Great Plains American Indians' Perspectives on Patient and Family Needs Throughout the Cancer Journey.

PURPOSE: To explore the perspectives on patient and family needs during cancer treatment and survivorship of American Indian (AI) cancer survivors, caregivers, Tribal leaders, and healers. PARTICIPANTS & SETTING: 36 AI cancer survivors from three reservations in the Great Plains region. METHODOLOGIC APPROACH: A community-based participatory research design was employed. Postcolonial Indigenous research techniques of talking circles and semistructured interviews were used to gather qualitative data. Data were analyzed using content analysis to identify themes. FINDINGS: The overarching theme of accompaniment was identified. The following themes were intertwined with this theme: (a) the need for home health care, with the subthemes of family support and symptom management; and (b) patient and family education. IMPLICATIONS FOR NURSING: To provide high-quality cancer care to AI patients in their home communities, oncology clinicians should collaborate with local care providers, relevant organizations, and the Indian Health Service to identify and develop essential services. Future efforts must emphasize culturally responsive interventions in which Tribal community health workers serve as navigators to accompany patients and families during treatment and in survivorship.

"Calling the Spirit Back:" Spiritual Needs Among Great Plains American Indians.

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.

Factors Influencing Palliative Care Access and Delivery for Great Plains American Indians.

CONTEXT: Despite the known importance of culturally tailored palliative care (PC), American Indian people (AIs) in the Great Plains lack access to such services. While clinicians caring for AIs in the Great Plains have long acknowledged major barriers to serious illness care, there is a paucity of literature describing specific factors influencing PC access and delivery for AI patients living on reservation land. OBJECTIVES: This study aimed to explore factors influencing PC access and delivery on reservation land in the Great Plains to inform the development culturally tailored PC services for AIs. METHODS: Three authors recorded and transcribed interviews with 21 specialty and 17 primary clinicians. A data analysis team of seven authors analyzed transcripts using conventional content analysis. The analysis team met over Zoom to engage in code negotiation, classify codes, and develop themes. RESULTS: Qualitative analysis of interview data revealed four themes encompassing factors influencing palliative care delivery and access for Great Plains American Indians: health care system operations (e.g., hospice and home health availability, fragmented services), geography (e.g., weather, travel distances), workforce elements (e.g., care continuity, inadequate staffing, cultural familiarity), and historical trauma and racism. CONCLUSION: Our findings emphasize the importance of addressing the time and cost of travel for seriously ill patients, increasing home health and hospice availability on reservations, and improving trust in the medical system. Strengthening the AI medical workforce, increasing funding for the Indian Health Service, and transitioning the governance of reservation health care to Tribal entities may improve the trustworthiness of the medical system.

Utilizing the Consolidated Framework for Implementation Research to Explore Palliative Care Program Implementation for American Indian and Alaska Natives throughout the United States.

Background: A significant shortage of palliative care (PC) services exists for American Indian and Alaska Native people (AI/ANs) across the United States. Using an implementation science framework, we interviewed key individuals associated with AI/AN-focused PC programs to explore what is needed to develop and sustain such programs. Objectives: To identify facilitators of implementation and barriers to sustainability associated with the development of PC programs designed for AI/ANs across the United States. Methods: We interviewed 12 key individuals responsible for the implementation of AI/AN-focused PC services. The Consolidated Framework for Implementation Research (CFIR) guided data coding and interpretation of themes. Results: We identified nine themes that map to CFIR constructs. Facilitators of implementation include high tension for change and respecting cultural values. Barriers to program sustainability include a lack of administrative leadership support. Discussion: AI/AN-focused PC programs should be congruent with community needs. PC program developers should focus on sustainability well before initial implementation.

Trends and Patterns of Late and Unstaged Lung, Colorectal, Female Breast, and Prostate Cancers among American Indians in the Northern Plains, 2002-2009.

INTRODUCTION: We investigated incidence and staging patterns of prostate, female breast, lung, and colorectal cancer among American Indians/Alaska Natives (AI/ANs) and non-Hispanic Whites (NHWs) in the Northern Plains. METHODS: Cancer registry data (2002-2009) from Nebraska, North Dakota, and South Dakota were analyzed. Incidence rates were calculated and multivariate logistic regression analyses identified factors associated with unstaged versus staged and late-stage cancer cases versus early. RESULTS: The incidence rate was higher among AI/ANs than NHWs for lung cancer (92.2 vs. 60.6 per 100,000). Compared with NHWs, AI/ANs were 2.0 times more likely to receive an unstaged diagnosis and 1.2 times more likely to receive a late-stage diagnosis. AI/ANs were significantly more likely than NHWs to receive an unstaged diagnosis. DISCUSSION: Increased efforts are needed to reduce unstaged and late-stage diagnoses among Northern Plains AIs. Efforts to promote early detection of cancer should target younger AI/ANs.

Gaps in survey data on cancer in American Indian and Alaska Native populations: examination of US population surveys, 1960-2010.

INTRODUCTION: Population-based data are essential for quantifying the problems and measuring the progress made by comprehensive cancer control programs. However, cancer information specific to the American Indian/Alaska Native (AI/AN) population is not readily available. We identified major population-based surveys conducted in the United States that contain questions related to cancer, documented the AI/AN sample size in these surveys, and identified gaps in the types of cancer-related information these surveys collect. METHODS: We conducted an Internet query of US Department of Health and Human Services agency websites and a Medline search to identify population-based surveys conducted in the United States from 1960 through 2010 that contained information about cancer. We used a data extraction form to collect information about the purpose, sample size, data collection methods, and type of information covered in the surveys. RESULTS: Seventeen survey sources met the inclusion criteria. Information on access to and use of cancer treatment, follow-up care, and barriers to receiving timely and quality care was not consistently collected. Estimates specific to the AI/AN population were often lacking because of inadequate AI/AN sample size. For example, 9 national surveys reviewed reported an AI/AN sample size smaller than 500, and 10 had an AI/AN sample percentage less than 1.5%. CONCLUSION: Continued efforts are needed to increase the overall number of AI/AN participants in these surveys, improve the quality of information on racial/ethnic background, and collect more information on treatment and survivorship.

Cancer-related disparities and opportunities for intervention in Northern Plains American Indian communities.

OBJECTIVES: We examined behavioral trends associated with cancer risk and cancer screening use from 1997 through 2006 among American Indians/Alaska Natives (AI/ANs) in the Northern Plains region (North Dakota, South Dakota, Nebraska, and Iowa) of the United States. We also examined disparities between that population and non-Hispanic white (NHW) people in the Northern Plains and AI/ANs in other regions. METHODS: We analyzed Behavioral Risk Factor Surveillance System data from the Centers for Disease Control and Prevention for 1997-2000 and 2003-2006. We used age-adjusted Wald Chi-square tests to test the difference between these two periods for AI/ANs and the difference between AI/ANs and NHW people during 2003-2006. RESULTS: There was no statistically significant improvement among AI/ANs in the Northern Plains region for behaviors associated with cancer risk or cancer screening use, and there was a significant increase in the obesity rate. The prevalence of binge drinking, obesity, and smoking among AI/ANs in the Northern Plains was significantly higher than among NHW people in the same region and among AI/AN populations in other regions. Although the percentage of cancer screening use was similar for all three groups, the use of sigmoidoscopy/colonoscopy was significantly lower among the Northern Plains AI/ANs than among NHW people. CONCLUSION: These results indicate a need for increased efforts to close the gaps in cancer health disparities between AI/ANs and the general population. Future efforts should focus not only on individual-level changes, but also on system-level changes to build infrastructure to promote healthy living and to increase access to cancer screening.