, understanding and healing. We see authentic connection reflected in the principles of peer navigation practice. However, all care providers can foster authentic connection with care recipients (e.g., IWLE) and co-workers (e.g., peer navigators). To help them achieve that, the community introduced the Healthcare CARES model.
  5. Healthcare CARES is a relational model that draws on lived experience to establish authentic connection and in turn promote healthcare equality. Healthcare CARES asks care providers to draw on their lived experience of being family members, humans, community members, ethical people and helpers. The upshot is that healthcare is caring, accepting, reciprocating, empathizing and supporting. These relational standards are expressions of authentic connection and are protective of universal healthcare rights.
  6. People in healthcare assume an institutional identity. The community described this identity as “cold, a robot, bossy, snobbish and a pill.” These qualities reflect self-disconnectedness on multiple levels (emotional, spiritual, practical, mental and wholistic). This institutional identity is prescribed by colonial ways of being that enable people to violate universal healthcare rights and hence to perpetuate healthcare historic trauma. 
  7. In addition to prompting an authentic connection between people (social connectedness or interconnectedness), the Healthcare CARES model can facilitate self-connectedness. When people in healthcare lead with their lived experience, they lean out of their institutional identity. This balancing of identities can provide an additional layer of protection against violating healthcare equality.
  8. The implementation of the Healthcare CARES model needs to be Indigenous-led and community-centred. 
  9. Reconciliation calls for historic trauma safe healthcare. The first step is to honour universal healthcare rights. The next step is securing Indigenous-specific healthcare rights. The peer story (parts 2.1, 2.2 and 2.3 of this series) guides healthcare on taking this first step. 
  10. Seeking reconciliation, the peer story applied a non-interference approach. Instead of resorting to a disciplinary or moral approach, the community pursued healthcare system change by evoking reflexivity, a language of unity, authentic connection and agency. 

Preface: Reawakening the spirit of peer

Peer is the main character of the story. Peer echoes the voices of IWLE and peer navigators. Peer pursues healthcare equality. Peer seeks healthcare that is grounded in authentic connection. Peer nudges everyone in healthcare to lean into their lived experience. [1] Peer invites people in healthcare to relate and engage as family, humans, community, ethical people and helpers. Peer introduces Healthcare CARES, a relational model that is seeded in lived experience and rooted in authentic connection. Simultaneously, peer prompts healthcare to amend its traumatizing institutional identity. Peer guides healthcare’s first step toward being historic trauma safe. Practising non-interference, peer illuminates a path for healthcare to reconcile its relationships with IWLE and peer navigators.

“Lived experience is definitely the top of the crane”

As discussed in part 2.2 of this series, seeking healthcare equality, the community called for authentic connection in healthcare. Authentic connection is an Indigenous way of being wherein people bond on (an) innate level(s) (e.g., emotional, spiritual, mental, practical and/or wholistic) irrespective of their backgrounds.3 When people have an authentic connection, they intuitively relate to each other and engage as equals regardless of their health conditions and healthcare roles.3 

We see authentic connection reflected in the principles of peer navigation practice. These principles include compassion (emotional connection), mutual respect (spiritual connection), mutual understanding (mental connection), collaboration (practical connection) and healing (wholistic connection).4–10 If peer navigation can foster authentic connection, how can the rest of healthcare follow suit? 

“Lived experience is definitely the top of the crane,” answered one member of the community. Like peer navigators, other care providers have lived experience3 and should become skilled in drawing on it. This includes being family, humans, community, ethical people and helpers. These lived experiences are familiar to most people and are founded in authentic connection. The community explained. 

Family is “somebody who has your well-being first and foremost” irrespective of your circumstances. Being a family is to have mutual compassion (emotional connection).11–16 

Humans are “not just physical beings but spiritual beings.” Being human is to respect our sacredness (spiritual connection).13,17–19

Community is an essential part of life because everyone and “everything is interconnected.”13,20–23 Being community is to have collaboration (practical connection). 

Ethical people [2] are “open-minded and don’t have an axe to grind. They just want to go and listen and learn.” Being ethical people is to seek mutual understanding (mental connection).24

Helpers respond to “I need help” by attending to “your physical, your cultural, your emotional, spiritual needs.” Being a helper is to assume a role that “is very important, not only to other people, but to myself, for healing” (i.e., wholistic connection). 

Which of those lived experiences do you have? Do you see how lived experience can unite instead of segregate peer and other groups in healthcare? Do you see “how we all connect,” to paraphrase a member? Can you envision profession-based care providers embracing their lived experience and establishing an authentic connection with care recipients (e.g., IWLE) and co-workers (e.g., peer navigators)? Can you envision how we can all stand as equals because of this connection? If you answered Yes, why not lean into these lived experiences? 

The community paved a practical way. 

Healthcare CARES

Healthcare CARES is a relational model that draws on lived experience to establish an authentic connection and in turn promote healthcare equality. Healthcare CARES stands for caring, accepting, reciprocating, empathizing and supporting. These relational qualities are expressions of authentic connection, which unfold when care providers tap into their lived experiences (e.g., being family, humans, community, ethical people and helpers). This way of being is protective of universal healthcare rights including equality of treatment, equality of dignity, equality of opportunity, equality of interaction and equality of outcomes (see part 2.2 of this series for definitions).2,3,25–29 The community explained.

Caring is to engage with compassion like a family. It is “putting your heart into your job” and to “treat our women [and peer navigators] the way you would treat your family.” This emotional connection should protect IWLE and peer navigators from experiencing healthcare as a biased “revolving door [where] they just want to get rid of you as fast as they can.”30–34 Caring healthcare protects equality of treatment, wherein everyone can have impartial access to health and occupational services.2 

Accepting is to engage with each other with respect like humans. It is about “finding, seeing and accepting the goodness” of the spirit, paraphrasing Michael Hart,13,17–19 (p. 47). This entails people in healthcare engaging as “a human being first and then you have your skills and the tools.” The spiritual connection should protect IWLE and peer navigators from “getting sand in our faces” and “not [being] treated with respect” in healthcare. Accepting healthcare protects equality of dignity, wherein everyone’s innate worth is revered. 

Reciprocating is to be collaborative like a community. “You are part of a team, and…each person’s role in that team is important.”13,20–23 This requires that “we bring these people into a community.” This practical connection should ensure that “the healthcare system can get to a point where it works relationally and in a more community-based way so that everyone involved in the system from the doctors to the patient can feel supported and a part of a stronger system.”11,13,20–23,35,36 Reciprocating healthcare protects equality of opportunity, wherein everyone (i.e., all care recipients and all care providers) can participate as active partners in healthcare.2

Empathizing is to seek mutual understanding like ethical people. It is to have a mindset that enables you to “walk a mile in our shoes” and us in yours.24,37,38 Empathizing entails creating an Ethical Space, where everyone “can speak out and know that they’ll be valued.”24 The mental connection ensures that “people can learn from each other.”4–10 Empathizing healthcare protects equality of interaction, wherein knowledge flows freely between care recipients, professional care providers and lay care providers.2

Supporting is to engage like helpers. It’s to create a healing environment by being attuned and responsive to people’s whole needs (i.e. emotional, spiritual, mental and practical) by ensuring “that everything that I need is in place, before [you] let me walk out the door.” It is to “help [people] get the kind of help that they need.”13 This wholistic connection should protect IWLE and peer navigators from experiencing that “you are the only one who can help me at this point, and they choose not to.” Otherwise, the sense of abandonment by healthcare can do harm and in turn undermine healing.39,40 A reason is that “it is a reminder of a teacher who was short” and negligent at residential school. Supporting healthcare protects equality of outcome, wherein healthcare promotes healing because it is responsive to the care and work priorities of people.2  

Instead of marginalizing lived experience, the Healthcare CARES model centres it. The ask is that care providers (e.g., medical providers, peer navigators) and care recipients (e.g., IWLE) engage as family, humans, community, ethical people and helpers. The primary intention is to foster an authentic connection. Further, as the community explained in the next section, the Healthcare CARES model can prompt care providers to balance their institutional identity. This shift can serve as an additional step toward healthcare equality and historic trauma safe care. 

Balancing healthcare’s institutional identity 

People in healthcare can be subsumed into an institutional identity.41 The community described this identity as uncompassionate, disrespectful, uncollaborative, non-understanding and anti-healing. 

These qualities reflect how care providers may be expected to leave at the door parts of their selves (emotional, spiritual, practical, mental and wholistic). The self-disconnectedness is prescribed by the requirements of professionalism, materialism, paternalism, egotism and medicalization.13,42–48 These requirements of are the products of “many different colonial beliefs that stopped that connection to inner healing in self,” said a member. This “leaves you feeling empty when you don’t know how to connect” to yourself, said a member. The emptiness conditions people to violate healthcare equality and hence it perpetuates historic trauma in healthcare. To explain, the community imagined healthcare as a person and described them as…

…“cold.” 

For example, “these professionals…they do not have any compassion.” Professionalism entails that care providers maintain an emotional distance from care recipients and co-workers.13,42,43 This is a manifestation of how “colonialism separated our hearts and minds.”11,12,17 The disconnection of the emotional dimension of oneself can leave “professionals” vulnerable to bias (e.g., HIV and hepatitis C stigma) and in turn enable the violation of equality of treatment. [3]2 For example, “my doctor…has no compassion in her work anymore.” This can explain why, as an IWLE, “I was completely treated different than” everyone else in healthcare.11,12,17

…“ a robot. ” 

Healthcare is “about production and performance.” Therefore, care providers “could be anything as a human being” even if it meant being disrespectful to IWLE and peer navigators.47–51 Because of coloniality, “we have been incorporated into the monetized economy. And suddenly this bison that was a spiritual thing now has a value: $350 for the skin.” As a result, healthcare can be materialistic rather than humane.47–50 Accordingly, people seeking care for behaviourally preventable health conditions (e.g., HIV and hepatitis C) can be seen as wasters of tax dollars rather than human beings.50,52,53 Accordingly, people seeking care for HIV and hepatitis C are “not treated with respect.” A reason is that materialistic healthcare justifies microaggression as a disciplinary action against economic waste.50,52,53 Therefore, healthcare absolves itself from delivering equality of dignity.2

…“bossy.” 

Healthcare can be paternalistic, hence, uncollaborative.11,54–56 It ignores that IWLE and peer navigators “are the experts of what we need.” Therefore, “we have to rely solely [or heavily] on doctors” and other professionals. This is an impractical disconnection, which is rooted in a history of colonial paternalism.11,54–56 “All of my relatives going back for generations were helpless children at one time with no power.” Paternalism continues in healthcare. For example, as put by a member of the community, “nobody has that voice” that is promised in “Nothing About Us Without Us.” Even “Elders in supporting roles in the [Downtown Eastside of Vancouver] often have difficulties with receiving regulated payments that are consistent.” Therefore, “they have no choices” to fully participate in healthcare. This is a violation of equality of opportunity.2 

 …“snobbish.”

Healthcare can be egotistic instead of seeking mutual understanding. For example, “a lot of doctors…they’ll come out, and they’ll gobble-de-gook you and walk out of the room. And you go, what was that about?” At the same time, “doctors, they don’t know our bodies like Aboriginal way.” Because “they have this pride and ego” in healthcare, “the communication lines aren’t open” to bridge this knowledge gap.57–60 Egotism in healthcare is an extension of the colonial “we know best mentality” adapted from Eva Jewell and Ian Mosby (p. 12).61 This mental disconnection (i.e., closed-mindedness) makes healthcare “really clinical” in its interactions. Therefore, healthcare communications proceed in one direction from “professionals” to care recipients (e.g., IWLE) and lay care providers (e.g., peer navigators). This can undermine equality of interaction.2

… “a pill.” 

Healthcare is medicalized (i.e., non-wholistic), hence, anti-healing.1,47,62 IWLE and peer navigators expect healthcare to provide “them [with] what they actually need, in order to be the best they can be.”47 Instead, IWLE and peer navigators experience healthcare as “here. Take a pill.”47 In healthcare, “they treat the sickness and not the disease; the disease is dis-ease you know? You’re not happy.”47,62 Consequently, “the colonial [healthcare] systems are not helpful for our health.” Medicalization is like a tunnel vision; it restricts healthcare from being wholistic when caring for people.47,62 The disconnection can prevent healing. Even if medically appropriate, if a person experiences that “the doctor did not help” them, it can mean that they “just wouldn’t want to be trusting him.” This mistrust “can trigger them with their complex trauma.”1,41,62–68 This can undermine equality of outcome.3 

Healthcare’s institutional identity can enable violations of universal healthcare rights. Leaning into their lived experience, care providers can seamlessly balance this institutional identity and deliver healthcare equality.

Dear healthcare,

You’re disconnected and not using some of our beautiful holy medicines and ways of being,” said a member. We are asking you to adopt and adapt the Healthcare CARES model. 

Healthcare CARES fosters connection not only among people but also with oneself. Therefore, “we move to centre. So, it’s all-encompassing mental, emotional, physical” and spiritual relations, lent [4] a member. We embody all these relations. “The connection to outside ourselves” is also a connection to inside ourselves, lent another member. When healthcare centres on lived experience, care providers bring their whole selves (as family members, humans, community, ethical people and helpers) into a healthcare relationship. Instead of leading with their institutional identity, care providersembrace the Indigenous approach to health and wellness; the whole person,” said a member. They exercise their agency and unchain from institutional norms.69 The resulting social- and self-connectedness can, as the community demonstrated and as shown in parts 2.1 and 2.2 of this series, prevent the violation of healthcare equality and the perpetuation of historic trauma.2,3When Healthcare CARES, we journey toward reconciling relations with IWLE, peer navigators and ourselves. 

The point is that everyone has lived experience. However, healthcare training includes distancing lived experience. Healthcare CARES emphasizes that care providers need to recognize the importance of lived experience in creating social connectedness (interconnectedness between healthcare, IWLE and peer navigates) and self-connectedness (inner-connectedness with oneself). 

Toward historic trauma safe healthcare

As explained in part 2.2 of this series, reconciliation calls for historic trauma safe healthcare.1,2 This entails healthcare equality.1

The reconciliation journey is two-phased. As a first step, “just get back to basics and then build from there,” lent a member. The basics are to honour the political identities of IWLE and peer navigators as equal citizens by ensuring that they can enjoy universal healthcare rights.3,27–30,70–72 The next step for healthcare is to uphold Indigenous-specific rights. [5] These rights are grounded in Indigenous-specific relational equality, which “comes down to the Guswenta,” lent a member. In Canada, Guswenta (or the Tawagonshi Agreement of 1613) symbolizes the equal political standing of Indigenous and non-Indigenous people. This equality is ratified by the Treaties and honoured by the Constitution Act in of 1867 (Section 35). 

Applied to healthcare, Indigenous-specific relational equality dictates honouring the Nation–Nation standing of IWLE and Indigenous peer navigators in Canada by securing their Indigenous-specific healthcare rights. These rights are embedded in the United Nations Declaration of the Rights of Indigenous People (Article 24. 1, Article 24. 2), the Calls to Action (Calls 18-24) and the Calls for Justice. On a provincial level, these rights are also specified by the Declaration on the Rights of Indigenous Peoples Act in B.C. (Declaration Act) and the Declaration of Commitment to Cultural Safety and Humility in Health Services Delivery for First Nations and Aboriginal People in British Columbia. 

This story (parts 2.1–2.3 of this series) aims to guide healthcare on taking a primary step toward historic trauma safe healthcare and reconciling its relationship with Indigenous communities, [6] namely IWLE and peer navigators. 

Questing for non-interference change 

Responding to the calls for reconciliation, the community is questing for healthcare system change.1,2 To guide change, this story (parts 2.1-2.3 of this series) contributed the following: 

1) exposed the coloniality of being as a root cause of historic trauma in healthcare2,3 

2) invoked the Indigeneity of being as a seed for historic trauma safe care2,3

3) revealed that the coloniality of being is embedded in how healthcare defines, speaks about and relates to peers (members of the peer group) 2,3

4)  partook in decolonizing and Indigenizing healthcare’s language and relationships around peers, which involved introducing the Healthcare CARES model2

The community’s approach to system change is one of non-interference.15,73 This is different from the “Don’t speak that language. Don’t do this. Don’t do that” approach, lent a member. It also avoids harping on egalitarian virtues, which are upheld by public policy but neglected by healthcare.2,3 Instead, the community evoked reflexivity, a language of unity, authentic connection and agency.2,3 “Nobody learns from discipline; people learn from being part of a circle,” said a member. Questing for system change, the community guided everyone in healthcare to a circle.2,3,15,74,75 This circle invites social-connectedness and self-connectedness.2,3,15,72–75 Here…

Peer names all of us or none of us.2 We reclaim peer equality. “You belong here just because you are here and for no other reason,” borrowing from Michael Hart (p. 79 and p. 93).15 Everyone stands as equal in status and human rights.2 We honour lived experience. We come together as family, humans, community, ethical people and helpers. We don’t separate people. We foster authentic connection (compassion, respect, understanding, collaboration and healing). We embrace our whole selves and transcend our institutionalized identities.2,3Everyone’s healthcare rights are upheld.3 This circle is a non-traumatizing space.36,76 

To apply teachings from the peer story, “there’s no one size fits all,” said a member. Healthcare can work alongside Indigenous people to recuperate the peer identity, update healthcare’s language and implement Healthcare CARES.2 

Definitions 

Reconciliation, decolonization, Indigenization1,2,77,78: Reconciliation can be defined as a process of balancing relationships between Indigenous communities and systems of settler colonialism. A primary goal of reconciliation is to mend and end the harms inflicted by colonialism.78 Reconciliation requires systemic change. The roadmap is outlined by the Calls to Action and the Calls for Justice. The work of reconciliation involves decolonization (i.e., de-constructing colonialism) and Indigenization (i.e., de-oppressing Indigenous systems toward Nation–Nation(s) relationships). 

Healthcare79: An institution aimed at improving or maintaining health. The scope of healthcare is policy driven and dependent on the definition of health. The functions of healthcare fall anywhere on a continuum from public health to medical care.

Universal healthcare rights2,25–30Basic standards of care and work that all Canadians are entitled to enjoy. To honour these rights, healthcare must deliver on two fronts. First, it must uphold relational equality. Second, it must act accordingly by guaranteeing equality of treatment, equality of dignity, equality of opportunity, equality of interaction and equality of outcomes. Universal healthcare rights fall under human rights. Some of the instituting policies include the United Nations Universal Declaration of Human Rights (UNDHR) (Article 1, Article 23, Article 25), the Canada Health Act and B.C.’s Human Rights Code (Section 8). 

Healthcare equality27,28: A way of being (relational equality) and doing (distributive equality) that is protective of universal healthcare rights. Relational equality is the principle that people have the same societal status (moral, political and/or social value) and hence the same human rights. Distributive equality is the enactment of the latter principle; it is achieved when everyone can enjoy their rights. 

Authentic connection2,3,14A concept adapted from the work of Linda Linklater. Authentic connection refers to a relational common ground, where people relate as equals irrespective of sameness or difference in health conditions and healthcare roles. 

Peer navigation1: Health navigation that is provided by peer workers. Health navigation involves supporting care recipients to overcome barriers to healthcare. Peer workers are caregivers whose leading qualification is having lived and living experiences that are like those of care recipients. 

Ethical space25: A theoretical space between cultures and worldviews that allows for respectful relations and dialogue as equal members.

Healing80: Health practices, approaches, knowledge and beliefs incorporating Indigenous healing and wellness that incorporate ceremonies or traditional medicines. 

Wellness80: A concept that includes physical, social, emotional, cultural and spiritual well-being, for both the individual and the community. A system of knowledge that utilizes standardized processes, measurements and methods to identify general trends, themes and laws about phenomena in the world. 

Coloniality of being3,81:  A mentality that involves beliefs and attitudes that separate people on the basis of “race,” class or gender. This mentality manifests in an unequal relation, where select people are singled out as being unworthy and undeserving of human rights.

Indigeneity of being3,13,15,82,83: A way of being that involves beliefs, attitudes and relationships that reflect the kinship, wholeness and relationality of Indigenous worldviews. The Indigeneity of being fosters a non-traumatizing social environment, where everyone’s universal healthcare rights are protected and secured. 

References 

  1. Fayed S, Peers4Wellness Community, King A. Truths and Reconciliation: Peer navigation in Indigenous contexts - Part 1 (Truths)Navigating historic trauma in HIV and hepatitis C healthcare [Internet]. Toronto, ON: CATIE; 2023 Feb [cited 2023 Feb 10]. Available from: https://www.catie.ca/prevention-in-focus/truths-and-reconciliation-peer-navigation-in-indigenous-contexts-part-1-truths
  2. Fayed S, Peers4Wellness Community, King A. Truths and reconciliation- Part 2.2 (Reconciliation). Reawakening the spirit of Peer. Promoting reconciliation in HIV and hepatitis C healthcare Through Paradigm Shifts Reflected in New Language. In Toronto, ON: CATIE; 2024 Aug. Available from: https://www.catie.ca/prevention-in-focus/truths-and-reconciliation-peer-navigation-in-indigenous-contexts-part-22
  3. Fayed S, Peers4Wellness Community, King A. Truths and reconciliation- Part 2.1 (Reconciliation): Poisoning the spirit of peer. Questing for system change in HIV and hepatitis C healthcare. In Toronto, ON: CATIE; 2024 Aug. Available from: https://www.catie.ca/prevention-in-focus/truths-and-reconciliation-peer-navigation-in-indigenous-contexts-part-21
  4. Xiiem J ann AQQ, Lee-Morgan JBJ, Santolo JD. Decolonizing Research: Indigenous Storywork as Methodology. Bloomsbury Publishing; 2019. 372 p. 
  5. Archibald JA. Indigenous Storywork: Educating the Heart, Mind, Body, and Spirit. First Printing edition. Vancouver: UBC Press; 2008. 192 p. 
  6. Penney D. Defining “ Peer Support ” : Implications for Policy , Practice , and Research. Advocates for Human Potential, Inc. 2018;1–11. 
  7. Dennis CL. Peer support within a health care context: a concept analysis. International journal of nursing studies. 2003;40(3):321–32. 
  8. Mead S, Hilton D, Curtis L. Peer Support: A Theoretical Perspective. Psychiatric rehabilitation journal. 2001 Feb 1;25:134–41. 
  9. Øgård-Repål A, Berg RC, Fossum M. A Scoping Review of the Empirical Literature on Peer Support for People Living with HIV. J Int Assoc Provid AIDS Care. 2021 Jan 1;20:23259582211066401. 
  10. Blanch A, Filson B, Penney D. Engaging Women in Trauma-Informed  Peer Support: A Guidebook [Internet]. National Center for Traum-Infomed Care; 2012 [cited 2021 Dec 9]. 96 p. Available from: https://www.nasmhpd.org/sites/default/files/PeerEngagementGuide_Color_REVISED_10_2012.pdf
  11. Broeckaert L. Practice guidelines in peer health navigation for people living with HIV [Internet]. CATIE; 2018 [cited 2022 Jan 6]. 156 p. Available from: http://epe.lac-bac.gc.ca/100/200/300/catie/practice_guidelines-e/practice-guidelines-peer-nav-en-02082018.pdf
  12. Øgård-Repål A, Berg RC, Fossum M. Peer Support for People Living With HIV: A Scoping Review. Health Promotion Practice. 2023 Jan 1;24(1):172–90. 
  13. Campbell E, Austin A, Bax-Campbell M, Ariss E, Auton S, Carkner E, et al. Indigenous Relationality and Kinship and the Professionalization of a Health Workforce. Turtle Island Journal of Indigenous Health. 2020 Oct 12;1:8–13. 
  14. Linklater R. Decolonizing trauma work: Indigenous stories and strategies. Fernwood Publishing; 2014. 
  15. Hart M. Seeking Mino-Pimatisiwin: An Aboriginal Approach to Helping. Fernwood Publishing; 2020. 127 p. 
  16. Tam BY, Findlay LC, Kohen DE. Indigenous families: Who do you call family? Journal of Family Studies. 2017;23:243–59. 
  17. Kerasidou A, Horn R. Making space for empathy: supporting doctors in the emotional labour of clinical care. BMC Med Ethics. 2016 Jan 27;17:8. 
  18. Kozlowski D, Hutchinson M, Hurley J, Rowley J, Sutherland J. The role of emotion in clinical decision making: an integrative literature review. BMC Med Educ. 2017 Dec 15;17:255. 
  19. Pijnenburg M. Humane healthcare as a theme for social ethics. Med Health Care Philos. 2002;5(3):245–52. 
  20. Kumar MP. (An)other Way of Being Human: ‘indigenous’ alternative(s) to postcolonial humanism. Third World Quarterly. 2011 Oct 1;32(9):1557–72. 
  21. Thibault GE. Humanism in Medicine: What Does It Mean and Why Is It More Important Than Ever? Acad Med. 2019 Aug;94(8):1074–7. 
  22. MacQueen KM, McLellan E, Metzger DS, Kegeles S, Strauss RP, Scotti R, et al. What Is Community? An Evidence-Based Definition for Participatory Public Health. Am J Public Health. 2001 Dec;91(12):1929–38. 
  23. Poonwassie A, Charter A. Aboriginal worldview of healing: Inclusion, blending, and bridging. In: Integrating Traditional Healing Practices into Counseling and Psychotherapy. Sage Publications Ltd.; 2005. p. 15–25. 
  24. Waldram JB, Aboriginal Healing Foundation (Canada) NN for AMHR. Aboriginal healing in Canada studies in therapeutic meaning and practice [Internet]. Ottawa, Ont.: Aboriginal Healing Foundation; 2008 p. 279. Available from: https://www.ahf.ca/files/aboriginal-healing-in-canada.pdf 
  25. Ermine W. The Ethical Space of Engagement. Indigenous Law Journal. 2007;6(1). 
  26. Hajdin M, editor. The Notion of Equality. London: Routledge; 2017. 544 p. 
  27. Joyce KE. Relational Equality: A Conceptual and Normative Analysis [Internet]. UC San Diego; 2020 [cited 2023 Aug 18]. Available from: https://escholarship.org/uc/item/2x58v87x
  28. Schemmel C. Distributive and relational equality. Politics, Philosophy & Economics. 2012 May 1;11(2):123–48. 
  29. Voigt K, Wester G. Relational equality and health. Social Philosophy and Policy. 2015 Mar 1;31:204–29. 
  30. Sangiuliano AR. Substantive Equality As Equal Recognition: A New Theory of Section 15 of the Charter. Osgoode Hall Law Journal. 2015;52(2):601. 
  31. Hawe P, Shiell A. Social capital and health promotion: a review. Soc Sci Med. 2000 Sep;51(6):871–85. 
  32. Tang SY, Browne AJ, Mussell B, Smye VL, Rodney P. ‘Underclassism’ and access to healthcare in urban centres. Sociology of Health & Illness. 2015;37(5):698–714. 
  33. Gopal DP, Chetty U, O’Donnell P, Gajria C, Blackadder-Weinstein J. Implicit bias in healthcare: clinical practice, research and decision making. Future Healthc J. 2021 Mar;8(1):40–8. 
  34. FitzGerald C, Hurst S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics. 2017 Mar 1;18:19. 
  35. Vela MB, Erondu AI, Smith NA, Peek ME, Woodruff JN, Chin MH. Eliminating Explicit and Implicit Biases in Health Care: Evidence and Research Needs. Annual Review of Public Health. 2022;43(1):477–501. 
  36. Jinkerson-Brass S. Creating Oneness—Ceremonial Research. Journal of the Association of Nurses in AIDS Care. 2022 Dec;33(6):646–56. 
  37. The cooperative human. Nat Hum Behav. 2018 Jul;2(7):427–8. 
  38. Nickerson RS, Butler SF, Carlin M. Empathy and knowledge projection. In: The social neuroscience of empathy. Cambridge, MA, US: Boston Review; 2009. p. 43–56. (Social neuroscience). 
  39. Campelia GD. Empathic Knowledge: The Import of Empathy’s Social Epistemology. Social Epistemology. 2017 Nov 2;31(6):530–44. 
  40. Fayed S, King A. CATIE Blog. 2019 [cited 2022 Feb 19]. In the eyes of Indigenous people: The link between colonialism and hepatitis C, and the need for historic trauma-informed care. Available from: https://blog.catie.ca/2019/04/15/in-the-eyes-of-indigenous-people-the-link-between-colonialism-and-hepatitis-c-and-the-need-for-historic-trauma-informed-care/
  41. Fayed ST, King A, King M, Macklin C, Demeria J, Rabbitskin N, et al. In the eyes of Indigenous people in Canada: exposing the underlying colonial etiology of hepatitis C and the imperative for trauma-informed care. CanLivJ. 2018 Oct;1(3):115–29. 
  42. Benwell B, Stokoe E, editors. Institutional Identities. In: Discourse and Identity [Internet]. Edinburgh University Press; 2006 [cited 2023 Nov 1]. p. 87–128. Available from: https://www.cambridge.org/core/books/discourse-and-identity/institutional-identities/CDE99F249AC099FF12560991435DD1C7
  43. Kipping M, Bühlmann F, David T. Professionalization through symbolic and social capital: Evidence from the careers of elite consultants. Journal of Professions and Organization. 2019 Oct 24;6. 
  44. Schinkel W, Noordegraaf M. Professionalism as Symbolic Capital: Materials for a Bourdieusian Theory of Professionalism. Comparative Sociology. 2011 Jan 1;10:67–96. 
  45. Sarikhani Y, Shojaei P, Rafiee M, Delavari S. Analyzing the interaction of main components of hidden curriculum in medical education using interpretive structural modeling method. BMC Medical Education. 2020 Jun 1;20(1):176. 
  46. Michalec B. The pursuit of medical knowledge and the potential consequences of the hidden curriculum. Health. 2012;16(3):267–81. 
  47. D C, N N. The Hidden Curriculum and Integrating Cure- and Care-Based Approaches to Medicine. HEC forum : an interdisciplinary journal on hospitals’ ethical and legal issues [Internet]. 2022 Mar [cited 2023 Sep 12];34(1). Available from: https://pubmed.ncbi.nlm.nih.gov/32816176/
  48. Sharma M, Pinto AD, Kumagai AK. Teaching the Social Determinants of Health: A Path to Equity or a Road to Nowhere? Acad Med. 2018 Jan;93(1):25–30. 
  49. Silveira GL, Campos LKS, Schweller M, Turato ER, Helmich E, de Carvalho-Filho MA. “Speed up”! The Influences of the Hidden Curriculum on the Professional Identity Development of Medical Students. Health Professions Education. 2019 Sep 1;5(3):198–209. 
  50. Hafferty FW, Franks R. The hidden curriculum, ethics teaching, and the structure of medical education. Acad Med. 1994 Nov;69(11):861–71. 
  51. Firmin RL, Mao S, Bellamy CD, Davidson L. Peer Support Specialists’ Experiences of Microaggressions. Psychol Serv. 2019 Aug;16(3):456–62. 
  52. Bradley P, Falk-Rafael A. Instrumental care and human-centered caring: rhetoric and lived reality. ANS Adv Nurs Sci. 2011;34(4):297–314. 
  53. Crawford R. Healthism and the medicalization of everyday life. Int J Health Serv. 1980;10(3):365–88. 
  54. Tang SY, Browne AJ, Mussell B, Smye VL, Rodney P. ‘Underclassism’ and access to healthcare in urban centres. Sociology of Health & Illness. 2015;37(5):698–714. 
  55. Greenwood M, de Leeuw S, Linsay NM, Reading C. Determinants of Indigenous Peoples’ Health in Canada: Beyond the Social. Second. Toronto: Canadian Scholars’ Press Inc.; 410 p. 
  56. Lavoie J. Medicare and the care of First Nations, Métis and Inuit. Health Economics, Policy and Law. 2018 Feb 1;13:1–19.
  57. Allen L, Hatala A, Ijaz S, Courchene ED, Bushie EB. Indigenous-led health care partnerships in Canada. CMAJ. 2020 Mar 2;192(9):E208–16. 
  58. Matthews R. The cultural erosion of Indigenous people in health care. CMAJ. 2017 Jan 16;189(2):E78–9. 
  59. Naidu T. Says who? Northern ventriloquism, or epistemic disobedience in global health scholarship. The Lancet Global Health. 2021 Sep 1;9(9):e1332–5. 
  60. Piñeros Glasscock JS. Authoritative Knowledge. Erkenn. 2022 Oct 1;87(5):2475–502. 
  61. Schwab A. Epistemic humility and medical practice: translating epistemic categories into ethical obligations. J Med Philos. 2012 Feb;37(1):28–48. 
  62. Conrad P, Bergey M. Medicalization: Sociological and Anthropological Perspectives. International Encyclopedia of the Social & Behavioral Sciences. 2015 Dec 31; 
  63. Papps E, Ramsden I. Cultural Safety in Nursing: the New Zealand Experience. International Journal for Quality in Health Care. 1996 Jan 1;8(5):491–7. 
  64. Les Whitbeck B, Chen X, Hoyt DR, Adams GW. Discrimination, historical loss and enculturation: culturally specific risk and resiliency factors for alcohol abuse among American Indians. J Stud Alcohol. 2004 Jul;65(4):409–18. 
  65. Whitbeck LB, Adams GW, Hoyt DR, Chen X. Conceptualizing and measuring historical trauma among American Indian people. Am J Community Psychol. 2004 Jun;33(3–4):119–30. 
  66. Patient safety [Internet]. [cited 2023 Sep 18]. Available from: https://www.who.int/news-room/fact-sheets/detail/patient-safety
  67. Luxford K. ‘First, do no harm’: shifting the paradigm towards a culture of health. Patient Experience Journal. 2016 Nov 3;3(2):5–8. 
  68. Brascoupé S, Waters C. Cultural Safety:Exploring the Applicability of the Concept of Cultural Safety to Aboriginal Health and Community Wellness. Journal of Aboriginal Health. 2009;National Aboriginal Health Organization:36. 
  69. Archer MS. Realist Social Theory: The Morphogenetic Approach. Cambridge ; New York: Cambridge University Press; 1995. 368 p. 
  70. OHCHR [Internet]. [cited 2023 Sep 20]. OHCHR and the right to health. Available from: https://www.ohchr.org/en/health
  71. Ridgeway CL. Why Status Matters for Inequality. SAGE PublicationsSage CA: Los Angeles, CA; 2013. 
  72. OHCHR [Internet]. [cited 2023 Sep 20]. ​​Economic, social and cultural rights. Available from: https://www.ohchr.org/en/human-rights/economic-social-cultural-rights
  73. Wark J, Neckoway R, Brownlee K. Interpreting a cultural value: An examination of the Indigenous concept of non-interference in North America. International Social Work. 2017 Sep 15;62:002087281773114. 
  74. Absolon KE. Kaandossiwin: How We Come to Know. Fernwood Pub.; 2011. 175 p. 
  75. Wilson S. Research is ceremony: Indigenous research methods. Fernwood Publishing; 2008. 144 p. 
  76. Lavallée LF. Practical Application of an Indigenous Research Framework and Two Qualitative Indigenous Research Methods: Sharing Circles and Anishnaabe Symbol-Based Reflection. International Journal of Qualitative Methods. 2009 Mar 1;8(1):21–40. 
  77. Sasakamoose J, Bellegarde T, Sutherland W, Pete S, McKay-McNabb K. Miýo-pimātisiwin Developing Indigenous Cultural Responsiveness Theory (ICRT): Improving Indigenous Health and Well-Being. International Indigenous Policy Journal. 2017 Oct 12;8. 
  78. Antoine A na hi, Mason R, Mason R, Palahicky S, France CR de. Pulling Together: A Guide for Curriculum Developers [Internet]. BCcampus; 2018 [cited 2023 Nov 3]. 112 p. Available from: https://opentextbc.ca/indigenizationcurriculumdevelopers/
  79. Deber R. Treating health care: how the canadian system works and how it could work better. Toronto, ON: University of Toronto Press; 2017. 194 p. 
  80. King M, King A, Gracey M. Indigenous Health Part 2: The Underlying Causes of the Health Gap. Lancet. 2009 Aug 1;374:76–85. 
  81. Maldonado-Torres N. On the Coloniality of Being. Cultural Studies. 2007 Mar 1;21(2–3):240–70. 
  82. Campbell L. Indigeneity, Indigenous feminisms and Indigenization. In: Indigenous Women’s Voices : 20 Years on from Linda Tuhiwai Smith’s Decolonizing Methodologies [Internet]. Boston, USA: Zed Books; 2022 [cited 2024 Feb 20]. p. 123–36. Available from: http://dx.doi.org/10.5040/9781350237506.ch-007
  83. Country B, Wright S, Suchet-Pearson S, Lloyd K, Burarrwanga L, Ganambarr R, et al. Co-becoming Bawaka: Towards a relational understanding of place/space. Progress in Human Geography. 2016 Aug 1;40(4):455–75.

About the Authors 

Sadeem Fayed 

My name is Sadeem Fayed. I am a woman and a newcomer to the traditional lands of the Indigenous people in Canada. I live on the unceded Coast Salish territory in Vancouver, British Columbia. I work with Pewaseskwan (the Indigenous Wellness Research Group). I am also a PhD student in the Faculty of Health Sciences, Simon Fraser University. I have been learning and working in the field of Indigenous health and wellness research since 2017. My focus is the Peers4Wellness project, where I position myself as an invited outsider to the community. My work with Peers4Wellness has been guided by the mentorship of Dr. Alexandra King and Prof. Malcolm King. I also have been practising research with Dr. Sharon Jinkerson-Brass, Candice Norris and Nicole Smith who are my Indigenous research partners — we call ourselves the Clan. As a first author, I bear the trust of the Kings, the Clan and the rest of the Peers4Wellness community. I take this responsibility seriously and courageously. Being in this role, I am not only accountable to the community but also to all my relations as a Muslim whose Creator “offered the Trust to the heavens and the earth and the mountains, and they declined to bear it and feared it” (Quran, Verse 33:73). 

I acknowledge that this article-series is biased. It features the perspectives and needs of peer navigators and Indigenous women, but it is missing medical care providers’ side of the story. Also, the undertone of the series points at healthcare (as an institution) to do the heavy lifting of system change. I believe that this bias is justified for three reasons. First, the bias is inevitable because the article is driven by the voices of the Peers4Wellness community, where Indigenous women and peer navigators are overrepresented. Second, the bias is not against medical care providers. “It’s not entirely their fault,” as put by community, that healthcare perpetuates historic trauma. Echoing the community, we/I recognize that “the system is designed almost to burn everybody out: nurses, doctors, everybody” and that “we need wellness for everybody.” Finally, the bias is necessary because the responsibility for enacting reconciliation falls on colonial institutions such as healthcare. 

I heard Dr. Alexandra King tell me that she is concerned about losing medical providers as an audience because of this bias. I listened and sought guidance from Dr. Sharon Jinkerson-Brass, who is the Indigenous Knowledge Holder on the Peers4Welness project. Sharon wrote that “we all understand the penetrating and comforting heat from a fire on a cold winter’s night and the beauty of a cool bath on a hot day. If we could remember the sacred fire and holy water when we are dreaming a new relationality in the healthcare system.” Being accountable to community, responding to Alexandra’s point and learning from Sharon’s wisdom, I offered the above acknowledgement (water) with the hope of cooling off the bias (fire).

Peers4Wellness Community 

This article is guided by the voices of the Peers4Wellness community in British Columbia on the unceded territory of the Coast Salish People. The community includes 53 people: Indigenous women (cis- and trans-gender) who have lived and living experiences of HIV and hepatitis C; Indigenous and non-Indigenous peer navigators including frontline workers and community organizations and Indigenous matriarchs including Dr. Sharon Jinkerson-Brass, Knowledge Holder and community research associate; Candice Norris, culture support worker and peer research associate; Nicole Smith, community research associate and Dr. Alexandra King, internist physician and principal investigator. Dr. Alexandra King is also the senior author of this article. 

Dr. Alexandra King

My name is Alexandra King. At least that is the name recognized by the government and in day-to-day life. However, I have been gifted with two spirit names that truly connect me to my ancestors and all my relations. I am a member of Nipissing First Nation, which is located in what is now known as Ontario. My First Nation ancestry flows from my Mother’s bloodline, while my Father was of mixed European ancestry. I have been welcomed by the Mississaugas of the Credit First Nation, my husband’s community, where I have the privilege of living. I work, mostly virtually, on Treaty 6 territory and the Homeland of the Métis on what has become known as Saskatoon at the University of Saskatchewan. I am honoured to be the Cameco Chair in Indigenous Health and Wellness, which is primarily a research chair; I also do clinical work as an internal medicine specialist. I have always deeply admired lived and living experience and the wisdom that this potentially brings to a culturally safe and responsive healthcare system. I see the Peers4Wellness research (funded by CIHR) as a critical piece supporting this work.
 


[1] We are applying “lived” as an adjective combining form to mean having a life of a specified kind. Lived is not the past tense of the verb live [liv] but derived from the noun life to which the suffix -ed has been added. Lived experience denotes life experiences that are past, present and/or ongoing.

[2] Ethics is defined from Indigenous-centred perspectives. The definition is influenced by Willie Ermine’s concept of Ethical Space. This refers to a conceptual space between thought worlds (e.g., Indigenous and western, community and institution), where people engage in dialogue to foster mutual understanding. Ethical people (as we define them) create and a interact in an Ethical Space of engagement. 

[3] See part 2.1 and part 2.2 for definitions of quality of treatment, equality of dignity, equality of opportunity, equality of interaction and equality of outcomes.2,3

[4] We use “lent by” to signal that a quote is featured in a way that reflects what was said and what the story re-tellers heard. Here, the re-tellers join the community to become story co-tellers.

[5] Guiding this step is beyond the scope of this series. 

[6] Indigenous communities include Indigenous people (e.g., IWLE and Indigenous peer navigators) and their allies (e.g., non-Indigenous peer navigators).