Experiential Evidence of Systemic Racism for Indigenous Peoples Navigating Transplantation in Canada

Abstract

Introduction

Despite previous data stating that Indigenous patients with kidney failure are 66% less likely to receive a kidney transplant compared with White Canadians, there is a very limited understanding of the barriers and challenges experienced and described by Indigenous Peoples when accessing kidney transplantation. The aim of this study was to describe the perspectives and experiences of Indigenous kidney transplant candidates and recipients, living kidney donors, and Elders on access to kidney transplantation in British Columbia, Canada in the hopes of codeveloping and implementing health services interventions to address systemic barriers to transplantation.

Methods

Semistructured interviews were conducted with 19 participants and 4 focus groups were conducted with 18 participants (n = 37). Transcripts were thematically analyzed.

Results

Five themes were identified as follows: (i) confronting uncertainty and risk, (ii) culture of giving, (iii) systemic racism and discrimination, (iv) navigating complexities of transplant and donation process, and (v) a lack of culturally safe care.

Conclusion

These findings highlight that Indigenous patients face potentially modifiable barriers that may be amenable to health system improvements, such as development of culturally safe patient education tools and Indigenous-specific navigation supports. Health services and policy interventions need to be explored and evaluated to begin to address inequities in access to transplantation.

Graphical abstract

Kidney transplantation is the preferred treatment for kidney failure, offering patients with kidney failure better outcomes and improved quality of life compared with dialysis, and is highly cost effective.^1,2 In Canada more than 4 million people live with kidney disease with over 48,000 requiring renal replacement therapies, accounting for over $40 billion in health care costs per year.3, 4, 5, 6

First Nations, Inuit, and Métis people, collectively referred to as Indigenous Peoples,⁷ are the original inhabitants of what is now known as Canada. Reports outlining health inequities and disparate health outcomes in Indigenous populations have highlighted the impact of colonial structures, a history of forced displacement of First Nations into remote communities, forced government-sanctioned removal of children from Indigenous homes, and ongoing systemic and structural racism as key contributors to destabilizing determinants of Indigenous health.⁸ In the context of kidney transplantation, epidemiologic data suggest that Indigenous patients with kidney failure are 66% less likely to receive a kidney transplant compared with White Canadians, and wait longer to receive a kidney transplant despite having a 3 fold greater risk of kidney failure.⁹ Globally, similar trends have been demonstrated in countries with colonial histories, including Australia, New Zealand, and the United States.⁹

Although there are little Canadian data to further understand these disparities in Canada, research with Indigenous Māori populations in New Zealand have highlighted interpersonal and systemic racism, poor information and communication, and challenges with social determinants of health.¹⁰

The BRIDGE to Transplantation Initiative was developed in partnership with Indigenous patients, Elders (respected individuals who often play critical roles in Indigenous communities), and health leaders to identify and provide experiential context to barriers to kidney transplantation, codevelop solutions, and implement health services interventions to improve access for Indigenous patients. This paper aims to describe the experiences and perspectives of Indigenous transplant candidates and recipients, living kidney donors, and Elders to identify the following: (i) barriers and other factors shaping access to transplant, and (ii) potential solutions and strategies for clinical practice to improve equitable access to living donor kidney transplantation.

Methods

The Consolidated Criteria for Reporting Qualitative Health Research was used in this study¹¹ (Supplementary Material S1).

Participant Recruitment and Selection

Participants were eligible if they self-identified as Indigenous, were aged 18 years or older, English speaking, and kidney transplant candidates or recipients, living kidney donors (potential and actual) or Elders. A province-wide registry was used to identify eligible patients and donors. Race is captured in the registry and has been validated in previous publications.¹² Prospective non-Elder participants were approached by a research coordinator in clinics at St. Paul’s Hospital or Vancouver General Hospital or received mail-out invitations introducing them to the study. Elders were identified using snowball sampling and through recruitment supported by an Indigenous patient partner and consultant who shared information through community networks. All participants were offered the choice to participate in an interview or focus group. Ethical approval was provided by The University of British Columbia Providence Health Care, and institutional ethics approval was provided by Providence Health Care and Vancouver Coastal Health.

Data Collection

The question guide for interviews and focus groups (Interview and focus group guides, Supplementary Material S2) was developed with input from a multidisciplinary research team including nephrologists, patients, and an Indigenous patient partner and consultant. Between November 2018 to November 2019, semistructured interviews were conducted telephonically or in-person by a project coordinator trained in qualitative research. Four focus groups were conducted in-person at community centers identified as safe environments for participants, in consultation with patient partners. Each focus group opened with a prayer from an elder and a meal was provided. Data collection continued until data saturation.^13,14 All interviews and focus groups were audio-recorded and transcribed verbatim.

Data Analysis

Using principles of grounded theory¹⁵ and thematic analysis,¹⁶ preliminary themes related to the participant perspectives on access to kidney transplantation were inductively identified by a trained qualitative researcher who read and reread transcripts, listened to audiorecordings and noted concepts and patterns. Investigator triangulation was carried out by 4 members of the research team who independently read selected transcripts, reviewed the coding framework, and refined the preliminary themes based on discussion and agreement. Preliminary themes were reviewed and revised by the qualitative research lead and a patient partner to enhance credibility and confirmability. Transcripts were uploaded to NVivo software version 1.6.1 (QSR International Pty Inc. (Lumivero), Burlington, MA) and coded using the preliminary themes, which were revised and refined throughout. A standing committee, which consists of Indigenous patient partners, elder participants, Indigenous and non-Indigenous health care providers, Indigenous health organization (Provincial Health Services Authority Indigenous Health), and other key stakeholders were presented with the preliminary results and invited to share their interpretations and feedback. Final themes and determination of data saturation were discussed and revised with the principal investigator, the qualitative research lead, a patient partner, and the primary qualitative analyst.

Results

Of the 101 living donors and transplant patients approached, 31 consented to participate and 20 completed an interview or focus group. Seventeen self-identified Elders participated; however, detailed demographic information was not collected in order to limit data collection and protect anonymity. In Supplementary Table S1, we outline participant characteristics. Of the participants, 76% were female and 24% were male. Non-elder participants had a mean age of 48 (± 11.6) years. Of the participants, 45% lived in rural and small communities, 20% in medium communities, and 30% in large communities; and the median distance between their home community and Vancouver was 143 km. The duration of interviews ranged from 47 to 127 minutes, and the focus groups from 59 to 140 minutes. All focus groups were conducted face-to-face, whereas most of the interviews were conducted telephonically.

The following 5 key themes were identified: (i) confronting uncertainty and risk, (ii) culture of giving, (iii) systemic racism and discrimination, (iv) navigating complexities of transplant and donation process, and (v) lack of cultural safety. The themes and respective subthemes are described in the following sections with supporting quotations provided in Supplementary Table 2. A thematic schema illustrating the patterns and relationships among themes is provided in Figure 1.

Figure 1.

Thematic Schema. This figure outlines the key themes and sub-themes identified with arrows illustrating the links between different themes. The shaded grey box represents the only theme that was a facilitator, “Culture of giving.”

Confronting Uncertainty and Risk

Traumatic and Overwhelming

Patients felt “traumatized” by their diagnosis of kidney failure and needed time and space to process the “grief and loss of what my life’s like” before considering transplantation. They described this period as an “emotional rollercoaster” because “everything seemed to happen so quickly” and their “life’s been flipped upside down.” Receiving information left some feeling like they were in a “fog” because it wasn’t delivered at “the pace we need.” They emphasized the value of having a support person “to help make everything happen” at this time, with some warning that, without this support, it can lead to “avoidance of things” and people not “dealing with the information.”

Loss of Independence

Some patients were uncomfortable or unwilling to disclose their illness or need for a donor because they were worried that by doing so, they would be “a burden to somebody else.” There was a desire to maintain independence, self-sufficiency, and strength in the face of illness, with some being “too proud to ask” for help, worrying that that sharing one’s emotions would be “a sign of weakness.” This led to an unwillingness to accept donation offers or support from family or friends. In response to their loved one’s hesitation and reluctance, some living donors initiated the process without their recipients’ knowledge.

Respect Donation as Personal and Private Choice

Becoming a living donor was viewed as an individual and “personal decision.” This made asking someone to become a living donor “not a comfortable process” for patients, with some finding it challenging to discuss such a “sensitive subject” with family and friends, noting that “everyone has their own personal feelings and issues on it.” Sharing one’s need for a living donor on social media was “easier” for some because it alleviated the intensity and pressure of the conversation and was a way of “just putting it out there” and leaving it up to the person to decide “if they want to or not.” Some considered their decision to pursue donation as “private” and made the choice independently before speaking with anyone else because they didn’t want to feel “pressured” or cause concern or hope until they were deemed to be suitable and a match.

Fear of Donation

Patients were “scared and worried” for the health and future of living donors; and were concerned about the “burden” recovery would have on their donor’s responsibilities and children. Fears were amplified for parents whose children were considering donating to them, with some refusing offers because they perceived the risk to their child’s health and wellbeing to be unacceptable, explaining that they “couldn’t live with myself if something happened” or if they or younger family members develop kidney disease and “need it down the road”. Some donors recalled others being “shocked” and “concerned” by their decision, and in some cases, felt that their family members initially questioned their judgement or were unsupportive. Some donors worried about how their children would “handle it” and found it challenging to explain the process while ensuring that that their children understood that their parent is “not going to die in the hospital.”

Coping With the Unknown

The transplant and donation process was full of “unknowns,” with some feeling "in the dark" and lost—“I don’t know where we stand, how long this process is going to take.” Although some felt well-supported by their team, others felt “rushed” or insufficiently prepared or knowledgeable to take full advantage of their appointments, have their questions answered, and feel “reassured.” Lack of transparency and uncertainty around the process and one’s status was emotionally challenging and stressful for participants, with some feeling like getting to the point of actually receiving or donating a kidney was up to “fate” and a “miracle.”

Culture of Giving

Prolonging and Improving Life

Participants noted the importance of intergenerational relationships and fulfilling one’s responsibility to uplift, protect, and care for family and community when expressing their support for living donation and transplantation. Receiving a kidney transplant was viewed as an opportunity to “save your life, extend your life,” avoid the burden of dialysis and “be there” for the younger generation; whereas donation was felt to be congruent with a culture of giving within community. Donors felt compelled to pursue living donation knowing they could be the one to “give life to somebody else.” For some, the desire to donate, or remain alive for their loved ones, overrode beliefs in body wholeness, and initiating the process meant they “had to separate me and my thinking of traditional ways.”

Mobilized by Experiential Knowledge and Awareness

Participants stated that kidney transplantation and living donation “is invisible” and poorly understood in their communities, and felt that if others knew “they can help and resources are there, they’d step up.” Hearing or seeing success stories made their “vision open up more” and gave participants “an idea of what you would go through for yourself,” prompting some to contemplate kidney transplantation or living donation. Learning about the paired donation program was “reassuring” for donors knowing that they could still donate despite not being a suitable match, and combined with learning about the waitlist and need for living donors, some were motivated to pursue donation in the future if they deemed ineligible at this time.

Strength of Family and Community

Receiving support from family and community during the donation and transplantation process was described as a form of reciprocity and “mutual” giving— “When they needed help, I helped; when I needed help, they helped.” Family members and friends filled important roles by offering financial, navigational, or childcare support before and after surgery, as well as taking the initiative to approach potential donors on behalf of patients. Participants felt cared for, motivated, and a sense of belonging because of the emotional, cultural, and spiritual support they received from their community. Online communities were valued circles of support for some, with social media enabling participants to receive support, share their experience, and “celebrate” with others.

Systemic Racism and Discrimination

Mistrust and Distressed by Mistreatment

Participants acknowledged that “there is no trust because of the history between the medical model of Canada and First Nations people,” and emphasized that contemporary experiences in which Indigenous People “get treated badly and neglected” perpetuate mistrust and apprehension toward the medical system. Mistreatment was viewed to be pervasive and expected—“You’re used to that your whole life,” which led to some being resigned to poor care during the process or reluctant to pursue transplantation because of anticipated exposure to harm. There were situations during transplant and living donation process in which participants felt dismissed, a lack of “genuine concern,” or that information was not transparent, which caused some to question the intentions of staff. The role of relationship building in fostering trust was notable among participants who had positive experiences with their team, as they recalled having “very good rapport” and a “close bond” with staff who were “super responsive,” “actually took the time” and were “willing to sit down and talk with them” and “actually comfort.”

Harmful Stigma and Stereotypes

Some participants recounted experiences during the transplant and donation process in which health care providers made assumptions based on misconceptions and deep-seated stereotypes of Indigenous Peoples. Some participants felt judged by staff as “noncompliant,” neglectful and harmful to their own health, and undeserving of their time and care—“Nurses look at you like why am I wasting my time trying to help you because you’re going to just go out the door and hurt yourself again,” and believed that these biases informed their treatment. Some participants had experiences in which they felt their pain was not taken seriously or were immediately asked about drug or alcohol use because of being stigmatized as having substance misuse issues.

Being Regarded as Unworthy of Care

Some participants felt “forgotten” during the process and expressed a need to feel “valued” and that they “deserve to be taken care of.” However, the lack of communication from their team and the process being at a “standstill” made them feel like they weren’t a “priority,” and that surgery was “never going to happen.” Some felt that delays highlighted concerns they were treated differently because they are Indigenous and felt that they were regarded by the health care system as “not worthy” or “good enough” for care. Some noted that these feelings compounded preexisting feelings of being unworthy of care or treatment throughout their health journey.

Unsafe in Institutionalized Settings

Some participants were fearful of medical institutions, explaining that these feelings are common among Indigenous People and that most “do not go to a hospital unless they’re in a life-or-death situation.” Participants recounted “suffering” and mistreatment they and their loved ones previously had at hospitals, regarding the whole health system as being one that is “set up for the White” and “don’t treat Aboriginal people well.” Some participants compared their experience of being at the hospital to “jail” or a “confining” establishment and “just wanted out.” The fact that most health care interactions and transplant education occurred in hospital settings was felt to be a barrier to care and building a trusting therapeutic relationship.

Navigating Complexities of the Transplant and Donation Process

Unpredictable and Poor Access to Services

Coordinating testing during the work-up and early assessment stages proved challenging for participants in rural and remote areas because of limited access to local health care services and scarcity of family doctors. Some relied on locum physicians, walk-in clinics, or visiting providers from Vancouver; however, this care lacked continuity, resulted in “miscommunication”, and was exhausting for patients because it required repeatedly explaining their situation. Transitioning to the transplant program in Vancouver was disorienting for some because it resulted in a sudden change of their regional team’s involvement and required a relearning of roles and supports available. There was concern around the lack of nephrology and kidney donation-specific knowledge and multidisciplinary care locally, which led to some recommending the use of virtual health appointments to improve access to specialized services and reduce barriers to caregiver involvement.

Burden of Travel and Financial Strains

For those living in rural and remote areas, travel for testing and assessment was “stressful,” “costly,” time-consuming, and took “a big toll” on them and their caregivers because it required planning, time off work, childcare, and more. Some received “financial support for flights and hotels” from their bands, which lessened the strain, but it was inadequate to “cover the cost”—“It just buffers it out.” Moreover, some experienced challenges in accessing Indigenous benefits and coverage programs, because they were faced with administrative hurdles, lack of awareness between health care systems, challenges completing forms and required documentation, and issues navigating a complex array of jurisdictions and eligibility criteria.

Relying on Social Network

Navigating the health system during the transplant and donation process was overwhelming, with participants relying on family and friends as a result of finding that the health care system and bands or local health offices “didn’t have much of a support system.” Participants felt fortunate to receive social, emotional, and logistical support from trusted family, friends, and communities. Others who lacked social support felt alone, stranded, and that they had “no one I can lean on.”

Lack of Culturally Safe Care

Vulnerable and Isolated From Community and Culture

Having to leave one’s home community and travel to Vancouver was overwhelming, isolating, and made participants “feel alone” because they had to navigate an unfamiliar area without the support of their family, community, and regional health care team. In the absence of family member accompaniment, there was a desire for supports that could provide a sense of familiarity and connection to community because this would alleviate the “culture shock” and help them feel confident and safer in encounters with their team. Some wanted support from staff who have “walked the walk” as an Indigenous person and could bring an understanding of culture, customs, and values to the process. Some attempted to contact Indigenous navigators at the hospital but were never followed-up with or felt they lacked the capacity to support them—“They didn’t know anything about it.” Places to stay after surgery that are “run by First Nations people,” “feels like home,” and offer “healers and spiritual guidance” were identified as key resources to support holistic health and wellbeing, and ease stressors associated with cultural dislocation.

Restricted Opportunities to Implement Cultural and Spiritual Practices

Some participants needed to prepare for transplantation and donation in a “spiritual way,” using ceremony to process “grief and loss;” however, they felt there was a lack of “acknowledgement” in the health care system around the “cultural implications” of going through the process of receiving or donating a kidney. Incorporating traditional and spiritual practices was important for some participants’ health and healing; however, some did not inquire about integrating such practices into their care because they were “shy,” didn’t feel like they had the opportunity to discuss it with their team or felt that their requests would not be appropriately responded to. Participants noted the diversity of spiritual and religious beliefs and levels of practice among Indigenous Peoples; but believed that greater efforts should be made to assess and accommodate individual and unique needs.

Disenfranchising Educational Materials

Participants felt that the educational materials they received were too “clinical” and “doesn’t feel right” for Indigenous Peoples. Written information was felt to be impersonal and conflicted with Indigenous ways of sharing and receiving knowledge—“You don’t feel it. This is more of a White man’s way of doing work.” The “interaction” of face-to-face communication was preferred, and participants felt it would be more impactful to “hear it, than read it” through the use of videos capturing the voices and stories of Indigenous patients and donors. Although some valued having “information at their fingertips” through the use of online platforms, others suggested sharing information in community spaces and band offices to increase access for those living in remote areas and “don’t often have the technology or Wi-Fi.”

Discussion

In response to documented disparities in access to kidney transplantation among Indigenous populations in Canada^7,9,17, 18, 19 and elsewhere,20, 21, 22 this qualitative study provides key experiential and novel insights by Indigenous patients, living donors, and Elders on key barriers to transplantation; and highlights potential health services solutions to mitigate these barriers.

In keeping with studies in other patient populations,23, 24, 25 participants highlighted difficulty in confronting the reality of kidney failure and the need for transplantation. This, along with concerns about donor outcomes, was reported as a key impediment to living donor outreach. These findings are similar to previously described findings in African American and Hispanic populations in the United States, where a lack of knowledge about the benefits of transplantation and concerns about risks for living donors has been shown to hinder patients’ ability to consider transplantation and approach potential donors.²⁶ Improvements in education, awareness, and increased social supports may mitigate these important barriers. In a recent scoping review of health equity data in organ transplantation,²⁷ randomized studies testing educational interventions and support services were highlighted as a rare area in equity research that has demonstrated efficacy in increasing access to kidney transplantation. These findings suggest that similar interventions may be effective for Indigenous populations.

Importantly, participants reported a culture of giving which strongly aligns with the principles of donation and contrasts suggestions that cultural factors dominantly deter organ donation in certain communities.^28,29 In a qualitative study conducted by Molzahn et al.,³⁰ interviews with Coast Salish Indigenous community members revealed a dichotomy of beliefs relating to organ donation. Although some participants highlighted concerns that organ donation may interfere with the traditional belief that the body must remain whole for one to enter the spirit world after death, others highlighted the cultural importance of helping others and suggested that organ donation is in keeping with this tenet. Our findings similarly suggest an important role for organ donation and highlight the need to consider a more balanced understanding of cultural context so that cultural facilitators, such as culture of giving, are considered alongside cultural barriers.

Consistent with previous reports,31, 32, 33, 34 participants highlighted historical and ongoing concerns about systemic racism and discrimination experienced by First Nation, Inuit, and Métis populations in the Canadian health care system. These concerns significantly impacted patients’ experience in accessing transplantation. Patients reported mistrust in the health care system and concerns about stigma and stereotyping which hampered their ability to navigate the transplant process and shaped their interpretations of clinical interactions and decisions. This was most notable in the perception that delays in transplantation and decisions around transplant candidacy were driven by a sense that Indigenous patients are unworthy of saving. These findings, though disturbing, are in keeping with pevious reports and support calls to ensure cultural safety in health care through education and ensuring mechanisms for accountability.³⁵ Furthermore, these findings highlight the need for transplant programs to acknowledge the broader health care challenges faced by Indigenous patients and consider adapting the transplant process to ensure it is not contributing to these challenges, but instead is designed to mitigate these barriers to care.

Citing the historical role of medical institutions in the mistreatment of Indigenous Peoples in Canada,³⁵ including within the residential school system, participants reported discomfort when entering hospitals and other medical institutions, which is further aggravated by the lack of cultural safety in transplant educational materials, the lack of Indigenous representation in the transplant team, and the inconsistent availability of cultural or spiritual practices within medical institutions. These findings support the need for increased Indigenous representation in the transplant team and a reimagining of educational resources to ensure they apply Indigenous ways of knowing by incorporating storytelling from Indigenous patients and Elders. Furthermore, hospitals should be encouraged to explore ways to incorporate cultural practices and spirituality during key events, such as the index transplant hospitalization. Brooks-Cleater et al.³⁶ highlight the importance of ensuring safe environments for Indigenous patients in health care through individual and organizational self-reflection, by working in partnership with patients and communities, and through training of healthcare providers in cultural safety.

A pervasive theme among participants is related to the series of challenges in navigating the complexities of the living donation and the kidney transplant evaluation process. Patients reported confusion about their status during long lulls in their transplant evaluation, highlighting the need for enhanced and culturally safe communication. The lack of Indigenous-specific support services during the donation and transplant evaluation process was noted as a key barrier that led to significant delays, particularly for patients having to travel long distances to complete testing or medical consultations, leading to a significant emotional and financial burden for patients and prospective donors. These findings highlight the need for Indigenous navigation support and a mechanism to deliver testing and medical services in a coordinated and streamlined manner, while ensuring financial neutrality. The role of Indigenous patient navigators has been adopted in some clinical settings, most notably as part of cancer care models where it has been shown to be effective in improving participation in cancer screening³⁷ and resulting in high levels of patient satisfaction.³⁸ Although the focus of the navigator role has varied in different studies, supporting patients as an advocate through the health care system has often been a key component. Unlike the experience noted in cancer care, the effectiveness of non-Indigenous patient navigators has yielded mixed results in the context of transplantation.39, 40, 41However, culturally specific barriers have not been explicitly addressed in these studies and no studies have examined the role of Indigenous patient navigators in the transplant setting. Furthermore, when considering such a role, Bernardes et al.³⁸ highlight the need for collaboration with communities and hospital systems to ensure a smooth implementation.

Readers should consider the limitations of this study. This study was conducted in a single province as part of a broader initiative to develop health services interventions in British Columbia and therefore the findings of this study may not be directly applicable to other regions and territories across Canada and elsewhere. Furthermore, despite sampling participants from around the province we were unable to capture every region. Therefore, our findings may underrepresent barriers and challenges in all groups or communities. Furthermore, living donors and patients were identified through self-identification of race and interviews were conducted in English, which may have excluded some community member views. Given the diversity in Indigenous communities and the variability of processes and supports in transplant programs across the country, it is difficult to identify specific health system–level barriers from a broad national perspective; therefore, it is critical that regions across the country undertake similar initiatives to better understand the specific barriers within their regions and programs. Despite these important limitations, the broad themes outlined in this study provide an important framework for concerns and issues that warrant urgent attention, including systemic racism, lack of Indigenous representation in health care, and a need to tailor educational materials and support services for Indigenous patients undergoing transplant evaluation.

The themes identified in this study are critical for informing potential strategies and recommendations to address barriers in access to transplantation for Indigenous patients. Although the findings of this study are most specific to the Canadian context, given the shared cultural history of Indigenous populations globally impacted by colonization, these findings may be of value for Indigenous patient populations globally. In Table 1, we outline potential strategies for clinical practice based on participant recommendations and interpretation of results in consideration of the existing evidence-base. Potential strategies include developing educational materials that are accessible and culturally responsive, harnessing the experiential knowledge to support learning, and expanding education and supports to ensure caregiver engagement in care. It is essential that steps are taken to improve trust and transparency in kidney transplant and living donation policies and processes and develop strategies to improve cultural safety. Lastly, efforts to improve patient navigation and minimize the burden of travel and relocation are essential to address this key barrier to access.

Table 1.

Suggested strategies for clinical practice to improve access to kidney transplantation for Indigenous Peoples

Strategies to improve access	Suggestions for clinical practice
Culturally responsive and accessible education	-Codevelop resources with Indigenous community members to ensure messaging and language is responsive to educational needs and reflects the values and strengths of Indigenous communities, -Develop educational materials in various formats (DVD, downloadable formats, paper-based information packets) and ensure accessibility in areas with limited internet connectivity. -Create donor outreach resources that align with established ways of sharing and receiving information, such as social media guidance or facilitating family meetings to discuss need for a living donor. -Assess individual readiness to pursue transplantation, develop individualized educational plans, and create resources that can be personalized to patient status and learning preferences.
Harness experiential knowledge	-Give prominence to the experiences and perspectives of Indigenous transplant recipients and living donors in educational materials through videos and photographs. -Create networks of Indigenous transplant recipients and living donors to offer peer support and guidance.
Enhance informal social supports	-Extend education to essential social systems to increase capacity among family and friends to fulfill caregiver roles effectively. -Ensure caregivers are encouraged to attend appointments and are actively engaged in the process and their loved one’s care. -Establish supports to ensure caregiver support extends beyond home communities and can be available at critical timepoints without burden to patients and their families.
Enhance trust and transparency	-Increase clarity and understanding around the transplant candidate and living donor eligibility criteria, decision-making processes, testing requirements, collection of personal information, and steps in the process -Conduct community-based awareness building events and allocate time to build relationships and familiarity with transplantation and donation in community. -Increase transplant program capacity to prioritize relationship-building early on and throughout patient encounters, allocate sufficient time for consultation and educational sessions, and maintain availability for team members to be contacted.
Cultural safety	-Establish policies in partnership with Indigenous patients and community members to support integration of cultural protocols and spiritual practices during key events, such as the index transplant hospitalization. -Increase Indigenous representation in transplant workforce and implement processes to foster cross-cultural learning. -Conduct health care provider Indigenous cultural competency training to address misconceptions and stereotypes toward Indigenous Peoples, increase awareness of the diversity within and between Indigenous communities, and ensure care is responsive to individual cultural and spiritual needs. -Ensure institutional cultural safety policies, including a safe process for complaints.
Navigation support	-Implement transplant patient navigator program for Indigenous patients. -Ensure navigation support is offered early on in the transplant and donation process, with an emphasis on providing support to prepare for key events (transplant team assessment and surgery), and promote patient competence and self-efficacy in navigating the process. -Offer enhanced navigational support to patients with limited levels of social support by having patient navigators fill roles commonly taken on by caregivers (attending appointments, advocating on behalf of patients, etc.). -Assess patient needs for frequent check-ins and follow-ups throughout the transplant and living donation process.
Minimize burden of travel and relocation	-Increase lines of communication and knowledge sharing between transplant centers and Indigenous health systems and community services to improve access and use of supports to alleviate financial burden. -Improve coordination with regional clinics and provide education and training to regional staff to enhance the availability of competent and knowledgeable community-based care. -Create individualized assessment plans and establish policies for streamlining testing and appointments to build efficiencies into the referral and assessment process
Suggestions informed by participant recommendations and interpretation of results in consultation with evidence base

Importantly, given the strong feelings of mistrust and lack of meaningful inclusion in the medical system noted by participants, these strategies should be developed in partnership with Indigenous patient and community partners. Furthermore, the complexity of issues outlined in this study and the principles of Truth and Reconciliation highlight an urgent need for a clear mandate by regional and national transplantation bodies to collectively address the themes identified in this study through community awareness, research, and innovative health policy solutions, including consideration of reparative health policies.

Disclosure

All the authors declared no competing interests.

Supplementary Material

Supplementary File (PDF)

Table S1. Participant demographics. Table S2. Supporting participant quotations for each subtheme. Material S1. COREQ Checklist. Material S2. Interview and focus group guides.