Abstract
Context:
American Indians (AIs) are disproportionately affected by serious illness such as cancer. Colonization, cultural genocide, and trauma have adversely affected AIs’ ability to attain health and well-being, and in many cases led to the loss of the right to practice traditional ceremonies and rituals. Still many AIs describe well-being as being rooted in spirituality.
Objectives:
The purpose of this project was to learn about the perspectives of AI cancer survivors, caregivers, and Tribal leaders and healers specific to spirituality while on the cancer journey.
Methods:
Qualitative interviews and Indigenous talking circle methodologies were used to explore AIs cancer survivors, caregivers, and Tribal leaders and healers’ perspectives on spirituality while on the cancer journey. A data analysis team consisting of AI and non-AI members analyzed the narrative data.
Results:
Qualitative analysis of interviews and talking circles revealed 4 major themes related to spirituality: the chasm of colonialism, coexistence of Traditional and Christian religions, calling the Spirit back, and prayer as sacred energy.
Conclusion:
It is critical that clinicians caring for AIs with serious illness seek to understand their patients’ spiritual beliefs about disease treatment and death and work with them and their families to support quality of life throughout their illness journey. In addition, clinicians must recognize the systemic racism inherent in our healthcare systems, and dismantle cultural clashes and bias for all patients, particularly AIs, who have long suffered from poorer health outcomes.
Keywords: American Indian, Spirituality, Well-being, Colonization, Historical Trauma
Introduction
Serious illness disproportionately affects American Indians (AIs). Nationally and in the Great Plains region of the United States (US), the burden of heart disease, cancer, diabetes, kidney, and liver disease are significantly higher among AIs than Whites (1–5). Reasons for these poorer outcomes vary and are attributed to the social determinants of geographic location, poverty, inadequate health insurance, culturally unresponsive healthcare, colonization (4), cultural genocide (6), historical trauma, systemic racism, and decreased access to timely screening and high-quality primary and specialty treatment (2, 3, 5, 7–10). Each reason is egregious; however, we will focus on colonization, cultural genocide, and historical trauma.
Colonization, cultural genocide, and historical trauma have adversely affected AIs ability to attain health and well-being (4, 6, 11, 12). For AIs living in the Great Plains region, colonization led to a multitude of losses including, land, food sources, language, the right to practice traditional ceremonies and rituals (4), and traditional childrearing practices (10, 12). The US Federal Government forced Native nations onto reservations, often not in their traditional homelands, and created laws making the practice of traditional spirituality, religion, and ceremonies illegal. Children were forcibly taken from their families and sent to boarding schools, “to kill the Indian and save the child” (12). The federal government and religious organizations systematic and deliberate actions of cultural genocide eroded AI cultural values, traditions, language, and parenting (13), culminating in historical trauma (10).
Historical trauma is shrouded in racism, where AI communities in efforts to preserve their cultural lifeways were forced to practice traditional ceremonies, customs, and language in secrecy (11), resulting in the deterioration of traditional spirituality and identity (4, 12, 14). These cumulative losses in addition to systemic racism, are linked to poor physical, emotional, mental, and spiritual health (10, 11, 15), contribute to the tremendous serious illness burden experienced by AIs, and greatly influence the lack of trust in Westernized medicine (15, 16).
American Indian Health and Well-being
Many AI populations describe health and well-being as living in balance and harmony within four dimensions: physical, emotional, mental, and spiritual (17, 18). Health and well-being are “intrapersonal, interpersonal, and extra-personal,” demonstrating the relationship with the Creator and all beings (2, 18, 19), and are deeply rooted in spirituality (14, 18, 19). Spirituality does not exist in isolation, rather it infuses every dimension of life (4, 20), and is integral to well-being and health (18). However, if AI spirituality is not addressed, health and well-being is at risk of imbalance and disharmony (4, 18).
When AI health and well-being are affected by serious illness, such as cancer, the journey is not walked in isolation. This collective experience shared by family, friends, and the community (2, 21) may include traditional healing practices and prayers, traditional spirituality, and Christianity (4, 15, 21). The collective cancer journey can create cultural dissonance between AIs and their non-Native healthcare providers. Cultural dissonance occurs when worldviews differ between patients and their healthcare providers and can contribute to conflict and cultural clashes (22) about disease treatment, management, and death (16).
Cultural clashes exacerbate cultural dissonance and can lead to spiritual distress for AI patients and families (2). Cultural dissonance may present when while hospitalized an AI patient and family request to burn Traditional medicine or to have a healing ceremony and are denied by the healthcare providers or institution. This denial of their spiritual practices can contribute to suffering and spiritual distress (4). It is crucial healthcare professionals caring for seriously ill AIs and their families understand AIs perspectives of spirituality and quality of life, and use a culturally informed approach to discuss spirituality and spiritual care.
As part of a larger study to develop culturally congruent palliative care with three Tribal communities in the Great Plains, the purpose of this manuscript is to share the perspectives of AI cancer survivors, family caregivers, and Tribal leaders and healers specific to spirituality and quality of life while on the cancer journey. The perspectives of these specific groups were chosen as important to highlight for several reasons. AI cancer survivors and caregivers are most directly affected and understand the cancer journey on a visceral level. Tribal leaders broadly understand the challenges and opportunities of attaining quality of life throughout the cancer journey in their communities, and Tribal healers deeply understand the suffering of AI cancer survivors and have profound experience caring for the spiritual needs of survivors and family members involved in the cancer journey.
Methods
The research team used a community-based participatory research (CBPR) design (23, 24) in the first phase of this larger study. The community is core to CBPR, where community strengths are bolstered, community members contribute to each phase of the research process, and work alongside external partners to address health disparities (25). In this first phase we sought to develop trust and relationships with Tribal representatives from the three communities. These Tribal partners were recruited by members of the research team, who over the past 15 years had developed close connections with individuals residing in the communities. Our first in-person gathering was designed to welcome and introduce the community advisory board (CAB) members from the three Tribal communities to the research team, provide an orientation to palliative care, the grant, the Tribal communities, and to begin preparing for the proposed Talking Circles and interviews.
We then met quarterly with each CAB, where CAB members provided substantial feedback on the final interview content. recruitment strategies, and participant selection. For example, CAB members were adamant that the first gathering with cancer survivors focus on hearing their story of their cancer journey, with the second gathering dedicated to responding to interview questions. To honor the sacredness of AI healing, the CAB composed a separate Tribal healer interview guide and advised against recording healer interviews. Partners Human Research granted approval as the single Institutional Review Board (IRB) for academic and clinical partners. Additional approvals were obtained from each Tribal Health Board/IRB and from Great Plains Region Indian Health Service.
Participants
We recruited participants from the three reservation communities from November 2020 through May 2021. Following recommendations from the CABs and to better understand the needs of AI cancer survivors and their caregivers living in Tribal communities, we sought the perspectives of four groups. Two groups included those most deeply affected by cancer: AI cancer survivors and their caregivers. The remaining two groups included Tribal leaders, who are entrusted with providing services or support through community programs and Tribal healers, who alleviate suffering by restoring balance through Traditional healing and spirituality.
Eligibility criteria for all four groups of participants included: a) 21 years of age or older, b) self-identify as AI, and c) at least parttime residence in one of the three reservations. Specific eligibility criteria for each group are as follows: a) cancer survivors—cancer diagnosis other than skin cancer; b) caregivers—anyone a cancer survivor consistently turns to for physical, mental, emotional, or spiritual support and has cared for someone in the past five years; and c) Tribal leaders and healers—recognized as a Tribal leader or healer by members of the CAB. Exclusion criteria for all participants was the inability to provide informed consent. As this was a pilot study our proposed sample size from each reservation was determined in collaboration with the CABs: cancer survivors, n = 7; caregivers, n = 6; Tribal leaders, n = 2; Tribal healers, n = 2.
Recruitment
We used purposive sampling based on CAB members’ recommendations, reservation community, and the inclusion criteria for each group. To aid in recruitment efforts we disseminated flyers on social media (e.g., Facebook) pages and relevant websites (e.g., Tribal, cancer survivor meetings). CAB members also provided names and contact information of potential participants they felt may be interested. Lastly, we employed snowball sampling, where we asked study participants if they knew of individuals who would be interested in participating and met the inclusion criteria to contact those individuals. Once enrolled, participants were scheduled for an individual interview (Tribal leaders/healers) or talking circle (survivors/caregivers).
Talking Circles/Interviews
Talking circles are an Indigenous methodology (26) that provide a platform for trust and relationship building. Talking circles reduce barriers; no one person is in a position of power, and participants feel accepted and able to speak openly and honestly (26–28). While similar to focus groups, our talking circle employed the use of a talking stick, which is used by many AI communities to allow each participant the opportunity to speak. The talking stick is passed from person to person as they speak and only the person holding the stick may speak during that time. To simulate the talking stick during the virtual talking circles, a research team member would play AI flute music after the participant had been speaking for six minutes to ensure all participants had the opportunity to share their stories.
Following CAB members’ recommendations and to honor AI traditional values of respecting and deferring to elders and those in positions of authority, we designed the Talking Circles and interviews so that all members would feel comfortable sharing their personal stories. For example, a young female caregiver may not be at ease sharing her experience of caring for an elder if a Traditional healer or Tribal leader were present.
Cancer survivors attended two separate talking circles with the first designated as a time for participants to share their cancer journey experience. Caregivers attended one talking circle; this meeting shared the same interview guide as the second cancer survivor talking circle. We conducted talking circles until we reached thematic saturation and achieved a relatively equal representation from each reservation. Each talking circle lasted approximately two hours.
We conducted individual interviews lasting 30–60 minutes with Tribal leaders and healers. We adapted content from the second talking circle guide for use with Tribal leaders, while we used a guide designed by the CAB for Tribal healers. See Table 1 sample talking circle/interview guide.
Table 1.
Talking Circle and Interview Guides: Sample Spirituality Questions
Sample Questions | |
---|---|
Cancer Survivor Talking Circle | What are your worries for your future? What are your worries for your family’s future? We recognize that traditional medicine is important to tribal communities. Is this something that is important to you? If so, how do you include traditional medicine into your care? |
Caregiver Talking Circle | Tell us more about how best to meet you and your loved one’s spiritual needs. How important is traditional medicine within your community? |
Traditional Healer Interview | Traditional medicine and practices are often left out of plans of care (or care plans). We wonder how do we best include traditional medicine/practices into a palliative care program that is respectful and honors the sacredness of these practices? |
Tribal Leader Interview | What challenges does your community face when trying to meet the spiritual needs of patients and families with cancer? What services need to be developed to help meet these spiritual needs? |
Data Collection
Due to COVID-19, each Tribal health board recommended a pivot from initial plans of holding talking circles and interviews on site within each reservation to using Zoom videoconferencing. Three team members led each of the talking circles and interviews. All talking circles and Tribal leader interviews were digitally audio-recorded and transcribed verbatim by a skilled transcriptionist. Tribal healer interviews were not recorded per CAB recommendations, but each of the three team members took handwritten notes, which were then synthesized into a narrative.
Data Analysis
We developed a data analysis team to conduct preliminary content analysis (29) to code, categorize, and organize the extensive narrative data. The first author, an experienced qualitative researcher, led the team and provided training in content analysis technique. Three groups of two team members were assigned to initially review either the survivor, caregiver, or Tribal leader/healer narratives. To ensure analytic rigor, the team used the following process. Each member independently read and coded their assigned interviews using NVivo 12 Pro (30). The team met and discussed their initial codes and categories, identifying similar themes across the survivor, caregiver, Tribal leader/healer narratives. We then created a preliminary codebook for team members to use in their independent analysis and coding of the transcripts they had not previously analyzed. The team met again where categories, codes, and subcodes were debated until they reached consensus. These final categories, codes, and subcodes were summarized by three members and presented to the three CABs for comment and critical feedback toward the palliative care intervention.
Crucial to CBPR is involvement of the community throughout all stages of research, and we specifically wanted to ensure CAB members agreed with our interpretations and that presentation of themes was culturally appropriate. After the CABs reviewed the initial spirituality-related codes, they expressed great interest in the team conducting a deeper analysis of the spirituality-specific content. Thus, two members performed a thematic analysis (31) by re-analyzing the initial spirituality codes and narrative data obtained with the spirituality questions.
Results
Over six months, N = 36 AIs from the three Great Plains reservations shared their perspectives about spirituality and quality of life while on the cancer journey. Participants were largely female, with all three reservations having nearly equal representation across participant groups (Table 2). Thematic analysis revealed four major themes: (1) the chasm of colonialism, (2) coexistence of Traditional and Christian religions, (3) calling the Spirit back, and (4) prayer as sacred energy. The themes describe these participants’ perspectives on the impact of colonialism and cultural genocide on their traditional spirituality and spirituality practices, leading to imbalance and poor quality of life. Participants identified that Tribal members may practice a combination of Christianity and traditional religion. Several indicated a desire to reconnect with their Traditional spirituality while on the cancer journey, feeling that by calling the Spirit back this may ease the distress associated with cancer. Interwoven among all of the participants was the importance of prayer in nourishing and strengthening them while on the cancer journey. As described previously, all transcripts were analyzed together rather than separately (i.e., survivor, caregiver, healer/leader) and are presented collectively.
Table 2.
Participant Demographics (N = 36)
Survivor | Caregiver | Healera | Leadera | |
---|---|---|---|---|
Age (years) | ||||
30–39 | n = 2 | n = 0 | N/A | N/A |
40–49 | n = 6 | n = 2 | ||
50–59 | n = 2 | n = 3 | ||
60–69 | n = 5 | n = 3 | ||
70–79 | n = 1 | n = 1 | ||
Gender | ||||
Male | n = 2b | n = 2 | n = 4b | n = 2 |
Female | n = 14 | n = 7 | n = 2 | n = 4 |
Reservationc | ||||
A | n = 4 | n = 2 | n = 2 | n = 2 |
B | n = 6 | n = 3 | n = 2 | n = 2 |
C | n = 6b | n = 4 | n = 2b | n = 2 |
Ages of healers and leaders not collected to be culturally respectful, to ask only the necessary information, and to not cause offense.
One survivor self-identified as a healer and was interviewed as a survivor and then as healer.
To ensure confidentiality reservations are identified as A, B, C.
Themes
Chasm of Colonialism
Several participants described the toll colonialism has had on Tribal members’ physical, emotional, social, and spiritual well-being. Many cited the issues of poverty, alcohol and substance abuse, and high suicide rates. One participant felt that many Tribal members are “walking in a traditional way, but don’t say anything due to racism.” This is especially true with regard to spirituality given the forced assimilation that many Tribal members experienced. Due to the enduring trauma of forced assimilation, some participants have not had exposure to traditional spirituality and struggled to make connections with spiritual healers. A caregiver stated:
I didn’t really grow up with a lot of spirituality. I’ve always been interested in it. I know that my grandpa told me that…if I burn sage it cleans the air, so we did a lot of that and just prayed personally. And I’m educating myself now and learning more about it. Growing up in [location], it’s kind of crazy how far away it seems, or like it seems like it’s not here.
A Tribal leader shared:
I just think of like the access to it, having the access to it, especially for those people that haven’t grown up with it, right? So that’s a majority of our community members or a big portion of them never really accessed those resources before. So, I don’t know how or maybe don’t know who to go to or what it’s even about and so I think that that’s a huge, a huge need.
Participants spoke of the chasm of intergenerational trauma created by colonialism. These practices further eroded traditional structures, widening the chasm. A Tribal leader described the impact stating:
…they’re affected by the intergenerational trauma; they obviously lack that connection and identity to who they are as a [Tribal name]. A main teaching of [Tribal name] is caring for your spirit, and there’s ways to do that, and there’s ways to call back that spirit, right? Or if you have suffered or went through a traumatic experience and sometimes they’ll say that our spirits might stay at that place and not come follow us home.
Because of these past injustices, traditional religion and spirituality is less visible in Tribal communities, making it challenging for those not raised traditionally to reconnect to their traditional ways. This loss of traditional spirituality has led to a blending of Christian and traditional practices, where AIs may incorporate both as healing practices on the cancer journey.
Coexistence of Traditional Religion and Christian Religion
Another effect of colonialism noted among the participants was a blending of religious practices. The majority noted practicing Traditional religion while at the same time identifying as Christian. One cancer survivor shared:
…my daughter-in-law, she would come and bring sage and she told my daughter, you keep this little piece of sage with you in the hospital and both, both of, the religion and the Indian religion, I think it really helped us because we used both of them…I’m Episcopal, so the Episcopal minister would come and visit with us. So we, we got it both ways, so, I like that. And I think my daughter liked that too because my little granddaughter would sing in [Native language], and so it was something that made us feel good…So when they gave my daughter that piece of sage to keep her, that made us not miss home that much because we were way up there and they were down here…that was good.
Clearly expressed among many of the participants was the importance of honoring each person’s choice of spiritual practice, whether it is Christian or Native. One survivor stated:
…there’s such a wide gamut of beliefs that again it’s a personal choice…whether it’s, you know, the medicine man, whether it’s a sun dance, whether it’s a church.
AIs on a cancer journey may report the inclusion of Christianity, Traditional religion, or both into their spiritual healing practices. Healthcare providers must be aware of this potential for coexistence and identify ways to support AIs spiritual practices.
Calling the Spirit Back
Whether the participants practiced Christian or Traditional religion or both, participants discussed the importance of caring for the distress associated with cancer. Many shared the benefits of attending inipi, the sweat lodge, as a way of cleansing and renewing their spirits. A cancer survivor shared:
All these natural ways of dealing with distress…going to the sweat lodge, giving all of that stress back, renewing yourself in that way is enormous for mental health…So acknowledging and learning what happened in the past that created this environment and these struggles and challenges and strengths that we do have today. And, you know, acknowledging that and then moving forward in, in a good way from that.
Participants overwhelmingly felt traditional practices, spirituality, and ceremonies were critical for healing. Many indicated how as a child they had limited exposure to traditional ways, yet as an adult, they recognized a strong desire to reconnect to their traditional lifeways. This was especially true of cancer survivors as their illness progressed, with one caregiver noting:
… I’ve noticed that, throughout the years…the change in my mom’s perspectives, the spiritual healing and leaning more towards our culture. It has definitely had a big impact on her. She definitely has taken and gotten more involved in our spiritual ways as far as spiritual healing goes.
A Tribal leader indicated that tribal members in their community are wanting to reconnect with their spirituality.
I think people are renewing, are becoming more familiar with their spirituality…they’re reaching out more, whether it’s to our spiritual advisors or if it’s just something that’s coming to the forefront for them…I think they’re trying to reach back into their spirituality.
For Tribal members diagnosed with cancer, Western medicine has a critical role in the healing process. However, several participants shared concerns about finding ways to “heal the spirit” for those on a cancer journey and not connected to their traditional spirituality and ceremonies. A Tribal leader stated:
…back to our old traditional ceremonies to help. To heal the spirit, if you will, is part of it. I know a lot of times Western medicine has been neglecting that part, to really help the spirit. I personally feel that that’s what needs to happen, is just to find that connection, bring it back…we’ve seen it, we’ve seen loved ones, people that we know, we’ve seen how much it hurts them. That’s really damaging to the spirit. That’s something that should also be rekindled along with the nourishment and everything else.
Another described the need for balance, especially for those with cancer. This Tribal leader felt that balance and holism needed to be returned through “calling that spirit back” and reconnecting Tribal members with their traditions. He shared:
…you could see it physically in people, what happens when you’re not balanced, if you will. We have good stress, we have bad stress, and when we have a lot of bad stress you can see it take physical forms on people, you know… the paleness…you can tell they’re unwell. And that’s how it manifests, and having that balance again, bringing that back, is calling that, calling that spirit back is something that needs to happen too. Holistically, we need to have [sic] supported spiritually and emotionally and physically, and to have all of that, that just comes together, and that’s what needs to happen.
This narrative exemplifies the interconnectedness of spirituality to quality of life. Without spirituality AIs lack balance in the physical, mental, and emotional domains, leading to poor quality of life; with balance, AI well-being is restored.
Prayer—A Sacred Energy
Across all the interviews and talking circles, participants shared the centrality of prayer within their lives, whether they practiced Traditional spirituality, Christianity, or both. A cancer survivor shared, “Prayer is the only place where we can get something that’s sacred energy and that can keep us going here as long as we can.” Prayer is seen as integral to every aspect of being. Another survivor described, “The first thing I do when I wake up is pray, and the last thing I do before I go to bed is pray, and every day it’s count your blessings.”
Prayer is foundational in the traditional practices of inipi and wiwayang waci (sun dance). A Tribal leader noted that accommodations can be made for Tribal members to participate in and experience the benefits of them even if they couldn’t physically enter the lodge or dance.
…you don’t actually have to be in the sweat lodge to participate. You could sit outside and some people do that. They don’t go in, but they’re there when the rocks are hauled in and they start. They might be sitting outside, but they’re still there to pray. It makes them still feel a part of the ceremony. And in sun dance time, you see a lot of sick people come. A lot of people come, and they sit under the arbor. They’re there all four days praying, and I think it makes them feel good.
Prayer is nourishing and strengthening; it is both individual and communal. A participant shared,
Through prayer we stay strong and through prayer it keeps us. I always say we’re made of four things that make up the one… the mind, the heart, body and spirit. Each one has to be nourished, and the mind, the heart, the body and spirit, each one has a certain type of nourishment they need, and our spirituality has been least nourished.
A cancer survivor identified how the healing nature of prayer to Tunkasila (the Creator) combined with smudging brought relatives from the Spirit World to come watch over her. This moment provided a sense of security and healing for her, allowing her to realize she would survive cancer.
…my cousin had an inipi for me, and I remember that night I was sleeping, and all of a sudden my grandma was in my dream. And not only my grandma, but there was all these other women, I guess they were my aunts. This was like my grandma’s mom and her mom, and there were like seven women in this hospital room. And my grandma came to me and said we’re here and we’re with you. And from then on it’s like, I know I’m going to be okay.
Prayer is foundational in AI spirituality, whether the individual practices traditional religion or Christianity. Our participant narratives demonstrated the healing and nourishing properties of prayer for AIs on the cancer journey toward restoring balance and well-being.
Discussion
Our results from these three Great Plains’ Tribal communities revealed the integral role of spirituality in AI health and well-being, especially when experiencing serious illness such as cancer. The participants’ stories clearly reflect their cultural worldview of relatedness; spirituality envelopes all facets of being, unlike the dominant cultural view (20).
Our participants described how efforts to heal and restore balance are needed within their communities. For many participants, restoration of balance and harmony is sought through Traditional and Christian avenues, with prayer being a principal component of that healing. This is similar to findings in other Tribal Nations, where participants reported strong affiliations with both Traditional and Christian religions, and when confronted with serious illness prayer brought great solace (14, 21). Healthcare professionals must be aware of this potential for dualistic religious practices and work with AI patients and families in creating a safe space to honor both.
Yet, our participants told how blending of Traditional and Christian religious practices came because of colonialism and forced assimilation through attendance at church-sanctioned boarding schools. The repercussions of colonialism, assimilation, genocide, and trauma are witnessed in these Tribal communities as significant health disparities and high serious illness rates (1–5, 32). Within the healthcare arena, intergenerational (historical and ongoing) trauma is magnified when healthcare professionals disregard injustices experienced and dehumanize AIs through racial slurs and culturally insensitive care (10, 11). Racism permeates US healthcare systems, and to restore health and well-being for AIs, healthcare professionals must first create an environment of trust (14, 16, 33–35). Implementing trauma- and violence-informed practices is crucial, which may include recognition of the intersecting health impacts of structural violence, seeking to understand AI people’s serious illness and social issues in context, and reducing retraumatization through creation of a safe care environment grounded in cultural humility (36, 37).
Our study has several limitations. First, our participants were all from one Tribal nation; however, this included three reservations which comprise six different bands of the Tribal nation. Thus, our results may be similar, but not generalizable to other Tribal nations. Additionally, three analysis team members were new to qualitative research. To maintain the rigor and trustworthiness of the data, they received initial education and guidance from the lead qualitative researcher and were paired with experienced qualitative researchers throughout the process. While they were new to qualitative research methods, their lived experiences as members of the same Tribal nation provided much needed context for the entire team.
Clinical Implications and Conclusions
AIs deserve healthcare that respects and integrates their cultural practices to promote living well with serious illness. For many AIs, this includes individual and community-based spirituality, as demonstrated throughout the Talking Circles and interviews. Care that does not include culturally humble exploration of spiritual beliefs and practices may actually cause spiritual distress. To avoid this, it is critical that clinicians caring for AIs with serious illness seek to understand their patients’ spiritual beliefs about disease treatment and death, and work with them and their families to support quality of life throughout their illness journey.
As society recognizes the systemic racism inherent in our healthcare systems, it is increasingly important to dismantle cultural clashes and bias for all patients, particularly AIs, who have long suffered from poorer health outcomes. Sharing the perspectives of AI cancer survivors, caregivers, and Tribal leaders and healers specific to spirituality and quality of life throughout the cancer journey is a first step in promoting culturally responsive humble care.
Key Message.
This article describes a qualitative analysis of the perspectives of American Indian cancer survivors, caregivers, and Tribal leaders and healers on spirituality while on the cancer journey. Major themes included the chasm of colonialism, coexistence of Traditional and Christian religions, calling the Spirit back, and prayer as sacred energy.
Disclosures and Acknowledgements
This work was supported by the National Cancer Institute (1R01CA240080-01) and the Cambia Health Foundation. Dr. Daubman receives funding from the Cambia Health Foundation as part of the Sojourns Scholars Leadership Program. The funders had no role in the design of the study; collection, analysis, and interpretation of data; or in writing the manuscript.
The authors wish to thank all our participants who generously shared their time, stories, and experiences. We are grateful for your willingness to engage with us using videoconferencing. Our heartfelt appreciation goes out to our Community Advisory Board members. This work would not be possible without your candor and input. We also wish to honor one of our Tribal healers who made his journey to the Spirit World. Your prayers, teaching, and desire to see this work move forward will always be an inspiration to the team.
Footnotes
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Contributor Information
Mary J. Isaacson, South Dakota State University, College of Nursing, 1220 Mt. Rushmore Road, Suite 2, Rapid City, SD 57701 USA.
Tinka Duran, Great Plains Tribal Leaders Health Board, Rapid City, SD USA.
Gina Johnson, Great Plains Tribal Leaders Health Board, Rapid City, SD USA.
Alexander Soltoff, Massachusetts General Hospital, Department of Medicine, Boston, Massachusetts, USA..
Sean Jackson, Great Plains Tribal Leaders Health Board, Rapid City, SD.
Daniel Petereit, Department of Radiation Oncology, Monument Health Cancer Care Institute, Walking Forward, Avera Research Institute, Avera Health, Rapid City, South Dakota, USA..
Katrina Armstrong, Columbia Irving Medical Center, New York City, NY USA.
Bethany-Rose Daubman, Massachusetts General Hospital, Division of Palliative Care and Geriatric Medicine, Boston, MA, USA.
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