Truths and Reconciliation: Peer navigation in Indigenous contexts Part 1 (Truths)

Prevention in Focus PiF 2024 Special Issue

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Navigating historic trauma in HIV and hepatitis C healthcare

Peer navigation refers to health supports that are provided by caregivers who have lived/living experiences that are similar to those of care recipients. Peer navigation promises to assist individuals to overcome barriers to healthcare and promote their health.1,2,3,4,5,6 But can peer navigation deliver this promise to cis- and trans-gender Indigenous women with living and lived experience of HIV and hepatitis C (IWLE) in British Columbia?

While recognizing the value of peer navigation, many IWLE do not use it. “Peer support is very important” and “I do not use peer support” were both common messages from IWLE in the Peers4Wellness community. This gap signals a missed opportunity, which has been attributed to historic trauma in healthcare. Healthcare refers to institutionalized services aimed at improving or maintaining health.7 Historic trauma is understood as the ongoing and intergenerational harming of Indigenous people as a group since first contact.8,9 This harming continues in healthcare. Seeking reconciliation, this article exposes historic trauma in healthcare and how it can undermine peer navigation in Indigenous contexts.

Braiding truths

This article is part of the Peers4Wellnesss project. Peers4Wellness is an Indigenous- and peer-led community-based research study in British Columbia 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 and from readings of select literature. The article is a braid of voices from the Peers4Wellness community (truths tellers) and the first and senior authors (truths re-tellers). The quotations come direct from the Peers4Wellness community. Unquoted text reflects the first and senior’s authors learnings from hearing the Peers4Wellness community and reading literature.

Truths

IWLE and their allies are strong and resilient. Driven by these attributes, the journey forward entails voicing and listening to heavy truths. “We need to bring dignity and respect to what has happened to people who are harmed by the system.” This is a necessary step in “a process of reciprocity and reconciliation for women that have been deeply, deeply harmed by the healthcare system.”

The difficult truths highlighted in this article are not meant to overshadow positive truths about the healthcare system and its people. “Medically it’s all taken care of” is a statement that reflects the experiences of a few IWLE in the Peers4Wellness community who were satisfied with HIV and hepatitis C healthcare. IWLE in the Peers4Wellness community also acknowledged the allyship of healthcare providers who “really offer a lot of help” and were “understanding, collaborative and non-judgmental.”

Recognizing these strengths and seeking reconciliation, the Peers4Wellness community shared 10 heavy truths:

  1. In healthcare, historic trauma is perpetuated by Indigenous-specific racism. This is called healthcare historic trauma.
  2. Indigenous-specific racism in healthcare is experienced as discrimination against Indigenous people, undervaluing lived/living experience, little focus on community-based care and the under-representation of Indigenous healing practices, Indigenous care providers and Indigenous healthcare spaces.
  3. Peer navigators’ work is not widely valued in healthcare. Peer navigators are deprived of the necessary resources and authority for their work. This prevents them from doing their jobs well. This is a product of Indigenous-specific racism and a symptom of healthcare historic trauma.
  4. Indigenous-specific racism in healthcare is leading to negative outcomes among IWLE and peer navigators.
  5. Indigenous-specific racism in healthcare is disconnecting IWLE and peer navigators from HIV and hepatitis C care. IWLE leave healthcare to avoid being retraumatized. Peer navigators burn out because of healthcare historic trauma.
  6. Most IWLE in the Peers4Wellness community did not use peer navigation. There are several reasons why: 1) there are gaps between what IWLE need and what peer navigators can offer, 2) because of tokenization of peer navigation, some IWLE did not find it helpful, and 3) peer navigators who are burned out can unintentionally harm IWLE.
  7. IWLE need healthcare that is free from historic trauma. Meeting this need requires more than peer navigation.
  8. Peer navigators can help IWLE cope with healthcare historic trauma, but they cannot protect IWLE from being traumatized in the first place. At most, peer navigators can only mitigate healthcare historic trauma.
  9. Addressing healthcare historic trauma requires comprehensive systemic change. This means balancing resources and powers between the Western system (institutions and professions) and Indigenous systems (community and peers).
  10. Peer navigation promises to make healthcare more accessible. For peer navigation to deliver this promise to IWLE, it needs to be housed in healthcare environments that are free from historic trauma. This requires healthcare policies and practices that are responsive and committed to reconciliation.

Double blow: healthcare historic trauma

Historic trauma refers to the intergenerational colonial harms that have been experienced by Indigenous people in Canada and globally.8,9,10 In healthcare, historic trauma continues because of Indigenous-specific racism.11 This is called healthcare historic trauma.  

Indigenous-specific racism is a distinct type of racism. It is “perpetuating colonization and is colonizing.” Indigenous-specific racism operates through “cultural invisibility” and “social hierarchy.” Cultural invisibility is experienced as an under-representation of Indigenous healing practices, Indigenous care providers and Indigenous healthcare spaces. As a result, as one member of the Peers4Wellness community commented, Indigenous people “don’t find that there are a lot of resources that are culturally appropriate, and/or in a way that they would like to be supported. It seems to be like, this is what there is, and if it isn't suitable for you, well then that's too bad, I guess you don't get that support.” Social hierarchy is encountered as discrimination against IWLE, especially those who use drugs or live in the Downtown Eastside of Vancouver. IWLE need care. Instead, as one noted, they receive “condescending tones and the lack of compassion is, just like, they look at us, and they look at me, like my skin’s brown and I am an addict and have these mental health concerns, and stuff, and they come out fighting.” Further, “our women in the Downtown Eastside, if they have the postal code of the Downtown Eastside, and you bring them to [hospital name], a lot of the nurses and doctors treat them different.”

Indigenous-specific racism in healthcare is (re)traumatizing. “For an Indigenous person in that system, it feels like you’re being rejected as a human being. It’s a soul wounding that goes on when you’ve been so abused, generation after generation.” This wounding cuts deeper for IWLE living with HIV and/or hepatitis C because it flames the “shame in regard to testing positive for a blood disease.” The resulting pains from healthcare feed the cycle of historic trauma.

Despite their resilience, IWLE are doubly harmed by healthcare historic trauma. Direct harms happen because the trauma causes emotional distress, which may trigger adaptive addiction and, in turn, increase HIV and hepatitis C risks.8,11 Sometimes these risks cost lives. Explaining, one IWLE from the Peers4Wellness community said: “This doctor came in, and looked at me, said, ‘All you want is more pills,’ threw the file on the table, and told me to get out. Yeah. And again, as Creator is my witness, I would not have relapsed if that didn’t happen.” Another Indigenous woman shared, “I watched them all die of AIDS. I watched my mother die and I watched many other people die of hepatitis C. And it breaks my heart because they believed solely on that doctor and the doctor would tell them, ‘Well we can’t treat you because you’re not settled.’ I watched so many people die needlessly.”

Indirect harm results from trauma avoidance. While considered a normal adaptive response, trauma avoidance can mean quitting healthcare.10,11 Many IWLE have stopped using healthcare and given up on their health to escape healthcare historic trauma.8,10,11 Explaining, one member of the Peers4Wellness community said: “This healthcare system is denying them over and over again. Why would I want to go back? Of course, I’m going to ignore my medication.” The resulting disconnection can push IWLE and peer navigators apart. When fleeing healthcare, IWLE in the Peers4Wellness community also avoided associated peer navigation programs. Another reason that some IWLE in the Peers4Wellness community did not use peer navigation programs was that they did not need this type of support when they stopped looking after their health. One said, “I haven’t really used peer support; I haven’t really used anything, at all. Cause I haven’t been taking care of my health.”

Healthcare historic trauma is a double blow. “The system is as toxic as the illness itself for our women in many cases,” and it can lead IWLE to avoid healthcare altogether, including peer navigation.

Mismatch: peer navigation to address healthcare barriers

IWLE need healthcare that is not (re)traumatizing, hence, free from Indigenous-specific racism.8,11,12,13 Achieving this standard of care requires everyone to step up — not just peer navigators.5,14

Indigenous-specific racism is a systemic barrier.11 Eliminating it therefore requires “real radical change to the whole environment … more of a systemic change, that means that people have a safe environment, day to day”.8,11,12,14 This entails system-level interventions to implement the Calls to Action (Truth and Reconciliation), the Calls to Justice (Missing and Murdered Indigenous Women and Girls) and the recommendations from the In Plain Sight report.11

But with peer navigation, “there is a focus on what are we doing on the individual level”.1,2,3,4,5,6,14 This involves supporting IWLE to cope with healthcare historic trauma, which includes accompanying them to medical appointments, facilitating cultural care and offering to listen to them.1,2,3,4 While valued, these peer supports cannot stop Indigenous-specific racism or spare IWLE from being (re)traumatized in healthcare.5

For example, IWLE from the Peers4Wellness community recognize that doctors, nurses and other healthcare staff need education and have to change “to understand our way” and “that we want compassion,” as two of them noted. However, peer navigation cannot be responsible for changing the perspective, attitudes and behaviors of healthcare professionals. As one peer navigator said, “doctors, well, they’re the experts, so they can be quite dismissive, so it’s that piece, that’s been a huge piece of how do we navigate shitty healthcare professionals?” What is being referred to is professional privilege,15 which is an example of a systemic healthcare barrier that peer navigators cannot remove.

When relying heavily on peer navigation for healthcare accessibility, a member of the Peers4Wellness community noted that “we’re expending effort making sure the peg is stronger but then keep on jamming it into a square hole that it doesn’t fit in. Ultimately, we have to respect Indigenous people. We have to deal with that hole; we have to deal with the system.” For IWLE in healthcare, the discrepancy creates a gap between what they need (historic trauma prevention) and what peer navigation can offer (historic trauma protection).5 The former is proactive; the latter is reactive. Consequently, some IWLE from the Peers4Wellness community did not find peer navigation helpful and walked away from it. One Indigenous woman said, “I just don’t think that there’s gonna be any benefit to having a peer support worker, right now, in my life. So, that’s why I haven’t used one.”

The mismatch between the lock (healthcare historic trauma) and the key (peer navigation) can, for practical reasons, distance IWLE and peer navigators.5,14

Mission impossible: tokenization of peer navigation

“Peer work has become this, kind of, tokenized position.” Tokenization occurs when there is only a symbolic effort taken to include peer navigators. Tokenization can prevent peer navigators from doing their work.

Tokenization is experienced when peer navigators are “impoverished” of wellness and training resources as well as the ability to exercise power.14 For example, most peer navigators from the Peers4Wellness community did not have employment health benefits.14 Many wondered “Who do I turn [to], and where do I go?” after a day of hard work. In addition, many peer navigators were thrown into the job without adequate training.14 For peer navigators, a common message was the need for more training, and, as one noted, “more of an explanation of what I’m doing, ’cause I really had no clue.” Equally bad is a “one and done” approach. Often, there is some training provided to peers but not enough to support ongoing learning, and there is not enough appreciation that peers are providers who also need continuing education.14 Furthermore, peer navigators described being sidelined by medical care providers and other decision-makers in healthcare. 14 For example, “the doctors would look right at them and talk over them ... like I’m dumb.” And generally, “there’s no access to decision-making power even as like someone in a position of power at an organization let alone peers.”

For Indigenous peer navigators, the effect of tokenization was amplified in two ways. First, Indigenous navigators were asked to provide cultural support without being supported to pursue cultural learning.14 However, “just to have an Indigenous person providing services, doesn’t mean [they’re] culturally competent [because] a lot of people have been displaced, and not grown up in their culture.” Second, there has been more rhetoric than action around Indigenous-led peer programming. “Indigenous people have been severely marginalized in our society, and disadvantaged in every way, and have huge barriers put up against them. So, we need to reduce those barriers, and make it more accessible … to elevate and bring those leaders up, right? It’s very important to have Indigenous folks leading the program, but we’re not doing a good enough job of empowering, building up those future leaders.”

The tokenization of peer navigation is a product of Indigenous-specific racism.11 Healthcare privileges Western systems (professional experiences and institutions) over Indigenous systems (lived experiences and community).8,16,17,18 For example, “there’s such incredible wisdom held by peers. But we’re limited by our Western ways and being colonized to tap into this wisdom.” Furthermore, “the Western system has sucked all of the resources,” leaving little for people with lived experiences and for community. For example, “there’s no comparison to the resources of professionals in the healthcare system compared to peers.” A reason is that professionals accrue most of the healthcare dollars. This includes direct and indirect funding. “The direct funding would be program dollars but the indirect would be for associations and conferences.” This imbalance is evident in the unsustainable funding for peer-led initiatives and for developing a peer workforce, which rely on grants and/or one-time project funding.

By limiting peer navigators’ access to necessary resources and powers, tokenization prevented them from fulfilling their roles. This undermined the effectiveness of peer navigation from the perspectives of IWLE from the Peers4Wellness community and emphasized the notion that “there’s really nothing that they can do for me, like, peer support workers.”

Tokenization is a symptom of healthcare historic trauma. It can make peer navigation work a “mission impossible”.14 For IWLE, this can undermine the effectiveness and, in turn, the utility of peer navigation.

Domino effect: peer navigator burnout

Healthcare historic trauma has a ripple effect. As a member of the Peers4Wellness community commented “Sometimes the stress goes all the way down the line” from the healthcare system to peer navigators and then to IWLE.

Peer navigators carry a “heavy load.” They are taxed with addressing the systemic issue of healthcare historic trauma and expected to do so without the necessary resources and powers.14 Peer navigators from the Peers4Wellness community  said that “It’s putting too much pressure on workers and support workers to try to fill that gap” and “there is a lot of vicarious trauma happening.” This is because peer navigators are constantly witnessing and responding to IWLE being harmed in healthcare.19,20 All of this has been making peer navigation “very stressful and leading to burnout”.14

Burnout is a normal response to work-related stress and trauma.19,20 However, burnout is associated with poor outcomes, including aggression and substance use.19,20,21,22 For example, “there is people like that work in the peer support, volunteer area, where they’re aggressive to other women, and men verbally, and sometimes it can get physical.” Also, peer navigators may “relapse because they had no support.”

In addition to hurting peer navigators, burnout can further sever the relationships between IWLE, peer navigation and healthcare.14 It can lead peer navigators to inadvertently harm IWLE in their care.14 This has been a concern for IWLE from the Peers4Wellness community. 14 To explain, one said that “if I know the [peer support] person, who is there, either could have drugs or alcohol on them, or has consumed some, before they’ve come, or is going to consume some after, that’s very dangerous for me, and my recovery. So, I can’t even play with that, like, it’s, it just can’t be that way.” For IWLE from the Peers4Wellness community, avoiding such harm can mean avoiding peer navigation.14

Also, burnout can disconnect peer navigators from the healthcare system. This can happen two ways. Without systemic support, some peer navigators “don’t see a way of being able to continue on, doing this work.” This can lead to high turnover20 because of peer navigators being forced to leave their work.14 The resulting vacuum can make access to peer navigation “really hard because you can’t find anybody” who offers it. Second, some peer navigators protect IWLE by navigating them away from traumatizing healthcare, meaning that “if a peer navigator is pissed off at the healthcare system, then they will not want to bring them here.” Consequently, IWLE can remain disconnected from HIV and hepatitis C care even when connected to peer navigators. In both scenarios, burnout can undermine the availability and effectiveness of peer navigation from the perspectives of IWLE.

Peer navigator burnout is another symptom of healthcare historic trauma. The harms of burnout can ripple out to include IWLE. “It’s like a domino effect.” The consequence is a tumbling of connections between IWLE, peer navigators and healthcare.5,13

Reconciliation

The truth is that Indigenous communities, IWLE and peer navigators are strong and resilient. They have been navigating healthcare historic trauma with self-determination, persistence and collectiveness. “I’ve been dealing with it myself" is how many IWLE responded. “We’re gonna go out, till our job is done” is how many peer navigators practiced their work. “This is not just a community, this is a family that you’d never have, in your life. And this is how we all connect” is how peers related.

A truth is that the healthcare system is missing the opportunity to build on the strengths of peer navigators to support IWLE with HIV and hepatitis C care. A truth is that peer navigation can deliver its promise to IWLE if supported by healthcare environments that are free from historic trauma.

Combined, the community’s truths are a call to rid the healthcare system of historic trauma. Honouring this call requires applying the “fundamental principle of reconciliation so that we evolve resources that are grounded in culture; grounded in ceremony; grounded in restoring [Indigenous] image by correcting history.” To act, the Peers4Wellness community introduced an “Indigenous vision” for HIV/hepatitis C care.14 Envisioned is historic trauma-safe healthcare. This is healthcare that does not perpetuate historic trauma, where IWLE and peer navigators are well-supported to lead and heal from HIV and hepatitis C. This vision is the topic of Part 2 (Reconciliation) of this article series, which will be published in Prevention in Focus in the fall of 2023.

Definitions

Peer navigation: Health navigation that is provided by peer workers.1,2 Health navigation involves supporting care recipients to overcome barriers to healthcare.1,2,3,4,5,6 Peer workers are caregivers whose leading qualification is having lived/living experiences that are similar to those of care recipients.2,3,4,5,6,25

Historic trauma: The ongoing and intergenerational harming of Indigenous people as a group.8,9 The word historic acknowledges the colonial origins of this lingering trauma.8,9 In Canada, historic trauma is the result of colonization and subsequent policies and practices including the dispositions of Indigenous lands, Indian Residential Schools, the Sixties Scoop, child welfare, the correctional system, racism, social exclusion and violence against Indigenous women.8,23 On an individual level, historic trauma causes cumulative stress.8,9,23,24 This stress leads to physical, mental, emotional and spiritual harm.8,9,23 To cope with these harms, some individuals resort to undesirable practices such as substance use or the avoidance of traumatizing places including healthcare centres.8,9,10,223

Healthcare: The services aimed at improving or maintaining health.7 The scope of healthcare is policy driven and dependent on the definition of health. 7 The functions of healthcare fall anywhere under a continuum from public health to medical care. 7

Wellness: A concept that includes the physical, social, emotional, cultural and spiritual, for both the individual and the community.12,23

Historic trauma-safe healthcare: A concept that describes healthcare environments that do not perpetuate historic trauma. This entails policies to prevent the traumatization and re-traumatization of Indigenous people and their allies in places of healthcare. The concept emphasizes proactivity and the safety principle of trauma-informed care.5,25

References

  1. Giacomazzo A, Challacombe L. Health navigation in HIV services: A review of the evidence. Prevention in Focus. 2018 Jul 19. Available from: https://www.catie.ca/prevention-in-focus/health-navigation-in-hiv-services-a-review-of-the-evidence
  2. Broeckaert L. Practice guidelines in peer health navigation for people living with HIV. Toronto: CATIE; 2018 [cited 2022 Jan 6]. Available from: http://epe.lac-bac.gc.ca/100/200/300/catie/practice_guidelines-e/practice-guidelines-peer-nav-en-02082018.pdf
  3. Dennis CL. Peer support within a health care context: a concept analysis. International Journal of Nursing Studies. 2003;40(3):321-2.
  4. Kyte A, Pereira J, Canadian Mental Health Association Kelowna & District Branch. Peer support toolkit for people living with HIV and/or heapatitis C: Part 1. Getting started: a guide to develop and deliver peer support services. Kelowna (BC): Canadian Mental Health Association Kelowna & District Branch; 2018. 1–81 p. Available from: https://www.interiorhealth.ca/sites/default/files/PDFS/getting-started-guide-to-develop-and-deliver-peer-support-services.pdf
  5. Blanch A, Filson B, Penney D. Engaging women in trauma-informed peer support: A guidebook. Alexandria (VA): National Center for Trauma-Infomed Care; 2012 [cited 2021 Dec 9]. Available from: https://www.nasmhpd.org/sites/default/files/PeerEngagementGuide_Color_REVISED_10_2012.pdf
  6. McBrien KA, Ivers N, Barnieh L et al. Patient navigators for people with chronic disease: A systematic review. PLoS One. 2018;13(2):e0191980.
  7. Deber R. Treating health care: How the Canadian system works and how it could work better. Illustrated edition. Toronto: University of Toronto Press; 2017.
  8. Fayed ST, King A, King M 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. Canadian Liver Journal. 2018 Oct;1(3):115-29.
  9. Brave Heart MYH, Chase J, Elkins J et al. Historical trauma among Indigenous Peoples of the Americas: Concepts, research, and clinical considerations. Journal of Psychoactive Drugs. 2011 Oct;43(4):282-90.
  10. Whitbeck LB, Adams GW, Hoyt DR et al. Conceptualizing and measuring historical trauma among American Indian people. American Journal of Community Psychology. 2004 Jun;33(3-4):119-30.
  11. Turpel-Lafond ME, Johnson H. In plain sight: Addressing Indigenous-specific racism and discrimination in BC health care. Victoria (BC): Ministry of Health; 2020 Dec. p. 240. Available from: https://engage.gov.bc.ca/addressingracism/
  12. Fayed S, King A. In the eyes of Indigenous people: The link between colonialism and hepatitis C, and the need for historic trauma-informed care. CATIE Blog. 2019 [cited 2022 Feb 19]. 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/
  13. Kallos A, Macklin C, King M et al. Water journey: Emerging themes for research priorities for Indigenous Peoples in Canada and hepatitis C. Canadian Journal of Aboriginal Community-based HIV/AIDS Research. 2017 Dec 1;8:61.
  14. Brass S, Norris C, Fayed S et al. Peer navigation for Indigenous women in HIV and hepatitis C care. Toronto: CATIE; 2021 [cited 2022 Feb 14]. Available from: https://www.catie.ca/peer-navigation-for-indigenous-women-in-hiv-and-hepatitis-c-care
  15. 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.
  16. Waldram JB, Aboriginal Healing Foundation (Canada), National Network for Aboriginal Mental Health Research. Aboriginal healing in Canada: Studies in therapeutic meaning and practice. Ottawa (ON): Aboriginal Healing Foundation; 2008.
  17. King M, King A, Gracey M. Indigenous health Part 2: The underlying causes of the health gap. Lancet. 2009 Aug 1;374:76-85.
  18. Sasakamoose J, Bellegarde T, Sutherland W et al. Miýo-pimātisiwin Developing Indigenous Cultural Responsiveness Theory (ICRT): Improving Indigenous health and well-being. International Indigenous Policy Journal. 2017 Oct 12;8.
  19. Rauvola RS, Vega DM, Lavigne KN. Compassion fatigue, secondary traumatic stress, and vicarious traumatization: a qualitative review and research agenda. Occupational Health Science. 2019 Sep 1;3(3):297-336.
  20. Godfrey KM, Kozar B, Morales C et al. The well-being of peer supporters in a pandemic: A Mixed-methods study. Joint Commission Journal on Quality and Patient Safety. 2022 Apr 21 [cited 2022 Jul 8]; Available from: https://www.sciencedirect.com/science/article/pii/S1553725022000836
  21. Lanius RA, Rabellino D, Boyd JE et al. The innate alarm system in PTSD: conscious and subconscious processing of threat. Current Opinion in Psychology. 2017 Apr;14:109-15.
  22. Brown-Rice K. Examining the theory of historical trauma among Native Americans. The Professional Counselor. 2013 Dec;3(3):117-30.
  23. King M, King A. Fostering support for Indigenous adolescents facing health inequities. In: Stewart M J, editors. Supporting children and their families facing health inequities in Canada. Toronto: University of Toronto Press; 2021. p. 92-100.
  24. Linklater R. Decolonizing trauma work: Indigenous stories and strategies. Halifax (NS): Fernwood Publishing; 2014.
  25. Arthur E, Seymour A, Dartnall M et al. Trauma-informed practice guide. Vancouver (BC): British Columbia Centre of Excellence for Women’s Health and Ministry of Health, Government of British Columbia; 2013. Available from: https://bccewh.bc.ca/2014/02/trauma-informed-practice-guide/

About the Author(s)

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 in relation with Sharon Jinkerson-Brass and Candice Norris, 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).

A key learning for me is that Indigenous research needs to be strength-based. However, I struggled to echo the community’s voices using a positive tone. The article is focused on the experiences of IWLE and peer navigators with healthcare. Mostly, these experiences have been negative. I (and we) heard this loud and clear during the Peers4Wellness sharing circles. The questions I asked myself were as follows: How do I retell these truths? Do I say it as it is? Or do I use a positive filter? In my view, the first approach risked being perceived as deficit-based and in turn culturally unresponsive. The latter risked being perceived as inauthentic and in turn community unresponsive. So, I was conflicted.

When reviewing my first draft, Dr. Alexandra King wrote: “The first section (healthcare historic trauma) just reads so heavily and negatively, I’m worried people won’t read through.” My response included: “The truths voiced in this paper are difficult. I believe that they need to be told. I worry that the narrator (me) is not Indigenous. So, retelling some negative truths might come across as another outsider using a deficit-based brush. However, I am not comfortable with being politically correct either. I want my voice to echo the community’s voices that are quoted.” I favoured retelling the truths as I heard them. I was especially at peace with my position because the deficits in the discussion pertain to the healthcare system; they are external to the Peers4Wellness community. What we ended up publishing reflects the middle ground we arrived at after engaging in Ethical Space.

Although heavy and negative, the truths brought forward in this article are necessary. However, they are not the whole story. The story is one of resilience. It speaks to the strengths of Indigenous communities, IWLE, peer navigators and their allies in the healthcare system. The story starts (Part 1 of this article series) by describing the difficult healthcare landscapes that the Peers4Welllness community must navigate. It concludes (Part 2 of this article series) with the community’s vision for transforming systematic deficits into opportunities for positive change. To hear the full story, the audience will need to engage with some heavy truths (Part 1) before reaching a climax of reconciliation (Part 2). I anticipate this read to be bumpy at first but inspiring at the end.

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 Sharon Jinkerson-Brass, Knowledge Holder and community research associate; Candice Norris, culture support worker and peer 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 Six 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.