Abstract
Great Plains American Indians living in reservation communities suffer some of the highest mortality disparities in the US, but culture-centric palliative care can ease the burdens of serious illness and improve end-of-life decision-making. Common misunderstandings about palliative care, as well as historical and cultural barriers, stand as obstacles to its widespread use. Therefore, the aims of this interdisciplinary report (American Indian and non-American Indian researchers) are to share results from reservation community Talking Circles used to guide the design of a culture-centric message to promote and educate about palliative care within three Great Plains Tribal communities. This deductive content analysis employed the three characteristics of Larkey and Hecht’s (2010) narrative as culture-centric health promotion model: engaging stories, engaging characters, and cultural embeddedness. Our participants’ narratives corresponded with all three tenets of the model and may serve as an effective guide for creating palliative care messages. Therefore, the model served as a valuable mechanism to gather stories that can serve in the development of culture-centric messages that promote and educate about palliative care for these three Great Plains Tribal communities.
American Indians (AIs) suffer some of the highest health and mortality disparities in the US (Espey et al., 2014; Indian Health, 2019). This suffering could be reduced through palliative care, a form of specialized patient-/family-centered interventions designed to enhance the quality of life for persons with serious illness and their caregivers (Center to Advance Palliative Care, n.d.). Yet a number of common myths and misunderstandings surround this unique subset of the medical field, creating barriers to care (Aldridge et al., 2015). These myths include the commonly-held belief that palliative care is only for cancer, elderly individuals, or those in the final stages of life. In addition, people often believe this form of medicine is strictly for pain management, merely offering the sufferer high doses of opioid medication. In actuality, palliative care offers symptom management, advocacy, and support for patients as well as their families.
Beyond these myths, AI people experience additional barriers against access to and use of palliative care. Historical and cultural obstacles lead to mistrust and misperceptions among AIs and healthcare workers, severely limiting the use of palliative services for seriously ill Great Plains AIs living in reservation communities (Browne et al., 2016; Isaacson et al., 2015; Isaacson, 2017; Isaacson et al., 2023). Moreover, health professionals’ knowledge about AI palliative care beliefs, perceptions, and awareness is low, with minimal research regarding effective messaging strategies to increase palliative care awareness and understanding (Avalos, 2021; Isaacson et al., 2023; Running Bear et al., 2019). Therefore, the aim of this interdisciplinary report (AI and non-AI researchers, health communication experts, nursing scholars, media professionals, and public health professionals) is to share results from three reservation community Talking Circles used to guide the design of a culture-centric message to promote and educate about palliative care.
The Narrative as Culture-Centric Health Promotion Model
The narrative as culture-centric health promotion model (NCCHP) (Larkey & Hecht, 2010) provides a framework “to guide the development and testing of the narrative characteristics and psychosocial mediators of behavior change in a broad range of health interventions” (p. 114). This model places culture at the heart of message design, beginning with the culture when creating messages, as opposed to superimposing cultural elements upon an existing message. The culture-centric approach asserts that effective and respectful health promotion messaging requires an understanding of the cultural group seeking health intervention and that culture is within the stories of its members.
Community-based, culture-centric collaboration is vital in fostering storytelling that evokes the essential narrative characteristics upon which effective health promotion messaging can be built: 1) Engaging stories that are appealing or interesting enough to enhance receivers’ sense of transportation [when an audience member feels immersed in the story (Green & Brock, 2000)], 2) engaging characters that are realistic, likeable, and similar to the audience members to enhance their sense of identification [when the receiver can see themselves reflected in the story’s characters (Cohen, 2001)], and 3) cultural embeddedness [containing “cultural cues” that prompt the receiver, “evoking a sense of cultural relevance” (Larkey & Hecht, 2010, p. 123)]. Numerous studies have demonstrated the effectiveness of including these principles, which “work in a variety of laboratory, theater-like, and informal contexts, producing attitude changes” (Larkey & Hecht, 2010, p. 124).
Because these elements enhance health promotion messages’ potential impact on audience attitudes, beliefs, and behaviors including whether they are likely to share the message with others (Larkey & Hecht, 2010), we needed to gather stories from members of the AI reservation communities involved with our project. Analyzing these narratives through the lens provided by the three elements of this model can then help us determine the best ways to include them in future messages that promote and teach about palliative care in their communities. Therefore, the following research question guided our analysis:
RQ: How can analysis of Great Plains AI Talking Circle data, as analyzed through the tenets of the NCCHP, be used to develop culture-centric narrative messages to promote palliative care?
Materials and Methods
Our team of AI and non-AI researchers employed the principles of community-based participatory research [CBPR] (Israel et al., 2013; Israel et al., 2008). Central to CBPR is the community, where members actively engage and contribute to the research process and work together with the research team. In this project, Tribal members from three Great Plains Tribal communities were active members of an existing Community Advisory Board (CAB) who had worked collaboratively with the research team since 2019. Therefore, all members understood the concept of palliative care and had developed trust and mutual respect with the research team (Isaacson et al., 2023). We then partnered with these three Tribal communities and received ethical approval from our organization’s Institutional Review Board (IRB), the Tribal Council and/or the Tribal Research Review Board for each of these Tribes, and the Great Plains Area Indian Health Service IRB
After obtaining informed consent from participants, we engaged in three Talking Circles (one per community) to gather narratives from seriously ill Tribal members or their caregivers. To ensure the stories the participants shared would be told in a way that honors them, Talking Circles were selected as the best way to gather this information. Talking Circles are an Indigenous methodology built on trust and respect, providing a platform for sharing openly and honestly (Chilisa, 2020a, 2020b). We based the analysis on the three key elements of the NCCHP framework. These elements were used as the three themes, determining how we would describe or depict 1) engaging characters in our message, 2) what stories would resonate with community members, and 3) what cultural imagery and ideals would help them identify with the message.
Data collection
To develop culture-centric narrative messages to promote palliative care, we first needed to understand the journey of serious illness from the perspectives of Tribal members experiencing serious illness or their caregivers. The CAB retooled questions for the Talking Circle conversation guide (Table 1) and provided direction for the recruitment of participants. Participants were recruited from May 2023 through June 2023 with the following requirements: 1) 18 years or older, 2) self-identify as AI, and 3) have a serious illness (e.g., cancer, heart disease, kidney disease), or be a caregiver of someone with a serious illness.
For this pilot study, we proposed a sample size of eight for each of the three Talking Circles (N = 24). We conducted one Talking Circle per reservation community. To help participants become comfortable with the research team, we began each Talking Circle with a prayer followed by a meal. We recorded each 90–120 minute Talking Circle and kept field notes.
Data analysis
A registered transcription agency transcribed the audio-recordings, and a team member reviewed them for accuracy. The narrative data was organized using Nivo12 (NVivo qualitative analysis software, 2018). Two members of the research team (AI and white) independently reviewed and coded the transcripts using deductive content analysis (Elo & Kyngas, 2008) and categorized the themes based on the three elements of the NCCHP: engaging characters, engaging story, and cultural embeddedness (Larkey & Hecht, 2010). The team met to discuss their initial codes and themes until they reached a consensus, then together identified supporting narratives that aligned with the themes. The research team shared their analysis with the CAB and received positive feedback, along with ideas to consider for enhancing cultural embeddedness.
Results
A total of 28 AI individuals (21 females and 7 males) aged 22 – 81 years participated in the Talking Circles (Table 2). The themes are presented within the three categories: engaging characters, engaging story, and cultural embeddedness.
Engaging characters
The themes identified in this category were: gender, age, and role. These relatable, engaging characters would be either male or female and comprise early adulthood, middle-age, and elderly. They would share common roles as members of a family and community, or individuals with a serious illness.
Engaging story
Our participants shared their personal stories of having a serious illness or caring for someone with a serious illness. Across all three reservation communities, participants expressed: a) the isolation of serious illness; b) the importance of privacy; c) the role of family; d) the art of showing up; and e) that palliative care must be defined and linked to assistance.
Isolation of serious illness
The message will need to begin with describing how isolating illness can be. Many participants described how family and friends quit visiting once they were diagnosed or how they reached out and visited others who had no support. One participant stated:
…when I tried to talk to people about what happened with my heart, “Oh!” …and – and that’s the last I hear from them, you know, because it was scary. They don’t want to hear that I almost died.
Another shared how when seriously ill individuals transfer to care centers, she befriends them:
“I become their friends, because a lot of those go to the [redacted location], nobody goes over there to see them.”
The importance of privacy
Privacy is critical to protection, especially within this AI population. This is especially true when the illness has first been diagnosed.
…we’re such a private people. Native Americans, I think are such a private people. We don’t want [sic] to know that we’re struggling. Oh, here they go, complaining again. Complaining again, they need this, they need that. Why can’t they just get it done themselves? Why can’t they toughen up?…you get tired of getting your hands slapped for asking for things when they should be already there available. My dad was very private too.
Another expressed: “I didn’t want no one to know what was going on with me, you know. I didn’t tell my family.”
The role of family
Family plays a crucial role in the care of loved ones who are seriously ill. Many shared that caring for your family is, “just what you do,” even if the caregiving has become too taxing.
I feel like a lot of our people don’t reach out for assistance when we’re the caretakers because that is our responsibility and that’s always been something that’s ingrained in our people is you take care of your family and you do what you have to do and you don’t ask for help because that is my mother, that is my child.
One participant cried as she shared:
I couldn’t go in and tell anyone what I was going through because I’d be the bad daughter. How dare you complain? How dare you complain about taking care of your dad? But it put a lot of stress on me, and my dad could see that.
The art of showing up
Our participants discussed the importance of “showing up” when someone is experiencing serious illness. They stressed that if they had to ask for you to help, then they truly didn’t want you there. One participant simply stated, “If they’re gonna come, they’re gonna come. You don’t have to ask them.” Another shared, “But family members in our way of life, if they’re gonna come to you, they’ll be there.” One participant eloquently explained:
…but they’ll be there for you, whether it’s to feed you, to drive you, to sit with you, to go with you and…Cry with you… to hold you so you don’t fall off a table or whatever it is, that person will be there without you asking.
Palliative care must be defined and linked to assistance
Palliative assistance is about support, whether that is simply acknowledging that this person has a serious illness and/or that you are the caregiver of someone with a serious illness. Acknowledgement means that I “see you, and I’m listening.”
“Tell me your story. Tell me what’s happening, what’s going on.”…Because we - I don’t care where you are in your story, that we still need people to hear us. We still need to support you. We still need to be with you. We need to be able to touch you and let you know that you’re with us. You know, that’s important.
Another stated:
That would take a load off of our people’s shoulders, our caregivers, because like she said, a lot of times they’re forgotten, the people that take care of them. And we don’t do it for the perks, or the benefits. We do it because we love them but we need help sometimes too.
Cultural embeddedness
The message must include aspects of the Great Plains AI culture. CAB members shared the following ideas: prayer flags, tobacco ties, smudging with sage, wrapping in a star quilt, and sacred spiritual sites.
Discussion
Our team recognized that to increase knowledge about, awareness of, and intentions to discuss palliative care among AIs, and to advance palliative care in AI communities, it was critical to develop culture-centric messaging in collaboration with these communities. Our findings demonstrated that, by grounding this work in the NCCHP model (Larkey & Hecht, 2010), we could gather the essential elements critical to the formation of a culture-centric message that would resonate with these Tribal communities. For example, the participants identified as men and women, were a variety of ages, and had personally experienced a serious illness, either themselves or as a caregiver. Therefore, as we plan for the message development, these engaging characters will need to have a wide age range and be either male or female.
To evoke the essential narrative characteristics needed to build effective messaging, we gathered the stories that resonated with the participants as they were shared during the Talking Circles. The participants expressed that serious illness creates a paradox where, in maintaining their privacy, they then become very isolated. Thus, family integral to this care are expected to “just show up” and, due to historical trauma, have become reluctant to ask for help (Isaacson et al., 2023). Lastly, our CAB identified several specific cultural cues that would induce a sense of cultural relevance to help the audience see themselves reflected in our palliative care messaging.
The NCCHP proved to be a useful guide in our question development and analysis. By gathering the vital cultural narratives and understandings and using the three elements necessary for successful culture-centric messages (engaging story, engaging characters, and cultural embeddedness), our palliative care messaging can be “expected to evoke responses that are considered critical mediators in the model” (Larkey & Hecht, 2010) (i.e., transportation and identification leading to the likelihood of the message being shared).
The main limitation of this study is participants were from a single Tribal nation, although they represented three reservations which included six different AI bands. Although the results of this study are not generalizable to other Tribal nations, they are transferable as we have shared our protocol.
Implications and Future Directions
The NCCHP (Larkey & Hecht, 2010) helped us to align our participants’ narratives in a way that may serve as an effective guide for creating culture-centric palliative care messages. These direct quotations will form the heart of our messaging, which will be narrated by male and female Tribal members of varying ages and interwoven with images of sacred importance. Our next steps will include incorporating these items to create our culture-centric message and testing whether it improves Tribal members’ knowledge of, attitudes about, and intentions to use palliative care.
Conclusion
This report employed the three central tenets of Larkey and Hecht’s (2010) NCCHP in a deductive content analysis, seeking elements of those themes in our three AI reservation community palliative care Talking Circles. Findings revealed a variety of examples that fit each element of the model. Therefore, the model served as a valuable mechanism to gather stories that can serve in the development of culture-centric messages that promote and educate about palliative care for these three Great Plains Tribal communities.
Acknowledgments
We would like to acknowledge the contributions of Dr. Jenn Anderson, Professor of Communication Studies at South Dakota State University, who served as Co-PI for the project from its inception through Phase 1. We also wish to thank the members of our Community Advisory Boards from the three reservation communities who worked with us, as well as our Professional Advisory Board composed of palliative care experts in the scholarly and professional communities.
Declaration of Interest Statement
This study has been reviewed and approved by the SDSU Research Integrity & Compliance Office, approval # IRB-2111007-EXP as well as by the IRBs of the three tribes who worked with us. You will notice that within the manuscript, we have not referred to the three reservations or the tribes by name. This is in accordance with stipulations set forth by the tribes as well as by the Great Plains Tribal Leaders Health Board.
This research was supported by the National Institutes of Nursing Research of the National Institutes of Health: R21NR020383. Portions of these findings were presented at the 2024 annual convention of the Western Institute of Nursing, Salt Lake City, Utah, United States. The authors report that there are no competing interests to declare.
Appendix A
Table 1.
Talking Circle Conversation Guide
| 1. | How have relatives (or you) in your community experienced the journey of serious illness? |
| 2. | What kind of support do/did they have? (Probe) |
| 3. | We are trying to develop palliative care in your area. What do you think would be the best way to share with others what palliative care is and how to get it? |
Appendix B
Table 2.
Participant Demographics1
| Reservation | Age | Gender | Chronic Illness | Self | Caregiver |
|---|---|---|---|---|---|
| A | 40’s | F | Cancer, COPD*, SUD** | X | |
| A | 40’s | F | Diabetes, heart disease, hypertension | X | |
| A | 60’s | F | Breast & skin cancer | X | |
| A | 60’sa | F | Cancer, CKD***, depression | X | |
| Depression, heart disease obesity | X | ||||
| A | 50’sa | F | Cancer, CKD*** | X | |
| COPD*, depression, diabetes, hypertension, immune system issues obesity | X | ||||
| A | 50’sa | F | Cancer, COPD*, diabetes, hypertension | X | |
| Cancer, COPD*, hypertension | X | ||||
| A | 50’sa | M | Physical disabilities | X | |
| Hypertension, physical disabilities | X | ||||
| A | 50’s | M | CKD***, COPD*, depression, diabetes, heart disease, hypertension | X | |
| A | 60’sa | M | Stroke | X | |
| SUD** | X | ||||
| A | 40’s | M | Lung cancer, diabetes, stroke | X | |
| B | 50’sa | F | Hypertension | X | |
| Cancer, hypertension, SUD** | X | ||||
| B | 80’s | F | Cancer, diabetes, hypertension | X | |
| B | 70’sa | F | Cancer, diabetes | X | |
| Cancer, diabetes, arthritis, atrial fibrillation | X | ||||
| B | 70’s | F | Cancer | X | |
| B | 40’s | F | Diabetes, heart disease, hypertension, SUD** | X | |
| B | 30’s | F | COPD*, heart disease | X | |
| Depression, diabetes | X | ||||
| B | 70’s | F | Diabetes, heart disease, hypertension | X | |
| C | 40’s | F | CKD***, hypertension | X | |
| Diabetes | X | ||||
| C | 40’s | F | Alzheimer’s, dementia, depression, SUD**, breast cancer | X | |
| Hypertension, immune system disorder | X | ||||
| C | 50’s | F | Cancer, diabetes, immune system issues, obesity, SUD** | X | |
| C | 40’s | F | Not completed | ||
| C | 40’s | F | Cancer, depression, diabetes, heart disease, hypertension, SUD** | X | |
| Depression, obesity | X | ||||
| C | 30’s | F | Depression, diabetes, hypertension | X | |
| Diabetes, hypertension, obesity, stroke | X | ||||
| C | 20’s | F | Hypertension, obesity | X | |
| C | 60’s | F | Alzheimer’s, cancer, CKD***, dementia, depression, heart disease, immune system issues, stroke, SUD** | X | |
| Diabetes, hypertension, obesity | X | ||||
| C | 70’s | F | Cancer, COPD*, diabetes, hypertension, immune system issues, stroke, SUD** | X | |
| Cancer, hypertension, immune system issues | X | ||||
| C | 20’s | M | CKD*** (on dialysis) | X | |
| C | 70’s | M | SUD** | X | |
| Cancer, diabetes | X |
Note:
To protect participant confidentiality, age given in decade only.
Chronic Obstructive Pulmonary Disease (COPD),
Substance Use Disorder (SUD),
Chronic Kidney Disease (CKD)
Caregiver
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