American Indian and Alaska Native Understandings of Cancer Through Poetry: A Holistic Experience

Abstract

American Indians and Alaska Natives experience disproportionately high cancer diagnoses and death rates. This study aims to elucidate American Indian and Alaska Native understandings of cancer as voiced through poetry. Ten writers submitted poems in response to a call for American Indians and Alaskan Natives to share their perspectives, experiences, and knowledge about cancer through poetry. Poetry submissions were analyzed for emergent themes through an inductive-deductive approach using framework analyses grounded in the Native Wellness Model and Cancer Control Continuum. Four overarching themes, one within each of the four Native Wellness Model constructs (mind, body, spirit, and context) and 17 sub-themes, reveal that cancer is a holistic experience for American Indian and Alaska Native Peoples. Participant knowledge and experiences varied across the Cancer Control Continuum, with survivorship and palliative care most reflected in the poetry. Fewer poems addressed detection, etiology, and prevention. Poetry can serve as a culturally relevant data source to better understand cancer from American Indian and Alaskan Native perspectives, experiences, and knowledge. More holistic approaches to cancer education, prevention, treatment, and research with American Indians and Alaskan Natives could improve efforts to address cancer within this population.

1. Introduction

Cancer remains one of the most common causes of death in the United States (US), impacting roughly one in three Americans (World Health Organization 2022). American Indians and Alaska Natives (AI/ANs) have a higher incidence and mortality rate for several types of cancer when compared to other groups in the US (Clegg et al. 2002; White et al. 2014; Melkonian et al. 2021). Practicing culturally relevant research approaches with AI/AN communities can help inform efforts to address these disparities (Kruse et al. 2022; Warne et al. 2012; Burhansstipanov 2004). Arts-based cancer research, identified as a research method that recognizes the cultural context and experiences of AI/AN communities (Rookwood et al. 2022; Hammond et al. 2018), Poetry-based research, in particular, can not only serve as a form of inquiry that reveals deep cultural and experiential insights that traditional research methods might overlook but also serve as an intervention or catalyst for efforts to improve outcomes (Carroll 2005; Thomas et al. 2019; Cueva 2020).

Three academic institutions and three community-based organizations (CBOs) formed the Community Advisory Board for Medical Arts (CABMA), a community-academic partnership, in Omaha, Nebraska, with the long-term goal of addressing health disparities and related social determinants of health among historically marginalized and excluded peoples through medical humanities. The founding academic institutions included the University of Nebraska Omaha, the University of Nebraska Medical Center, and Creighton University. The founding CBOs were The Union for Contemporary Art (a non-profit organization that provides art education, civic engagement, art studio space, and exhibitions to strengthen the cultural and social landscape of the community by using the arts as a vehicle to inspire positive social change), the Youth Enjoy Science Cancer Research Education Program (a National Cancer Institute-funded cancer research education program that motivates, involves, educates, and mentors students and their communities in cancer prevention, treatment, and research) and Bluebird Cultural Initiative (a non-profit organization that provides educational lectures, performances, and workshops on a variety of topics related to AI/AN art and culture). Individual CABMA members include educators, researchers, students, artists, patients, healthcare professionals, and representatives of community organizations. The CABMA engages artists, community, and academics to address local health disparities through health promotion and arts-based methods. In 2022, the CABMA focused its efforts on AI/AN communities in the Great Plains to address cancer disparities. The CABMA explored AI/AN experiences with cancer through the lens of the Native Wellness Model, with specific attention to mind, body, and spirit in context, and AI/AN knowledge of the cancer across the stages (cancer etiology, prevention, detection, diagnosis, treatment, survivorship and palliative care) of cancer control continuum (Hodge et al. 2009; National Cancer Institute (NCI) 2025).

The Native Wellness Model (Figure 1) positions ‘Context’ as an overarching ring that surrounds and influences the spiritual, physical, and mental experience of cancer. With particular emphasis on the genealogical dimension, or the inherited social, cultural, and historical context into which a person is born, the Native Wellness Model provides a framework to consider cancer as influenced by not just biological ancestry, but also the community, traditions, and historical experiences that shape identity and perspective. Recognizing that individuals are born into families situated within communities that carry unique cultural and historical contexts, the analysis team examined mind, body and spirit, as presented in participant narratives within broader ancestral, cultural and historical context.

Positionality

The co-authors of this manuscript include founding members of the CABMA who, as arts-based researchers, recognize that non-discursive methods of inquiry (e.g., pictures, music, dance, poetry) can, in their creation, be forms of research. The authors believe that the arts have the potential to generate statements and insights that cannot be expressed, documented, or shared in other forms and that the arts can engender open spaces to challenge assumptions and call us to reconsider relationships and interactions that are fundamental in healthcare, research, and education. Within our circle of co-authors, four individuals identify as American Indian, including members of the Cherokee Nation, Eastern Band of Cherokee, Sicangu Lakota Nation, and non-tribally enrolled members who identify as having Assyrian, Black, Czech, Danish, English, and Scottish heritage. One author identifies as a public health student and an Indigenous poet; one author identifies as an Indigenous arts-based cancer researcher; one author identifies as a portrait artist and a non-Indigenous arts-based health researcher; one author identifies as a non-Indigenous arts-based researcher; one author identifies as a non-Indigenous arts and community advocate; one author identifies as an AI artist and culture-bearer; and one author who identifies as a Black community-engaged researcher focused on health disparities prioritized by the community, which includes cancer. All co-authors have had lived experience with cancer. Seven have experienced the loss of a loved one to cancer. Four have been a caregiver or primary supporter of a family member going through cancer treatment. Six have participated in intentional cancer prevention behaviors, and five have participated in cancer screenings. One co-author has worked in cancer etiology research, examining the relationship between environmental exposures and carcinogenesis.

It is vital to acknowledge the historical and ongoing impact of colonization, which has influenced Indigenous health outcomes and access to resources. This study recognizes the intersection of historical trauma, cultural resilience, and contemporary health disparities, and although it does not directly address the complex interplay between these factors, it does begin to fill in the gaps in our understanding of social determinants of health as drivers of cancer disparities in AI/AN populations (Melkonian et al. 2022).

2. Results

Ten participants (one male and nine females) submitted ten respective poems. All ten participants reported their tribal affiliation. The poems in this collection represent perspectives, experiences, and/or knowledge shared by individuals who identified as affiliated with the following Tribal nations: Anishinaabe, Cherokee Nation, Haudenosaunee, Leech Lake Chippewa, Oglala Lakota, Omaha Nation, Prairie Band Potawatomi, Santee Sioux Nation, and Sioux.

2.1. Native Wellness Model

As a collection, the poems reflect a holistic perspective on cancer that acknowledges its impact on the mind, body, and spirit within an AI/AN context. Four overarching themes emerged as AI/AN ways of relating to cancer: (1) Cancer does not define me, (2) My body has been colonized, (3) A curse can also be a blessing, and (4) Our place in the circle shifts. Across the four overarching themes, 17 sub-themes emerged, representing inter-tribal AI/AN understandings of cancer (see

Table 1. Overview of themes and sub-themes with examples by construct of the Native Wellness Model (Hodge et al. 2009).

Construct	Theme	Sub-Theme	Example		Poem
Mind	Cancer does not define me. Processing through emotion, learning, and meaning.	Purpose	“In sharing these gifts and helping others heal, We are healed ourselves and find a new place in the circle”		A New Place in the Circle
			“I know my worth, I know my wisdom, I know my freedom, I know that I am going live to see my people smile, My visions become see through”		For What it’s Worth
		Laughter	“laughing while together”		Memories
			“But I will make a joke that I’m late because I’m running on Indian Time.”		Inoperable
		Memories	“my mom tells me stories that keep my memories alive”		Memories
			“Now, the memories will always linger”		Adayesgi
		Heartache	“Especially when we pay our toll with heartache and tears”		A New Place in the Circle
			“Gave me a heart that hurt”		The Hurt We Bear
		Fear	“So many fears inside of me”		Adayesgi
			I wonder… If the worse comes…To conclude this.”		Cancer
		Mental Changes	“the realization a new life has begun.”		A New Place in the Circle
			“my visions become see through”		For What it’s Worth
Body	My body has been colonized. Losing body autonomy.	Physical Changes	“My cells must change to survive”		Cancer
			“My hair looks stringy, but feels thick \\ and heavy”		Inoperable
		Dying or Death	“My father had cancer. I now have no father…my mother had cancer…I now have no mother”		Poem 6
			“the cancer took his life”		Adayesgi
			“By something that means to kill me A symbol of // death or mourning”		Cancer
			“Towards the end”		Poem 3
		Physical Pain	“Seeing cancer cause physical pain and often ones \\ “looks “to change”		The Hurt We Bear
			“My pale and hurting friend”		Poem 3
Spirit	A curse can also be a blessing. Centering culture and spirituality.	Inner Strength	“I know my worth; I know my wisdom; // I know my freedom”		For What it’s Worth
			“Look at the patient on their best day and recognize how they keep their cup full.”		The Hurt We Bear
		Blessing	“what sometimes seems a curse can also be a blessing”		A New Place in the Circle
			“We do find blessings everywhere”		The Hurt We Bear
		Prayer	“I pray to get help; I pray to cure the past”		Cancer
			“Gave all involved reason to pray and ask // God to remove this strife”		The Hurt We Bear
		Hope	“I know that I am going live to see my // people smile”		For What it’s Worth
			“You and me will both continue to strive”		Poem 3
		Connection to the Beyond World	“We fight ‘til we’ve overcome the enemy // or ‘til we fall and go to dwell with our // ancestors in the other world”		A New Place in the Circle
			“I know she looks over us making sure // we do our best”		Memories
Context	Our place in the circle shifts. Acknowledging and reclaiming kinship systems.	Generational Connections	“If we pass them on, generations who follow // us on this road will better know the way // and not have to stumble in such darkness // as we did”		Adayesgi
			He’s now seated at the right hand // where one day we’ll meet again //well use our friends and family // to bring life to a mend.		Cancer
			Relational Identity	My father had cancer.// I now have no father.// My mother had cancer and I have no siblings.// If I had a sibling, I would be happy.// I now have no mother.	Poem 6
				“she was a mom, a wife, a grandma, not just a breast cancer patient”	Memories
			Colonization	“Not reservation blood. Not Indian blood. // Not my mother’s blood.”; “Not my native // blood but White man blood. Hateful // blood. Racist blood.”	Bad Blood
				“I wander, and think about how tart the berries are // back Home. I think about the land and how much poison it holds, // how it’s probably inoperable. I picture us // sitting on the land’s inoperable poison”	Inoperable

). Within the outer ring, the construct of Context, three sub-themes were identified: Generational Connections, Relational Identity, and Colonization. Within the construct of Mind, five sub-themes were identified: Purpose, Laughter, Memories, Heartache, Fear, and Mental Changes. Within the construct of Body, three sub-themes were identified: Physical Changes, Dying or Death, and Physical Pain. Within the construct of Spirit, five sub-themes were identified: Inner Strength, Blessings, Prayer, Hope, and Connection to the Beyond World.

2.2. Context. Our Place in the Circle Shifts

There are multiple references to the interconnectedness between generations and the significance of familial ties in shaping perceptions of cancer. Within the construct of context, a stanza from one poem reflects the overarching theme that emerged across the collection, which is the awareness that, with cancer: “Our place in the circle shifts.” Acknowledging living relationships in kinship systems, the poems reveal the diverse ways all persons, human and non-human, relate to one another and play interconnected roles in the lived experiences of cancer within AI/AN communities. Three themes were identified in relation to the construct of Context: Generational connections, Relational Identity, and Colonization (Table 1).

The theme of Generational connections revealed connections to ancestors in the past, relatives in the present, and future generations to come. The poems recognized cancer in relation to the following persons or kinship roles: “a mom, a wife, a grandma,” “children,” “grandchildren,” a “father,” “siblings,” “an orphan,” “auntie,” “grandfather,” “doctors,” “patient,” “ancestors,” “spirits” and “friend.” As one poet said, “My father had cancer. // I now have no father. // My mother had cancer and I have no siblings.” These references speak to the multifaceted identities of individuals affected by cancer, emphasizing the importance of recognizing individuals as part of a greater kinship system and seeing humans beyond their diagnosis.

Building on this, multiple references were made to understanding the self and others in connection to people and places. Within the theme of Relational Identity, one quote emphasized the enduring impact cancer can play in familial traditions, where the naming of a daughter reflects the profound influence of lineage and legacy passed down from one generation to the next: “I gave my daughter her first name.” Many passages underscore the desire to guide and support those who follow the same path, aiming to provide a more illuminated journey to prevent and protect others from the past. One poet wrote, “Life is life and it isn’t fair // I will always be by your side,” expressing a commitment to walking alongside others in difficult times. Another poet reflects on the relationship between place and people: “As the winter always brings // Danger with barren lands, // As the sun comes around // To char the Earth again,” invoking the emotional landscape tied to seasons struggle and survival.

The theme of Colonization was seen in the poems’ references to the history of colonizers exerting power over AI/AN people, including descriptions of being controlled or impacted by non-indigenous peoples. The poems shed light on the enduring impacts of historical trauma and the ongoing struggles faced by AI/AN communities. The quotes vividly express complex emotions and reflections related to the colonization experience. One poet wrote, “Not reservation blood. Not Indian blood. Not my mother’s blood,” expressing the tension of identity shaped by imposed definitions of belonging and erasure. Some poems describe a sense of displacement and the internal conflict of belonging to a land that has been colonized, raising questions about identity and a longing for a deeper connection to the ancestral lands. One poet drew a direct parallel between the body and colonized land, writing, “My body has been colonized // By something that means to kill me. // This land has never been truly mine.” More than one poem related notions of genocide and/or colonialism to the ways that cancer metastasizes. It emphasized the importance of reclaiming cultural heritage, identity, health, and wellness.

2.3. Mind. Cancer Does Not Define Me

Within the construct of Mind, a line quoted from one poem submission reflects the overarching theme that emerged across the collection, Cancer does not define me. Participants described the experience of cancer from the perspective of either a person diagnosed with cancer, a loved one of a person diagnosed with cancer, or a care provider of a person diagnosed with cancer. The five sub-themes that reflect the overarching theme are Purpose, Laughter, Memories, Heartache, and Fear (see Table 1). Thus, it illustrates AI/AN understandings of cancer as an experience involving emotional processing, learning, and meaning making. The sub-themes reveal the profound impact of cancer on the mental well-being of individuals.

Across the poems, there was a shared sense of Purpose. Multiple poems included references to motivations, commitments, intentions, aims, goals, and functions in relation to the lived experience of cancer. Poets also expressed determination to live and hope for the future. This is exemplified in the following quote from one poem: “I know my worth; I know my wisdom; I know my freedom; I know that I am going live to see my people smile.” This quote speaks to the resilience and optimism that sustains individuals through the cancer journey. Another poet wrote, “In sharing these gifts and helping others heal//We are healed ourselves and find a new place in the circle.” Together, these expressions highlight purpose not only as a personal strength, but as a connection to others and contribution to healing as a whole.

Laughter emerged as a theme, highlighting its role as a source of joy and connectedness. Passages emphasized the power of shared Laughter, strengthening bonds and fostering a sense of togetherness. One poet wrote, “laughing while together,” while another wrote, “see where happiness and laughter could roam.” Humor was used to navigate cultural experiences and stereotypes, as seen in the playful reference to “Indian time,” showing the resilience and ability to find lightness amidst challenges. Many poems either illustrated the action or sound of Laughter, including jokes as another form of humor, or expressed cheerful Laughter itself.

Memories of persons and places were shared across poems. The diction of many poets reflected the processes of remembering, including acquiring, retaining, and/or retrieving information. Many poems included reflections on interactions, objects, or images that poets described as a recollection from the past or a desire to be remembered in the future. Memories held a significant place within the understanding of cancer, serving as a bridge between the past, present, and future. The poems highlighted the enduring nature of Memories, keeping loved ones alive and providing a sense of continuity. As one poem reads, “my mom tells me stories that keep my memories alive // My memories of her will survive.” The stories shared by relatives contribute to preserving and honoring Memories that reinforce intergenerational connections within the mind.

Many different words were used to describe Heartache or hurt that originated from emotional or non-physical sources. The poems included multiple references to feeling sad. The poets acknowledged cancer’s toll on hearts, souls, and feelings. Quotes revealed the intertwining of “sorrow,” “pain,” “heartache,” and “tears” in the cancer journey. These words shed light on the profound emotional impact of the disease and the shared experiences of grief, loss, and vulnerability. Poets depicted Fear when confronted with the unknown. Writers referenced the intense Fear of uncertain outcomes or unknown situations. One poem reads, “So many fears inside of me.” Poems included references to general ambiguities, unknown aspects of the future, questions, wondering, or a desire to make sense of knowledge or uncertainty. This reflected the uncertainties that accompany a cancer diagnosis. Internal struggles and anxieties were conveyed and associated with Fear of what lies ahead.

Poems elucidated both intellectual and emotional responses, defined as Mental Changes to the perspectives, knowledge, and experiences of cancer within AI/AN communities. For instance, some described the symbolic act of letting go and embracing change. The nuance of mental changes was further portrayed in poem lines, showing the complex emotions tied to intellectual transformation (e.g., “heart that hurt/and understanding when the patient might be curt”), which was another form of change present across poems. Intellectual shifts in perspective were shared in “the realization a new life has begun” and “we learn, we grow with each step.” All poems assigned significance to new information in relation to a human experience of cancer, and all reflected actively seeking to understand and interpret this experience.

The sub-themes of “Cancer does not define me” reflect a process of balancing the significance of lived experiences as they manifest in juxtaposing feelings and thoughts.

2.4. Body. My Body Has Been Colonized

As one poem poignantly noted, “When we hear the word “cancer”//Life changes forever and our place in the circle shifts.” Cancer was presented in place-based ways, such as in “genes,” or in “blood,” or as one poet described, “Oginalii had it in bones//My grandmother in chest//My grandfather in blood//My auntie in her lungs.” Another noted, “I hold my womb in my hands and //think about my poison and how it was removed.” The poems spoke of physical diagnosis (e.g., “leukemia,” “breast cancer”) as well as physical healing. Within the construct of Body, one poem reflects the overarching theme that emerged across the collection: “My body has been colonized.” A central topic that emerged across poems came from multiple expressions of the reality of physical changes as a result of the physical decline that individuals face when confronted with mortality in the context of cancer. All poems referenced some sense of a loss of autonomy or invasion of the Body that created disturbing physical changes and loss. The three sub-themes that indicate the overarching theme are Physical Changes, Healing, Dying, and Death (Table 1). These sub-themes bring to light the profound impact of cancer on the physical well-being and existential aspects of individual’s lives.

Physical Changes were present in the poems’ lines that reference the transformative nature of cancer on one’s physical being. One poet wrote about cancer on the cellular level, highlighting the adaptive response required to navigate the cancer journey. Poems also refer to the body, breath, hair, and cells. They describe how the “fire [cancer] spreads” through “a ravaged body” and “loss of physical abilities;” they described how “vision becomes blurry,” “the breath is weaker,” “breasts feel heavy,” and “hair looks stringy.” Some poems referenced “healing,” acknowledging the power to heal, affirming “we are healed ourselves” or “I may be cured.” Some recognize the power of healthy behaviors and suggest the chance for change, stating, “I wonder… //If I could have//Been kinder,//If I had nourished the//Body I grew to hate…//If I recalled the stories //That saved my life… //If I stayed on the Red Road//Instead of the path of harm…//Which razes the body…//If I would be sitting here.”

Dying was noted in poems’ moving reflections on the existential aspects of cancer. References were made in the poems by describing the process of dying and/or approaching death. One poem spoke to the multifaceted losses experienced, including loss of dignity, physical abilities, and loss of life. Poems often reflected the process and struggles faced during the decline of health. Across the poems, there was a looming presence of Death. Cancer was described as fatal, the bringer of an irreversible end of life. Death was illustrated in descriptions of losing loved ones and the sense of loss of loved ones. One poem described cancer as a symbol of death and mourning.

Physical Pain was common across the collection of poems as it often represented the physical suffering that arises from cancer. It was both constant and consuming, reflecting the chronic toll of the illness on those experiencing it. Pain was expressed through phrases like “pale and hurting,” and “pain is what it causes,” to illustrate the visible ongoing struggles, discomfort, and exhaustion when experiencing cancer. Physical pain was described as enduring throughout the cancer journey.

The sub-themes of “My body has been colonized” revealed the profound impact of cancer on the physical well-being of individuals, highlighting the experience of cancer as fatal and illustrating the process of dying and the resultant death to the body or death to the cancer.

2.5. Spirit. A Curse Can Also Be a Blessing

One poet asked, “Could Tsisdu (Rabbit) have tricked Cancer,//If it was a spirit or living creature?” and another poet pleaded, “To god, I ask to cure the pain I feel.//I asked him for the help//I asked him to heal.” Across all poems, there was an emphasis on the ability to draw upon the strength of “spirit,” “God,” “living creatures,” “ancestors,” and “the one up above” and a common hope in “the other world.” The poems identified traditional values and beliefs as ways to maintain a sense of resolve, strength, and hope in the face of cancer. The poems revealed diverse ways in which spirituality and beliefs play a central role in the lived experiences of cancer within AI/AN communities. Within the construct of spirit, a stanza from one poem reflects the overarching theme that emerged across the collection, which is the understanding that: “A curse can also be a blessing.” Another poem acknowledged this belief in the following stanzas: “We learn, we grow with each step//and those lessons help us in this life.” The five identified sub-themes of Spirit include Inner Strength, Blessings, Prayer, Hope, and Connection to the Beyond World (Table 1). These sub-themes demonstrate the profound spiritual resources individuals draw upon to navigate the challenges of cancer. These themes reflect deep-rooted spiritual traditions, resilience, and interconnectedness with the spiritual realms that shape perceptions and coping strategies related to cancer.

Inner Strength was observed in reference to mental resistance to discouragement or doubt. Poems referenced strength, symbols of strength, inner peace, and determination. One poet wrote, “Look at the patient on their best day and recognize how they keep their cup full,” acknowledging the quiet resilience present even in moments of visible strength. Inner Strength was reflected in the deep acceptance and self-awareness that sustained individuals throughout adversity. The words “brave and fearless” used in another poem convey the unshakable inner strength found throughout the collection. Across the collection, poems spoke to the resilience and confidence that humans can access, allowing them to navigate their experience and perspective of cancer with courage and determination.

Blessings was illustrated in text that revolved around the concept of God’s favor or a person’s sanction or support. At times, this was something asked for and other times this was something to be grateful for. Blessings were seen in poems that acknowledged that wisdom was shown to rise from challenging experiences. Many poems illustrated perspectives that transformed challenges into opportunities for growth, gratitude, and a space to find Blessings even under difficult circumstances. Prayer was highlighted in the form of a solemn request to or communication with a higher power (e.g., Creator/God). Poems included references to seeking help, finding hope, wishing, or to giving thanks. Prayer was a consistent theme across poems. Across the collection, prayer was described as playing a significant role in facing cancer. Many referred to spiritual connections and reliance on a higher power, seeking solace, healing, and guidance through the power of Prayer.

Hope was noted in poetic expressions of feelings of trust, expectations, and desires for something to happen. Hope emerged as a powerful theme in the poems, exuding a sense of optimism and a steadfast belief in a positive outcome. Poets shared diverse representations of unwavering hope. Expressions of hope were both deeply personal and shared. One poet’s individual hope was evidenced as they avowed, “I know that I am going live to see my//people smile.” Another poet shared a collective sense of hope in a statement that encouraged future generations, maintaining, “you and me will both continue to strive.” Poets illuminated hope not only as an emotion but as a force to carry individuals and communities forward.

Connection to the Beyond World was described in the connections between the world we live in now and the world we move into during or after death. This was evident in poems that acknowledged the spiritual connection to ancestors and the belief in a world beyond. Multiple poets infused their writing with a sense of continuity and interconnectedness across multiple dimensions of being, knowing and doing. For example, one poem explained, “We fight ‘til we’ve overcome the enemy//or ‘til we fall and go to dwell with our//ancestors in the other world.” Others referenced the relevance of relatives that had died from cancer in the present; one poem affirmed this in stating, “I know she looks over us making sure//we do our best.”

2.6. Cancer Control Continuum

Participants’ inclusion of cancer stages varied greatly across the cancer control continuum. The most commonly identified stage of the continuum was survivorship and palliative care (90%), followed by diagnosis (80%) and treatment (60%). Less discussed were etiology (40%) and prevention (30%), with the least discussed being detection (20%). Within each of these stages, some themes emerged. These themes are further described in

Table 2. Summary of stages identified and corresponding themes.

Stage	Identified	Themes
Etiology	4 (40%)	Trauma Genetics Environmental Carcinogens
Prevention	3 (30%)	Culture Health Behaviors
Detection	2 (20%)	Mammograms Delayed Detection
Diagnosis	8 (80%)	Blood or Bone Lung Breast Late-stage
Treatment	6 (60%)	Surgery Chemotherapy Targeted therapy
Survivorship and palliative care	9 (90%)	Symptom management Bereavement

.

Etiology. Trauma was identified as a cause of cancer. This included both personal and intergenerational perspectives. Poems discussed healing “past” experiences and the influence of “colonization.” Participants identified the role of genetics (i.e., “genes”) or heritable” causes of cancer through their “ancestors.” Environmental carcinogens identified as “land,” and its “poison” were also identified as a potential cause.

Prevention. Culture was identified in the context of prevention, as evidenced in one poem’s statement that “the elders once knew” or the discussion of the connection to the “homelands” and identity. Participants identified the need to avoid risk factors, such as “smoking cigarettes,” “child abuse,” “illnesses,” and “alcohol” And shared protective factors support health behaviors, which included sobriety “the Red Road” and sharing about cancer (e.g., “if we pass them on, generations who follow us on this road will better know the way”) to emphasize the importance of health behaviors in relation to cancer prevention.

Detection. Cancer screenings and detection methods were less discussed by participants. However, one participant identified “mammograms,” or a method of early detection for breast cancer. And one other participant reflected on the absence of early signs or awareness by stating, “we didn’t see it coming,” pointing to a theme of delayed detection.

Diagnosis. Participants broadly discussed the identification of “cancer.” Poems did not include descriptions of this process, but rather the revelation of a new diagnosis or the discussion of family history of cancer types, including those of the blood/bone, lung, breasts. When specified, the cancer types shared were “Leukemia” (i.e., “blood” or “bone”), “breast”, and “lung.” One participant shared a late-stage diagnosis while other participants alluded to a late stage by sharing that the cancer “spread” or stating, “we had no time to prepare.”

Treatment. No specific treatments were identified by participants, but rather discussed indirectly as the removal, alluding to surgery or associated symptoms of chemotherapy treatment, such as hair loss. Moreover, there was a discussion about targeted therapy or the ability to receive treatment based on the cancer diagnosis.

Survivorship and palliative care. This was the most commonly identified stage with poems that described “inoperable” cancer and stanzas that alluded to palliative care in hospital rooms. Participants also shared the survivor perspective of symptom management as “surviving”, which included going to the doctor and living beyond a cancer diagnosis.

3. Discussion

This study sought to elucidate AI/AN understandings of cancer as voiced through poetry. Poetry as a method in arts-based cancer research in this study proved to be a culturally respectful way to share and reflect on their lived experiences of cancer. Although arts-based cancer research methods have been utilized with Indigenous communities to explore cancer, literary art forms, like poetry, have not been previously investigated (The author). Through a qualitative analysis of poems against two frameworks, the Native Wellness Model and the Cancer Control Continuum, themes emerged to provide localized insights into these understandings as experiences and knowledge (Hodge et al. 2009; National Cancer Institute (NCI) 2025). Framing analysis with the Native Wellness Model allowed us to interpret qualitative data through a lens that honors Indigenous values and lived experiences and in holistic, relational and strength-based ways. Additionally, the Cancer Control Continuum aligned qualitative findings with established public health and clinical priorities, making it more actionable for healthcare providers, policy makers and advocacy groups.

When investigating experiences through the Native Wellness Model, the poetry findings revealed the ways AI/AN people make meaning of cancer across the four interconnected constructs of the Native Wellness Model: spirit, body, and mind and context (Coates et al. 2006). For example, one poem reads, “with pain, heartache, and tears.” The poems conveyed both the internal (e.g., “heartache”) and external (e.g., “tears”) experiences, including shifts in physical appearance— “seeing cancer cause physical pain and often one’s looks to change”—that compounded the emotional weight of the diagnosis. This physical suffering was not isolated but deeply intertwined with the emotional and spiritual journey of those living with or witnessing cancer. Moreover, it is important to emphasize that “mind” in this context represents a broader understanding than is commonly considered among mental health professionals in the US (Graham 2002). This theme highlights the importance of acknowledging and integrating spiritual perspectives in AI/AN cancer care and support services that recognize and honor the significance of holistic approaches that promote spiritual dimensions of healing and well-being.

In exploring the Mind construct, participants shared insights into the Purpose, Laughter, Memories, Heartache, and Fear of the unknown associated with their cancer experiences, highlighting the profound impact of cancer on the mental well-being of individuals. These insights were not strictly dependent on mental health but also overlapped with physical and spiritual dimensions. The body construct captured the physical realities of cancer by expressions of Physical Changes, Physical Pain, and Dying or Death. It was often found that sub-themes associated with the body were often described along with sub-themes associated with the spirit. This aligns with AI/AN views that our bodies are on a spiritual journey rather than the other way around (Bang et al. 2009). The spirit theme encompassed Inner Strength, Blessings, Prayer, Hope, and a Connection to the World Beyond, underscoring the importance of spirituality and resilience in navigating the cancer journey. Many poems wove together spiritual beliefs with reflections of the body and mind. Spirit highlights the call for culturally grounded care models that embrace holistic healing practices, honoring the spiritual dimensions to AI/AN cancer experiences.

Context highlights the importance of acknowledging and integrating multiple perspectives in AI/AN cancer care and support services and recognizing and honor the significance of whole-of-community approaches to promoting health, healing, and well-being. The poems underscore how sharing wisdom and healing gifts, as the act of helping others, also brings personal healing and a sense of finding one’s place within the circle of life. The poems also emphasized the collective responsibility of passing knowledge and experiences to future generations. Lastly, the context theme explored the themes of Generational Connections, Relational Identity, and the impact of Colonization on Indigenous communities. This emphasizes the understanding that people are not isolated beings but, rather, exist in a particular context (Cross 1997). These results provide a rich and nuanced understanding of how cancer is perceived, experienced, and conceptualized within Indigenous communities, emphasizing the interplay between mental, physical, spiritual, and contextual dimensions.

Descriptions of cancer across the Cancer Control Continuum varied greatly across the stages, with discussion focusing on Palliative Care or Survivorship, Diagnoses, and Treatment. This may reflect the realities of cancer experiences for AI/AN communities, whereas AI/ANs are more likely to be diagnosed as late-stage and have higher rates of cancer deaths when compared to other communities (Roubidoux et al. 2022). Late-stage, Targeted therapy, Symptom management, and Bereavement further affirmed these reflections of lived experiences with these identified disparities. Participants identified specific types of cancer from which research has demonstrated AI/AN people experience disproportionately high mortality rates when compared to White communities in the US (Islami et al. 2022; White et al. 2014).

Hair Loss was specifically described in multiple poems. Hair is of cultural significance and importance in AI/AN culture (Burhansstipanov et al. 2010). Hair loss is an important consideration in the Treatment of cancer in AI/AN peoples (Burhansstipanov et al. 2010). Surgery indicates the removal of cancer as part of comprehensive cancer care and treatment. When considering cancer treatment, the literature suggests an evident need for efforts to support AI/AN patients in receiving high-quality cancer care and treatment (Guadagnolo et al. 2017). In one study, AI/AN patients with breast cancer were found to be more likely to have mastectomies (i.e., surgical removal of the breast) despite the stage at diagnosis when compared to White communities (Erdrich et al. 2022). The identification of these stages also centered the experiences in clinical or medical settings, providing unique perspectives, as identified through the Native Wellness Model, on the experiences of AI/ANs seeking cancer care that could be further explored through poetry.

The poems included less discussion around etiology, prevention, and detection, respectively. Trauma, Genetics, and Environmental Carcinogens were identified as the understandings of where the cancer is coming from or the Etiology. There is little investigation of the relationship between Trauma and cancer, despite our awareness of the role of stress on health and cancer (Lempesis et al. 2023; Eckerling et al. 2021). The salience of trauma among the poems calls attention to opportunities for future research. We know that some cancers have hereditary components; however, carcinogenesis is a complex interplay of genetics, environmental exposures, and health behaviors (Devi 2004). Additional information regarding how cancer develops specifically in AI/AN populations would shed light on the relevance of this complex process. Moreover, Genetics, as described by poets, is not mutable, so the identified role Genetics play in cancer development should be countered to ensure that this does not contribute to a fatalistic view of cancer. Alternatively, this description could derive from a fatalistic view of cancer described previously within AI/AN communities (The author). AI/AN communities disproportionately experience contamination of land with Environmental Carcinogens and are far behind other communities in the US in addressing this contamination, which likely impacts cancer risk (Hoover et al. 2012).

Detection was the least identified stage of cancer, with only one detection method identified, Mammograms. Breast cancers, the cancers primarily identified through mammograms, are a leading cancer type among AI/AN communities (White et al. 2014). However, there are many other cancers, including those identified by poets under Diagnosis (e.g., lung cancer), that disproportionately impact AI/AN communities (White et al. 2014). Lung cancer is particularly of concern because of its continued status as the leading cancer death in the US (Kratzer et al. 2024). This indicates an opportunity to develop and disseminate tailored resources for the recommended guidelines for cancer screening and early detection for AI/AN communities that center on additional cancer types.

An important consideration in this study is the complexity of Indigenous identity. All participating poets self-identified as AI/AN. However, we recognize that identity within Indigenous communities is multidimensional and both a matter that is deeply personal and pointedly communal, often shaped by lived experience, place, family, clan, tribal governance and federal governance. There is a possibility that some poets may not be enrolled in a federally recognized tribe or meet a blood quantum, yet that does not discredit their lived experiences, cultural ties, and community involvement to affirm their Indigenous identity.

This study also focused on exploring cancer-related themes and understandings within Indigenous communities. It did not dive deeply into the specific cultural contexts, practices, and interventions integral to Indigenous healing and support. Future research could explore these aspects in greater detail to enhance cancer interventions’ cultural relevance and effectiveness in Indigenous communities.

Limitations

While this study contributes valuable insights into the understanding of cancer in AI/AN communities through poetry, it is essential to acknowledge certain limitations. Firstly, the sample size of this study, consisting of 10 poets from nine different tribes, may not fully capture the diverse range of perspectives and experiences within AI/AN communities across the US or Indigenous communities across the globe. The findings are specific to the participants and may not be generalizable to whole populations. Future studies should aim for more extensive and diverse samples to obtain a broader representation of Indigenous voices. Additionally, using poetry as the primary data source may introduce subjectivity and interpretation bias. The meanings and nuances conveyed in the poems are open to different interpretations, and the analysis process involves subjective judgments made by the researchers. While efforts were made to ensure rigor and validity through a systematic analysis approach, the subjectivity of qualitative research should be acknowledged.

Another limitation relates to the ability to capture the direct experiences and perspectives of individuals who created or were impacted by these poems. This study also focused on exploring cancer-related themes and understandings within Indigenous communities. It did not dive deeply into the specific cultural contexts, practices, and interventions integral to Indigenous healing and support. Future research could explore these aspects in greater detail to enhance cancer interventions’ cultural relevance and effectiveness in Indigenous communities.

4. Materials and Methods

Poetry is an innovative research tool (Faulkner 2009) that has long served as a powerful form of expression and cultural preservation, including oral tradition, in many Indigenous communities (Maracle 2014; Manathunga et al. 2020). Poetry has a unique way of capturing the essence of individual stories, emotions, and perspectives (Faulkner 2009). It has the potential to evoke empathy and understanding in readers, enabling individuals to connect with the experiences of others as if they were their own. Poetry can inherently be educational in understanding who we are, where we come from, and where we may go in a rapidly changing world (Cajete 2017). Poetry “appeals to our senses and opens our hearts and ears to different ways of seeing and knowing,” conveying poignancy, musicality, rhythm, mystery, and ambiguity (Butler-Kisber 2010). Indigenous researchers emphasize the importance of storytelling, narrative, and creative expression as methodologically rich ways to resist colonial academic norms and center Indigenous worldviews (Kovach 2015; Wilson 2020; Rookwood et al. 2022).

4.1. Participant Eligibility and Recruitment

To be eligible to participate in this study, participants were required to self-identify as AI/AN. Participants were recruited to submit poetry through the distribution of a recruitment flyer. Three members of our research team (MA, AR, and RI) created a recruitment announcement calling for individuals who identify as AI/AN to submit a poem, in any format, that shared individual perspectives, experiences, and/or knowledge about any aspect of cancer across the cancer control continuum. Included in the recruitment flyer was the following example poem, written by a member of the research team (Figure 2), to offer an accessible starting point for potential participants. Its inclusion was intended to inspire participants, especially those unfamiliar with poetry, by demonstrating that submissions could be creative, personal, and grounded in cultural experience. The flyer also included researcher’s contact information and notification of a $25 gift card honorarium for submission.

Recruitment occurred between April and June 2022. Flyers were distributed as printed handouts at three events (a powwow, a school-based event, a community-based event) and posted at local colleges and universities, an Indian Health Service (IHS) Urban Indian Organization, and an IHS unit. Flyers were also distributed electronically via email to research team contacts with regional and national organizations that focus on arts, cancer, and/or AI /AN health (e.g., the American Indian Cancer Foundation), who then distributed them to their contacts through their respective channels of communication, including social media (e.g., Facebook, Instagram) and tribal newsprint. Ethical approval for this study was obtained from the University of Nebraska Medical Center (IRB 0898-21-EX). These poems were published in a separate anthology (Abney et al. 2025). All authors consented to the publication of these poems as part of participation in the study and communication about the publication process was shared with all participants through email and mail. Additionally, all poems, in full, are publicly available in a book, American Indian understandings of cancer: An anthology of poetry (Abney et al. 2025).

4.2. Qualitative Analysis

The primary analysis team was composed of authors on this manuscript (MA, RI, and AR). Employing framework analysis, the analysis team used a deductive-inductive data analysis approach, deductively coding poetry themes according to the four core constructs (Mind, Body, Spirit, and Context) of the Native Wellness Model (Hodge et al. 2009) and inductively coding emergent themes from common phrases, patterns of expression, recurring ideas, resonant metaphors that emerged within each of these themes. The analysis team completed the same approach sequentially with the Cancer Control Continuum, including cancer Etiology, Prevention, Detection, Diagnosis, Treatment, Survivorship and Palliative Care (National Cancer Institute (NCI) 2025).

Each analysis team member independently read and re-read all submitted poems before coding each submission. The primary analysis team met three times to discuss discrepancies in coding, which were resolved through ongoing, iterative discussions until thematic saturation was reached (Creswell and Poth 2016). All coded data were categorized to identify overarching themes and sub-themes that emerged from the poetry. Preliminary findings and interpretations were presented to the CABMA team (MG, RM, ST) to ensure that the identified themes and interpretations resonated with a broader community and to obtain any further insights or perspectives. Final themes and sub-themes were achieved through consensus with the entire team. This systematic qualitative analysis approach allowed for an enhanced, comprehensive exploration of the rich cultural perspectives and insights from the poetry collection, contributing to a nuanced reflection on AI/AN understandings of cancer.

5. Conclusions

The findings in this study highlight the unique perspectives of AI/AN poets with regard to cancer. The analysis revealed themes and sub-themes related to mind, body, spirit, and context, offering a nuanced exploration of AI/AN perspectives on cancer. The findings highlight the significance of cultural values, traditional knowledge, and the interconnectedness of physical, emotional, and spiritual well-being in addressing the impact of cancer within AI/AN communities. The poetry revealed varied knowledge and experiences across the Cancer Control Continuum, with survivorship and palliative care most commonly represented, while fewer poems addressed detection, etiology, and prevention. This pattern reflects the lived realities of many AI/AN individuals and highlights what is salient to AI/ANs, suggesting particular areas where further attention and resources may be needed.

Notably, the findings of this research study call for more research, collaboration, and investment in Indigenous experiences and understandings of cancer and support a call for future cancer research, prevention and treatment to reduce cancer disparities in this population. By honoring, understanding, and amplifying AI/AN voices and perspectives, we can work towards reducing cancer disparities, promoting holistic health, and cultivating culturally responsive healthcare practices that better serve Indigenous Peoples. Poetry allows for expressing complex emotions, experiences, and cultural nuances that might not be fully captured through traditional research methods. Art-based cancer research enhances the acceptability of research and cultural responsiveness of studies, offering a space for Indigenous voices to be heard and valued. The implications of this study should extend beyond academic research. Understanding AI/AN communities’ unique perspectives and understandings of holistic frameworks can inform the development of more effective interventions that respect cultural values, honor traditional healing practices, and address the underlying factors contributing to health disparities.

This research contributes to the broader discourse on health disparities among AI/AN populations in the US and highlights the impact of colonization and historical trauma on Indigenous health outcomes. It emphasizes the need for collaborative efforts between AI/AN communities, researchers, policymakers, and healthcare providers to address these disparities and promote health equity. The findings from this study provide a foundation for future research and practice. Continued exploration of AI/AN cancer understanding through art-based research, like poetic approaches, can deepen our understanding of cultural resilience, promote community empowerment, and inform strategies for improving cancer prevention, early detection, and survivorship outcomes among Indigenous Peoples.

In conclusion, this study demonstrates the power of poetry as a vehicle for capturing Indigenous perspectives on cancer. It calls for a shift in research paradigms to embrace more inclusive and culturally sensitive approaches, recognizing the richness and wisdom that Indigenous communities bring to the understanding of cancer and its impact on individuals, families, and communities. By amplifying AI/AN voices, respecting cultural values, and fostering collaboration, we can work towards reducing cancer disparities and advancing health equity for all. In closing, we urge scholars and practitioners to consider poetry a valid and rigorous form of inquiry. Its capacity to convey complexity, emotion, and lived experience makes it a powerful tool for exploring and expressing knowledge, particularly within communities and contexts where traditional academic forms may fall short. Embracing poetic scholarship not only expands our understanding of what counts as knowledge and who gets to produce it but also deepens our insight into cancer—revealing the diverse ways it is perceived, experienced, and expressed across communities.