Literature Database: Cancer Interventions

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  • A Cervical Cancer Community-Based Participatory Research Project in a Native American Community

    Citation: Christopher, SG, Allison L. Letiecq, Bethany Smith, Adina McCormick, Alma Knows His Gun. (2008). A Cervical Cancer Community-Based Participatory Research Project in a Native American Community. 35: 821-834.

    PMID: 18077653

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Community Health Worker

    The Messengers for Health on the Apsaalooke Reservation project uses a community-based participatory research (CBPR) approach and lay health advisors (LHAs) to generate knowledge and awareness about cervical cancer prevention among community members in a culturally competent manner. Northern Plains Native Americans, of whom Apsaalooke women are a part, continue to be disproportionately affected by cervical cancer. This article examines quantitative and qualitative changes that occurred in the community since the inception of the Messengers for Health program. Paired sample t tests are used to evaluate the one-group pretest and posttest interviews of 83 Apsaalooke women in knowledge, comfort, and cancer awareness levels. Results reveal cervical cancer knowledge gains, gains in participants' comfort discussing cancer issues, and gains in awareness of cervical cancer and the Messengers program. Field notes, meeting minutes, and community perceptions are used to qualitatively evaluate the effectiveness of the Messengers program. Practice implications are discussed.


  • A Community-Based Approach to Enhancing Anal Cancer Screening in Hawaii's HIV-Infected Ethnic Minorities

    Citation: Shiramizu, BM, Cris Terada, Kevin Cassel, Kevin Matsuno, Rayna K. Killeen, Jeffery Liang, Chin-Yuan Tachibana, Faye Sheeran, Tom Weihe, James Goodman, Marc T. (2012). A Community-Based Approach to Enhancing Anal Cancer Screening in Hawaii's HIV-Infected Ethnic Minorities. 3.

    PMID: 23560244

    Cancer Sites(s): Anal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Objective: Disparities in anal cancer incidence among Hawaii's HIV-infected minority population is an emerging health concern. Although anal cytology/anoscopy are effective anal cancer screening tools, social barriers exist that prevent individuals from seeking appropriate care.; Design: Community based participatory research (CBPR) principles were applied to develop resources, including testing a self-obtained anal specimen procedure, to increase anal cancer screening among Hawaii's underserved/ minority populations.; Methods: A team of community members, academic researchers, and health care providers developed culturally-sensitive educational/recruitment materials regarding anal cancer risk targeting underserved/minority HIV-infected individuals. Self- and health care provider (HCP)-obtained anal cancer screening specimens were reviewed for cytology and tested for human papillomavirus DNA. A follow-up evaluation elicited feedback on attitudes and experiences.; Results: Community discussion sessions identified key messages about anal cancer, anal cancer screening, and HPV infection for materials and were used, that successfully recruited 46 individuals (38 males/8 females; 9 Native Hawaiians/Pacific Islanders/Asians, 2 Blacks, 6 Hispanics, 6 American Indian/Alaskan Natives, 23 Whites). Concordance in cytology results between self- and HCP-obtained specimens was moderated (kappa=0.37) with the perception that the self-obtained specimen procedure was private (93%), safe (100%), and easy to manage (100%); and a majority (92%) willing to use the self-obtained method again.; Conclusions: CBPR was a practical approach in engaging Hawaii's HIV-infected minority participation in anal cancer screening research. Community outreach and recruitment efforts suggested that self-obtained screening specimens could be an acceptable and effective means to reach Hawaii's HIV-infected ethnic minorities.;


  • A comparison of two Native American Navigator formats: face-to-face and telephone

    Citation: Dignan, MBB, Linda Hariton, Judy Harjo, Lisa Rattler, Terri Lee, Rose Mason, Mondi. (2005). A comparison of two Native American Navigator formats: face-to-face and telephone. 12 Suppl 2: 28-33.

    PMID: 16327748

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Health Worker, Health Education and Promotion

    The study was designed to test the relative effectiveness of a Navigator intervention delivered face-to-face or by telephone to urban Native American women. The effectiveness of the intervention was evaluated using a design that included a pretest, random assignment to face-to-face or telephone group, and posttest. The Social Cognitive Theory-based intervention was a tailored education program developed to address individual risk factors for breast cancer. At posttest, self-reported mammograms in the past year increased from 29% to 41.3% in the telephone group and from 34.4% to 45.2% in the face-to-face group. There was no difference in change from pretest to posttest between the telephone and face-to-face groups. Navigators can be effective in increasing adherence to recommendations for screening mammography among urban American Indian women.;


  • A culturally-tailored behavioral intervention trial for alcohol use disorders in three American Indian communities: Rationale, design, and methods

    Citation: McDonell MG, Nepom JR, Leickly E, Suchy-Dicey A, Hirchak K, Echo-Hawk A, Schwartz SM, Calhoun D, Donovan D, Roll J, Ries R, Buchwald D. (2016). A culturally-tailored behavioral intervention trial for alcohol use disorders in three American Indian communities: Rationale, design, and methods. doi:10.1016/j.cct.2015.12.010.

    PMID: 26706667

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: Disproportionately high rates of alcohol use disorders are present in many American Indian/Alaska Native (AI/AN) communities, yet little information exists regarding the effectiveness of alcohol treatments in AI/AN populations. Contingency management is an intervention for illicit drug use in which tangible reinforcers (rewards) are provided when patients demonstrate abstinence as assessed by urine drug tests. Contingency management has not been widely studied as an intervention for alcohol problems because until recently, no alcohol biomarker has been available to adequately verify abstinence. AIMS: The HONOR Study is designed to determine whether a culturally-tailored contingency management intervention is an effective intervention for AI/AN adults who suffer from alcohol use disorders. METHODS: Participants include 400 AI/AN alcohol-dependent adults residing in one rural reservation, one urban community, as well as a third site to be decided, in the Western U.S. Participants complete a 4-week lead-in phase prior to randomization, then 12 weeks of either a contingency management intervention for alcohol abstinence, or a control condition where participants receive reinforcers for attending study visits regardless of alcohol use. Participants are then followed for 3-more months post-intervention. The primary study outcome is urinary ethyl glucuronide-confirmed alcohol abstinence; secondary outcomes include self-reported alcohol and drug use, HIV risk behaviors, and self-reported cigarette smoking. DISCUSSION: This will be the largest randomized, controlled trial of any alcohol for AI/ANs and the largest contingency management study targeting alcohol use disorders, thus providing important information to AI/AN communities and the alcohol treatment field in general. Copyright © 2015. Published by Elsevier Inc.


  • A diagnostic evaluation model for complex research partnerships with community engagement: the partnership for Native American Cancer Prevention (NACP) model

    Citation: Trotter RT 2nd, Laurila K, Alberts D, Huenneke LF. (2015). A diagnostic evaluation model for complex research partnerships with community engagement: the partnership for Native American Cancer Prevention (NACP) model. doi:10.1016/j.evalprogplan.2014.09.001.

    PMID: 25265164

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Abstract Complex community oriented health care prevention and intervention partnerships fail or only partially succeed at alarming rates. In light of the current rapid expansion of critically needed programs targeted at health disparities in minority populations, we have designed and are testing an logic model plus evaluation model that combines classic logic model and query based evaluation designs (CDC, NIH, Kellogg Foundation) with advances in community engaged designs derived from industry-university partnership models. These approaches support the application of a near real time feedback system (diagnosis and intervention) based on organizational theory, social network theory, and logic model metrics directed at partnership dynamics, combined with logic model metrics. Copyright © 2014 Elsevier Ltd. All rights reserved.


  • A Framework for Culturally Relevant Online Learning: Lessons from Alaska's Tribal Health Workers

    Citation: Cueva K, Cueva M, Revels L, Lanier AP, Dignan M, Viswanath K, Fung TT, Geller AC. (2018). A Framework for Culturally Relevant Online Learning: Lessons from Alaska's Tribal Health Workers. doi:10.1007/s13187-018-1350-8.

    PMID: 29569143

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Culturally relevant health promotion is an opportunity to reduce health inequities in diseases with modifiable risks, such as cancer. Alaska Native people bear a disproportionate cancer burden, and Alaska's rural tribal health workers consequently requested cancer education accessible online. In response, the Alaska Native Tribal Health Consortium cancer education team sought to create a framework for culturally relevant online learning to inform the creation of distance-delivered cancer education. Guided by the principles of community-based participatory action research and grounded in empowerment theory, the project team conducted a focus group with 10 Alaska Native education experts, 12 culturally diverse key informant interviews, a key stakeholder survey of 62 Alaska Native tribal health workers and their instructors/supervisors, and a literature review on distance-delivered education with Alaska Native or American Indian people. Qualitative findings were analyzed in Atlas.ti, with common themes presented in this article as a framework for culturally relevant online education. This proposed framework includes four principles: collaborative development, interactive content delivery, contextualizing learning, and creating connection. As an Alaskan tribal health worker shared we're all in this together. All about conversations, relationships. Always learn from you/with you, together what we know and understand from the center of our experience, our ways of knowing, being, caring. The proposed framework has been applied to support cancer education and promote cancer control with Alaska Native people and has motivated health behavior change to reduce cancer risk. This framework may be adaptable to other populations to guide effective and culturally relevant online interventions.


  • A multilevel health promotion intervention in minority-owned workplaces

    Citation: Bowen DJ, Briant KJ, Harris J, Hannon P, Buchwald D. (2015). A multilevel health promotion intervention in minority-owned workplaces. doi:10.1007/s40615-015-0093-z.

    PMID: 26693135

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    INTRODUCTION: Changing health behaviors and health-related environments is important in reducing chronic disease. Minority workplaces are potential venues to provide regular, effective health promotion opportunities to underserved individuals. The purpose of this study was to test the feasibility of changing workplace policy, programs, and practices in minority-owned workplaces. METHODS: Four minority Native American-owned businesses were recruited to participate in this study. The intervention was a set of recommended standards and guidelines gleaned from the US Preventive Task Force and The Community Guide relevant to workplaces. Each workplace selected between 4 and 6 target areas to improve over the year-long intervention period. The evaluation tool was a semi-structured survey conducted at baseline and at one-year follow-up, with workplace staff responsible for benefits and services to employees. Feasibility was evaluated by assessing the likelihood that the workplaces implemented health promotion activities in the year-long intervention. RESULTS: Several practices and policies changed significantly during the intervention in the four workplaces, including coverage for nicotine replacement therapy (NRT), elimination of out of pocket costs for screening and tobacco cessation, accountability systems for providers, posted stair use, cessation line availability that included NRT, offering weight loss programs, offering physical activity programs, and conducting targeted communication programs about health promotion. Other practices and polices changed in the expected direction, but were not significant. CONCLUSION: Changing workplace programs, practices, and policies is feasible in minority workplaces, with support and tools provided by outside organizations. These findings could drive a full-scale test of the intervention in minority businesses in order to improve the health of disadvantaged workers.


  • A Process Evaluation of the Alaska Native Colorectal Cancer Family Outreach Program

    Citation: Redwood, DP, Ellen Lopez, Ellen D. S. Skewes, Monica Johnson, Rhonda Christensen, Claudia Sacco, Frank Haverkamp, Donald. (2015). A Process Evaluation of the Alaska Native Colorectal Cancer Family Outreach Program.

    PMID: 26157041

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Health Worker, Health Education and Promotion

    This article presents the results of a process evaluation of the Alaska Native (AN) Colorectal Cancer (CRC) Family Outreach Program, which encourages CRC screening among AN first-degree relatives (i.e., parents, siblings, adult children; hereafter referred to as relatives) of CRC patients. Among AN people incidence and death rates from CRC are the highest of any ethnic/racial group in the United States. Relatives of CRC patients are at increased risk; however, CRC can be prevented and detected early through screening. The evaluation included key informant interviews (August to November 2012) with AN and non-AN stakeholders and program document review. Five key process evaluation components were identified: program formation, evolution, outreach responses, strengths, and barriers and challenges. Key themes included an incremental approach that led to a fully formed program and the need for dedicated, culturally competent patient navigation. Challenges included differing relatives' responses to screening outreach, health system data access and coordination, and the program impact of reliance on grant funding. This program evaluation indicated a need for more research into motivating patient screening behaviors, electronic medical records systems quality improvement projects, improved data-sharing protocols, and program sustainability planning to continue the dedicated efforts to promote screening in this increased risk population.; © 2015 Society for Public Health Education.


  • A qualitative study of provider perspectives of structural barriers to cervical cancer screening among first nations women

    Citation: Maar M, Burchell A, Little J, Ogilvie G, Severini A, Yang JM, Zehbe I. (2013). A qualitative study of provider perspectives of structural barriers to cervical cancer screening among first nations women. doi:10.1016/j.whi.2013.06.005.

    PMID: 23993479

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVE: In Canada, opportunistic screening programs have successfully reduced mortality from cervical cancer; however, minority or disadvantaged groups, as well as women in northern and rural areas, are inadequately recruited by this approach. Hence, we set out to examine the structural barriers that prevent First Nations women's participation in cervical cancer screening. METHODS: Using a participatory action research approach and semistructured interview guides, we conducted in-depth interviews with 18 experienced health care professionals, 12 of whom were also community members. These individuals included nurses, nurse practitioners, community health representatives, social workers and physicians who provide care to women in our First Nations partner communities. In the current report, we explored perceived barriers to cervical cancer screening through the lens of service providers. RESULTS: Structural barriers to cervical cancer screening for First Nations women included shortage of appropriate health care providers, lack of a recall-based screening system, geographic and transportation barriers; health literacy and socioeconomic inequalities, generational effects, and the colonial legacy. CONCLUSION: Existing, opportunistic cervical cancer screening programs do not perform well for First Nations women who experience significant screening-related health inequalities that are largely influenced by structural barriers. Sustainable screening interventions in First Nations communities require approaches that resolve these structural barriers, explore new ways of screening, and provide education for both women and health care providers. Many of the structural barriers are rooted in colonial history. Given the negative impact of the consequences of colonization on indigenous women worldwide, many of our findings strongly resonate with marginalized populations in other countries. Copyright © 2013 Jacobs Institute of Women's Health. Published by Elsevier Inc. All rights reserved.


  • A Randomized Controlled Calendar Mail-Out to Increase Cancer Screening Among Urban American Indian and Alaska Native Patients

    Citation: Doorenbos, AZJ, Clemma Corpuz, Rebecca Forquera, Ralph Buchwald, Dedra. (2011). A Randomized Controlled Calendar Mail-Out to Increase Cancer Screening Among Urban American Indian and Alaska Native Patients. 26: 549-554.

    PMID: 21472495

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Arts Program, Health Education and Promotion

    This study seeks to ascertain whether a culturally tailored art calendar could improve participation in cancer screening activities. We conducted a randomized, controlled calendar mail-out in which a Native art calendar was sent by first class mail to 5,633 patients seen at an urban American Indian clinic during the prior 2 years. Using random assignment, half of the patients were mailed a 'message' calendar with screening information and reminders on breast, colorectal, lung, and prostate cancer; the other half received a calendar without messages. The receipt of cancer screening services was ascertained through chart abstraction in the following 15 months. In total, 5,363 observations (health messages n = 2,695; no messages n = 2,668) were analyzed. The calendar with health messages did not result in increased receipt of any cancer-related prevention outcome compared to the calendar without health messages. We solicited clinic input to create a culturally appropriate visual intervention to increase cancer screening in a vulnerable, underserved urban population. Our results suggest that printed materials with health messages are likely too weak an intervention to produce the desired behavioral outcomes in cancer screening.


  • A socioecological approach to improving mammography rates in a tribal community

    Citation: English, KCF, Jo Finster, Carolyn E. Rafelito, Alvin Luna, Jolene Kennedy, Marianna. (2008). A socioecological approach to improving mammography rates in a tribal community. 35: 396-409.

    PMID: 17114330

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    This article highlights the processes and intermediate outcomes of a pilot project to increase mammography rates of women in an American Indian tribe in New Mexico. Using a socioecological framework and principles of community-based participatory research, a community coalition was able to ( a) bolster local infrastructure to increase access to mammography services; (b) build public health knowledge and skills among tribal health providers; (c) identify community-specific knowledge, attitudes, and beliefs related to breast cancer; (d) establish interdependent partnerships among community health programs and between the tribe and outside organizations; and (e) adopt local policy initiatives to bolster tribal cancer control. These findings demonstrate the value of targeting a combination of individual, community, and environmental factors, which affect community breast cancer screening rates and incorporating cultural strengths and resources into all facets of a tribal health promotion intervention.


  • A Systematic Review of Barriers and Facilitators to Mammography in American Indian/Alaska Native Women

    Citation: Jerome-D'Emilia B, Gachupin FC, Suplee PD. (2019). A Systematic Review of Barriers and Facilitators to Mammography in American Indian/Alaska Native Women. doi:10.1177/1043659618793706.

    PMID: 30122121

    Cancer Sites(s): Breast

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    INTRODUCTION: The purpose of this systematic review was to synthesize the current knowledge of factors that enable or impede American Indian and Alaska Native (AI/AN) women from accessing breast cancer screening. METHODOLOGY: A systematic search of MEDLINE and CINAHL databases identified relevant research studies published from 2007 to 2017. RESULTS: Consistent with other low-income populations, socioeconomic factors were related to lower rates of screening in AI/AN women. However, some factors, such as reliance on the Indian Health Service, cultural issues, and traditionality were unique to this population. DISCUSSION: AI/AN women appear to face many of the difficulties that other low-income minority women face in accessing preventive care; however, they may face unique challenges and circumstances in accessing care. Efforts to work with tribes in the development of interventions framed by community-based participatory research are needed to tackle the disparities in the AI/AN community.


  • A Value-Based Approach to Increase Breast Cancer Screening and Health-Directed Behaviors among American Indian Women

    Citation: von Friederichs-Fitzwater, MMN, Linda Taylor, Sandra L. (2010). A Value-Based Approach to Increase Breast Cancer Screening and Health-Directed Behaviors among American Indian Women. 25: 582-587.

    PMID: 20405355

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion, Screening Program

    American Indian/Alaska Native (AI/AN) women have the lowest cancer-screening rate of any ethnic or racial group; AI/AN women in all regions are less likely than non-Hispanic white women to be diagnosed with localized breast cancer; and those AI/AN women presenting with breast cancer have the lowest 5-year survival rate compared to other ethnic groups. This study found that cultural beliefs are more of a factor in mammography screening behavior than other barriers such as access; and that a more holistic educational intervention designed by AI/AN women prompted individual intent and actions to seek mammograms among AI/AN women > 40 and to change unhealthy eating and sedentary lifestyles.


  • Accelerating and Strengthening Native American Health Research Through a Collaborative NIH Initiative

    Citation: Crump AD, Etz K, Arroyo JA, Hemberger N, Srinivasan S. (2017). Accelerating and Strengthening Native American Health Research Through a Collaborative NIH Initiative. doi:10.1007/s11121-017-0854-5.

    PMID: 29143223

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    This paper is intended to provide an overview of the considerations that informed the development of a National Institutes of Health funding opportunity to promote health and prevent disease in Native Americans, including American Indian, Alaska Native, and Native Hawaiian communities. NIH Institute staff thoughtfully considered epidemiologic research findings and feedback from constituents regarding the need for more published research overall and stronger prevention efforts to address persistent health concerns affecting many Native communities. This led to the publication of four funding announcements supported by multiple NIH Institutes and one NIH Office. Through the efforts of researchers, tribal leaders, community collaborators, and NIH leadership and staff, a growing body of knowledge regarding culturally informed approaches to supporting health in Native Americans is emerging. This article describes how staff who developed the funding opportunities envisioned a process to support high impact science through ensuring methodological rigor, responsiveness to prevention needs, and respect for community heritage, values, and history with non-Native peoples. In addition, this article highlights the growth of the researchers and collaborators within a community of scientists expanding the knowledge base further by sharing their research resources, instruments, and strategies for engaging in scientific inquiry that meets the needs of Native communities and those of funding organizations.


  • Access to medical and supportive care for rural and remote cancer survivors in northern British Columbia

    Citation: Fuchsia Howard A, Smillie K, Turnbull K, Zirul C, Munroe D, Ward A, Tobin P, Kazanjian A, Olson R. (2014). Access to medical and supportive care for rural and remote cancer survivors in northern British Columbia. doi:10.1111/jrh.12064.

    PMID: 24483272

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: Rural cancer survivors (RCS) potentially have unique medical and supportive care experiences when they return to their communities posttreatment because of the availability and accessibility of health services. However, there is a limited understanding of cancer survivorship in rural communities. PURPOSE: The purpose of this study is to describe RCS experiences accessing medical and supportive care postcancer treatment. METHODS: Interviews and focus groups were conducted with 52 RCS residing in northern British Columbia, Canada. The data were analyzed using qualitative content analysis methods. RESULTS: General Population RCS and First Nations RCS experienced challenges accessing timely medical care close to home, resulting in unmet medical needs. Emotional support services were rarely available, and, if they did exist, were difficult to access or not tailored to cancer survivors. Travel and distance were barriers to medical and psychological support and services, not only in terms of the cost of travel, but also the toll this took on family members. Many of the RCS lacked access to trusted and useful information. Financial assistance, for follow-up care and rehabilitation services, was rarely available, as was appropriate employment assistance. CONCLUSION: Medical and supportive care can be inaccessible, unavailable, and unaffordable for cancer survivors living in rural northern communities. © 2014 National Rural Health Association.


  • Adaptation, Dissemination, and Evaluation of a Cancer Palliative Care Curriculum for the Indian Health System

    Citation: Arenella, CF, Bruce Domer, Timothy Kaur, Judith S. Merriman, Melanie P. Ousley, Anita. (2010). Adaptation, Dissemination, and Evaluation of a Cancer Palliative Care Curriculum for the Indian Health System. 26: 15-21.

    PMID: 20402180

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Health-Care System

    Intervention Type(s): Palliative, Training for Health Professionals

    In 2006, the Indian Health Service (IHS) and the National Cancer Institute (NCI) collaborated to develop an interdisciplinary palliative training program for health professionals in the Indian health system. Their goal was to improve clinician knowledge and skills in palliative care, to train future trainers, and to increase access to palliative care for American Indians and Alaska Natives. The combined program of participant self-study utilizing a multimedia CD-ROM and train-the-trainer seminars followed the curriculum entitled Education in Palliative and End-of-Life Care for Oncology (EPEC (TM)-O) with American Indian and Alaska Native Cultural Considerations. Three seminars trained 89 interdisciplinary health providers from throughout the Indian health system. Evaluations demonstrated increased clinician self-reported knowledge and confidence to train and high satisfaction with training. Forty-two of 67 participants completed an anonymous post-conference Web questionnaire. Nearly half had conducted or definitively planned palliative education sessions, and 57 percent started new palliative services at their practice sites.


  • Adapting a Cancer Literacy Measure for Use Among Navajo Women

    Citation: Yost KJ, Bauer MC, Buki LP, Austin-Garrison M, Garcia LV, Hughes CA, Patten CA. (2017). Adapting a Cancer Literacy Measure for Use Among Navajo Women. doi:10.1177/1043659616628964.

    PMID: 26879319

    Cancer Sites(s): Breast

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    PURPOSE: The authors designed a community-based participatory research study to develop and test a family-based behavioral intervention to improve cancer literacy and promote mammography among Navajo women. METHOD: Using data from focus groups and discussions with a community advisory committee, they adapted an existing questionnaire to assess cancer knowledge, barriers to mammography, and cancer beliefs for use among Navajo women. Questions measuring health literacy, numeracy, self-efficacy, cancer communication, and family support were also adapted. RESULTS: The resulting questionnaire was found to have good content validity, and to be culturally and linguistically appropriate for use among Navajo women. CONCLUSIONS: It is important to consider culture and not just language when adapting existing measures for use with AI/AN (American Indian/Alaskan Native) populations. English-language versions of existing literacy measures may not be culturally appropriate for AI/AN populations, which could lead to a lack of semantic, technical, idiomatic, and conceptual equivalence, resulting in misinterpretation of study outcomes.


  • Adapting a Skin Cancer Prevention Intervention for Multiethnic Adolescents

    Citation: Cassel KD, Tran DA, Murakami-Akatsuka L, Tanabe-Hanzawa J, Burnett T, Lum C. (2018). Adapting a Skin Cancer Prevention Intervention for Multiethnic Adolescents. doi:10.5993/AJHB.42.2.4.

    PMID: 29458513

    Cancer Sites(s): Skin

    Cancer Continuum(s): Prevention

    Intervention Site(s): Schools

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVE: We tested the effectiveness of a school-based skin cancer prevention intervention entitled SunSafe in the Middle School Years adapted for multiethnic high school students. METHODS: In Hawai'i, 208 10th graders (51.6% Asian, 30.4% Native Hawaiian/Pacific Islander, 8.4% white, 3.5% Hispanic, 2.7% black) participated. Changes in sun protection knowledge, attitudes, and self-reported behaviors were measured using a standardized 18-item survey. The Systematic Observation of Sun Protection Factors (SOSPF) instrument assessed aggregate sun protection behaviors. RESULTS: At posttest, improvements were found in 13 of 18 survey items (p < .05), and retained in 10 items at 12-months following baseline assessments; sun-protection attitudes and intended tanning behavior did not show improvement. Six observers using SOSPF reliably measured students' sun protection behaviors at school including use of hats, sunglasses, long sleeves, lower body coverage, and shade (ICC > .77). CONCLUSIONS: We uncovered a lack of knowledge about UVR exposure, tanning, and lifetime skin cancer risk among multiethnic high school students. We found that students' tanning attitudes may be influenced by self-perceptions regarding their own complexion, but were willing to modify their sun protection behaviors once informed about skin cancer risk.


  • Addressing Cancer Disparities Among American Indians through Innovative Technologies and Patient Navigation: The Walking Forward Experience

    Citation: Petereit, DGG, B. Ashleigh Wong, Rosemary Coleman, C. Norman. (2011). Addressing Cancer Disparities Among American Indians through Innovative Technologies and Patient Navigation: The Walking Forward Experience. 1: 11-11.

    PMID: 22649752

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Health Worker, Innovative Technology

    Purpose/objective(s): American Indians (AIs) present with more advanced stages of cancer and, therefore, suffer from higher cancer mortality rates compared to non-AIs. Under the National Cancer Institute (NCI) Cancer Disparities Research Partnership (CDRP) Program, we have been researching methods of improving cancer treatment and outcomes since 2002, for AIs in Western South Dakota, through the Walking Forward (WF) Program.; Materials/methods: This program consists of (a) a culturally tailored patient navigation program that facilitated access to innovative clinical trials in conjunction with a comprehensive educational program encouraging screening and early detection, (b), surveys to evaluate barriers to access, (c) clinical trials focusing on reducing treatment length to facilitate enhanced participation using brachytherapy and intensity modulated radiotherapy (IMRT) for breast and prostate cancer, as AIs live a median of 140 miles from the cancer center, and (d) a molecular study (ataxia telangiectasia mutated) to address whether there is a specific profile that increases toxicity risks.; Results: We describe the design and implementation of this program, summary of previously published results, and ongoing research to influence stage at presentation. Some of the critical outcomes include the successful implementation of a community-based research program, development of trust within tribal communities, identification of barriers, analysis of nearly 400 navigated cancer patients, clinical trial accrual rate of 10%, and total enrollment of nearly 2,500 AIs on WF research studies.; Conclusion: This NCI funded pilot program has achieved some initial measures of success. A research infrastructure has been created in a community setting to address new research questions and interventions. Efforts underway to promote cancer education and screening are presented, as well as applications of the lessons learned to other health disparity populations - both nationally and internationally.;


  • Addressing disparities in the health of American Indian and Alaska Native people: the importance of improved public health data

    Citation: Bauer UE, Plescia M. (2014). Addressing disparities in the health of American Indian and Alaska Native people: the importance of improved public health data. doi:10.2105/AJPH.2013.301602.

    PMID: 24754654

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): N/A

    Intervention Type(s): N/A


  • Addressing Risk and Reluctance at the Nexus of HIV and Anal Cancer Screening

    Citation: Ka'opua LS, Cassel K, Shiramizu B, Stotzer RL, Robles A, Kapua C, Orton M, Milne C, Sesepasara M. (2016). Addressing Risk and Reluctance at the Nexus of HIV and Anal Cancer Screening. doi:10.1177/1524839915615611.

    PMID: 26630979

    Cancer Sites(s): Anal

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Anal cancer disproportionately burdens persons living with human immunodeficiency virus (PLHIV) regardless of natal sex, sexual orientation, gender expression, and ethnic identity. Culturally competent communications are recommended to address health disparities, with sociocultural relevance ensured through constituent dialogic processes. Results are presented from six provider focus groups conducted to inform the promotion/education component of a Hawai'i-based project on anal cancer screening tools. Krueger's focus group methodology guided discussion queries. Verbatim transcripts of digitally recorded discussions were analyzed using grounded theory and PEN-3 procedures. Adherence to an audit trail ensured analytic rigor. Grounded theory analysis detected the overall theme of risk and reluctance to anal cancer screening, characterized by anal cancer not being on the radar of PLHIV, conflicting attributions of the anus and anal sex, fear of sex-shaming/-blaming, and other interrelated conceptual categories. PEN-3 analysis revealed strategies for destigmatizing anal cancer, through real talk (proactive, candid, nonjudgmental discussion) nested in a framework of sexual health and overall well-being, with additional tailoring for relevance to Native Hawaiians/Pacific Islanders, transgender persons, and other marginalized groups. Application of strategies for health practice are specific to the Hawai'i context, yet may offer considerations for developing strengths-based, culturally relevant screening promotion/education with diverse PLHIV in other locales. © 2015 Society for Public Health Education.


  • Alcohol Intake and Colorectal Cancer Risk in the Multiethnic Cohort Study

    Citation: Park SY, Wilkens LR, Setiawan VW, Monroe KR, Haiman CA, Le Marchand L. (2019). Alcohol Intake and Colorectal Cancer Risk in the Multiethnic Cohort Study. doi:10.1093/aje/kwy208.

    PMID: 30239578

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    To investigate the association of alcohol intake with colorectal cancer risk according to race/ethnicity as well as sex, lifestyle-related factors, alcoholic beverage type, and anatomical subsite, we analyzed data from 190,698 black, Native Hawaiian, Japanese-American, Latino, and white persons in Hawaii and California in the Multiethnic Cohort Study, with 4,923 incident cases during a 16.7-year follow-up period (1993-2013). In multivariate Cox regression models, the hazard ratio was 1.16 (95% confidence interval (CI): 1.01, 1.34) for 15.0-29.9 g/day of alcohol and 1.28 (95% CI: 1.12, 1.45) for ?30.0 g/day among men, and 1.06 (95% CI: 0.85, 1.32) and 1.15 (95% CI: 0.92, 1.43), respectively, among women, compared with nondrinkers (P for heterogeneity according to sex = 0.74). An increased risk was apparent among Native Hawaiians, Japanese Americans, Latinos, and white persons and among individuals with body mass index <25.0 (calculated as weight (kg)/height (m)2), never-users of nonsteroidal antiinflammatory drugs, and those with lower intake of dietary fiber and folate. Beer and wine, but not liquor, consumption was positively related to colorectal cancer risk. The association was stronger for rectum and left-colon tumors than for right-colon tumors. Our findings suggest that the positive association between alcohol and colorectal cancer varies according to race/ethnicity, lifestyle factors, alcoholic beverage type, and anatomical subsite of tumors.


  • American Indian and Alaska Native Cancer Patients' Perceptions of a Culturally Specific Patient Navigator Program

    Citation: Grimes C, Dankovchik J, Cahn M, Warren-Mears V. (2017). American Indian and Alaska Native Cancer Patients' Perceptions of a Culturally Specific Patient Navigator Program. doi:10.1007/s10935-016-0458-z.

    PMID: 27838858

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Community

    Intervention Type(s): Arts Program, Community Based Participatory Research (CBPR)

    Lack of access to care, funding limitations, cultural, and social barriers are challenges specific to tribal communities that have led to adverse cancer outcomes among American Indians/Alaska Natives (AI/AN). While the cancer navigator model has been shown to be effective in other underserved communities, it has not been widely implemented in Indian Country. We conducted in-depth interviews with 40 AI/AN patients at tribal clinics in Idaho and Oregon. We developed the survey instrument in partnership with community members to ensure a culturally appropriate semi-structured questionnaire. Questions explored barriers to accessing care, perceptions of the navigator program, satisfaction, and recommendations. AI/AN cancer patients reported physical, emotional, financial, and transportation barriers to care, but most did not feel there were any cultural barriers to receiving care. Navigator services most commonly used included decision making, referrals, transportation, scheduling appointments, and communication. Satisfaction with the program was high. Our study provides a template to develop a culturally appropriate survey instrument for use with an AI/AN population, which could be adapted for use with other indigenous patient populations. Although our sample was small, our qualitative analysis facilitated a deeper understanding of the barriers faced by this population and how a navigator program may best address them. The results reveal the strengths and weakness of this program, and provide baseline patient satisfaction numbers which will allow future patient navigator programs to better create evaluation benchmarks.


  • American Indian Men's Perceptions of Breast Cancer Screening for American Indian Women

    Citation: Filippi MK, Pacheco J, James AS, Brown T, Ndikum-Moffor F, Choi WS, Greiner KA, Daley CM. (2014). American Indian Men's Perceptions of Breast Cancer Screening for American Indian Women.

    PMID: 25995972

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Screening, especially screening mammography, is vital for decreasing breast cancer incidence and mortality. Screening rates in American Indian women are low compared to other racial/ethnic groups. In addition, American Indian women are diagnosed at more advanced stages and have lower 5-year survival rate than others. To better address the screening rates of American Indian women, focus groups (N=8) were conducted with American Indian men (N=42) to explore their perceptions of breast cancer screening for American Indian women. Our intent was to understand men's support level toward screening. Using a community-based participatory approach, focus groups were audio-taped, transcribed verbatim, and analyzed using a text analysis approach developed by our team. Topics discussed included breast cancer and screening knowledge, barriers to screening, and suggestions to improve screening rates. These findings can guide strategies to improve knowledge and awareness, communication among families and health care providers, and screening rates in American Indian communities.


  • American Indian women cancer survivors' coping with depressive symptoms

    Citation: Burnette CE, Roh S, Liddell J, Lee YS. (2018). American Indian women cancer survivors' coping with depressive symptoms. doi:10.1080/07347332.2018.1525467.

    PMID: 30590999

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVE: Depressive symptoms have been identified as a primary predictor of quality of life among cancer patients. Depression and cancer are co-occurring and disproportionately elevated for American Indian and Alaska Native (AI/AN) women. The purpose of this article is to examine American Indian (AI) women cancer survivors' coping mechanisms for depressive symptoms. RESEARCH APPROACH: The methodology included a qualitative descriptive approach with conventional content analysis to examine the coping strategies of AI women cancer survivors associated with depressive symptoms. The interview guide was semi-structured and developed in collaboration with a community advisory board (CAB). Data-derived qualitative analysis was used to generate codes inductively from the data. PARTICIPANTS: A sample of 43 AI women cancer survivors (n?=?14 cervical cancer, n?=?14 breast cancer, and n?=?15 other cancers) from the Northern Plains region, in the state of South Dakota were interviewed. Data were collected from June 2014 to February 2015. Methodological approach: Qualitative content analysis was used for data analysis, which allowed themes to emerge inductively from the data. Analysis revealed 430 preliminary codes. After de-briefing, validation, and discussion among coauthors, these were then sorted into 67 codes. Member checks with all available participants were conducted to minimize misinterpretation. FINDINGS: A total of 26 participants (62%) indicated they had feelings of depression since their cancer diagnosis. Women coped with depressive feelings by (a) participating in faith traditions; (b) seeking creative and positive outlets; (c) martialing family and social support; and (d) keeping busy with other life activities. INTERPRETATION: AI women experienced depressive symptoms following a cancer diagnosis and used a variety of positive coping mechanisms to create personal meaning. Implications for Psychosocial Providers or Policy: AI women may need unique support following a cancer diagnosis, and interventions should incorporate AI beliefs and traditions, such as storytelling and talking with family and community members.


  • American Indian women cancer survivors' coping with depressive symptoms

    Citation: Burnette CE, Roh S, Liddell J, Lee YS. (2018). American Indian women cancer survivors' coping with depressive symptoms. doi:10.1080/07347332.2018.1525467.

    PMID: 30590999

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Community Health Worker, Health Education and Promotion

    OBJECTIVE: Depressive symptoms have been identified as a primary predictor of quality of life among cancer patients. Depression and cancer are co-occurring and disproportionately elevated for American Indian and Alaska Native (AI/AN) women. The purpose of this article is to examine American Indian (AI) women cancer survivors' coping mechanisms for depressive symptoms. RESEARCH APPROACH: The methodology included a qualitative descriptive approach with conventional content analysis to examine the coping strategies of AI women cancer survivors associated with depressive symptoms. The interview guide was semi-structured and developed in collaboration with a community advisory board (CAB). Data-derived qualitative analysis was used to generate codes inductively from the data. PARTICIPANTS: A sample of 43 AI women cancer survivors (n?=?14 cervical cancer, n?=?14 breast cancer, and n?=?15 other cancers) from the Northern Plains region, in the state of South Dakota were interviewed. Data were collected from June 2014 to February 2015. Methodological approach: Qualitative content analysis was used for data analysis, which allowed themes to emerge inductively from the data. Analysis revealed 430 preliminary codes. After de-briefing, validation, and discussion among coauthors, these were then sorted into 67 codes. Member checks with all available participants were conducted to minimize misinterpretation. FINDINGS: A total of 26 participants (62%) indicated they had feelings of depression since their cancer diagnosis. Women coped with depressive feelings by (a) participating in faith traditions; (b) seeking creative and positive outlets; (c) martialing family and social support; and (d) keeping busy with other life activities. INTERPRETATION: AI women experienced depressive symptoms following a cancer diagnosis and used a variety of positive coping mechanisms to create personal meaning. Implications for Psychosocial Providers or Policy: AI women may need unique support following a cancer diagnosis, and interventions should incorporate AI beliefs and traditions, such as storytelling and talking with family and community members.


  • American Indian Women Cancer Survivor's Needs and Preferences: Community Support for Cancer Experiences

    Citation: Burnette CE, Roh S, Liddell J, Lee YS. (2018). American Indian Women Cancer Survivor's Needs and Preferences: Community Support for Cancer Experiences. doi:10.1007/s13187-018-1346-4.

    PMID: 29546486

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Cancer (the focus of this inquiry) is the leading cause of death among American Indian and Alaska Native women. The purpose of this study was to identify American Indian women cancer survivors' needs and preferences related to community supports for their cancer experience. This qualitative study examined female American Indian cancer survivors' needs and preferences about community support. The sample included 43 American Indian women cancer survivors (the types of cancer survivors included cervical cancer: n?=?14; breast cancer: n?=?14; and colon and other types: n?=?15) residing in the Northern Plains region, in the state of South Dakota. Data were analyzed using qualitative content analysis and were collected between June of 2014 and February of 2015. When asked about their needs and preferences, 82% of participants (n?=?35) of female American Indian cancer survivors reported at least one of the following most commonly reported themes: cancer support groups (n?=?31, 72%), infrastructure for community support (n?=?17, 40%), and cancer education (n?=?11, 26%). In addition to the aforementioned themes, 33% of participants (n?=?14) indicated the need for an improved healthcare system, with 11% (n?=?5) of participants expressly desiring the integration of spirituality and holistic healing options. The majority of American Indian women cancer survivor participants of this study identified a need for more community-based support systems and infrastructures to aid with the cancer survivor experience. Results warrant a community approach to raise awareness, education, and support for American Indian cancer survivors.


  • American Indian women cancer survivors' perceptions and experiences with conventional and non-conventional mental health care for depressive symptoms

    Citation: Burnette CE, Liddell J, Roh S, Lee YS, Yun Lee H. (2018). American Indian women cancer survivors' perceptions and experiences with conventional and non-conventional mental health care for depressive symptoms. doi:10.1080/13557858.2018.1493439.

    PMID: 29962228

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: Despite cancer and depression being disproportionately high for American Indian and Alaska Native (AI/AN) women, such cancer survivors' help-seeking practices and perceptions related to depression are absent in extant research. A broader context of historical oppression has set the stage for unequal health outcomes and access to quality services. The purpose of this article was to explore AI women cancer survivors' experiences with conventional mental health services and informal and tribally-based assistance, as well as barriers related to mental health service utilization. METHODS: A qualitative descriptive study methodology, with qualitative content analysis, was used to examine the experiences of AI women cancer survivors as they related to help-seeking experiences for depressive symptoms. The sample included 43 AI women cancer survivors (n?=?14 breast cancer, n?=?14 cervical cancer, and n?=?15 colon and other types of cancer survivors). RESULTS: Since receiving a cancer diagnosis, 26 (62%) participants indicated they had feelings of depression. Some participants (n?=?13) described mixed perceptions of the mental health service system. Generally, participants viewed families and informal support systems as primary forms of assistance, whereas conventional services were reported as a supplementary or 'as needed' forms of support, particularly when the informal support system was lacking. Participants received help in the forms of psychotropic medications and psychotherapy, as well as help from family and AI-specific healing modalities (e.g. sweat lodges and healing ceremonies). Stigma and confidentiality concerns were primary barriers to utilizing conventional services as described by 12 (29%) participants. DISCUSSION: Participants' help primarily came from family and tribally-based entities, with conventional mental health care being more salient when informal supports were lacking. The mixed perceptions espoused by participants may be related to a broader context of historical oppression; family and social support and tribally-based services may be protective factors for cancer survivors with depression.


  • American Indian women's talking circle. A cervical cancer screening and prevention project

    Citation: Hodge, FSF, L. Rodriguez, B. (1996). American Indian women's talking circle. A cervical cancer screening and prevention project. 78: 1592-1597.

    PMID: 8839577

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Support Group

    Background: Cervical cancer is important to American Indian women due to high mortality and low survival rates compared with other ethnic groups. This article describes the development and implementation of a culturally acceptable cervical cancer screening program in urban and rural American Indian health clinics in California.; Methods: A team of researchers used social learning theory, research data, and focus groups to design a cervical cancer screening program. The major component of the program was the adaptation of a culturally acceptable mode of communication called Talking Circles. The American Indian Talking Circle project used the Talking Circle format, coupled with traditional Indian stories, as a vehicle to provide cancer education and to improve adherence to cancer screening. Eight American Indian clinics were randomly assigned into intervention and control sites (n = 400 women). The intervention was administered to 200 Indian women 18 years and older in four American Indian clinics; four additional American Indian clinics (n = 200 women) served as control sites.; Results: Preliminary results from the research show that American Indian women responded favorably to a culturally framed education project. Initial reports indicate that health-related information is accepted and acted on when it is coupled with cultural information that is presented in a sensitive manner. Final evaluation of the project is forthcoming.; Conclusions: Utilizing a culturally acceptable intervention has the potential to improve the health status of American Indian Women.;


  • An innovative path to improving cancer care in Indian country

    Citation: Burhansstipanov, LG, Alisa LaMarca, Khari. (2001). An innovative path to improving cancer care in Indian country [Article]. 116: 424-433.

    PMID: 12042607

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Support Group

    The Native American Cancer Survivors' Support Network is an innovative public health program designed to improve survival from cancer and the quality of life after a cancer diagnosis for American Indians, Alaska Natives, and Canadian Aboriginal patients and their loved ones. The Network, initiated in 1999, now has more than 300 survivors enrolled as members. This article briefly describes the process that led to its formation and preliminary findings, primarily for breast cancer survivors, of ongoing qualitative and quantitative research. Network data show patterns of cancer care that are partially responsible for poor survivorship outcomes. Reprinted by permission of the publisher.


  • Assessing Acceptability of Self-Sampling Kits, Prevalence, and Risk Factors for Human Papillomavirus Infection in American Indian Women

    Citation: Winer RL, Gonzales AA, Noonan CJ, Cherne SL, Buchwald DS. (2016). Assessing Acceptability of Self-Sampling Kits, Prevalence, and Risk Factors for Human Papillomavirus Infection in American Indian Women. doi:10.1007/s10900-016-0189-3.

    PMID: 27048284

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    We evaluated the feasibility and acceptability of self-sampling for human papillomavirus (HPV) testing and calculated the prevalence of and risk factors for high-risk (hr) HPV infections in a community-based sample of American Indian women. To this end, we recruited 329 Hopi women aged 21-65 years to self-collect vaginal samples for hrHPV testing. Samples were tested by polymerase chain reaction for 14 hrHPV genotypes. We used Chi square tests to identify correlates of preference for clinician Pap testing versus HPV self-sampling, and age-adjusted Poisson regression to evaluate correlates of hrHPV prevalence. We found that satisfaction with HPV self-sampling was high, with 96 % of women reporting that the sample was easy to collect and 87 % reporting no discomfort. The majority (62 %) indicated that they preferred HPV self-sampling to receiving a Pap test from a clinician. Preference for Pap testing over HPV self-sampling was positively associated with adherence to Pap screening and employment outside the home. All samples evaluated were satisfactory for HPV testing, and 22 % were positive for hrHPV. HrHPV prevalence peaked in the late 20 s and declined with increasing age. HrHPV positivity was inversely associated with having children living the household. In conclusion, HPV self-sampling is feasible and acceptable to Hopi women, and could be effective in increasing rates of cervical cancer screening in Hopi communities. HrHPV prevalence was similar to estimates in the general United States population.


  • Assessing Cultural Competence Among Oncology Surgeons

    Citation: Doorenbos AZ, Morris AM, Haozous EA, Harris H, Flum DR. (2016). Assessing Cultural Competence Among Oncology Surgeons. doi:10.1200/JOP.2015.006932.

    PMID: 26759469

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    PURPOSE: Racial and ethnic minority groups in the United States have the highest mortality rates for the most common cancers. Various factors, including a perceived lack of culturally congruent care and culturally competent providers, might lead minority patients to decline or delay care. As part of a large multimethod study to understand barriers to care among American Indian and Alaskan native patients with cancer, we examined surgical provider attributes associated with culturally congruent care. PATIENTS AND METHODS: Surgical providers from six hospitals in the Puget Sound region of Washington State were invited to participate. Participants completed a 50-item survey that assessed demographic data and incorporated the Cultural Competence Assessment (CCA) and the Marlowe-Crowne Social Desirability Scale. RESULTS: Survey response rate was 51.1% (N = 253). Participants reported treating diverse patient populations; 71% encountered patients from six or more racial and ethnic groups. More than one half of participants (58%) reported completing cultural diversity training, with employer-sponsored training being the most common type reported (48%; 71 of 147). CCA scores ranged from 5.99 to 13.75 of a possible 14 (mean, 10.3; standard deviation, ±1.3), and receipt of diversity training was associated with higher scores than nonreceipt of diversity training (10.56 v 9.82, respectively; P<.001). After controlling for Marlowe-Crowne Social Desirability Scale score and hospital system,participation in diversity training was the variable most significantly associated with CCA score (P<.001). CONCLUSION: Culturally competent care is an essential but often overlooked component of high-quality health care. Future work should compare training offered by various hospital systems.


  • Assessing food selection in a health promotion program: Validation of a brief instrument for

    Citation: Koehler, KMC-S, Leslie. (2000). Assessing food selection in a health promotion program: Validation of a brief instrument for [Article]. 100: 205.

    PMID: 2769223

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Unknown

    Intervention Type(s): Health Education and Promotion

    Provides information on a study which used a brief dietary assessment instrument for American Indian children participating in Pathways to Health, a culturally appropriate, cancer prevention curriculum in the United States. Statistical analyses performed; Results; Conclusions.


  • Assessing HPV and Cervical Knowledge, Preference and HPV Status Among Urban American Indian Women

    Citation: Cina KR, Omidpanah AA, Petereit DG. (2017). Assessing HPV and Cervical Knowledge, Preference and HPV Status Among Urban American Indian Women.

    PMID: 28957617

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Health Education and Promotion

    INTRODUCTION: To evaluate whether or not an educational intervention would lead to a change in knowledge and attitudes about human papillomavirus (HPV), HPV vaccines, and cervical cancer. The HPV status was also investigated for interested participants. METHODS: We provided HPV and cervical cancer education to urban American Indian (AI) women 18 and older using a pre and post-knowledge exam to assess knowledge and attitudes. Women were also given the option to perform vaginal self-tests for high risk HPV (hrHPV) analysis immediately after the education. RESULTS: Ninety-six women participated in our educational sessions. Improvement in performance on a knowledge exam increased from 61.6 to 84.3 percent. Ninety-three women performed the vaginal self-test with 63.1 percent of women preferring vaginal self-testing over conventional screening methods. Thirty-five out of 91 women (38.5 percent) had hrHPV types with 12 of the 35 harboring multiple hrHPV types (13 percent overall). CONCLUSION: HPV and cervical cancer education was beneficial for urban AI women with the majority of women preferring vaginal self-testing. HPV self-testing may be a strategy to improve screening rates for cervical cancer. Urban AI women had high rates of hrHPV compared to rural AI populations as reported in previous studies.


  • Assessing Needs for Cancer Education and Support in American Indian and Alaska Native Communities in the Northwestern United States

    Citation: Harris R, Van Dyke ER, Ton TG, Nass CA, Buchwald D. (2016). Assessing Needs for Cancer Education and Support in American Indian and Alaska Native Communities in the Northwestern United States. doi:10.1177/1524839915611869.

    PMID: 26507742

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship, Treatment

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    American Indians and Alaska Natives (AI/ANs) experience significant cancer disparities. To inform future public health efforts, a web-based needs assessment survey collected quantitative and qualitative data from AI/AN community health workers and cancer survivors in the northwestern United States. Content analysis of qualitative responses identified themes to contextualize quantitative results. Seventy-six AI/AN respondents (93% female) described substantial unmet needs for education and resources to assist cancer survivors, including a shortage of patient navigators, support groups, and home health care workers. Fear of negative outcomes, a culturally rooted avoidance of discussing illness, and transportation difficulties were cited as major barriers to participation in cancer education and receipt of health services. Face-to-face contact was overwhelmingly preferred for community education and support, but many respondents were receptive to other communication channels, including e-mail, social media, and webinars. Survey results highlight the importance of culturally sensitive approaches to overcome barriers to cancer screening and education in AI/AN communities. Qualitative analysis revealed a widespread perception among respondents that available financial and human resources were insufficient to support AI/AN cancer patients' needs. © 2015 Society for Public Health Education.


  • Assessing the national trends in colon cancer among Native Americans: A 12 year SEER database study

    Citation: Thuraisingam R, Jandova J, Pandit V, Michailidou M, Nfonsam VN. (2017). Assessing the national trends in colon cancer among Native Americans: A 12 year SEER database study. doi:10.1016/j.amjsurg.2016.11.033.

    PMID: 28010880

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    INTRODUCTION: Native Americans (NA) form a unique cohort of colon cancer (CC) patients among whom the variability in demographics and cancer characteristics remains unclear. METHODS: We abstracted the national estimates for NA with CC using the Surveillance, Epidemiology, and End Result (SEER) database. Trend analysis of incidence, variation in location and patient demographic analysis were performed. RESULTS: A total number of 26,674 NA with CC were reported during the 12-year study period. While the overall incidence of CC decreased by 12% during the study period, incidence increased by 38% in NA. Incidence of CC was more prevalent and higher increase (42%) seen in NA females than males (p = 0.02; 34%). Stage III tumors represented 29% of all CC, sigmoid colon the most common site location (38%) with 72% of all tumors being moderately differentiated. 55% tumors were localized in left, 36% in right and 9% in transverse colon. 92% of the NA were insured. CONCLUSION: Incidence of CC continues to rise in NA with majority of CC presented at higher stage and moderate differentiation. Published by Elsevier Inc.


  • Association of diabetes and cancer mortality in American Indians: the Strong Heart Study

    Citation: Best LG, García-Esquinas E, Yeh JL, Yeh F, Zhang Y, Lee ET, Howard BV, Farley JH, Welty TK, Rhoades DA, Rhoades ER, Umans JG, Navas-Acien A. (2015). Association of diabetes and cancer mortality in American Indians: the Strong Heart Study. doi:10.1007/s10552-015-0648-7.

    PMID: 26250516

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    PURPOSE: The metabolic abnormalities that accompany diabetes mellitus are associated with an increased risk of many cancers. These associations, however, have not been well studied in American Indian populations, which experience a high prevalence of diabetes. The Strong Heart Study is a population-based, prospective cohort study with extensive characterization of diabetes status. METHODS: Among a total cohort of 4,419 participants who were followed for up to 20 years, 430 cancer deaths were identified. RESULTS: After adjusting for sex, age, education, smoking status, drinking status, and body mass index, participants with diabetes at baseline showed an increased risk of gastric (HR 4.09; 95% CI 1.42-11.79), hepatocellular (HR 2.94; 95% CI 1.17-7.40), and prostate cancer mortality (HR 3.10; 95% CI 1.22-7.94). Further adjustment for arsenic exposure showed a significantly increased risk of all-cause cancer mortality with diabetes (HR 1.27; 95% CI 1.03-1.58). Insulin resistance among participants without diabetes at baseline was associated with hepatocellular cancer mortality (HR 4.70; 95% CI 1.55-14.26). CONCLUSIONS: Diabetes mellitus, and/or insulin resistance among those without diabetes, is a risk factor for gastric, hepatocellular, and prostate cancer in these American Indian communities, although relatively small sample size suggests cautious interpretation. Additional research is needed to evaluate the role of diabetes and obesity on cancer incidence in American Indian communities as well as the importance of diabetes prevention and control in reducing the burden of cancer incidence and mortality in the study population.


  • Associations between CYP19A1 polymorphisms, Native American ancestry, and breast cancer risk and mortality: the Breast Cancer Health Disparities Study

    Citation: Boone SD, Baumgartner KB, Baumgartner RN, Connor AE, Pinkston CM, Rai SN, Riley EC, Hines LM, Giuliano AR, John EM, Stern MC, Torres-Mejía G, Wolff RK, Slattery ML. (2014). Associations between CYP19A1 polymorphisms, Native American ancestry, and breast cancer risk and mortality: the Breast Cancer Health Disparities Study. doi:10.1007/s10552-014-0448-5.

    PMID: 25088806

    Cancer Sites(s): Breast

    Cancer Continuum(s): Prevention

    Intervention Site(s): Biologic

    Intervention Type(s): N/A

    The cytochrome p450 family 19 gene (CYP19A1) encodes for aromatase, which catalyzes the final step in estrogen biosynthesis and conversion of androgens to estrogens. Genetic variation in CYP19A1 is linked to higher circulating estrogen levels and increased aromatase expression. Using data from the Breast Cancer Health Disparities Study, a consortium of three population-based case-control studies in the United States (n = 3,030 non-Hispanic Whites; n = 2,893 Hispanic/Native Americans (H/NA) and Mexico (n = 1,810), we examined influence of 25 CYP19A1 tagging single-nucleotide polymorphisms (SNPs) on breast cancer risk and mortality, considering NA ancestry. Odds ratios (ORs) and 95 % confidence intervals (CIs) and hazard ratios estimated breast cancer risk and mortality. After multiple comparison adjustment, none of the SNPs were significantly associated with breast cancer risk or mortality. Two SNPs remained significantly associated with increased breast cancer risk in women of moderate to high NA ancestry (?29 %): rs700518, ORGG 1.36, 95 % CI 1.11-1.67 and rs11856927, ORGG 1.35, 95 % CI 1.05-1.72. A significant interaction was observed for rs2470144 and menopausal status (p adj = 0.03); risk was increased in postmenopausal (ORAA 1.22, 95 % CI 1.05-1.14), but not premenopausal (ORAA 0.78, 95 % CI 0.64-0.95) women. The absence of an overall association with CYP19A1 and breast cancer risk is similar to previous literature. However, this analysis provides support that variation in CYP19A1 may influence breast cancer risk differently in women with moderate to high NA ancestry. Additional research is warranted to investigate the how variation in an estrogen-regulating gene contributes to racial/ethnic disparities in breast cancer.


  • Barriers to Cancer Care among American Indians and Alaska Natives

    Citation: Sawchuk CN, Van Dyke E, Omidpanah A, Russo JE, Tsosie U, Goldberg J, Buchwald D. (2016). Barriers to Cancer Care among American Indians and Alaska Natives. doi:10.1353/hpu.2016.0003.

    PMID: 27763460

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    INTRODUCTION: Cancer is among the leading causes of death in American Indians and Alaska Natives (AI/ANs), with rates increasing over the last two decades. Barriers in accessing cancer screening and treatment likely contribute to this situation. METHODS: We administered structured clinical interviews and conducted descriptive and multiple linear regression analyses of demographic, health, spiritual, and treatment factors associated with self-reported barriers to cancer care among 143 adult AI/AN oncology patients. RESULTS: High levels of satisfaction with cancer care, older age, positive mental health quality of life, and positive physical health quality of life were all significantly associated with lower scores for cancer care barriers, explaining 27% of the total model variance. CONCLUSION: Addressing barriers to cancer care might help to reduce health disparities among AI/AN oncology patients. Future research should determine whether reducing barriers improves engagement with cancer treatment and overall health outcomes.


  • Barriers, supports, and effective interventions for uptake of human papillomavirus- and other vaccines within global and Canadian Indigenous peoples: a systematic review protocol

    Citation: Mrklas KJ, MacDonald S, Shea-Budgell MA, Bedingfield N, Ganshorn H, Glaze S, Bill L, Healy B, Healy C, Guichon J, Colquhoun A, Bell C, Richardson R, Henderson R, Kellner J, Barnabe C, Bednarczyk RA, Letendre A, Nelson GS. (2018). Barriers, supports, and effective interventions for uptake of human papillomavirus- and other vaccines within global and Canadian Indigenous peoples: a systematic review protocol. doi:10.1186/s13643-018-0692-y.

    PMID: 29499749

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Despite the existence of human papilloma virus (HPV) vaccines with demonstrated safety and effectiveness and funded HPV vaccination programs, coverage rates are persistently lower and cervical cancer burden higher among Canadian Indigenous peoples. Barriers and supports to HPV vaccination in Indigenous peoples have not been systematically documented, nor have interventions to increase uptake in this population. This protocol aims to appraise the literature in Canadian and global Indigenous peoples, relating to documented barriers and supports to vaccination and interventions to increase acceptability/uptake or reduce hesitancy of vaccination. Although HPV vaccination is the primary focus, we anticipate only a small number of relevant studies to emerge from the search and will, therefore, employ a broad search strategy to capture literature related to both HPV vaccination and vaccination in general in global Indigenous peoples. METHODS: Eligible studies will include global Indigenous peoples and discuss barriers or supports and/or interventions to improve uptake or to reduce hesitancy, for the HPV vaccine and/or other vaccines. Primary outcomes are documented barriers or supports or interventions. All study designs meeting inclusion criteria will be considered, without restricting by language, location, or data type. We will use an a priori search strategy, comprised of key words and controlled vocabulary terms, developed in consultation with an academic librarian, and reviewed by a second academic librarian using the PRESS checklist. We will search several electronic databases from date of inception, without restrictions. A pre-defined group of global Indigenous websites will be reviewed for relevant gray literature. Bibliographic searches will be conducted for all included studies to identify relevant reviews. Data analysis will include an inductive, qualitative, thematic synthesis and a quantitative analysis of measured barriers and supports, as well as a descriptive synthesis and quantitative summary of measures for interventions. DISCUSSION: To our knowledge, this study will contribute the first systematic review of documented barriers, supports, and interventions for vaccination in general and for HPV vaccination. The results of this study are expected to inform future research, policies, programs, and community-driven initiatives to enhance acceptability and uptake of HPV vaccination among Indigenous peoples. SYSTEMATIC REVIEW REGISTRATION: PROSPERO Registration Number: CRD42017048844.


  • Behavioral health aides in rural Alaska: their experience in caring for Alaska Native cancer survivors

    Citation: Kelley SF, DeCourtney C, Owens X. (2014). Behavioral health aides in rural Alaska: their experience in caring for Alaska Native cancer survivors. doi:10.1007/s13187-014-0609-y.

    PMID: 24459014

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    The Alaska Native Tribal Health Consortium conducted a statewide survey of rural community behavioral health aides (BHAs) within the tribal health system to assess their need for psychological and emotional support training for their work with cancer survivors. An electronic survey was distributed to all 114 rural BHAs in Alaska. They were asked about cancer survivors living in their community, whether they had been called to provide counseling to those survivors and about their comfort level in addressing cancer-related emotional issues and concerns experience by the patients and their families. Sixty-one (54 %) BHAs responded, 62 % knew of cancer survivors in their community, and 88 % of whom agreed that it is their job to provide support to those cancer survivors. Of the 47 % of BHAs who had provided counseling to cancer survivors, 63 % noted a lack of adequate training about how to provide that counseling. Dealing with emotional concerns was reported as the most difficult issue. Almost all (98 %) reported that they would likely participate in training to improve counseling skills. Most BHAs in rural Alaska know of a cancer survivor in their community and may be called on to provide mental health services, but few report adequate training in how to provide these services. Given the remote locations in which many BHAs work and the lack of local resources to guide them, more education is needed about how to support cancer survivors. This study provides information to help guide development of content of that education.


  • Breast cancer detective: A computer game to teach breast cancer screening to Native American patients

    Citation: Roubidoux, MA. (2005). Breast cancer detective: A computer game to teach breast cancer screening to Native American patients. 20: 87-91.

    PMID: 15916527

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Innovative Technology, Training for Health Professionals

    Background. Few computer based information resources about breast cancer screening are interactive or are culturally appropriate for Native American patient education. Methods. An interactive computer game was designed by modifications to a previously developed game for medical students about breast cancer screening. Results. 'Breast Cancer Detective-Native Patient Version' incorporates problem-based learning and competitive play and has culturally relevant graphics, situations, and language for patients. Conclusions. The computer game is targeted for Native American health care, designed to improve compliance with breast screening in this underserved population and improve cultural awareness for health care students and providers.


  • Breast Cancer Education for Navajo Women: a Pilot Study Evaluating a Culturally Relevant Video

    Citation: Sanderson, PRT-S, Nicolette I. Baldwin, Julie A. Sandoval, Nellie Robinson, Frances. (2010). Breast Cancer Education for Navajo Women: a Pilot Study Evaluating a Culturally Relevant Video. 25: 217-223.

    PMID: 20111913

    Cancer Sites(s): Breast

    Cancer Continuum(s): Treatment

    Intervention Site(s): Health-Care System

    Intervention Type(s): Health Education and Promotion, Innovative Technology

    This pilot study evaluated a culturally specific video designed to teach Navajo women about breast cancer treatment options. Fourteen Navajo women diagnosed with breast cancer and 26 healthcare providers participated in a mixed-method evaluation that documented their perceptions immediately and 6 months after viewing the video. After initial viewing, women reported reduced anxiety about treatment and interest in support groups. Six months later, women said the video prompted them to seek more information from printed sources and their provider. Younger Navajo women who were 44 to 51 years old were more likely to attend support groups than women who were 55-67 years. Providers corroborated the positive effects of the video. The providers believed the video encouraged patients to seek information about breast cancer and to ask questions about treatment plans and side effects. A culturally relevant video for Navajo women can be an effective teaching tool and can enhance patient-provider communication.


  • Breast cancer literacy and health beliefs related to breast cancer screening among American Indian women

    Citation: Roh S, Burnette CE, Lee YS, Jun JS, Lee HY, Lee KH. (2018). Breast cancer literacy and health beliefs related to breast cancer screening among American Indian women. doi:10.1080/00981389.2018.1455789.

    PMID: 29589809

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection, Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    The purpose of this article is to examine the health beliefs and literacy about breast cancer and their relationship with breast cancer screening among American Indian (AI) women. Using the Health Belief Model (HBM) and hierarchical logistic regression with data from a sample of 286 AI female adults residing in the Northern Plains, we found that greater awareness of breast cancer screening was linked to breast cancer screening practices. However, perceived barriers, one of the HBM constructs, prevented such screening practices. This study suggested that culturally relevant HBM factors should be targeted when developing culturally sensitive breast cancer prevention efforts.


  • Breast cancer mortality among American Indian and Alaska Native women, 1990-2009

    Citation: White A, Richardson LC, Li C, Ekwueme DU, Kaur JS. (2014). Breast cancer mortality among American Indian and Alaska Native women, 1990-2009. doi:10.2105/AJPH.2013.301720.

    PMID: 24754658

    Cancer Sites(s): Breast

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We compared breast cancer death rates and mortality trends among American Indian/Alaska Native (AI/AN) and White women using data for which racial misclassification was minimized. METHODS: We used breast cancer deaths and cases linked to Indian Health Service (IHS) data to calculate age-adjusted rates and 95% confidence intervals (CIs) by IHS-designated regions from 1990 to 2009 for AI/AN and White women; Hispanics were excluded. Mortality-to-incidence ratios (MIR) were calculated for 1999 to 2009 as a proxy for prognosis after diagnosis. RESULTS: Overall, the breast cancer death rate was lower in AI/AN women (21.6 per 100,000) than in White women (26.5). However, rates in AI/ANs were higher than rates in Whites for ages 40 to 49 years in the Alaska region, and ages 65 years and older in the Southern Plains region. White death rates significantly decreased (annual percent change [APC]?=?-2.1; 95% CI = -2.3, -2.0), but regional and overall AI/AN rates were unchanged (APC = 0.9; 95% CI = 0.1, 1.7). AI/AN women had higher MIRs than White women. CONCLUSIONS: There has been no improvement in death rates among AI/AN women. Targeted screening and timely, high-quality treatment are needed to reduce mortality from breast cancer in AI/AN women.


  • Bridging storytelling traditions with digital technology

    Citation: Cueva, MK, Regina Revels, Laura J. Cueva, Katie Dignan, Mark Lanier, Anne P. (2013). (20717) Bridging storytelling traditions with digital technology. 72: 270-275.

    PMID: 23984267

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Health Worker, Innovative Technology

    Objective. The purpose of this project was to learn how Community Health Workers (CHWs) in Alaska perceived digital storytelling as a component of the 'Path to Understanding Cancer' curriculum and as a culturally respectful tool for sharing cancer-related health messages. Design. A pre-course written application, end-of-course written evaluation, and internet survey informed this project. Methods. Digital storytelling was included in seven 5-day cancer education courses (May 2009-2012) in which 67 CHWs each created a personal 2-3 minute cancer-related digital story. Participant-chosen digital story topics included tobacco cessation, the importance of recommended cancer screening exams, cancer survivorship, loss, grief and end-of-life comfort care, and self-care as patient care providers. All participants completed an end-of-course written evaluation. In July 2012, contact information was available for 48 participants, of whom 24 completed an internet survey. Results. All 67 participants successfully completed a digital story which they shared and discussed with course members. On the written post-course evaluation, all participants reported that combining digital storytelling with cancer education supported their learning and was a culturally respectful way to provide health messages. Additionally, 62 of 67 CHWs reported that the course increased their confidence to share cancer information with their communities. Up to 3 years post-course, all 24 CHW survey respondents reported they had shown their digital story. Of note, 23 of 24 CHWs also reported change in their own behavior as a result of the experience. Conclusions. All CHWs, regardless of computer skills, successfully created a digital story as part of the cancer education course. CHWs reported that digital stories enhanced their learning and were a culturally respectful way to share cancer-related information. Digital storytelling gave the power of the media into the hands of CHWs to increase their cancer knowledge, facilitate patient and community cancer conversations, and promote cancer awareness and wellness.


  • Building Capacity for Productive Indigenous Community-University Partnerships

    Citation: Gittelsohn J, Belcourt A, Magarati M, Booth-LaForce C, Duran B, Mishra SI, Belone L, Jernigan VBB. (2018). Building Capacity for Productive Indigenous Community-University Partnerships. doi:10.1007/s11121-018-0949-7.

    PMID: 30284683

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    This paper describes capacity development as a key aspect of community-based research with indigenous communities. University research engagement with indigenous communities includes extensive, and often negative, historical antecedents. We discuss strategies for developing effective, egalitarian, and balanced indigenous community-university relationships to build research capacity of these communities, and to create sustainable partnerships to improve health and wellness, and to reduce health disparities. We draw on the experience of eight investigators conducting research with indigenous communities to assess effective strategies for building and enhancing partnerships, including (1) supporting indigenous investigator development; (2) developing university policies and practices sensitive and responsive to Indigenous community settings and resources, and training for research; (3) developing community and scientifically acceptable research designs and practices; (4) aligning indigenous community and university review boards to enhance community as well as individual protection (e.g., new human subjects training for Indigenous research, joint research oversight, adaptation of shorter consent forms, appropriate incentives, etc.); (5) determining appropriate forms of dissemination (i.e., Indian Health Services provider presentation, community reports, digital stories, etc.); (6) best practices for sharing credit; and (7) reducing systematic discrimination in promotion and tenure of indigenous investigators and allies working in indigenous communities.


  • Building Native Hawaiian capacity in cancer research and programming. A legacy of 'Imi Hale

    Citation: Braun, KLT, Joann U. Santos, LorrieAnn Aitaoto, Nia Chong, Clayton. (2006). Building Native Hawaiian capacity in cancer research and programming. A legacy of 'Imi Hale. 107: 2082-2090.

    PMID: 16977599

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    In 2000, cancer health indicators for Native Hawaiians were worse than those of other ethnic groups in Hawai'i, and Native Hawaiians were under-represented in research endeavors. To build capacity to reduce cancer health disparities, 'Imi Hale applied principles of community-based participatory research (CBPR) and empowerment theory. Strategies included: 1) engaging Native Hawaiians in defining cancer priorities; 2) developing culturally appropriate processes and products; 3) supplementing primary and secondary cancer prevention activities; 4) offering skills training and technical assistance; and 5) providing an infrastructure to support culturally appropriate research. Between 2000 and 2005, 'Imi Hale involved more than 8000 Native Hawaiians in education, training, and primary and secondary prevention activities; developed 24 culturally tailored educational products (brochures, curricula, and self-help kits); secured $1.1 million in additional program and research funds; trained 98 indigenous researchers, 79 of whom worked on research projects; and engaged more than 3000 other Native Hawaiians as research participants and advisors. Evidence of empowerment was seen in increased individual competence, enhanced community capacity and participation, reduced barriers, and improved supports to address cancer in Hawaiian communities. Operationalizing CBPR and empowerment requires a commitment to involving as many people as possible, addressing community priorities, following cultural protocol, developing and transferring skills, and supporting an infrastructure to reduce barriers and build supports to sustain change. This approach is time consuming, but necessary for building competence and capacity, especially in indigenous and minority communities. Cancer 2006. (c) 2006 American Cancer Society.;


  • Cadmium exposure and cancer mortality in a prospective cohort: the strong heart study

    Citation: García-Esquinas E, Pollan M, Tellez-Plaza M, Francesconi KA, Goessler W, Guallar E, Umans JG, Yeh J, Best LG, Navas-Acien A. (2014). Cadmium exposure and cancer mortality in a prospective cohort: the strong heart study. doi:10.1289/ehp.1306587.

    PMID: 24531129

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: Cadmium (Cd) is a toxic metal classified as a human carcinogen by the International Agency for Research on Cancer. OBJECTIVE: We evaluated the association of long-term Cd exposure, as measured in urine, with cancer mortality in American Indians from Arizona, Oklahoma, and North and South Dakota who participated in the Strong Heart Study during 1989-1991. METHODS: The Strong Heart Study was a prospective cohort study of 3,792 men and women 45-74 years of age who were followed for up to 20 years. Baseline urinary Cd (U-Cd) was measured using inductively coupled plasma mass spectrometry. We assessed cancer events by annual mortality surveillance. RESULTS: The median (interquintile range) U-Cd concentration was 0.93 (0.55, 1.63) ?g/g creatinine. After adjusting for sex, age, smoking status, cigarette pack-years, and body mass index, the adjusted hazard ratios (HRs) comparing the 80th versus the 20th percentiles of U-Cd were 1.30 (95% CI: 1.09, 1.55) for total cancer, 2.27 (95% CI: 1.58, 3.27) for lung cancer, and 2.40 (95% CI: 1.39, 4.17) for pancreatic cancer mortality. For all smoking-related cancers combined, the corresponding HR was 1.56 (95% CI: 1.24, 1.96). Cd was not significantly associated with liver, esophagus and stomach, colon and rectum, breast, prostate, kidney, or lymphatic and hematopoietic cancer mortality. On the basis of mediation analysis, we estimated that the percentage of lung cancer deaths due to tobacco smoking that could be attributed to Cd exposure was 9.0% (95% CI: 2.8, 21.8). CONCLUSIONS: Low-to-moderate Cd exposure was prospectively associated with total cancer mortality and with mortality from cancers of the lung and pancreas. The implementation of population-based preventive measures to decrease Cd exposure could contribute to reducing the burden of cancer.


  • Canadian Alliance for Healthy Hearts and Minds: First Nations Cohort Study Rationale and Design

    Citation: Anand SS, Abonyi S, Arbour L, Brook J, Bruce S, Castleden H, Desai D, de Souza RJ, Harris S, Irvine J, Lai C, Lewis D, Oster RT, Poirier P, Toth EL, Bannon K, Chrisjohn V, Davis AD, L'Hommecourt J, Littlechild R, McMullin K, McIntosh S, Morrison J, Picard M, Landing First Nation P, M Thomas M, Tusevljak N, Friedrich MG, Tu JV. (2018). Canadian Alliance for Healthy Hearts and Minds: First Nations Cohort Study Rationale and Design. doi:10.1353/cpr.2018.0006.

    PMID: 29606693

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: This is the first national indigenous cohort study in which a common, in-depth protocol with a common set of objectives has been adopted by several indigenous communities across Canada. OBJECTIVES: The overarching objective of the Canadian Alliance for Healthy Hearts and Minds (CAHHM) cohort is to investigate how the community-level environment is associated with individual health behaviors and the presence and progression of chronic disease risk factors and chronic diseases such as cardiovascular disease (CVD) and cancer. METHODS: CAHHM aims to recruit approximately 2,000 First Nations indigenous individuals from up to nine communities across Canada and have participants complete questionnaires, blood collection, physical measurements, cognitive assessments, and magnetic resonance imaging (MRI). RESULTS: Through individual- and community-level data collection, we will develop an understanding of the specific role of the socioenvironmental, biological, and contextual factors have on the development of chronic disease risk factors and chronic diseases. CONCLUSIONS: Information collected in the indigenous cohort will be used to assist communities to develop local management strategies for chronic disease, and can be used collectively to understand the contextual, environmental, socioeconomic, and biological determinants of differences in health status in harmony with First Nations beliefs and reality.


  • Cancer among American Indians - Identifying Priority Areas in Oklahoma

    Citation: Martinez SA, Janitz AE, Erb-Alvarez J, Mowls DS, Campbell JE, Anderson T. (2016). Cancer among American Indians - Identifying Priority Areas in Oklahoma.

    PMID: 27909347

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: We describe and compare cancer incidence and mortality among American Indians (AI/ANs) and whites in nine Indian Health Service (IHS) Service Units in Oklahoma. METHODS: Using data from the Oklahoma Central Cancer Registry and the web-based OK2SHARE database, we obtained age-adjusted cancer incidence rates from 1997 to 2012 and cancer mortality rates from 1999 to 2009 for AI/ANs and whites in Oklahoma. We examined differences in primary site, percentage of late stage diagnoses, and trends over time. RESULTS: AI/ANs consistently had higher cancer incidence and mortality compared to whites in Oklahoma. The magnitude of disparity for cancer incidence and mortality varied by IHS Service Unit and by gender. The top three cancer sites were the same for all Service Units. The percentage of late stage diagnosis also varied by region. CONCLUSIONS: We identify priority areas where cancer disparity challenges exist among AI/ANs in Oklahoma.


  • Cancer Care Access and Outcomes for American Indian Populations in the United States: Challenges and Models for Progress

    Citation: Guadagnolo BA, Petereit DG, Coleman CN. (2017). Cancer Care Access and Outcomes for American Indian Populations in the United States: Challenges and Models for Progress. doi:10.1016/j.semradonc.2016.11.006.

    PMID: 28325240

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship, Treatment, Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Low socioeconomic and health care access realities of being American Indian/Alaskan Native (AI/AN) in the United States combined with decades of data documenting poor cancer outcomes for this population provide a population nested within the United States that is analogous to the cancer care landscape of low- and middle-income countries internationally. We reviewed the medical literature with respect to cancer prevention, access to cancer treatment, and access to effective supportive and palliative care for AI/AN populations in the United States. Research confirms poorer cancer outcomes, suboptimal cancer screening, and high-risk cancer behaviors among AI/AN communities. AI/AN cancer patients are less likely to undergo recommended cancer surgeries, adjuvant chemotherapy, and radiation therapy than their White counterparts. Studies including both rural and urban survivors with AI cancer revealed barriers to receipt of optimal cancer symptom management and proportionally lower hospice use among AI/AN populations. Culturally tailored programs in targeted communities have been shown to mitigate the observed cancer-related health disparities among AI/AN communities. There is still much work to be done to improve cancer-related health outcomes in AI/AN communities, and the goals of the providers serving them corresponds with those propelling the growing interest in global oncology equity. Policy work and more funding are needed to continue to build upon the work that the Indian Health Service and established cancer-related health programs have begun in AI/AN communities.


  • Cancer disparities among Alaska native people, 1970-2011

    Citation: Kelly JJ, Lanier AP, Schade T, Brantley J, Starkey BM. (2014). Cancer disparities among Alaska native people, 1970-2011. doi:10.5888/pcd11.130369.

    PMID: 25523352

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Diagnosis

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    INTRODUCTION: Cancer is the leading cause of death among Alaska Native people. The objective of this study was to examine cancer incidence data for 2007-2011, age-specific rates for a 15-year period, incidence trends for 1970-2011, and mortality trends for 1990-2011. METHODS: US data were from the Surveillance, Epidemiology, and End Results (SEER) Program SEER*Stat database and from the SEER Alaska Native Tumor Registry. Age-adjusted cancer incidence rates among Alaska Native people and US whites were compared using rate ratios. Trend analyses were performed using the Joinpoint Regression Program. Mortality data were from National Center for Health Statistics. RESULTS: During 2007-2011 the cancer incidence rate among Alaska Native women was 16% higher than the rate among US white women and was similar among Alaska Native men and US white men. Incidence rates among Alaska Native people exceeded rates among US whites for nasopharyngeal, stomach, colorectal, lung, and kidney cancer. A downward trend in colorectal cancer incidence among Alaska Native people occurred from 1999 to 2011. Significant declines in rates were not observed for other frequently diagnosed cancers or for all sites combined. Cancer mortality rates among Alaska Native people during 2 periods, 1990-2000 and 2001-2011, did not decline. Cancer mortality rates among Alaska Native people exceeded rates among US whites for all cancers combined; for cancers of the lung, stomach, pancreas, kidney, and cervix; and for colorectal cancer. CONCLUSION: Increases in colorectal screening among Alaska Native people may be responsible for current declines in colorectal cancer incidence; however; improvements in treatment of colon and rectal cancers may also be contributing factors.


  • CANCER EDUCATION THROUGH DANCE: FROM TAPROOT TO GRACE NOTE

    Citation: Cueva, MC, Katie. (2008). CANCER EDUCATION THROUGH DANCE: FROM TAPROOT TO GRACE NOTE [Article]. 41: 135-142.

    PMID:

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Arts Program, Community Health Worker

    Dance, as a way to create meaning, was included in a week-long cancer education course for community health workers in Alaska. The eight course participants were Alaska Native women from throughout Alaska, including those of Yup'ik, Inupiaq, Aleut, Tlingit, and Athabascan heritage. As reported by participants on end-of-course written evaluations and post-course written email correspondence, the expressive movements of dance as part of cancer education supported laughter, relaxation, fun, healing, learning, and deeper understanding. (English) [ABSTRACT FROM AUTHOR] La danza, como forma de creación de contenidos, fue incluida en un curso de una semana de duración sobre educación en materia de cáncer dirigido a personas que trabajan en el campo de la salud en comunidades de Alaska. Las ocho participantes eran mujeres nativas de Alaska provenientes de todas las regiones del estado, entre elias mujeres de origen yupik, inupiaq, aleutiano, tlingit, y atabasco. Las participantes informaron - tanto en las evaluaciones escritas realizadas al final del curso como en la correspondencia mantenida por correo electrónico luego del mismo - que los movimientos expresivos de la danza como parte de la educación en materia de cáncer sirven de apoyo a la risa, la relajación, la diversión, la curación, el aprendizaje y a una comprensión más profunda. (Spanish) [ABSTRACT FROM AUTHOR] Copyright of Convergence is the property of International Council for Adult Education and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)


  • Cancer in First Nations people living in British Columbia, Canada: an analysis of incidence and survival from 1993 to 2010

    Citation: McGahan CE, Linn K, Guno P, Johnson H, Coldman AJ, Spinelli JJ, Caron NR. (2017). Cancer in First Nations people living in British Columbia, Canada: an analysis of incidence and survival from 1993 to 2010. doi:10.1007/s10552-017-0950-7.

    PMID: 28887646

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: For First Nations (FN) peoples living in British Columbia (BC), little is known regarding cancer in the population. The aim of this study was to explore cancer incidence and survival in the FN population of BC and compare it to the non-FN population. METHODS: All new cancers diagnosed from 1993 to 2010 were linked to the First Nations Client File (FNCF). Age-standardized incidence rates (ASIR) and rate ratios, and 1- and 5-year cause-specific survival estimates and hazard ratios were calculated. Follow-up end date for survival was December 31, 2011 and follow-up time was censored at a maximum of 15 years. RESULTS: ASIR of colorectal cancer (male SRR = 1.42, 95% CI 1.25-1.61; female SRR = 1.21, 95% CI 1.06-1.38) and cervical cancer (SRR = 1.84, 95% CI 1.45-2.33) were higher overall in FN residents in BC, compared to non-FN residents. Incidence rates of almost all other cancers were generally similar or lower in FN populations overall and by sex, age, and period categories, compared to non-FN residents. Trends in ASIR over time were similar except for lung (increasing for FN, decreasing for non-FN) and colorectal cancers (increasing for FN, decreasing for non-FN). Conversely, survival rates were generally lower for FN, with differences evident for some cancer sites at 1 year following diagnosis. CONCLUSION: FN people living in BC face unique cancer issues compared to non-FN people. Higher incidence and lower survival associated with certain cancer types require further research to look into the likely multifaceted basis for these findings.


  • Cancer in Guam and Hawaii: A comparison of two U.S. Island populations

    Citation: Hernandez BY, Bordallo RA, Green MD, Haddock RL. (2017). Cancer in Guam and Hawaii: A comparison of two U.S. Island populations. doi:10.1016/j.canep.2017.08.005.

    PMID: 29120826

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Cancer disparities within and across populations provide insight into the influence of lifestyle, environment, and genetic factors on cancer risk. METHODS: Guam cancer incidence and mortality were compared to that of Hawaii using data from their respective population-based, central cancer registries. RESULTS: In 2009-2013, overall cancer incidence was substantially lower in Guam than in Hawaii for both sexes while overall cancer mortality was higher for Guam males. Cervical cancer incidence and prostate cancer mortality were higher in Guam. Both incidence and mortality were higher among Guam men for cancers of the lung & bronchus, liver & intrahepatic bile duct, and nasopharynx; Chamorro men were disproportionately affected by these cancers. Filipinos and Whites in Guam had lower overall cancer incidence compared to Filipinos and Whites in Hawaii. Although breast cancer incidence was significantly lower in Guam compared to Hawaii, women in Guam presented at younger ages and with rarer disease histologies such as inflammatory carcinoma were more prevalent. Guam patients were also diagnosed at younger ages for cancers of bladder, pancreas, colon & rectum, liver & intrahepatic bile duct, lung & bronchus, stomach, non-Hodgkin lymphoma, and leukemia. CONCLUSION: Smoking, infectious agents, and betel nut chewing appear to be important contributors to the burden of cancer in Guam. Earlier onset of cancer in Guam suggests earlier age of exposure to key risk factors and/or a more aggressive pathogenesis. Contrasting cancer patterns within Guam and between Guam and Hawaii underscore the potential influence of genes, lifestyle, and environmental factors on cancer development and progression. Copyright © 2017 Elsevier Ltd. All rights reserved.


  • Cancer incidence among First Nations adults in Canada: follow-up of the 1991 Census Mortality Cohort (1992-2009)

    Citation: Mazereeuw MV, Withrow DR, Diane Nishri E, Tjepkema M, Marrett LD. (2018). Cancer incidence among First Nations adults in Canada: follow-up of the 1991 Census Mortality Cohort (1992-2009). doi: 10.17269/s41997-018-0091-0.

    PMID: 29981110

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Diagnosis

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVES: Estimate site-specific cancer incidence rates for a wide range of cancers in First Nations adults in Canada, and compare these with rates in non-Aboriginal adults. METHODS: Responses from persons aged 25 and older to the 1991 Long Form Census were linked to national mortality and cancer databases. First Nations- and non-Aboriginal-specific incidence rates were age-standardized to the world standard population. The sex- and site-specific relative risks (RR) of cancer in First Nations compared to those in non-Aboriginal adults were estimated with Poisson regression. Results were stratified by residence on-reserve (all cancers combined) and region of Canada (four most common cancer sites). RESULTS: Compared to non-Aboriginal adults, First Nations had higher incidence of colon and rectum, kidney, cervix, and liver cancers and lower incidence of prostate, breast, bladder, uterus, ovary, and brain cancers, as well as non-Hodgkin lymphoma, leukemia, and melanoma. First Nations women additionally had higher incidence of stomach, gallbladder, and laryngeal cancers and lower incidence of thyroid cancers compared to non-Aboriginal women. The higher relative incidence of stomach and gallbladder cancers was observed only among First Nations adults who reported living on-reserve. Incidence of lung cancer was similar for First Nations and non-Aboriginal adults nationally, though variation by region of Canada was observed. CONCLUSION: First Nations people in Canada have disproportionately high rates of certain cancers, providing evidence to support public health policy and programming. More research is needed to identify factors contributing to the significantly lower incidence observed for various cancer types. Novel methods for studying disparities in cancer incidence among First Nations people are required to support ongoing cancer control planning and advocacy.


  • Cancer incidence and staging among American Indians in Oklahoma

    Citation: Campbell JE, Martinez SA, Janitz AE, Pate AE, Erb-Alvarez J, Wharton DF, Gahn D, Tall VL, Snider C, Anderson T, Peercy M. (2014). Cancer incidence and staging among American Indians in Oklahoma.

    PMID: 24800463

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: This study describes overall and site specific cancer incidence among AI/ANs compared to whites in Oklahoma and differences in cancer staging. METHODS: Age-adjusted incidence rates obtained from the Oklahoma Central Cancer Registry are presented for all cancer sites combined and for the most common cancer sites among AI/ANs with comparisons to whites. Percentages of late stage cancers for breast, colorectal, and melanoma cancers are also presented. RESULTS: AI/ANs had a significantly higher overall cancer incidence rate compared to whites (629.8/100,000 vs. 503.3/100,000), with a rate ratio of 1.25 (95% CI: 1.22, 1.28). There was a significant disparity in the percentage of late stage melanoma cancers between 2005 and 2009, with 14.0% late stage melanoma for whites and 20.0% for AI/ANs (p-value:0.03). CONCLUSIONS: Overall, there were cancer disparities between AI/ANs and whites in Oklahoma. Incidence rates were higher among AI/ANs for all cancers and many site specific cancers.


  • Cancer incidence, morbidity, and survival in Canadian first nation children: a Manitoba population-based study from the cancer in young people in Canada (CYP-C) registry

    Citation: Stammers DM, Israels SJ, Lambert PJ, Cuvelier GD. (2014). Cancer incidence, morbidity, and survival in Canadian first nation children: a Manitoba population-based study from the cancer in young people in Canada (CYP-C) registry. doi:10.1002/pbc.25005.

    PMID: 24616082

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Health disparities between Canadian First Nation (FN) people and the rest of the national population exist. No studies have specifically documented cancer-related health outcomes in Canadian FN children. The purpose of this study was to describe the incidence of pediatric malignancies in Manitoba FN children, and to compare morbidity patterns and survival between FN and non-FN children with cancer in the Canadian province of Manitoba. PROCEDURE: A retrospective, population-based review of all children (0-14.99 years) diagnosed with malignancy (2001-2008) in Manitoba, Canada was undertaken using the Cancer in Young People in Canada registry. FN children were compared to the non-FN population for markers of morbidity and survival. RESULTS: The average annual age-standardized incidence rate for all childhood cancers in FN children was 132 per 1,000,000 per year. 240 children were included in the morbidity and survival analyses (38 FN; 202 non-FN). No differences were found between FN and non-FN children in time from first presentation of symptoms to consultation with an oncology specialist or diagnosis, or number of hospital admissions / total days of admission for treatment complications. Overall survival was inferior for FN children in univariable analysis (P?=?0.048) but not when risk group was included in a multivariable analysis (P?=?0.15). No difference in event free survival or cumulative incidence of relapse was identified. CONCLUSION: The estimated incidence of childhood cancers in the Manitoba FN population is similar to provincial incidence rates. No differences in morbidity patterns or survival were found between Manitoba FN and non-FN children with cancer. © 2014 Wiley Periodicals, Inc.


  • Cancer incidence, mortality, and stage at diagnosis in First Nations living in Manitoba

    Citation: Decker KM, Kliewer EV, Demers AA, Fradette K, Biswanger N, Musto G, Elias B, Turner D. (2016). Cancer incidence, mortality, and stage at diagnosis in First Nations living in Manitoba. doi:10.3747/co.23.2906.

    PMID: 27536172

    Cancer Sites(s): Breast, Colorectal

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: In the present study, we examined breast (bca) and colorectal cancer (crc) incidence and mortality and stage at diagnosis for First Nations (fn) individuals and all other Manitobans (aoms). METHODS: Several population-based databases were linked to determine ethnicity and to calculate age-standardized incidence and mortality rates. Logistic regression was used to compare bca and crc stage at diagnosis. RESULTS: From 1984-1988 to 2004-2008, the incidence of bca increased for fn and aom women. Breast cancer mortality increased for fn women and decreased for aom women. First Nations women were significantly more likely than aom women to be diagnosed at stages iii-iv than at stage i [odds ratio (or) for women ?50 years of age: 3.11; 95% confidence limits (cl): 1.20, 8.06; or for women 50-69 years of age: 1.72; 95% cl: 1.03, 2.88). The incidence and mortality of crc increased for fn individuals, but decreased for aoms. First Nations status was not significantly associated with crc stage at diagnosis (or for stages i-ii compared with stages iii-iv: 0.98; 95% cl: 0.68, 1.41; or for stages i-iii compared with stage iv: 0.91; 95% cl: 0.59, 1.40). CONCLUSIONS: Our results underscore the need for improved cancer screening participation and targeted initiatives that emphasis collaboration with fn communities to reduce barriers to screening and to promote healthy lifestyles.


  • Cancer Journey for American Indians and Alaska Natives in the Pacific Northwest

    Citation: Haozous EA, Doorenbos A, Alvord LA, Flum DR, Morris AM. (2016). Cancer Journey for American Indians and Alaska Natives in the Pacific Northwest. doi:10.1188/16.ONF.625-635.

    PMID: 27541555

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    PURPOSE/OBJECTIVES: To describe the experiences of American Indian and Alaska Native cancer survivors to improve understanding of the trajectory of cancer treatment. . RESEARCH APPROACH: Qualitative focus group research. . SETTING: Rural and geographically isolated American Indian and Alaska Native communities in the Pacific Northwest. . PARTICIPANTS: 30 American Indian and Alaska Native cancer survivors or caregivers. . METHODOLOGIC APPROACH: The authors analyzed data from two focus groups with cancer survivors by using thematic analysis informed by indigenous methodologies. . FINDINGS: Based on focus group findings, the authors developed a conceptual model of the cancer experience called Rough Waters. Participants described their cancer experience as a collective journey involving family and friends and requiring resources to offset challenges along the way. Dominant themes were delays, isolation, communication, money, advocacy, spirituality, and family involvement. . CONCLUSIONS: American Indians and Alaska Natives in the Pacific Northwest have special cultural needs during cancer care. The current study provides examples that can guide patient-provider interactions. . INTERPRETATION: Using the metaphor of cancer as a journey, clinicians can begin a dialogue to identify what will impede or assist the cancer journey for their American Indian and Alaska Native patients.


  • Cancer risk factors and screening in First Nations in Ontario

    Citation: Mazereeuw MV, Yurkiewich A, Jamal S, Cawley C, Jones CR, Marrett LD. (2017). Cancer risk factors and screening in First Nations in Ontario. doi:10.24095/hpcdp.37.6.02.

    PMID: 28614046

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    INTRODUCTION: A lack of identifiers in health administrative databases limits our understanding of the cancer burden in First Nations. This study compares cancer risk factors and screening between First Nations in Ontario (on and off reserve) and non-Aboriginal Ontarians using two unique health surveys. METHODS: We measured age-standardized prevalence estimates using the First Nations Regional Health Survey (RHS) Phase 2, 2008/10 (for First Nations on reserve) and the Canadian Community Health Survey (CCHS), 2007-2013 (for First Nations off reserve and non-Aboriginal Ontarians). We used prevalence rate ratios (RR) and Pearson's chisquare tests for differences in proportions to compare estimates between First Nations (on and off reserve) and non-Aboriginal Ontarians. RESULTS: A higher proportion of First Nation men, women and adolescents on reserve smoked (RR = 1.97, 2.78 and 7.21 respectively) and were obese (RR = 1.73, 2.33 and 3.29 respectively) compared to their non-Aboriginal counterparts. Similar patterns were observed for First Nations off reserve. Frequent binge drinking was also more prevalent among First Nation men and women living on reserve (RR = 1.28 and 2.22, respectively) and off reserve (RR = 1.70 and 1.45, respectively) than non-Aboriginal Ontarians. First Nation men and women on reserve were about half as likely to consume fruit at least twice per day and vegetables at least twice per day compared to non-Aboriginal men and women (RR = 0.53 and 0.54, respectively). Pap test uptake was similar across all groups, while First Nation women on reserve were less likely to have had a mammogram in the last five years than non-Aboriginal women (RR = 0.85). CONCLUSION: First Nations, especially those living on reserve, have an increased risk for cancer and other chronic diseases compared to non-Aboriginal Ontarians. These results provide evidence to support policies and programs to reduce the future burden of cancer and other chronic diseases in First Nations in Ontario.


  • Cancer risk factors and screening in the off-reserve First Nations, Métis and non-Aboriginal populations of Ontario

    Citation: Withrow DR, Amartey A, Marrett LD. (2014). Cancer risk factors and screening in the off-reserve First Nations, Métis and non-Aboriginal populations of Ontario.

    PMID: 24991773

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    INTRODUCTION: This study describes the prevalence of smoking, obesity, sedentary behaviour/physical activity, fruit and vegetable consumption and alcohol use as well as the uptake of breast, cervical and colorectal cancer screening among First Nations and Métis adults in Ontario and compares these to that of the non-Aboriginal population. METHODS: We used the Canadian Community Health Survey (2007 to 2011 combined) to calculate prevalence estimates for the 3 ethnocultural populations. RESULTS: First Nations and Métis adults were significantly more likely than non-Aboriginal adults to self-report smoking and/or to be classified as obese. Alcohol use exceeding cancer prevention recommendations and inadequate fruit and vegetable consumption were more common in First Nations people than in the non-Aboriginal population. First Nations women were more likely to report having had a Fecal Occult Blood Test in the previous 2 years than non-Aboriginal women. No significant differences across the 3 ethnocultural groups were found for breast and cervical screening among women or colorectal screening among men. CONCLUSION: Without intervention, we are likely to continue to see a significant burden of smoking- and obesity-related cancers in Ontario's Aboriginal population.


  • Cancer Screening on the Hopi Reservation: A Model for Success in a Native American Community

    Citation: Brown, SJ, Lori Saboda, Kathylynn Sanderson, Priscilla Ami, Delores Harris, Robin. (2015). Cancer Screening on the Hopi Reservation: A Model for Success in a Native American Community [Article]. 40: 1165-1172.

    PMID: 26091896

    Cancer Sites(s): Breast, Cervical, Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    American Indian women have lower cancer survival rates compared to non-Hispanic White women. Increased cancer screening fostered by culturally sensitive education and community programs may help decrease this disparity. This study assesses the effectiveness of Hopi Cancer Support Services (HCSS) in maintaining high rates of breast and cervical cancer screening among Hopi women and evaluates the impact of participation in HCSS programs on colorectal cancer (CRC) screening. A population-based survey was conducted on the Hopi reservation in 2012 (n = 252 women). Frequency of breast, cervical, and colorectal cancer screenings, participation in HCSS programs and barriers to screening were evaluated. Unconditional multiple logistic regression estimated the independent effect of the HCSS program on CRC screening. Approximately 88 % of Hopi women 40+ reported ever having had a mammogram; 71 % did so within the past 2 years. Approximately 66 % of women 50+ were ever screened for colorectal cancer (FOBT and/or colonoscopy). Women who had their last mammogram through HCSS were 2.81 (95 % CI 1.12, 7.07) times more likely to have been screened for CRC. Breast and cervical cancer screening continues at a high rate among Hopi women and is substantially greater than that reported prior to the inception of HCSS. Furthermore, participation in programs offered by HCSS is strongly associated with increased colorectal cancer screening. This tribal health program (HCSS) has strongly influenced cancer screening among Hopi women and is a model of a tribally run cancer prevention program. [ABSTRACT FROM AUTHOR] Copyright of Journal of Community Health is the property of Springer Science & Business Media B.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)


  • Cancer Stage in American Indians and Alaska Natives Enrolled in Medicaid

    Citation: Adams SV, Burnett-Hartman AN, Karnopp A, Bansal A, Cohen SA, Warren-Mears V, Ramsey SD. (2016). Cancer Stage in American Indians and Alaska Natives Enrolled in Medicaid. doi:10.1016/j.amepre.2016.02.016.

    PMID: 27020318

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Diagnosis

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    INTRODUCTION: Nationally, a greater proportion of American Indians and Alaska Natives (AI/ANs) are diagnosed with advanced-stage cancers compared with non-Hispanic whites. The reasons for observed differences in stage at diagnosis between AI/ANs and non-Hispanic whites remain unclear. METHODS: Medicaid, Indian Health Service Care Systems, and state cancer registry data for California, Oregon, and Washington (2001-2008, analyzed in 2014-2015) were linked to identify AI/ANs and non-Hispanic whites diagnosed with invasive breast, cervical, colorectal, lung, or prostate cancer. Logistic regression was used to estimate ORs and 95% CIs for distant disease versus local or regional disease, in AI/ANs compared with non-Hispanic white case patients. RESULTS: A similar proportion of AI/AN (31.2%) and non-Hispanic white (35.5%) patients were diagnosed with distant-stage cancer in this population (AOR=1.03, 95% CI=0.88, 1.20). No significant differences in stage at diagnosis were found for any individual cancer site. Among AI/ANs, Indian Health Service Care Systems eligibility was not associated with stage at diagnosis. CONCLUSIONS: In contrast to the general population of the U.S., among Medicaid enrollees, AI/AN race is not associated with later stage at diagnosis. Cancer survival disparities associated with AI/AN race that have been observed in the broader population may be driven by factors associated with income and health insurance that are also associated with race, as income and insurance status are more homogenous within the Medicaid population than within the broader population. Copyright © 2016 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.


  • Cancer survival among Alaska Native people

    Citation: Nash SH, Meisner ALW, Zimpelman GL, Barry M, Wiggins CL. (2018). Cancer survival among Alaska Native people. doi:10.1002/cncr.31350.

    PMID: 29579335

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Recent cancer survival trends among American Indian and Alaska Native (AN) people are not well understood; survival has not been reported among AN people since 2001. METHODS: This study examined cause-specific survival among AN cancer patients for lung, colorectal, female breast, prostate, and kidney cancers. It evaluated whether survival differed between cancers diagnosed in 1992-2002 (the earlier period) and cancers diagnosed in 2003-2013 (the later period) and by the age at diagnosis (<65 vs ?65 years), stage at diagnosis (local or regional/distant/unknown), and sex. Kaplan-Meier and Cox proportional hazards models were used to estimate univariate and multivariate-adjusted cause-specific survival for each cancer. RESULTS: An improvement was observed in 5-year survival over time from lung cancer (hazard ratio [HR] for the later period vs the earlier period, 0.83; 95% confidence interval [CI], 0.72-0.97), and a marginally nonsignificant improvement was observed for colorectal cancer (HR, 0.81; 95% CI, 0.66-1.01). Site-specific differences in survival were observed by age and stage at diagnosis. CONCLUSIONS: This study presents the first data on cancer survival among AN people in almost 2 decades. During this time, AN people have experienced improvements in survival from lung and colorectal cancers. The reasons for these improvements may include increased access to care (including screening) as well as improvements in treatment. Improving cancer survival should be a priority for reducing the burden of cancer among AN people and eliminating cancer disparities. Cancer 2018;124:2570-7. © 2018 American Cancer Society. © 2018 American Cancer Society.


  • Cancer survival among First Nations people of Ontario, Canada (1968-2007)

    Citation: Nishri ED, Sheppard AJ, Withrow DR, Marrett LD. (2015). Cancer survival among First Nations people of Ontario, Canada (1968-2007). doi:10.1002/ijc.29024.

    PMID: 24923728

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    We aimed to compare cancer survival in Ontario First Nations people to that in other Ontarians for five major cancer types: colorectal, lung, cervix, breast and prostate. A list of registered or Status Indians in Ontario was used to create a cohort of over 140,000 Ontario First Nations people. Cancers diagnosed in cohort members between 1968 and 2001 were identified from the Ontario Cancer Registry, with follow-up for death until December 31st, 2007. Flexible parametric modeling of the hazard function was used to compare the survival experience of the cohort to that of other Ontarians. We considered changes in survival from the first half of the time period (1968-1991) to the second half (1992-2001). For other Ontarians, survival had improved over time for every cancer site. For the First Nations cohort, survival improved only for breast and prostate cancers; it either declined or remained unchanged for the other cancers. For cancers diagnosed in 1992 or later, all-cause and cause-specific survival was significantly poorer for First Nations people diagnosed with breast, prostate, cervical, colorectal (male and female) and male lung cancers as compared to their non-First Nations peers. For female lung cancer, First Nations women appeared to have poorer survival; however, the result was not statistically significant. Ontario's First Nations population experiences poorer cancer survival when compared to other Ontarians and strategies to reduce these inequalities must be developed and implemented.


  • Cancer Survival Disparities Between First Nation and Non-Aboriginal Adults in Canada: Follow-up of the 1991 Census Mortality Cohort

    Citation: Withrow DR, Pole JD, Nishri ED, Tjepkema M, Marrett LD. (2017). Cancer Survival Disparities Between First Nation and Non-Aboriginal Adults in Canada: Follow-up of the 1991 Census Mortality Cohort. doi:10.1158/1055-9965.EPI-16-0706.

    PMID: 27965294

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: The burden of cancer among indigenous people in Canada has been understudied due to a lack of ethnic identifiers in cancer registries. We compared cancer survival among First Nations to that among non-Aboriginal adults in Canada in the first national study of its kind to date. METHODS: A population-based cohort of approximately 2 million respondents to the 1991 Canadian Long Form Census was followed for cancer diagnoses and deaths using probabilistic linkage to cancer and death registries until 2009. Excess mortality rate ratios (EMRR) and 5-year age-standardized relative survival rates were calculated for 15 cancers using age, sex, ethnicity, and calendar-time-specific life tables derived from the cohort at large. RESULTS: First Nations diagnosed with cancers of the colon and rectum, lung and bronchus, breast, prostate, oral cavity and pharynx, cervix, ovary, or with non-Hodgkin lymphoma and leukemia all had significantly poorer 5-year survival than their non-Aboriginal peers. For colorectal cancer, a significant disparity was only present between 2001 and 2009 (EMRR: 1.52; 95% CI, 1.28-1.80). For prostate cancer, a significant disparity was only present between 1992 and 2000 (EMRR: 2.76; 95% CI, 1.81-4.21). Adjusting for income and rurality had little impact on the EMRRs. CONCLUSIONS: Compared with non-Aboriginals, First Nations people had poorer survival for 14 of 15 of the most common cancers, and disparities could not be explained by income and rurality. IMPACT: The results of this study can serve as a benchmark for monitoring progress toward narrowing the gap in survival. Cancer Epidemiol Biomarkers Prev; 26(1); 145-51. ©2016 AACR. ©2016 American Association for Cancer Research.


  • Cancer Treatment Delays in American Indians and Alaska Natives Enrolled in Medicare

    Citation: Adams SV, Bansal A, Burnett-Hartman AN, Cohen SA, Karnopp A, Warren-Mears V, Ramsey SD. (2017). Cancer Treatment Delays in American Indians and Alaska Natives Enrolled in Medicare. doi:10.1353/hpu.2017.0027.

    PMID: 28239006

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    To assess whether timing of initial post-diagnosis cancer care differs between American Indian and Alaska Native (AI/AN) and non-Hispanic White (NHW) patients, we accessed SEER-Medicare data for breast, colorectal, lung, and prostate cancers (2001-2007). Medicare claims data were examined for initiation of cancer-directed treatment. Overall, AI/ANs experienced longer median times to starting treatment than NHWs (45 and 39 days, p < .001) and lower rates of treatment initiation (HR[95%CI]: 0.86[0.79-0.93]). Differences were largest for prostate (HR: 0.80[0.71-0.89]) and smallest for breast cancer (HR: 0.96[0.83-1.11]). American Indians / Alaska Natives also had elevated odds of greater than 10 weeks between diagnosis and treatment compared with NHWs (OR[95% CI]: 1.37[1.16-1.63]), especially for prostate cancer (OR: 1.41[1.14-1.76]). Adjustment for comorbidity and socio-demographic factors attenuated associations except for prostate cancer. In this insured population, we observed evidence that AI/ANs start cancer therapy later than NHWs. The modest magnitude of delays suggests that they are unlikely to be a determinant of survival disparities.


  • Cancer-Directed Therapy and Hospice Care for Metastatic Cancer in American Indians and Alaska Natives

    Citation: Shiovitz S, Bansal A, Burnett-Hartman AN, Karnopp A, Adams SV, Warren-Mears V, Ramsey SD. (2015). Cancer-Directed Therapy and Hospice Care for Metastatic Cancer in American Indians and Alaska Natives. doi:10.1158/1055-9965.EPI-15-0251.

    PMID: 25987547

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Little has been reported regarding patterns of oncologic care in American Indian/Alaska Natives (AI/AN). Observed worse survival has been attributed to later-stage presentation. We aimed to evaluate racial differences in cancer-directed therapy and hospice care utilization in AI/ANs and non-Hispanic whites (NHW) with metastatic cancer. METHODS: The linked Surveillance, Epidemiology, and End Results (SEER)-Medicare claims database was accessed for AI/AN and NHW metastatic-cancer cases diagnosed between 2001 and 2007. Utilization of cancer-directed therapy (surgery, radiation, and/or chemotherapy) and/or hospice services was compared between AI/ANs and NHWs. Minimally adjusted (age, sex, diagnosis year) and fully-adjusted (also Klabunde comorbidity score, sociodemographic factors) regression models were used to estimate odds (OR) and hazard ratios (HR) for receipt of care. RESULTS: AI/ANs were younger, more likely to reside in the West, be unmarried, have lower income, and live in a nonurban setting than NHWs. Fewer AI/ANs received any cancer-directed therapy (57% vs. 61% NHWs) within 3 months of diagnosis; sociodemographic factors accounted for much of this difference [fully-adjusted HR, 0.94; 95% confidence interval (CI), 0.83-1.08]. We noted differences in hospice utilization between AI/ANs (52%) and NHWs (61%). A significant difference in hospice utilization remained after adjustment for sociodemographics (OR, 0.78; 95% CI, 0.61-0.99). CONCLUSION: Observed absolute differences in care for AI/ANs and NHWs with metastatic cancer were largely accounted for by adjusting for socioeconomics, comorbidities, and demographic factors. A significant association between race and hospice utilization was noted. IMPACT: Efforts to improve metastatic-cancer care should focus on socioeconomic barriers and investigate the observed disparity in receipt of hospice services. ©2015 American Association for Cancer Research.


  • Carcinoma of the cervix in Southwestern American indians: results of a cytologic detection program

    Citation: Jordan, SWK, C. R. (1981). Carcinoma of the cervix in Southwestern American indians: results of a cytologic detection program. 47: 2523-2532.

    PMID: 7272903

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Unknown

    Intervention Type(s): Screening Program

    Age-specific detection rates for newly diagnosed in situ and invasive uterine cervical carcinoma were determined in a nine-year cytologic cancer detection program during which 34,700 Southwestern American Indian women and 46,200 medically indigent non-Indian women were screening for cervical cancer. For patients less than 35 years of age, cervical carcino a was found more frequently among Indians and Spanish-American Caucasians than among other Caucasian women. At ages 60 and older, the Indian cervical cancer rate was much higher than that of non-Indians. The detection rate for invasive cervical carcinoma among Indian patients is inversely related to the proportion screened at 30 years of age or older. Although at least 60% of Indian women 20 years old, and older, in the geographic area served by the detection program were screened for cervical cancer during the nine-year period, only 27% of those 50 years or older were screened. The age-related variation in screening percentage, in conjunction with the disproportionately large numbers of younger low-risk women, serves to explain the finding of significant invasive cervical carcinoma in an extensively screened population.;


  • Caregiving among American Indians and Alaska Natives with cancer

    Citation: Sawchuk CN, Van Dyke E, Omidpanah A, Russo JE, Tsosie U, Buchwald D. (2015). Caregiving among American Indians and Alaska Natives with cancer. doi:10.1007/s00520-014-2512-9.

    PMID: 25416095

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    PURPOSE: Caregivers are an important source of support for oncology patients during cancer diagnosis and treatment, often helping patients manage barriers to care. Our study had three goals: to describe the characteristics of caregivers for American Indian and Alaska Native (AI/AN) oncology patients, to assess the similarities and differences between the perceptions of caregivers and patients regarding barriers to cancer care, and to compare AI/AN caregivers to non-AI/AN caregivers on perceived barriers to cancer care. METHODS: We conducted a structured interview that assessed perceived barriers to cancer care with a paired sample of 98 adult caregivers and 98 AI/AN oncology patients and to assess the degree of agreement between these two groups. We also investigated whether AI/AN and non-AI/AN caregivers had differing perceptions of barriers to cancer care. RESULTS: Caregivers reported that their role was very meaningful and not highly stressful. Caregivers and patients agreed 70 % of the time on specific barriers to cancer care. Both groups overwhelmingly reported financial and family or work issues as major barriers to care, whereas trust in providers was the least frequently endorsed barrier. A comparison of AI/AN and non-AI/AN caregivers revealed that AI/AN caregivers identified confidentiality among clinical staff as a significant barrier, whereas non-AI/AN caregivers perceived financial barriers as more significant. CONCLUSIONS: Finances, family, and work are perceived as the largest barriers to the receipt of cancer care for AI/AN oncology patients. Both patients and caregivers trusted health-care providers. Assessing barriers to care early in the assessment process may result in better engagement with cancer treatment by patients and their caregivers.


  • Caregiving on the Hopi Reservation: Findings from the 2012 Hopi Survey of Cancer and Chronic Disease

    Citation: Cordova FM, B Harris R, Teufel-Shone NI, L Nisson P, Joshweseoma L, R Brown S, Sanderson PR, Ami D, Saboda K, M Mastergeorge A, B Gerald L. (2016). Caregiving on the Hopi Reservation: Findings from the 2012 Hopi Survey of Cancer and Chronic Disease. doi:10.1007/s10900-016-0199-1.

    PMID: 27165130

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    A family caregiver provides unpaid assistance to a family member/friend with a chronic disease, illness or disability. The caregiving process can affect a caregiver's quality of life by reducing time for themselves, for other family members and for work. The 2000 Behavioral Risk Factor Surveillance Survey estimates that 16 % of adult American Indians (AIs) are caregivers. A 2012 survey collected knowledge and personal experience data from a random sample of Hopi men and women (248 men and 252 women). Self-identified caregivers answered questions on time spent caregiving, caregiver difficulties and services requested. Approximately 20 % of the 500 Hopi participants self-identified as caregivers (N = 98), with 56 % female. Caregivers in contrast to non-caregivers had a lower percentage of ever having a mammogram (86, 89 %), a higher percentage of ever having had a Pap smear test (89.1, 85.6 %), a prostate specific antigen test (35, 30.6 %) and ever having had a colonoscopy (51.2, 44 %). Almost 21 % of caregivers reported difficulty with stress and 49 % reported it as their greatest caregiver difficulty. More males (28.6 %) identified financial burden as the greatest difficulty than females (p = 0.01). Training on patient care was the service that caregivers would like to receive most (18.2 %). The percentage of Hopi's providing caregiving was similar to national averages, although among men, was somewhat higher than national data (44 vs. 34 %). Stress was identified as a difficulty, similar to national studies.


  • Causes and Disparities in Death Rates Among Urban American Indian and Alaska Native Populations, 1999-2009

    Citation: Jacobs-Wingo JL, Espey DK, Groom AV, Phillips LE, Haverkamp DS, Stanley SL. (2016). Causes and Disparities in Death Rates Among Urban American Indian and Alaska Native Populations, 1999-2009. doi:10.2105/AJPH.2015.303033.

    PMID: 26890168

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: To characterize the leading causes of death for the urban American Indian/Alaska Native (AI/AN) population and compare with urban White and rural AI/AN populations. METHODS: We linked Indian Health Service patient registration records with the National Death Index to reduce racial misclassification in death certificate data. We calculated age-adjusted urban AI/AN death rates for the period 1999-2009 and compared those with corresponding urban White and rural AI/AN death rates. RESULTS: The top-5 leading causes of death among urban AI/AN persons were heart disease, cancer, unintentional injury, diabetes, and chronic liver disease and cirrhosis. Compared with urban White persons, urban AI/AN persons experienced significantly higher death rates for all top-5 leading causes. The largest disparities were for diabetes and chronic liver disease and cirrhosis. In general, urban and rural AI/AN persons had the same leading causes of death, although urban AI/AN persons had lower death rates for most conditions. CONCLUSIONS: Urban AI/AN persons experience significant disparities in death rates compared with their White counterparts. Public health and clinical interventions should target urban AI/AN persons to address behaviors and conditions contributing to health disparities.


  • Cervical cancer incidence and mortality among American Indian and Alaska Native women, 1999-2009

    Citation: Watson M, Benard V, Thomas C, Brayboy A, Paisano R, Becker T. (2014). Cervical cancer incidence and mortality among American Indian and Alaska Native women, 1999-2009. doi:10.2105/AJPH.2013.301681.

    PMID: 24754650

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We analyzed cervical cancer incidence and mortality data in American Indian and Alaska Native (AI/AN) women compared with women of other races. METHODS: We improved identification of AI/AN race, cervical cancer incidence, and mortality data using Indian Health Service (IHS) patient records; our analyses focused on residents of IHS Contract Health Service Delivery Area (CHSDA) counties. Age-adjusted incidence and death rates were calculated for AI/AN and White women from 1999 to 2009. RESULTS: AI/AN women in CHSDA counties had a death rate from cervical cancer of 4.2, which was nearly twice the rate in White women (2.0; rate ratio [RR]?= 2.11). AI/AN women also had higher incidence rates of cervical cancer compared with White women (11.0 vs 7.1; RR = 1.55) and were more often diagnosed with later-stage disease (RR = 1.84 for regional stage and RR = 1.74 for distant stage). Death rates decreased for AI/AN women from 1990 to 1993 (-25.8%/year) and remained stable thereafter. CONCLUSIONS: Although rates decreased over time, AI/AN women had disproportionately higher cervical cancer incidence and mortality. The persistently higher rates among AI/AN women compared with White women require continued improvements in identifying and treating cervical cancer and precancerous lesions.


  • Cervical cancer screening - Knowledge, attitudes, and behavior of American Indian women

    Citation: Hodge, FSS, H. A. Gurgin, V. Fredericks, L. (1998). Cervical cancer screening - Knowledge, attitudes, and behavior of American Indian women. Cancer. 83: 1799-1804.

    PMID:

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Health Education and Promotion

    Cervical cancer is a significant problem among American Indian women. Studies report very high mortality and poor 5-year survival rates compared with other ethnic groups. This paper reports on the impact of a culturally framed cervical cancer educational project on knowledge, attitudes, and behaviors toward cervical cancer screening among American Indian women in California. Eight Indian clinic centers, four urban and four rural, were assigned randomly to intervention and control sites (n = 414). A culturally sensitive educational approach was used as a vehicle to provide cancer education to improve adherence to cancer screening recommendations. Pre- and posttest questionnaires were administered, and the data were analyzed. Clinic charts were abstracted. Study results indicated significant statistical differences in postintervention knowledge levels between women from the intervention and control centers. The analysis of changes in attitude statements resulted in only modest changes. Behavioral changes require additional analysis, because the self-administered questionnaire results conflict with the participant's chart review. This study has shown the effectiveness of a culturally appropriate approach and methodology for teaching about recommended preventive health techniques for cancer control. Cancer 1998;83:1799-804. (C) 1998 American Cancer Society.


  • Characteristics of American Indian Female Caregivers on a Southwest American Indian Reservation

    Citation: Cordova-Marks FM, Harris R, Teufel-Shone NI, Norton B, Mastergeorge AM, Gerald L. (2019). Characteristics of American Indian Female Caregivers on a Southwest American Indian Reservation. doi:10.1007/s10900-018-0552-7.

    PMID: 30056488

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    American Indian (AI) caregivers have been excluded from national survey efforts. Drawing from a 2012 survey administered on the Hopi Reservation in northern Arizona, 20% of adults are caregivers. More information is needed to guide program development tailored to Hopi needs. In a University-Community collaboration, a 58 question survey was administered to self-identified caregivers of a family member about amount and type of care provided, difficulties, caregiver health, and desired support services. Characteristics of caregivers and their experiences were described. Forty-four (44) female Hopi caregivers were interviewed from June-October 2017, mean age of 59 years (±?12.6) with mean 5.5 year (±?4.4) history of providing care. Over 84% provided care to either a parent or grandparent. Most caregivers provided transportation (93.2%), housework (93.2%), and medical related care (72.7%). Caregivers stated they had difficulties with not having enough time for family and or friends (88.6%), financial burdens (75.0%), and not having enough time for themselves (61.4%). The most frequently identified difficulty was stress (45.5%). Caregivers would like additional services, with 76.7% asking for training. Over 77% would not consider placing their relative in an assisted living facility. Compared to national data, Hopi female caregivers are older, provide more care hours/week, more caregiving duties, and for a longer number of years. Stress is the most reported difficulty, although lower than national levels. As caregivers are resistant to placing the recipient in assisted living, educational efforts should focus on training caregivers to assist the care recipient and decreasing caregiver stress.


  • Choctaw Nation Youth Sun Exposure Survey

    Citation: Rhoades DA, Hawkins M, Norton B, Branam D, Cannady TK, Dvorak J, Ding K, Olson AL, Doescher MP. (2017). Choctaw Nation Youth Sun Exposure Survey. doi:10.1016/j.pmedr.2017.04.012.

    PMID: 28540161

    Cancer Sites(s): Skin

    Cancer Continuum(s): Prevention

    Intervention Site(s): Schools

    Intervention Type(s): Community Based Participatory Research (CBPR)

    The incidence of skin cancer is rising among American Indians (AI) but the prevalence of harmful ultraviolet light (UVL) exposures among AI youth is unknown. In 2013, UVL exposures, protective behaviors, and attitudes toward tanning were assessed among 129 AI and Non-Hispanic (NHW) students in grades 8-12 in Southeastern Oklahoma. Sunburn was reported by more than half the AI students and most of the NHW students. One-third of AI students reported never using sunscreen, compared to less than one-fifth of NHW students, but racial differences were mitigated by propensity to burn. Less than 10% of students never covered their shoulders when outside. Girls, regardless of race, wore hats much less often than boys. Regardless of race or sex, more than one-fourth of students never stayed in the shade, and more than one-tenth never wore sunglasses. The prevalence of outdoor tanning did not differ by race, but more than three-fourths of girls engaged in this activity compared to less than half the boys. Indoor tanning was reported by 45% of the girls, compared to 20% of girls nationwide, with no difference by race. Nearly 10% of boys tanned indoors. Among girls, 18% reported more than ten indoor tanning sessions. Over one-quarter of participants agreed that tanning makes people look more attractive, with no significant difference by race or sex. Investigations of UVL exposures should include AI youth, who have not been represented in previous studies but whose harmful UVL exposures, including indoor tanning, may place them at risk of skin cancer.


  • Choice of relative or cause-specific approach to cancer survival analysis impacts estimates differentially by cancer type, population, and application: evidence from a Canadian population-based cohort study

    Citation: Withrow DR, Pole JD, Nishri ED, Tjepkema M, Marrett LD. (2017). Choice of relative or cause-specific approach to cancer survival analysis impacts estimates differentially by cancer type, population, and application: evidence from a Canadian population-based cohort study. doi:10.1186/s12963-017-0142-4.

    PMID: 28673318

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Cause-specific (CS) and net survival in a relative survival framework (RS) are two of the most common methods for estimating cancer survival. In this paper, we assess the differences in results produced by two permutations of cause-specific and relative survival applied to estimating cancer survival and disparities in cancer survival, using data from First Nations and non-Aboriginal populations in Canada. METHODS: Subjects were members of the 1991 Canadian Census Mortality Cohort, a population-based cohort of adult respondents to the 1991 Long Form Census who have been followed up for incident cancers and death through linkage to administrative databases. We compared four methods: relative survival analyses with ethnicity-specific life tables (RS-ELT); relative survival with general population life tables (RS-GLT); cause-specific survival with a broad definition of cancer death (CS-Broad); and cause-specific survival with a narrow definition of cause of death (CS-Narrow) and applied these to the nine most common cancers among First Nations. RESULTS: Apart from breast and prostate cancers, RS-ELT, RS-GLT, and CS-Broad tended to produce similar estimates of age-standardized five-year survival, whereas CS-Narrow yielded higher estimates of survival. CS-Narrow estimates were particularly unlike those based on the other methods for cancers of the digestive and respiratory tracts. Estimates of disparities in survival were generally comparable across the four methods except for breast and prostate cancers. CONCLUSIONS: Cancer surveillance efforts in sub-populations defined by race, ethnicity, geography, socioeconomic status, or similar factors are necessary for identifying disparities and monitoring progress toward reducing them. In the absence of routine monitoring of cancer survival and cancer survival disparities in these populations, estimates generated by different methods will inevitably be compared over time and across populations. In this study, we demonstrate that caution should be exercised in making these comparisons, particularly in interpreting cause-specific survival rates with an unknown or narrow definition of cancer death and in estimates of breast and prostate cancer survival and/or disparities in survival generated by different methods.


  • Circle Of Life Cancer Education: Giving Voice to American Indian and Alaska Native Communities

    Citation: Vogel, OC-A, Rebecca Eschiti, Valerie Samos, Markos Wiener, Diane Ohlander, Kerstin Royals, Deborah. (2013). Circle Of Life Cancer Education: Giving Voice to American Indian and Alaska Native Communities. 28: 565-572.

    PMID: 23842983

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    The Circle Of Life (COL) was first developed in 1991 as a breast health program through a partnership between the American Cancer Society and a committee of lay and professional volunteers in Oklahoma, with representation from Oklahoma American Indian tribal communities. In 2008, The Society was awarded funding from the Centers for Disease Control and Prevention to expand and enhance COL. Since then, The Society has engaged a variety of tribal health and education leaders and Society staff to comprise a COL advisory workgroup. The workgroup's mission was to make recommendations and provide guidance in the revision of COL. Four cultural values emerged from the engagement of the workgroup: (1) the value of visual communication, (2) the value of interconnected generations, (3) the value of storytelling, and (4) the value of experiential learning. These four concepts greatly shaped the revision of the COL educational tools and resources.


  • Circle of Sisters: Raising Awareness of Native American Women to Breast Cancer

    Citation: Chilton, JAD, Cheryl Lofton, Melissa Hernandez, Mike Allen, Beth W. Hajek, Richard A. Gor, Beverly. (2013). Circle of Sisters: Raising Awareness of Native American Women to Breast Cancer. 24: 1167-1179.

    PMID: 23974389

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    The Circle of Sisters is a breast cancer education initiative that incorporates free mammography for American Indian women. In two separate but similar initiative-sponsored one-day events, 37 American Indian women underwent screening mammography and experienced a full day of culturally tailored educational activities. Women observed a cooking demonstration, participated in moderate exercise activity, strung beads to learn about the dimensions of breast tumors, and listened to an American Indian breast cancer survivor recount her story of diagnosis and treatment. Significant shifts in opinion included an increase in the understanding that a woman's chances of being diagnosed with breast cancer increase with age (p=.015) and with never bearing children (p <.001) and that breast cancer can be detected early (p=.043). The percentage of those expressing an intention to get a mammogram every year grew from 81.1% to 94.6%.


  • Clinical and Molecular Characteristics and Burden of Kidney Cancer Among Hispanics and Native Americans: Steps Toward Precision Medicine

    Citation: Batai K, Bergersen A, Price E, Hynes K, Ellis NA, Lee BR. (2018). Clinical and Molecular Characteristics and Burden of Kidney Cancer Among Hispanics and Native Americans: Steps Toward Precision Medicine. doi:10.1016/j.clgc.2018.01.006.

    PMID: 29449090

    Cancer Sites(s): Kidney

    Cancer Continuum(s): Treatment

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Cancer disparities in Native Americans (NAs) and Hispanic Americans (HAs) vary significantly in terms of cancer incidence and mortality rates across geographic regions. This review reports that kidney and renal pelvis cancers are unevenly affecting HAs and NAs compared to European Americans of non-Hispanic origin, and that currently there is significant need for improved data and reporting to be able to advance toward genomic-based precision medicine for the assessment of such cancers in these medically underserved populations. More specifically, in states along the US-Mexico border, HAs and NAs have higher kidney cancer incidence rates as well as a higher prevalence of kidney cancer risk factors, including obesity and chronic kidney disease. They are also more likely to receive suboptimal care compared to European Americans. Furthermore, they are underrepresented in epidemiologic, clinical, and molecular genomic studies of kidney cancer. Therefore, we maintain that progress in precision medicine for kidney cancer care requires an understanding of various factors among HAs and NAs, including the real kidney cancer burden, variations in clinical care, issues related to access to care, and specific clinical and molecular characteristics.


  • Colonial legacy and the experience of First Nations women in cervical cancer screening: a Canadian multi-community study

    Citation: Wakewich P, Wood B, Davey C, Laframboise A, Zehbe I. (2016). Colonial legacy and the experience of First Nations women in cervical cancer screening: a Canadian multi-community study. doi:10.1080/09581596.2015.1067671.

    PMID: 27867262

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection, Prevention

    Intervention Site(s): Community, Health-Care System

    Intervention Type(s): Community Based Participatory Research (CBPR), Health Education and Promotion, Screening Program, Training for Health Professionals

    Regular Papanicolaou (Pap) screening has dramatically reduced cervical cancer incidence in Canada since the 1950s. However, Indigenous women's rates of cervical cancer remain disproportionately high, a factor which is not acknowledged in national media or in educational materials reporting Canada's new cervical cancer screening guidelines. Here, we present findings from a cervical cancer screening initiative in Northwestern Ontario. Based on participatory action research, we worked with 10 First Nations communities in the Robinson Superior Treaty area to increase awareness of cervical cancer risk, develop culturally sensitive tools for screening and education and test the efficacy of human papillomavirus (HPV) self-sampling as an alternative to Pap cytology. We conducted 16 interviews with health care professionals and 9 focus groups with 69 women from the communities. A central theme for both health care providers (HCPs) and community members was the colonial legacy and its influence on women's experiences of cervical cancer screening. This was evidenced by a strong sense of body shyness, including shame related to sexuality and sexually transmitted infections, concerns about confidentiality in clinical encounters and distrust or caution around HCPs. Reaffirming women's traditional caregiving and educational roles, enhancing mother and daughter communication, improving cultural sensitivity in health care and education and adoption of HPV self-sampling to increase women's privacy and control of the cervical cancer screening experience were endorsed. We argue that education and screening initiatives must reflect the cultural preferences of Indigenous women, empowering them to take control of their experiences of health and body in cervical cancer screening.


  • Colonoscopy Screening among Native Hawaiians at Queen's Medical Center between August 2011 and January 2013

    Citation: Kaalekahi JM, Gandhi KR, Chen JJ, Kuwada SK. (2016). Colonoscopy Screening among Native Hawaiians at Queen's Medical Center between August 2011 and January 2013.

    PMID: 26870602

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    A retrospective chart review in the Endoscopy Department at Queen's Medical Center identified 358 Native Hawaiian patients who had completed a colonoscopy screening procedure between August 2011 and January 2013, through either the Direct Referral Colonoscopy program or its Traditional Referral program. The differences in the characteristics of Native Hawaiian patients were summarized and compared between the two referral programs to identify potential barriers for future interventions and increase colorectal cancer screening. The combined colonoscopy screening rate among Native Hawaiians was 13%. Younger patients and those with private insurance were found to be undergoing colonoscopy screening through the Direct Referral program. The findings of this study underscore the need to reduce disparities in colonoscopy screening among Native Hawaiians.


  • Colorectal cancer incidence in the Aboriginal population of Ontario, 1998 to 2009

    Citation: Young SW, Nishri ED, Candido E, Marrett LD. (2015). Colorectal cancer incidence in the Aboriginal population of Ontario, 1998 to 2009.

    PMID: 25875157

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Studies suggest that colorectal cancer incidence increased disproportionately among the Aboriginal population of Ontario relative to the general population. Using an ecological approach, this study examined colorectal cancer incidence for the 1998-to-2009 period among Aboriginal people living in Ontario. DATA AND METHODS: Based on their postal code when they were diagnosed, cases of colorectal cancer identified from the Ontario Cancer Registry were assigned to census geographic areas with high (33% or more) or low percentages of Aboriginal identity residents, using the Postal Code Conversion File Plus (PCCF+). To account for potential misclassification by the PCCF+, Indian reserves for which assignment through postal codes is likely to be accurate were identified. Age-standardized incidence rates and rate ratios were calculated to compare colorectal cancer incidence in high-Aboriginal identity areas or on Indian reserves with incidence in low-Aboriginal identity areas. RESULTS: Colorectal cancer incidence was significantly higher for residents of high- versus low-Aboriginal identity areas in Ontario (rate ratio for men = 1.44, 95% CI = 1.26-1.63; rate ratio for women = 1.42, 95% CI = 1.23-1.63), a disparity that persisted by age group. When the Aboriginal sample was limited to residents of Indian reserves, the difference was statistically significant only for men and for people aged 50 to 74. INTERPRETATION: The incidence of colorectal cancer differs across areas of Ontario with high and low percentages of Aboriginal identity residents.


  • Colorectal cancer screening among American Indians in a Pacific Northwest tribe: Cowlitz Tribal BRFSS Project, 2009-2010

    Citation: Maly AG, Steel TL, Fu R, Lieberman DA, Becker TM. (2014). Colorectal cancer screening among American Indians in a Pacific Northwest tribe: Cowlitz Tribal BRFSS Project, 2009-2010. doi:10.1177/003335491412900310.

    PMID: 24791026

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVES: Colorectal cancer (CRC) screening is low among American Indians (AIs). We describe the demographics, health status, prevalence of modifiable CRC risk factors, and use of CRC screening modalities in a Pacific Northwest AI tribe. METHODS: We conducted a survey among Cowlitz tribal members using a Behavioral Risk Factor Surveillance System (BRFSS) questionnaire. We analyzed demographic, health status, behavioral risk factor, and CRC screening variables. Using the Washington State 2010 BRFSS, we compared tribal members with non-Hispanic white (NHW) people. We used logistic regression to examine factors associated with CRC screening for tribal members. RESULTS: A greater proportion of tribal members than NHW people reported living below the federal poverty level (12% vs. 7%, p=0.013). A greater proportion of tribal members than NHW people aged?50 years had poor self-reported health (27% vs. 16%, p=0.006) and were without health insurance (12% vs. 6%, p=0.004). A greater proportion of tribal members than NHW people had a fecal occult blood test within the past year (20% vs. 13%, p=0.006). Being 60-69 years of age (odds ratio [OR]=2.6, 95% confidence interval [CI] 1.4, 4.9), ?70 years of age (OR=2.2, 95% CI 1.1, 4.5), and having a personal health-care provider (OR=3.7, 95% CI 1.4, 9.6) were associated with increased screening adherence in tribal members. CONCLUSION: Data from the Cowlitz Tribal BRFSS demonstrate that members are receiving CRC screening in the same proportions as NHW people despite lower sociodemographic and health status indicators among members. Unique characteristics of the tribe likely contribute to this finding.


  • Colorectal cancer screening in first nations people living in Manitoba

    Citation: Decker KM, Demers AA, Kliewer EV, Musto G, Shu E, Biswanger N, Elias B, Griffith J, Turner D. (2015). Colorectal cancer screening in first nations people living in Manitoba. doi:10.1158/1055-9965.EPI-14-1008.

    PMID: 25336562

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Because the burden of colorectal cancer (CRC) seems to be increasing in First Nations, it is important to better understand CRC screening utilization. The objective of this study was to describe CRC screening among First Nations living in Manitoba. METHODS: The Federal Indian Register was linked to two provincial databases. A negative binomial model was used to compare the probability of First Nations having a fecal occult blood test (FOBT), colonoscopy, or flexible sigmoidoscopy (FS) with all other Manitobans. RESULTS: First Nations who lived in Winnipeg were significantly less likely to have had a FOBT in the previous 2 years than all other Manitobans who lived in Winnipeg [rate ratio (RR) = 0.40; 95% confidence intervals (CI), 0.37-0.44]. There was no difference in the likelihood of having a colonoscopy or FS for First Nations individuals who resided in northern Manitoba compared with all other Manitobans (RR, 1.04; 95% CI, 0.91-1.19). However, First Nations who lived in the rural south or urban areas were less likely than all other Manitobans to have had a colonoscopy or FS (RR, 0.81, 95% CI, 0.75-0.87, rural south; RR, 0.86, 95% CI, 0.81-0.92, urban). CONCLUSIONS: First Nations living in Winnipeg were significantly less likely to be screened for CRC using the FOBT. Colonoscopy and FS use depended on area of residence. IMPACT: First Nations experience barriers that impede the use of CRC screening. Further research is needed to understand these barriers to extend the benefit of CRC screening to this population. Cancer Epidemiol Biomarkers Prev; 24(1); 241-8. ©2014 AACR. ©2014 American Association for Cancer Research.


  • Colorectal cancer screening in the American Indian/Alaska Native population: progress and at least one new challenge

    Citation: Lynch PM. (2014). Colorectal cancer screening in the American Indian/Alaska Native population: progress and at least one new challenge. doi:10.1002/cncr.28848.

    PMID: 25123576

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): N/A

    Intervention Type(s): N/A


  • COLORECTAL CANCER SCREENING PRACTICES AMONG THREE AMERICAN INDIAN COMMUNITIES IN MINNESOTA

    Citation: Filippi MK, Perdue DG, Hester C, Cully A, Cully L, Greiner KA, Daley CM. (2016). COLORECTAL CANCER SCREENING PRACTICES AMONG THREE AMERICAN INDIAN COMMUNITIES IN MINNESOTA.

    PMID: 27188017

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection, Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Colorectal cancer (CRC) is a leading cause of cancer morbidity and mortality. Effective prevention and early detection may be achieved through screening, but screening rates are low, especially in American Indian (AI) populations. We wanted to understand perceptions of CRC screening among AI located in the Great Lakes region. Focus groups were recorded and transcribed verbatim (N = 45). Data were analyzed using qualitative text analysis. Themes that deterred CRC screening were low CRC knowledge, fear of the procedure and results, cost and transportation issues, and a lack of quality and competent care. Suggestions for improvement included outreach efforts and culturally-tailored teaching materials.


  • Colorectal cancer screening: the role of perceived susceptibility, risk and cultural illness beliefs among American Indians

    Citation: Hodge F, Maliski S, Itty T, Martinez F. (2014). Colorectal cancer screening: the role of perceived susceptibility, risk and cultural illness beliefs among American Indians.

    PMID: 25011207

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    PURPOSE: Colorectal cancer (CRC) disproportionately affects American Indians and is a leading cause of mortality despite being treatable when detected early. METHODS: An explanatory model to guide a CRC screening education media campaign was developed from survey and focus group data collected at three American Indian communities (n = 29) in California. Project data was analyzed using Chi Square, Fisher's Exact Test and thematic analysis. RESULTS: Low perceived susceptibility due to low harm value, cultural illness beliefs, and competing priorities likely lead to poor CRC screening behavior, placing American Indians at high risk for CRC mortality.


  • Communities advancing the studies of Tribal nations across their lifespan: Design, methods, and baseline of the CoASTAL cohort

    Citation: Tracy K, Boushey CJ, Roberts SM, Morris JG Jr, Grattan LM. (2016). Communities advancing the studies of Tribal nations across their lifespan: Design, methods, and baseline of the CoASTAL cohort. doi:10.1016/j.hal.2016.03.010.

    PMID: 28918893

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Abstract The CoASTAL cohort represents the first community cohort assembled to study a HAB-related illness. It is comprised of three Native American tribes in the Pacific NW for the purpose of studying the health impacts of chronic, low level domoic acid (DA) exposure through razor clam consumption. This cohort is at risk of DA toxicity by virtue of their geographic location (access to beaches with a history of elevated DA levels in razor clams) and the cultural and traditional significance of razor clams in their diet. In this prospective, longitudinal study, Wave 1 of the cohort was comprised of 678 members across the human lifespan, with both sexes represented within child, adult, and geriatric age groups. All participants were followed annually with standard measures of medical and social history; neuropsychological functions, psychological status, and dietary exposure. DA concentrations were measured at both public and reservation beaches where razor clams are acquired. Multiple metrics were piloted to further determine exposure. Baseline data indicated that all cognitive and psychological functions were within normal limits. In addition, there was considerable variability in razor clam exposure. Therefore, the CoASTAL cohort offers a unique opportunity to investigate the potential health effects of chronic, low level exposure to DA over time. Copyright © 2016. Published by Elsevier B.V.


  • Community capacity for cancer control collaboration: Weaving an Islander Network for Cancer Awareness, Research and Training for Pacific Islanders in Southern California

    Citation: Tanjasiri, SPT, Jacqueline H. (2008). Community capacity for cancer control collaboration: Weaving an Islander Network for Cancer Awareness, Research and Training for Pacific Islanders in Southern California. 32: S37-S40.

    PMID: 18359580

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Background: Addressing cancer health disparities constitutes a national priority in this country, with funding for Pacific Islander efforts initiated 7 years ago by the National Cancer Institute. In 2005, the Weaving an Islander Network for Cancer Awareness, Research and Training (WINCART) was launched in Southern California by a collaboration of community and university organizations to build upon past efforts to decrease cancer health disparities for Chamorros, Native Hawaiians, Marshallese, Samoans and Tongans. Methods: To assess community organizational capacity to participate in collaborative cancer control for Pacific Islanders, a strengths, weaknesses, opportunities, and threats (SWOT) analysis was undertaken. Two staff members per community organization (CBO) performed the SWOT analyses, with grids analyzed for commonalities and differences between all organizations. Results: Staff informants provided many examples of what they perceived as organizational strengths and weaknesses with regards to promoting cancer control for their respective Pacific Islander populations. CBO strengths included strong leadership and extensive community experience. Challenges included limited resources, lack of staff skills in some areas, and difficulty in recruiting volunteers. In addition, many external opportunities and threats to cancer control promotion were identified. Conclusion: Results from the SWOT analyses have been used to identify topics for community organizational trainings and supports within WINCART, with the goals of increasing their participation in the development and implementation of collaborative, community-university driven efforts to decrease cancer disparities for Pacific Islanders in Southern California. (C) 2008 International Society for Preventive Oncology. Published by Elsevier Ltd. All rights reserved.


  • Community Networks Program Hits 5-Year Mark

    Citation: (2010). Community Networks Program Hits 5-Year Mark [Article]. 116: 1841-1843.

    PMID: 20391427

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    The article focuses on implementation of the Community Networks Program (CNP) of Southwest American Indian Collaborative Network (SAICN), funded by the National Cancer Institute (NCI). It mentions that rebuilding the trust of the Arizona American Indian tribes to university researchers is the biggest challenge face by SAICN. It discusses the implementation of the program which intends to reduce health disparities, particularly related to cancer, in undeserved and racial/ethnic population.


  • Community partnership research with the Yakama Indian Nation

    Citation: Chrisman, NJS, C. June Powell, KoLynn. (1999). Community partnership research with the Yakama Indian Nation [Article]. 58: 134-141.

    PMID:

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Community organization has been an important part of applied anthropology for much of its history. Recently, fields such as health education and public health have made contributions to this area of knowledge. This paper reports on a participatory action research (PAR) project using principles from various fields as they apply to the early detection of cervical cancer through Pap smears. The project was carried out with the Yakama Indian Nation through a partnership between university researchers and practitioners and tribal members and officials. Working with a community board, the investigators conducted collaborative research to design programs to increase both women's use of Pap smears and the tribe's capacity to manage future projects. Through open-ended interviews with Native American women we learned their primary interests are in family, community, and spirituality, rather than cancer. For that reason, programs were designed to meet these broader needs. Successes in a variety of projects support our belief that PAR is a valuable design for community capacity-building research. Reprinted by permission of the publisher.


  • Community-based participatory development, implementation, and evaluation of a cancer screening educational intervention among American Indians in the Northern Plains

    Citation: Subrahmanian, KP, Daniel G. Kanekar, Shalini Burhansstipanov, Linda Esmond, Sarah Miner, Raylene Spotted Tail, Caroline Guadagnolo, B. Ashleigh. (2011). Community-based participatory development, implementation, and evaluation of a cancer screening educational intervention among American Indians in the Northern Plains. 26: 530-539.

    PMID: 21431984

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    The study describes the creation and implementation of a culturally appropriate cancer education intervention, and assesses its efficacy among American Indians in a community with documented cancer-related disparities. Education workshops were developed and conducted on three western South Dakota reservations and in Rapid City by trained community representatives. Over 400 individuals participated in the 2-h workshops. Participants answered demographic questions, questions about previous cancer screening (to establish baseline screening rates), and completed a pre- and post-workshop quiz to assess learning. Participants demonstrated significant increases in cancer screening-related knowledge levels. Surveys reveal that participants found the information of high quality, great value and would recommend the program to friends. Pre-workshop data reveals cancer screening rates well below the national average. Workshop participants increased their knowledge about cancer etiology and screening. This intervention may represent an effective tool for increasing cancer screening utilization among American Indians.;


  • Community-randomised controlled trial embedded in the Anishinaabek Cervical Cancer Screening Study: human papillomavirus self-sampling versus Papanicolaou cytology

    Citation: Zehbe I, Jackson R, Wood B, Weaver B, Escott N, Severini A, Krajden M, Bishop L, Morrisseau K, Ogilvie G, Burchell AN, Little J. (2016). Community-randomised controlled trial embedded in the Anishinaabek Cervical Cancer Screening Study: human papillomavirus self-sampling versus Papanicolaou cytology. doi:10.1136/bmjopen-2016-011754.

    PMID: 27855089

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Screening Program

    OBJECTIVES: The incidence of cervical cancer is up to 20-fold higher among First Nations women in Canada than the general population, probably due to lower participation in screening. Offering human papillomavirus (HPV) self-sampling in place of Papanicolaou (Pap) testing may eventually increase screening participation and reduce cervical cancer rates in this population. DESIGN: A community-randomised controlled screening trial. SETTING: First Nations communities in Northwest Ontario, Canada. PARTICIPANTS: Women aged between 25 and 69, living in Robinson Superior Treaty First Nations. The community was the unit of randomisation. INTERVENTIONS: Women were asked to complete a questionnaire and have screening by HPV self-sampling (arm A) or Pap testing (arm B). PRIMARY OUTCOME MEASURES: The number of women who participated in cervical screening. RANDOMISATION: Community clusters were randomised to include approximately equivalent numbers of women in each arm. RESULTS: 6 communities were randomised to arm A and 5 to arm B. One community withdrew, leaving 5 communities in each group (834 eligible women). Participation was <25%. Using clustered intention-to-treat (ITT) analysis, initial and cumulative averaged uptakes in arm A were 1.4-fold (20% vs 14.3%, p=0.628) and 1.3-fold (20.6% vs 16%, p=0.694) higher compared to arm B, respectively. Corresponding per protocol (PP) analysis indicates 2.2-fold (22.9% vs 10.6%, p=0.305) and 1.6-fold (22.9% vs 14.1%, p=0.448) higher uptakes in arm A compared to arm B. Screening uptake varied between communities (range 0-62.1%). Among women who completed a questionnaire (18.3% in arm A, 21.7% in arm B), the screening uptake was 1.8-fold (ITT; p=0.1132) or 3-fold (PP; p<0.01) higher in arm A versus arm B. CONCLUSIONS: Pap and HPV self-sampling were compared in a marginalised, Canadian population. Results indicated a preference for self-sampling. More research on how to reach underscreened Indigenous women is necessary. TRIAL REGISTRATION NUMBER: ISRCTN84617261. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.


  • Community-randomised controlled trial embedded in the Anishinaabek Cervical CancerScreening Study: human papillomavirus self-sampling versus Papanicolaou cytology

    Citation: Zehbe I, Jackson R, Wood B, Weaver B, Escott N, Severini A, Krajden M, Bishop L, Morrisseau K, Ogilvie G, Burchell AN, Little J. (2016). Community-randomised controlled trial embedded in the Anishinaabek Cervical CancerScreening Study: human papillomavirus self-sampling versus Papanicolaou cytology. doi:10.1136/bmjopen-2016-011754.

    PMID: 27855089

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Screening Program

    OBJECTIVES: The incidence of cervical cancer is up to 20-fold higher among First Nations women in Canada than the general population, probably due to lower participation in screening. Offering human papillomavirus (HPV) self-sampling in place of Papanicolaou (Pap) testing may eventually increase screening participation and reduce cervical cancer rates in this population. DESIGN: A community-randomised controlled screening trial. SETTING: First Nations communities in Northwest Ontario, Canada. PARTICIPANTS: Women aged between 25 and 69, living in Robinson Superior Treaty First Nations. The community was the unit of randomisation. INTERVENTIONS: Women were asked to complete a questionnaire and have screening by HPV self-sampling (arm A) or Pap testing (arm B). PRIMARY OUTCOME MEASURES: The number of women who participated in cervical screening. RANDOMISATION: Community clusters were randomised to include approximately equivalent numbers of women in each arm. RESULTS: 6 communities were randomised to arm A and 5 to arm B. One community withdrew, leaving 5 communities in each group (834 eligible women). Participation was <25%. Using clustered intention-to-treat (ITT) analysis, initial and cumulative averaged uptakes in arm A were 1.4-fold (20% vs 14.3%, p=0.628) and 1.3-fold (20.6% vs 16%, p=0.694) higher compared to arm B, respectively. Corresponding per protocol (PP) analysis indicates 2.2-fold (22.9% vs 10.6%, p=0.305) and 1.6-fold (22.9% vs 14.1%, p=0.448) higher uptakes in arm A compared to arm B. Screening uptake varied between communities (range 0-62.1%). Among women who completed a questionnaire (18.3% in arm A, 21.7% in arm B), the screening uptake was 1.8-fold (ITT; p=0.1132) or 3-fold (PP; p<0.01) higher in arm A versus arm B. CONCLUSIONS: Pap and HPV self-sampling were compared in a marginalised, Canadian population. Results indicated a preference for self-sampling. More research on how to reach underscreened Indigenous women is necessary. TRIAL REGISTRATION NUMBER: ISRCTN84617261. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.


  • Comparison of fecal occult blood tests for colorectal cancer screening in an Alaska Native population with high prevalence of Helicobacter pylori infection, 2008-2012

    Citation: Redwood D, Provost E, Asay E, Roberts D, Haverkamp D, Perdue D, Bruce MG, Sacco F, Espey D. (2014). Comparison of fecal occult blood tests for colorectal cancer screening in an Alaska Native population with high prevalence of Helicobacter pylori infection, 2008-2012. doi:10.5888/pcd11.130281.

    PMID: 24721216

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    INTRODUCTION: Alaska Native colorectal cancer (CRC) incidence and mortality rates are the highest of any ethnic/racial group in the United States. CRC screening using guaiac-based fecal occult blood tests (gFOBT) are not recommended for Alaska Native people because of false-positive results associated with a high prevalence of Helicobacter pylori-associated hemorrhagic gastritis. This study evaluated whether the newer immunochemical FOBT (iFOBT) resulted in a lower false-positive rate and higher specificity for detecting advanced colorectal neoplasia than gFOBT in a population with elevated prevalence of H. pylori infection. METHODS: We used a population-based sample of 304 asymptomatic Alaska Native adults aged 40 years or older undergoing screening or surveillance colonoscopy (April 2008-January 2012). RESULTS: Specificity differed significantly (P < .001) between gFOBT (76%; 95% CI, 71%-81%) and iFOBT (92%; 95% CI, 89%-96%). Among H. pylori-positive participants (54%), specificity of iFOBT was even higher (93% vs 69%). Overall, sensitivity did not differ significantly (P = .73) between gFOBT (29%) and iFOBT (36%). Positive predictive value was 11% for gFOBT and 32% for iFOBT. CONCLUSION: The iFOBT had a significantly higher specificity than gFOBT, especially in participants with current H. pylori infection. The iFOBT represents a potential strategy for expanding CRC screening among Alaska Native and other populations with elevated prevalence of H. pylori, especially where access to screening endoscopy is limited.


  • Conducting a Feasibility Study in Women's Health Screening Among Women in a Pacific Northwest American Indian Tribe

    Citation: Strickland CJ, Hillaire E. (2016). Conducting a Feasibility Study in Women's Health Screening Among Women in a Pacific Northwest American Indian Tribe. doi:10.1177/1043659614526251.

    PMID: 24848352

    Cancer Sites(s): Breast, Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Breast and cervical cancers continue to contribute to high cancer mortality rates in American Indian/Alaska Native women; culturally appropriate interventions are needed to influence screening behaviors and to reduce delays in obtaining care. In a pilot feasibility study designed to influence Pacific Northwest American Indian/Alaska Native women's health screening knowledge and behaviors (breast and cervical), we employed a community-based participatory research approach. Data from interviews with study participants, those involved in implementation of the study and observations were included in the analysis. Study questions focused on training of staff, recruitment of participants, and implementation of the protocol and data management. The complexities of translational, transcultural research and the importance of reporting pilot feasibility studies to the advancement of transcultural research are highlighted in the findings of this research effort. © The Author(s) 2014.


  • Conversations about Community-Based Participatory Research and Trust: We Are Explorers Together

    Citation: Blacksher E, Nelson C, Van Dyke E, Echo-Hawk A, Bassett D, Buchwald D. (2016). Conversations about Community-Based Participatory Research and Trust: We Are Explorers Together. doi:10.1353/cpr.2016.0039.

    PMID: 27346777

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: This paper describes a study circle and a series of conversations with a community partner that were part of a project that grew out of a partnership between Native People for Cancer Control, a research program at the University of Washington, and five tribes in Washington, Idaho, and Montana. METHODS: Researchers undertook a study circle to build bioethics capacity and, specifically, to better understand the values that should guide community-based participatory research (CBPR). RESULTS: Study circle members identified five action guiding principles for CBPR: respect tribal sovereignty, promote transparency, hear community priorities, learn from each other, and take collective action. This activity led to a series of conversations between researchers and the chair of Shoalwater Bay Tribe, Charlene Nelson. Nelson suggests the metaphor of exploration as a way to think about what good CBPR looks like. Exploration reframes the research enterprise, from a systematic scientific inquiry conducted by academic investigators to a less predictable activity that reaches into the uncontrolled and unknown. We used this metaphor to explore three features of CBPR we believe to be essential to building trust: ongoing commitment and time, direct collaboration with community members and new learning for all involved, and candid and cautious action. CONCLUSIONS: The CBPR literature underscores many of these same points; however, we found the metaphorical language offered by Nelson enriched their meaning and deepened study circle members' appreciation of them.


  • Culturally-Relevant Online Cancer Education Modules Empower Alaska's Community Health Aides/Practitioners to Disseminate Cancer Information and Reduce Cancer Risk

    Citation: Cueva K, Revels L, Cueva M, Lanier AP, Dignan M, Viswanath K, Fung TT, Geller AC. (2018). Culturally-Relevant Online Cancer Education Modules Empower Alaska's Community Health Aides/Practitioners to Disseminate Cancer Information and Reduce Cancer Risk. doi:10.1007/s13187-017-1217-4.

    PMID: 28405897

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Community Health Worker, Health Education and Promotion

    To address a desire for timely, medically accurate cancer education in rural Alaska, ten culturally relevant online learning modules were developed with, and for, Alaska's Community Health Aides/Practitioners (CHA/Ps). The project was guided by the framework of Community-Based Participatory Action Research, honored Indigenous Ways of Knowing, and was informed by Empowerment Theory. A total of 428 end-of-module evaluation surveys were completed by 89 unique Alaska CHA/Ps between January and December 2016. CHA/Ps shared that as a result of completing the modules, they were empowered to share cancer information with their patients, families, friends, and communities, as well as engage in cancer risk reduction behaviors such as eating healthier, getting cancer screenings, exercising more, and quitting tobacco. CHA/Ps also reported the modules were informative and respectful of their diverse cultures. These results from end-of-module evaluation surveys suggest that the collaboratively developed, culturally relevant, online cancer education modules have empowered CHA/Ps to reduce cancer risk and disseminate cancer information. brought me to tears couple of times, and I think it will help in destroying the silence that surrounds cancer.


  • Culturally-Relevant Online Education Improves Health Workers' Capacity and Intent to Address Cancer

    Citation: Cueva K, Cueva M, Revels L, Dignan M. (2018). Culturally-Relevant Online Education Improves Health Workers' Capacity and Intent to Address Cancer. doi:10.1007/s10900-018-0465-5.

    PMID: 29368103

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Community Health Worker, Health Education and Promotion

    To address a desire for timely, medically-accurate cancer education in rural Alaska, ten culturally-relevant online learning modules were developed, implemented, and evaluated with, and for, Alaska's Community Health Aides/Practitioners (CHA/Ps). The project was guided by the framework of Community-Based Participatory Action Research, honored Indigenous Ways of Knowing, and was informed by Empowerment Theory. Each learner was invited to complete an end-of-module evaluation survey. The survey asked about changes in intent to share cancer information with patients as a result of the module. In 1 year, August 1, 2016-July 31, 2017, 459 surveys were completed by 79 CHA/Ps. CHA/Ps reported that, because of the modules, they felt more knowledgeable about cancer, and more comfortable, confident, and prepared to talk about cancer with their patients, families, and communities. All learners shared that because of the modules, they intended to talk with their patients more often about cancer screenings, tobacco cessation, physical activity, or nutrition. These findings suggest that the application of this collaboratively developed, culturally-relevant, health promotion intervention has supported increased CHA/P capacity and intent to interact with patients about cancer. In the words of a learner: Doing all these courses makes me a ton times more comfortable in talking about cancer with anyone. I didn't know too much about it at first but now I know a whole lot. Thank you.


  • Culturally-Tailored Smoking Cessation for Adult American Indian Smokers: A Clinical Trial

    Citation: Smith SS, Rouse LM, Caskey M, Fossum J, Strickland R, Culhane JK, Waukau J. (2014). Culturally-Tailored Smoking Cessation for Adult American Indian Smokers: A Clinical Trial. doi:10.1177/0011000014542601.

    PMID: 26973352

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Innovative Technology

    This collaborative, community-engaged project developed and tested a Culturally-Tailored Treatment (CTT) for American Indian/Alaska Native (AI/AN) smokers in the Menominee tribal community. One hundred three adult AI/AN smokers were randomized to receive either Standard Treatment (n= 53) or CTT (n = 50) for smoking cessation. Both treatment conditions included 12 weeks of varenicline and four individual counseling sessions but differed in terms of cultural tailoring of the counseling. The primary outcome was 7-day biochemically-confirmed point-prevalence abstinence (PPA) at the 6-month end-of-study visit. Both intention-to-treat (ITT) and responder-only analyses were conducted. There were no statistically significant group differences in 7-day PPA. The overall ITT abstinence rate at 6 months was 20%; the responder-only rate was 42%. The current study represents the first randomized smoking cessation clinical trial testing a culturally-tailored smoking cessation intervention designed for a specific AI/AN tribal community that combined FDA-approved cessation medication (varenicline) and innovative cultural intervention components.


  • Culture-broker and medical decoder: contributions of caregivers in American Indian cancer trajectories

    Citation: Hodge FS, Cadogan M, Itty TL, Williams A, Finney A. (2016). Culture-broker and medical decoder: contributions of caregivers in American Indian cancer trajectories. doi:10.12788/jcso.0254.

    PMID: 27258055

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: Caregivers play a special role in the management and control of cancer-related pain. For American Indians with cancer, caregivers can contribute to patient education, medication compliance, and can facilitate communication between the patient and the provider and the patient and the family. OBJECTIVE: To identify the role(s) of caregivers of American Indian cancer survivors. METHODS: As a part of a large randomized intervention designed to improve barriers to cancer symptom management, 13 focus groups were held among American Indian cancer survivors and their caregivers at Southwest reservations and urban sites. Focus groups, audiotaped and transcribed, used constant comparative methods in the analysis of caregiver dialogues. RESULTS: Caregivers are patient educators and provider culture-brokers and their communication strategies use a combination of cultural and conventional strategies in their care of American Indian cancer patients. Cultural communication styles include talk stories (storytelling), group (talking circles), and dialogue to manage cancer pain, educate the patient and community, and to protect the patient from stigma, reduce barriers to care, and provide support to patients and families. Active discussion with providers re-packaged the patient's reporting/responses to specific clinical measures (pain measure scores) and identified the need for pain medication and compliance-related issues. LIMITATIONS: Findings are not generalizable to the American Indian population outside of the sites and focus groups from which data were collected. CONCLUSIONS: Caregivers are cultural brokers who inform providers of the cultural nuances associated with American Indian patient care. However, caregivers voiced that cultural restriction for not discussing illness openly was a sanction and an important barrier. ©2016 Frontline Medical Communications.


  • Cycles of silence: First Nations women overcoming social and historical barriers in supportive cancer care

    Citation: Hammond C, Thomas R, Gifford W, Poudrier J, Hamilton R, Brooks C, Morrison T, Scott T, Warner D. (2017). Cycles of silence: First Nations women overcoming social and historical barriers in supportive cancer care. doi:10.1002/pon.4335.

    PMID: 27935147

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Arts Program

    BACKGROUND: First Nations people with cancer in Canada confront several critical inequities in physical and psychosocial domains. First Nations women are at a particular disadvantage as they are disproportionately affected by social determinants of health, but how they navigate these challenges within their communities is poorly understood. OBJECTIVE: Our study explores survivorship experiences of First Nations women with cancer and their caregivers. Drawing from a larger data set on survivorship, we identify several major barriers to cancer communication and support in First Nations communities. METHODS: Our team conducted a participatory, arts-based study using several data collection methods (interviews, sharing sessions, photovoice, and other creative activities) with 43 participants (24 cancer survivors and 19 caregivers) from four First Nations communities in Canada. RESULTS: Two major themes have emerged out of our data analyses: (1) suffering without support leads to cycles of silence and (2) community-based supports can disrupt these cycles. We identified several social, historical, and institutional barriers to speaking about cancer and finding/providing support; however, communities met the challenge of silence through voluntary and unsolicited provision of support. CONCLUSIONS: Widespread silence around cancer reflects both the limited access First Nations people have to formal, supportive programs and services, as well as the creative ways they provide emotional, social, and financial support within their informal networks. Beyond the support of their communities, they also required institutional provision of care that is culturally safe, addressing the colonial impacts on cancer communication and the disproportionate burdens of disease in First Nations communities. Copyright © 2016 John Wiley & Sons, Ltd.


  • Cytochrome P450 Genetic Variation Associated with Tamoxifen Biotransformation in American Indian and Alaska Native People

    Citation: Khan BA, Robinson R, Fohner AE, Muzquiz LI, Schilling BD, Beans JA, Olnes MJ, Trawicki L, Frydenlund H, Laukes C, Beatty P, Phillips B, Nickerson D, Howlett K, Dillard DA, Thornton TA, Thummel KE, Woodahl EL. (2018). Cytochrome P450 Genetic Variation Associated with Tamoxifen Biotransformation in American Indian and Alaska Native People. doi:10.1111/cts.12542.

    PMID: 29436156

    Cancer Sites(s): Breast

    Cancer Continuum(s): Treatment

    Intervention Site(s): Biologic

    Intervention Type(s): N/A

    Despite evidence that pharmacogenetics can improve tamoxifen pharmacotherapy, there are few studies with American Indian and Alaska Native (AIAN) people. We examined variation in cytochrome P450 (CYP) genes (CYP2D6, CYP3A4, CYP3A5, and CYP2C9) and tamoxifen biotransformation in AIAN patients with breast cancer (n = 42) from the Southcentral Foundation in Alaska and the Confederated Salish and Kootenai Tribes in Montana. We tested for associations between CYP diplotypes and plasma concentrations of tamoxifen and metabolites. Only the CYP2D6 variation was significantly associated with concentrations of endoxifen (P = 0.0008) and 4-hydroxytamoxifen (P = 0.0074), tamoxifen's principal active metabolites, as well as key metabolic ratios. The CYP2D6 was also the most significant predictor of active metabolites and metabolic ratios in a multivariate regression model, including all four genes as predictors, with minor roles for other CYP genes. In AIAN populations, CYP2D6 is the largest contributor to tamoxifen bioactivation, illustrating the importance of validating pharmacogenetic testing for therapy optimization in an understudied population. © 2018 The Authors. Clinical and Translational Science published by Wiley Periodicals, Inc. on behalf of American Society for Clinical Pharmacology and Therapeutics.


  • Decisional stage distribution for colorectal cancer screening among diverse, low-income study participants

    Citation: Hester CM, Born WK, Yeh HW, Young KL, James AS, Daley CM, Greiner KA. (2015). Decisional stage distribution for colorectal cancer screening among diverse, low-income study participants. doi:10.1093/her/cyv006.

    PMID: 25721254

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Colorectal cancer (CRC) screening uptake among minorities and those with lower incomes is suboptimal. Behavioral interventions specifically tailored to these populations can increase screening rates and save lives. The Precaution Adoption Process Model (PAPM) allows assignment of a decisional stage for adoption of a behavior such as CRC screening. Here, we characterize the PAPM decisional stage distribution among 470 low income, racially and ethnically diverse study participants at intake into a behavioral intervention study designed to increase CRC screening uptake. We staged participants for stool blood test (SBT) and colonoscopy separately and used the highest stage for the two tests as the 'overall' stage for CRC screening. For SBT, sex, language (English versus Spanish) and doctor recommendation were significantly related to PAPM stage for CRC screening. For colonoscopy, language, education level, doctor recommendation and self-efficacy were related to stage. For overall CRC screening stage, all the variables associated with either SBT or colonoscopy, with the exception of language were significant. This study suggests attending to these key variables in designing interventions to promote CRC screening, particularly with respect to medically underserved populations. © The Author 2015. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.


  • Developing a community-based collaboration to reduce cancer health disparities among Pacific Islanders in California

    Citation: Tanjasiri, SPT, Jacqueline H. Palmer, Paula Healani Foo, Mary Anne Hanneman, Marion Lee, Cevadne Sablan-Santos, Lola Sripipatana, Alek. (2007). Developing a community-based collaboration to reduce cancer health disparities among Pacific Islanders in California. 14: 119-127.

    PMID: 19772147

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Cancer is a leading cause of death for Asians and Pacific Islanders in the United States, but education and research efforts addressing the needs ofPacific Islanders in the continental U.S. is sparse. The purpose of this paper is to describe the development of a community-based participatory research network dedicated to addressing cancer health disparities among Chamorros, Marshallese, Native Hawaiians, Samoans and Tongans in Southern California. Community-based organizations (CBO) comprise the focus of the network, and their efforts have included increasing cancer-related awareness in their communities, developing capacities regarding cancer control, and initiating collaborative research efforts with academic partners. First year processes and outcomes are described, and specific examples are given from two CBO partners.;


  • Developing a culturally responsive breast cancer screening promotion with native Hawaiian women in churches

    Citation: Kaòpua, LS. (2008). Developing a culturally responsive breast cancer screening promotion with native Hawaiian women in churches. 33: 169-177.

    PMID: 18773792

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Faith Based

    Intervention Type(s): Health Education and Promotion

    This article presents findings from research to develop the promotional component of a breast cancer screening program for Native Hawaiian women associated with historically Hawaiian churches in medically under served communities. The literature on adherence to health recommendations and health promotions marketing guided inquiry on screening influences. Focus groups and individual interviews patterned on the culturally familiar practice of talk story were conducted with 60 Hawaiian women recruited through religious and social organizations. Text data were analyzed with an incremental process involving content analysis and Airhihenbuwa's PEN-3 model. Key informants and senior colleagues reviewed preliminary findings to ensure accuracy of interpretation. Findings reflect collectivist values at the intersection of indigenous Hawaiian culture and religiosity. Inclusion of messages that encourage holistic health across the intergenerational continuum of extended family and fictive kin, reinforcement from spiritual leaders, and testimonials of cancer survivors and family members may facilitate Hawaiian women's screening intent. (PsycINFO Database Record (c) 2012 APA, all rights reserved). (journal abstract)


  • Developing an obesity-cancer intervention for workplaces: Indigenous, Native American, M?ori and other minority occupational settings

    Citation: Haring RC (Seneca Nation), Hudson M (Whakatohea M?ori), Erwin D, Rodriguez EM, Henry WAE (Tuscarora Nation), Haring M (Seneca Nation). (2016). Developing an obesity-cancer intervention for workplaces: Indigenous, Native American, M?ori and other minority occupational settings.

    PMID: 30140778

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    There is growing evidence for links between obesity and certain types of cancer. Studies done within Native American, M?ori, and other Indigenous populations suggest the need to promote healthier lifestyles, including the maintenance of optimal body weight through nutrition and physical activity, to lower the risk factors of obesity-related cancers. What is missing is a program that combines culturally attuned workplace interventions that deal with obesity reduction as it relates to cancer prevention. The main purpose of this project was to discuss the process of developing an employee assistance program module to reduce the risk for obesity-related cancers. Expert curriculum developers specialising in workplace disease management assisted with the creation of a unique obesity and cancer prevention program. Several national leaders in Indigenous and minority health were consulted for feedback. The completed intervention included a six-session model with cultural features wrapped around topics of obesity-related cancer warning signs, diet and physical activity guidance, stress management, goal-setting, and resource linkage. A Native American workplace was selected for feasibility and pilot testing. Preliminary results are also discussed. Ultimately, this paper presents a novel intervention approach to address health issues for Native Americans, with indicators for use in other Indigenous populations globally.


  • Developing cancer-related educational content and goals tailored to the Comanche Nation

    Citation: Eschiti, VL, Jana Burhansstipanov, Linda Weryackwe-Sanford, Stacey Weryackwe, Leslie Flores, Yvonne. (2014). Developing cancer-related educational content and goals tailored to the Comanche Nation. 18: E26-E31.

    PMID: 24675267

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Health Education and Promotion

    Cancer-related educational content and goals should be modified to the needs of Native Americans to ensure adherence to healthy lifestyles. The current article describes the development of cancer-related educational modules that include creating behavioral goals specific to the people of the Comanche Nation. A community-based participatory research approach was used to conduct focus groups in the Comanche Nation and obtain feedback related to cancer-related educational modules and behavioral goals. Content analysis, verbatim transcriptions, field notes, and observations were used to analyze data and create five major themes. Comanche people need cancer educational modules and goals tailored to their culture to become engaged and maintain interest, thereby improving the likelihood of increasing cancer-related knowledge. Oncology nurses should respect guidance provided by Comanche community members to adapt cancer-related education materials and processes, as well as goal development, to address cultural concepts. When Comanche community members become knowledgeable and work toward healthy behavioral change, cancer health disparities may decrease.;


  • Development and evaluation of a support program for prostate cancer survivors in Alaska

    Citation: Kelley, SD, Christine Thorsness, Julia. (2015). Development and evaluation of a support program for prostate cancer survivors in Alaska. 74: 28605-28605.

    PMID: 26612829

    Cancer Sites(s): Prostate

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Support Group

    Background: Prostate cancer survivors in Alaska and elsewhere have unmet support needs. The Men's Prostate Cancer Survivorship Retreat, or 'men's retreat', was developed targeting Alaska Native and non-Native men who were survivors of prostate cancer. The program brought together survivors in a supportive environment to discuss and share their experiences.; Objective: Despite the proven effectiveness of support groups for improving quality of life for cancer patients, men typically do not participate in formal support groups. This descriptive study was conducted to explore the needs of Alaska Native and non-Native prostate cancer survivors and assess satisfaction and acceptability of a men's cancer survivorship retreat in Alaska.; Methods: Prostate cancer survivors (N=80) who attended men's retreats during 2009-2013 were asked to complete a retreat application and post-retreat evaluation. Comments regarding social support, helpful and valuable aspects of the retreat including overall satisfaction were reported.; Results: A men's retreat with activities that engage men can be successful for prostate cancer survivors. Many men returned for successive retreats. After the retreat, 97% of the participants said they would continue with support activities.; Conclusion: The men's retreat provides a valued opportunity for men to interact with other survivors and access information from health professionals. The results from this study highlight a successful model for social support and resources specific to male prostate cancer survivors.;


  • Development and implementation of a culturally sensitive cervical health survey: A community-based participatory approach

    Citation: Smith, AC, S. McCormick, Akhg. (2004). Development and implementation of a culturally sensitive cervical health survey: A community-based participatory approach. 40: 67-86.

    PMID: 15778139

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Community Health Worker

    Cervical cancer mortality rates are higher for Great Plains Native American women than for Caucasian women and other Native women. Messengers for Health, a project based on the Apsaalooke (Crow Indian) reservation, utilizes a lay health advisor approach to decrease cervical cancer screening barriers, increase knowledge regarding screening and prevention, and increase the proportion of women receiving Pap tests among Apsaalooke women aged 18 and older. This project Utilizes a community-based participatory research model, which emphasizes community member involvement in all phases of the project. The initial phase of this project was the development and implementation of a culturally sensitive survey used to guide the program and benefit the community. The process and preliminary results are presented. (C) 2004 by The Haworth Press, Inc. All rights reserved.


  • Development and pilot evaluation of a cancer-focused summer research education program for [corrected] Navajo undergraduate students

    Citation: Garrison, ERB, Mark C. Hosley, Brenda L. Patten, Christi A. Hughes, Christine A. Trapp, Mary A. Petersen, Wesley O. Austin-Garrison, Martha A. Bowman, Clarissa N. Vierkant, Robert A. (2010). Development and pilot evaluation of a cancer-focused summer research education program for [corrected] Navajo undergraduate students. 25: 650-658.

    PMID: 20411446

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Higher Education

    Intervention Type(s): Training for Health Professionals

    This paper describes the development and pilot testing of a 10-week cancer research education program for Navajo undergraduate students. The program was piloted at Diné College with 22 undergraduates (7 men, 15 women) in 2007 and 2008. Students completed a pre-post program survey assessing attitudes, opinions, and knowledge about research and about cancer. The program was found to be culturally acceptable and resulted in statistically significant changes in some of the attitudes and opinions about research and cancer. Combining all 13 knowledge items, there was a significant (p = 0.002) change in the mean total correct percent from baseline [70.3 (SD = 15.9)] to post-program [82.1 (SD = 13.1)]. The curriculum was adapted for a new cancer prevention and control course now offered at Diné College, enhancing sustainability. Ultimately, these efforts may serve to build capacity in communities by developing a cadre of future Native American scientists to develop and implement cancer research.;


  • Development and Pilot Evaluation of Native CREST-a Cancer Research Experience and Student Training Program for Navajo Undergraduate Students

    Citation: Hughes, CAB, Mark C. Horazdovsky, Bruce F. Garrison, Edward R. Patten, Christi A. Petersen, Wesley O. Bowman, Clarissa N. Vierkant, Robert A. (2013). Development and Pilot Evaluation of Native CREST-a Cancer Research Experience and Student Training Program for Navajo Undergraduate Students. 28: 92-99.

    PMID: 23001889

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Higher Education

    Intervention Type(s): Training for Health Professionals

    The Mayo Clinic Cancer Center and Din, College received funding for a 4-year collaborative P20 planning grant from the National Cancer Institute in 2006. The goal of the partnership was to increase Navajo undergraduates' interest in and commitment to biomedical coursework and careers, especially in cancer research. This paper describes the development, pilot testing, and evaluation of Native CREST (Cancer Research Experience and Student Training), a 10-week cancer research training program providing mentorship in a Mayo Clinic basic science or behavioral cancer research lab for Navajo undergraduate students. Seven Native American undergraduate students (five females, two males) were enrolled during the summers of 2008-2011. Students reported the program influenced their career goals and was valuable to their education and development. These efforts may increase the number of Native American career scientists developing and implementing cancer research, which will ultimately benefit the health of Native American people.


  • Development of a cervical cancer education program for native American women in North Carolina

    Citation: Dignan, MS, P. Blinson, K. Michielutte, R. Konen, J. Bell, R. Lane, C. (1995). Development of a cervical cancer education program for native American women in North Carolina. 9: 235-242.

    PMID: 7734289

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Home

    Intervention Type(s): Community Health Worker, Health Education and Promotion

    The North Carolina Native American Cervical Cancer Prevention Project is a five-year, NCI-funded public health education program. The project was developed to address the problem of excess mortality from cervical cancer among Native American women by increasing screening and follow-up of abnormal cervical smears. This paper describes the process of developing and implementing the intervention, an individualized health education program. Development of the intervention was guided by the health belief model, social learning theory, self efficacy theory, and PRECEDE, a planning model. Community analysis revealed that the target populations had limited awareness of cervical cancer as a specific type of cancer, and had an experientially-based pessimistic outlook regarding survival with cancer. Steps in developing the cervical-cancer prevention program included 1) development of objectives, 2) selection of strategies and development of cervical cancer education materials, 3) pretesting and revision, and 4) implementation, monitoring, and further revision. Native American lay health educators were recruited and trained to deliver the program. The experience of developing and implementing the individualized health education program suggests that the design of health education programs for Native Americans should begin with examination of basic assumptions regarding the nature of health and illness in the target population. The unique cultures and the diversity of Native American populations are critical factors in the development of health education programs for them.;


  • Development of Culturally Tailored Educational Brochures on HPV and Pap Tests for American Indian Women

    Citation: Sharpe, PAB, Heather M. McCree, Donna H. Owl-Myers, Elizabeth Taylor, Betty Mullins, Glenda. (2013). Development of Culturally Tailored Educational Brochures on HPV and Pap Tests for American Indian Women. 24: 282-290.

    PMID: 23632451

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Health-Care System

    Intervention Type(s): Health Education and Promotion

    Purpose: Participatory formative research guided the creation of a culturally tailored educational brochure about human papillomavirus (HPV) at an American Indian women's clinic. Method: A review of existing educational materials and in-depth interviews were conducted. Nine steps for creating health communications messages that were patterned after National Cancer Institute guidelines guided the brochure development process. Results: Of 95 women tested for HPV, 41% were positive, 32 (34%) agreed to the in-depth interview, and 9 agreed to the pretesting interview. Mean age was 41 years. Interviews revealed key themes concerning emotional reactions to abnormal Pap test results and HPV; need for basic information about HPV, Pap tests, and results; concerns about HPV stigma, sexual transmission, and communication with sexual partner; and the preferred source and format for HPV educational materials. A literature review revealed 12 areas of basic HPV content. Conclusions: A participatory process successfully engaged nursing staff and patients in creating culturally appropriate brochures for clinic use. Implications for Practice: This article provides specific steps for creating culturally tailored patient education materials.


  • Development of the Northern Plains Native Family Cancer Caregiver Education Program

    Citation: Frerichs, LS, Karen Watanabe-Galloway, Shinobu Duran, Florence. (2012). Development of the Northern Plains Native Family Cancer Caregiver Education Program. 28: 52-59.

    PMID: 22582473

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion, Support Group

    This article describes the process of developing and implementing a series of caregiver workshops for the families of cancer patients. Northern Plains American Indians (NPAIs) suffer from a disproportionate burden of cancer and other health problems. In 2005, the Northern Plains Comprehensive Cancer Control Program (NPCCCP) began working with American Indian communities to establish the Northern Plains Native Family Cancer Caregiver Education Program. The initiative was intended to provide Native families with the knowledge, awareness, and skills they needed to offer cancer care in community and family settings and it would provide support and training to the informal network of caregivers for NPAI cancer patients in order to improve the quality of life of all involved. The program began in one pilot tribal community and was eventually expanded to incorporate ten communities. Throughout the process, NPCCCP consulted widely with other organizations that had experience with developing and implementing community education programs. Each workshop had unique features based on community needs. and each relied on a set of core principles including resource sharing and development, partnership building, community involvement, cultural relevance, and flexibility. The process of establishing the Caregiver Education Program taught those involved some significant lessons. (PsycINFO Database Record (c) 2013 APA, all rights reserved)


  • Digital storytelling: a tool for health promotion and cancer awareness in rural Alaskan communities

    Citation: Cueva, MK, Regina Revels, Laura Schoenberg, Nancy E. Dignan, Mark. (2015). Digital storytelling: a tool for health promotion and cancer awareness in rural Alaskan communities. 74: 28781-28781.

    PMID: 26343881

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Innovative Technology, Support Group

    Background: The purpose of this study was to learn community members' perspectives about digital storytelling after viewing a digital story created by a Community Health Aide/Practitioner (CHA/P).; Methods: Using a qualitative research design, we explored digital storytelling likeability as a health-messaging tool, health information viewers reported learning and, if viewing, cancer-related digital stories facilitated increased comfort in talking about cancer. In addition, we enquired if the digital stories affected how viewers felt about cancer, as well as if viewing the digital stories resulted in health behaviour change or intent to change health behaviour.; Findings: A total of 15 adult community members participated in a 30-45 minute interview, 1-5 months post-viewing of a CHA/P digital story. The majority (13) of viewers interviewed were female, all were Alaska Native and they ranged in age from 25 to 54 years with the average age being 40 years. Due to the small size of communities, which ranged in population from 160 to 2,639 people, all viewers knew the story creator or knew of the story creator. Viewers reported digital stories as an acceptable, emotionally engaging way to increase their cancer awareness and begin conversations. These conversations often served as a springboard for reflection, insight, and cancer-prevention and risk-reduction activities.;


  • Disparities in cancer mortality and incidence among American Indians and Alaska Natives in the United States

    Citation: White MC, Espey DK, Swan J, Wiggins CL, Eheman C, Kaur JS. (2014). Disparities in cancer mortality and incidence among American Indians and Alaska Natives in the United States. doi:10.2105/AJPH.2013.301673.

    PMID: 24754660

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We used improved data on American Indian and Alaska Native (AI/AN) ancestry to provide an updated and comprehensive description of cancer mortality and incidence among AI/AN populations from 1990 to 2009. METHODS: We linked the National Death Index and central cancer registry records independently to the Indian Health Service (IHS) patient registration database to improve identification of AI/AN persons in cancer mortality and incidence data, respectively. Analyses were restricted to non-Hispanic persons residing in Contract Health Service Delivery Area counties in 6 geographic regions of the United States. We compared age-adjusted mortality and incidence rates for AI/AN populations with White populations using rate ratios and mortality-to-incidence ratios. Trends were described using joinpoint analysis. RESULTS: Cancer mortality and incidence rates for AI/AN persons compared with Whites varied by region and type of cancer. Trends in death rates showed that greater progress in cancer control was achieved for White populations compared with AI/AN populations over the last 2 decades. CONCLUSIONS: Spatial variations in mortality and incidence by type of cancer demonstrated both persistent and emerging challenges for cancer control in AI/AN populations.


  • Disparities in hospice utilization among American Indian Medicare beneficiaries dying of cancer

    Citation: Guadagnolo BA, Huo J, Buchholz TA, Petereit DG. (2014). Disparities in hospice utilization among American Indian Medicare beneficiaries dying of cancer.

    PMID: 25417419

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVE: We sought to compare hospice utilization for American Indian and White Medicare beneficiaries dying of cancer. METHODS: We used the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked databases to analyze claims for 181,316 White and 690 American Indian patients dying of breast, cervix, colorectal, kidney, lung, pancreas, prostate cancer, or stomach cancer from 2003 to 2009. RESULTS: A lower proportion of American Indians enrolled in hospice compared to White patients (54% vs 65%, respectively; P < .0001). While the proportion of White patients who used hospice services in the last 6 months of life increased from 61% in 2003 to 68% in 2009 (P < .0001), the proportion of American Indian patients using hospice care remained unchanged (P = .57) and remained below that of their White counterparts throughout the years of study. CONCLUSION: Continued efforts should be made to improve access to culturally relevant hospice care for American Indian patients with terminal cancer.


  • Disparities in Prostate, Lung, Breast, and Colorectal Cancer Survival and Comorbidity Status among Urban American Indians and Alaskan Natives

    Citation: Emerson MA, Banegas MP, Chawla N, Achacoso N, Alexeeff SE, Adams AS, Habel LA. (2017). Disparities in Prostate, Lung, Breast, and Colorectal Cancer Survival and Comorbidity Status among Urban American Indians and Alaskan Natives. doi:10.1158/0008-5472.CAN-17-0429.

    PMID: 29187399

    Cancer Sites(s): Breast, Colorectal, Prostate, Lung

    Cancer Continuum(s): Survivorship, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Cancer is the second leading cause of death among American Indians and Alaskan Natives (AIAN), although cancer survival information in this population is limited, particularly among urban AIAN. In this retrospective cohort study, we compared all-cause and prostate, breast, lung, and colorectal cancer-specific mortality among AIAN (n = 582) and non-Hispanic white (NHW; n = 82,696) enrollees of Kaiser Permanente Northern California (KPNC) diagnosed with primary invasive breast, prostate, lung, or colorectal cancer from 1997 to 2015. Tumor registry and other electronic health records provided information on sociodemographic, comorbidity, tumor, clinical, and treatment characteristics. Cox regression models were used to estimate adjusted survival curves and hazard ratios (HR) with 95% confidence intervals (CI). AIAN had a significantly higher comorbidity burden compared with NHW (P < 0.05). When adjusting for patient, disease characteristics, and Charlson comorbidity scores, all-cause mortality and cancer-specific mortality were significantly higher for AIAN than NHW patients with breast cancer (HR, 1.47; 95% CI, 1.13-1.92) or with prostate cancer (HR, 1.87; 95% CI, 1.14-3.06) but not for AIAN patients with lung and colorectal cancer. Despite approximately equal access to preventive services and cancer care in this setting, we found higher mortality for AIAN than NHW with some cancers, and a greater proportion of AIAN cancer patients with multiple comorbid conditions. This study provides severely needed information on the cancer experience of the 71% of AIANs who live in urban areas and access cancer care outside of the Indian Health Services, from which the vast majority of AIAN cancer information comes. Cancer Res; 77(23); 6770-6. ©2017 AACR.


  • Disparities of cancer incidence in Michigan's American Indians: spotlight on breast cancer

    Citation: Roen EL, Copeland GE, Pinagtore NL, Meza R, Soliman AS. (2014). Disparities of cancer incidence in Michigan's American Indians: spotlight on breast cancer. doi:10.1002/cncr.28589.

    PMID: 24676851

    Cancer Sites(s): Breast

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: In American Indians (AIs), cancer is a leading cause of mortality, yet their disease burden is not fully understood due to unaddressed racial misclassification in cancer registries. This study describes cancer trends among AIs in Michigan, focusing on breast cancer, in a linked data set of Indian Health Service (IHS), tribal, and state cancer registry data adjusted for misclassification. METHODS: AI status was based on reported race and linkage to IHS data and tribal registries. Data with complete linkage on all incident cancer cases in Michigan from 1995 to 2004 was used to calculate age-standardized incidence estimates for invasive all-site and female breast cancers stratified by racial group. For female breast cancers, stage- and age-specific incidence and percent distributions of early- versus late-stage cancers and age of diagnosis were calculated. RESULTS: More than 50% of all AI cases were identified through IHS and/or tribal linkage. In the linked data, AIs had the lowest rates of all-sites and breast cancer. For breast cancers, AI women had a greater late-stage cancer burden and a younger mean age of diagnosis as compared to whites. Although the age-specific rate for whites was greater than for AI women in nearly all age groups, the difference in hazard ratio increased with increasing age. CONCLUSIONS: Our state-specific information will help formulate effective, tailored cancer prevention strategies to this population in Michigan. The data linkages used in our study are crucial for generating accurate rates and can be effective in addressing misclassification of the AI population and formulating cancer prevention strategies for AI nationwide. © 2014 American Cancer Society.


  • Disparities Report: Disparities Among Minority Women With Breast Cancer Living in Impoverished Areas of California

    Citation: Haji-Jama S, Gorey KM, Luginaah IN, Zou G, Hamm C, Holowaty EJ. (2016). Disparities Report: Disparities Among Minority Women With Breast Cancer Living in Impoverished Areas of California. doi:10.1177/107327481602300210.

    PMID: 27218793

    Cancer Sites(s): Breast

    Cancer Continuum(s): Prevention, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Interaction effects of poverty and health care insurance coverage on overall survival rates of breast cancer among women of color and non-Hispanic white women were explored. METHODS: We analyzed California registry data for 2,024 women of color (black, Hispanic, Asian, Pacific Islander, American Indian, or other ethnicity) and 4,276 non-Hispanic white women (Anglo-European ancestries and no Hispanic-Latin ethnic backgrounds) diagnosed with breast cancer between the years 1996 and 2000 who were then followed until 2011. The 2000 US census categorized rates of neighborhood poverty. Health care insurance coverage was either private, Medicare, Medicaid, or none. Cox regression was used to model rates of survival. RESULTS: A 3-way interaction between ethnicity, health care insurance coverage, and poverty was observed. Women of color inadequately insured and living in poor or near-poor neighborhoods in California were the most disadvantaged. Women of color adequately insured and who lived in such neighborhoods in California were also disadvantaged. The incomes of such women of color were typically lower than the incomes of non-Hispanic white women. CONCLUSIONS: Women of color with or without insurance coverage are disadvantaged in poor and near-poor neighborhoods of California. Such women may be less able to bare the indirect, direct, or uncovered costs of health care for breast cancer treatment.


  • Doctors should collaborate with traditional healers

    Citation: Eggertson L. (2015). Doctors should collaborate with traditional healers. doi:10.1503/cmaj.109-4989.

    PMID: 25667253

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): N/A

    Intervention Type(s): N/A


  • Documenting Cancer Information Seeking Behavior and Risk Perception in the Hualapai Indian Community to Inform a Community Health Program

    Citation: Teufel-Shone NI, Cordova-Marks F, Susanyatame G, Teufel-Shone L, Irwin SL. (2015). Documenting Cancer Information Seeking Behavior and Risk Perception in the Hualapai Indian Community to Inform a Community Health Program. doi:10.1007/s10900-015-0009-1.

    PMID: 25791877

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Cancer incidence among American Indians (AIs) is low, yet their 5-year relative survival rate is the second lowest of all U.S. populations. Culturally relevant cancer prevention education is key to achieve health equity. This collaborative project of the Hualapai Tribe and University of Arizona modified the National Cancer Institute's 2003 Health Information National Trends Survey (HINTS) to yield a more culturally relevant cancer information survey to document the health seeking behaviors and perceptions of cancer risks and preventability of AI adults residing in the Hualapai Indian community. A team of health care providers, educators and cancer survivors (six native and three non-natives) completed the adaptation. Four trained native surveyors administered the survey using a random household survey design. The Hualapai HINTS was well accepted (<5% refusal rate) and was completed by 205 adults (20.5% of all adult residents). Respondents reported a preference for and a trust in verbal cancer information and communication with health care professionals (77.1% preference; 57.4% trust) and at workshops (75.2% preference; 45.5% trust). Respondents were aware of some health behaviors associated with a reduced cancer risk, e.g., avoid tobacco use and need for screening. Respondents were less well informed about the role of diet and exercise. These findings were used to inform local cancer prevention education efforts and to develop a series of monthly workshops that engaged local health professionals to reinforce and discuss pathways of the primary role of lifestyle related factors, specifically diet and exercise in reducing cancer risk.


  • Early detection of cervical cancer among native American women: A qualitative supplement to a quantitative study

    Citation: Messer, LS, A. Dignan, M. (1999). Early detection of cervical cancer among native American women: A qualitative supplement to a quantitative study. 26: 547-562.

    PMID: 10435237

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    The North Carolina Native American Cervical Cancer Prevention Project was a 5-year (1989-1995) National Cancer Institute-funded, community-based, early detection of cervical cancer intervention implemented among two Native American tribes in North Carolina: the eastern band of the Cherokee Indians and the Lumbee. The initial quantitative analysis of the intervention showed modest effects and found that the intervention had different effects in the two communities. Due to the equivocal findings, a retrospective qualitative study was conducted. The qualitative study found that two types of factors influenced the intervention's results. The first were project and intervention characteristics, and the second were community and cultural factors over which the project had no control. The community and cultural factors took two forms: enhancers, which contributed to greater intervention effect, and attenuators, which created barriers to success. Examples of each factor are presented, and implications for cervical cancer detection among Native American women are discussed.


  • Effect of educational brochures on Cherokee women with abnormal pap smears

    Citation: Pardini, RS. (1996). Effect of educational brochures on Cherokee women with abnormal pap smears [Article]. 111: 546-547.

    PMID: 8955704

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    One of the runner-up projects in the Department of Health and Human Services 1995 Secretary's Award for Innovations in Health Promotion and Disease Prevention is described. The North Carolina Native American Cervical Cancer Prevention Project is attempting to identify the barriers that stop Native American women from seeking follow-up examination or care after an abnormal Papanicolaou test. The 5-year project compared 2 North Carolina populations—the Lumbee and Cherokee—of Native Americans who traditionally experience excess mortality due to cervical cancer. It then compared the effectiveness of a standard brochure provided by the National Cancer Institute and a culturally specific brochure for encouraging women to comply with follow-up visits.


  • Effectiveness of health education to increase screening for cervical cancer among Eastern-Band Cherokee Indian women in North Carolina

    Citation: Dignan, MM, R. Blinson, K. Wells, H. B. Case, L. D. Sharp, P. Davis, S. Konen, J. McQuellon, R. P. (1996). Effectiveness of health education to increase screening for cervical cancer among Eastern-Band Cherokee Indian women in North Carolina. 88: 1670-1676.

    PMID: 8931612

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Home

    Intervention Type(s): Community Health Worker, Health Education and Promotion

    Background: The North Carolina Native American Cervical Cancer Prevention Project was a 5-year, National Cancer Institute-funded trial of health education designed to increase screening for cervical cancer among Native-American women in North Carolina. Purpose: This study was conducted to evaluate the effectiveness of this education program in the Eastern-Band Cherokee target population. Methods: Cherokee tribal lands were mapped and all households (N = 2223) were listed to ensure maximum coverage of the eligible population (women, aged 18 years and older, who were enrolled tribal members). Eligible women were identified by the use of a brief questionnaire administered to an adult member of the household. Of the 1279 households with eligible women, 1020 (79.8%) agreed to participate. The intervention was an individualized health education program delivered by female Cherokee lag health educators. The participants were randomly assigned to receive or not to receive the intervention (i.e., to program and control groups, respectively) by use of the Solomon Four-Group design. Data were collected in face-to-face interviews conducted in the participant's home. Of the 996 women who were ultimately enrolled, 540 were randomly assigned to receive a pretest (preintervention) interview that involved administration of a 96-item questionnaire designed to collect data on knowledge, intentions, and behaviors related to cervical cancer; of these 540 women, 263 were randomly assigned to receive the education program. The remaining 456 women did not receive the pretest, but 218 were randomly assigned to receive the education program. Six months after receiving the education program, the women in all four groups were administered a post-test that was identical to the pretest. Logistic regression was used to assess the effects of the pretest and the educational program. All P values resulted from two-sided statistical tests. Results: Eight hundred and fifteen (81.8%) of the 996 participants completed the post-test interview. The remaining 181 women who were lost to follow-up were evenly distributed among the four study groups. At the post-test, 282 (73.2%) of the 385 women who received the education program reported having had a Pap smear following the intervention, compared with 275 (64%) of the 430 control subjects. Women who received the education program were more likely to answer all knowledge items correctly on the post-test (odds ratio [OR] = 2.18, 95% confidence interval [CI] = 1.08-4.39) and to report having obtained a Pap smear in the past year (OR = 2.06, 95% CI = 1.14-3.72) than women in the control groups. Conclusion: Women who received the education program exhibited a greater knowledge about cervical cancer prevention and were more likely to have reported having had a Pap smear within the past year than women who did not receive the program.


  • Effects of cultural cues on perceptions of HPV vaccination messages among parents and guardians of American Indian youth

    Citation: Yzer M, Rhodes K, McCann M, Harjo J, Nagler RH, LoRusso SM, Gollust SE. (2018). Effects of cultural cues on perceptions of HPV vaccination messages among parents and guardians of American Indian youth. doi:10.1016/j.ypmed.2018.08.021.

    PMID: 30153440

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    The encouragement of human papillomavirus (HPV) vaccination is an important goal for interventions among American Indians (AIs), given the significant disparities AIs face with respect to HPV cancers. Tailoring intervention messages to the culture of message recipients has been proposed as a potentially useful intervention approach, yet cultural tailoring of HPV messages has never been tested among AIs. The objective of this research was to test the effectiveness of cultural tailoring in positively affecting two variables that have been proposed as mechanisms of tailoring effects, namely identification with the message and perceptions of message effectiveness. We conducted a between subjects randomized experiment among 300 parents of AI children. Participants saw one of three messages that differed in the extent to which the message contained cues to AI culture. Analysis of variance (anova) showed that participants identified more strongly (partial eta2?=?0.10) with messages that included stronger AI cultural features and thought these messages were more convincing (partial eta2?=?0.14) and pleasant (partial eta2?=?0.11) compared to messages that included weaker cultural cues. Effects on message identification and convincingness were moderated by AI identity, such that the more participants identified themselves with AI culture, the stronger the effects of the culturally-tailored messages were (R2change?=?0.043 and 0.020 in hierarchical regression analyses). These findings suggest good potential for cultural tailoring to encourage HPV vaccination among AIs.


  • Encompassing Cultural Contexts Within Scientific Research Methodologies in the Development of Health Promotion Interventions

    Citation: Dickerson D, Baldwin JA, Belcourt A, Belone L, Gittelsohn J, Keawe'aimoku Kaholokula J, Lowe J, Patten CA, Wallerstein N. (2018). Encompassing Cultural Contexts Within Scientific Research Methodologies in the Development of Health Promotion Interventions. doi:10.1007/s11121-018-0926-1.

    PMID: 29959716

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention, Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    American Indians/Alaska Natives/Native Hawaiians (AI/AN/NHs) disproportionately experience higher rates of various health conditions. Developing culturally centered interventions targeting health conditions is a strategy to decrease the burden of health conditions among this population. This study analyzes characteristics from 21 studies currently funded under the Interventions for Health Promotion and Disease Prevention in Native American (NA) Populations program among investigators currently funded under this grant mechanism. Four broad challenges were revealed as critical to address when scientifically establishing culturally centered interventions for Native populations. These challenges were (a) their ability to harness culture-centered knowledge and perspectives from communities; (b) their utilization of Indigenous-based theories and knowledge systems with Western-based intervention paradigms and theories; (c) their use of Western-based methodologies; and (d) their cultural adaptation, if based on an evidence-based treatment. Findings revealed that qualitative methodologies and community-based participatory research (CBPR) approaches were very commonly used to finalize the development of interventions. Various Indigenous-based theories and knowledge systems and Western-based theories were used in the methodologies employed. Cultural adaptations were made that often used formative mixed qualitative and quantitative methods. Illustrative examples of strategies used and suggestions for future research are provided. Findings underscored the importance of CBPR methods to improve the efficacy of interventions for AI/AN/NH communities by integrating Indigenous-based theories and knowledge systems with Western science approaches to improve health.


  • Energy homeostasis genes and breast cancer risk: The influence of ancestry, body size, and menopausal status, the breast cancer health disparities study

    Citation: Slattery ML, Lundgreen A, Hines L, Wolff RK, Torres-Mejia G, Baumgartner KN, John EM. (2015). Energy homeostasis genes and breast cancer risk: The influence of ancestry, body size, and menopausal status, the breast cancer health disparities study. doi:10.1016/j.canep.2015.08.012.

    PMID: 26395295

    Cancer Sites(s): Breast

    Cancer Continuum(s): Prevention

    Intervention Site(s): Biologic

    Intervention Type(s): N/A

    BACKGROUND: Obesity and breast cancer risk is multifaceted and genes associated with energy homeostasis may modify this relationship. METHODS: We evaluated 10 genes that have been associated with obesity and energy homeostasis to determine their association with breast cancer risk in Hispanic/Native American (2111 cases, 2597 controls) and non-Hispanic white (1481 cases, 1585 controls) women. RESULTS: Cholecystokinin (CCK) rs747455 and proopiomelanocortin (POMC) rs6713532 and rs7565877 (for low Indigenous American (IA) ancestry); CCK rs8192472 and neuropeptide Y (NYP) rs16141 and rs14129 (intermediate IA ancestry); and leptin receptor (LEPR) rs11585329 (high IA ancestry) were strongly associated with multiple indicators of body size. There were no significant associations with breast cancer risk between genes and SNPs overall. However, LEPR was significantly associated with breast cancer risk among women with low IA ancestry (PARTP=0.024); POMC was significantly associated with breast cancer risk among women with intermediate (PARTP=0.015) and high (PARTP=0.012) IA ancestry. The overall pathway was statistically significant for pre-menopausal women with low IA ancestry (PARTP=0.05), as was cocaine and amphetamine regulated transcript protein (CARTPT) (PARTP=0.014) and ghrelin (GHRL) (PARTP=0.007). POMC was significantly associated with breast cancer risk among post-menopausal women with higher IA ancestry (PARTP=0.005). Three SNPs in LEPR (rs6704167, rs17412175, and rs7626141), and adiponectin (ADIPOQ); rs822391) showed significant 4-way interactions (GxExMenopausexAncestry) for multiple indicators of body size among pre-menopausal women. CONCLUSIONS: Energy homeostasis genes were associated with breast cancer risk; menopausal status, body size, and genetic ancestry influenced this relationship. Copyright © 2015 Elsevier Ltd. All rights reserved.


  • Engaging Canadian First Nations Women in Cervical Screening through Education

    Citation: Zehbe I, Wakewich P, Wood B, Sameshima P, Banning Y, Little J. (2016). Engaging Canadian First Nations Women in Cervical Screening through Education. doi:10.1080/14635240.2016.1169942.

    PMID: 29321717

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Recognition of the need to decrease cervical cancer rates in Indigenous populations has been ongoing-yet few successful interventions have been reported. In addition, literature addressing the challenges and barriers associated with designing screening programs aimed to specifically reach Indigenous women is limited. Here, we report findings from a mixed methods cervical cancer research project conducted in partnership with 10 First Nations communities in northwest Ontario, Canada. Individual interviews with community health professionals (the majority of whom identified as First Nations) stressed that awareness of cervical screening benefits is lacking. In contrast, focus group participants (women with no formal health education) emphasized the desire to learn more about the science of human papillomavirus (HPV), and that a positive HPV or abnormal Papanicolaou test need not mean a woman will undoubtedly develop cervical cancer. Both the health professionals and the focus group participants highlighted that sexual health education must start early, in schools, preferably before girls are sexually active and that it has to continue throughout life to create a screening culture with a focus on women's wellbeing. Both interview and focus group participants highlighted that sexual health education must start early, in schools, preferably before girls are sexually active and that it has to continue throughout life to create a screening culture with a focus on women's wellbeing. Health professionals elaborated mainly on special events for community women whereas focus group participants also recognized the need to include community men in health education particularly for de-stigmatizing the sexually-transmitted HPV infection.


  • Engaging diverse underserved communities to bridge the mammography divide

    Citation: Engelman, KKC, Ana Paula Daley, Christine M. Long, Trish Cully, Angelia Mayo, Matthew S. Ellerbeck, Edward F. Geana, Mugur V. Greiner, Allen. (2011). Engaging diverse underserved communities to bridge the mammography divide [Article]. 11: 47-63.

    PMID: 21255424

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Home

    Intervention Type(s): Community Health Worker, Health Education and Promotion

    Background: Breast cancer screening continues to be underutilized by the population in general, but is particularly underutilized by traditionally underserved minority populations. Two of the most at risk female minority groups are American Indians/Alaska Natives (AI/AN) and Latinas. American Indian women have the poorest recorded 5-year cancer survival rates of any ethnic group while breast cancer is the number one cause of cancer mortality among Latina women. Breast cancer screening rates for both minority groups are near or at the lowest among all racial/ ethnic groups. As with other health screening behaviors, women may intend to get a mammogram but their intentions may not result in initiation or follow through of the examination process. An accumulating body of research, however, demonstrates the efficacy of developing 'implementation intentions' that define when, where, and how a specific behavior will be performed. The formulation of intended steps in addition to addressing potential barriers to test completion can increase a person's self-efficacy, operationalize and strengthen their intention to act, and close gaps between behavioral intention and completion. To date, an evaluation of the formulation of implementation intentions for breast cancer screening has not been conducted with minority populations. Methods/Design: In the proposed program, community health workers will meet with rural-dwelling Latina and American Indian women one-on-one to educate them about breast cancer and screening and guide them through a computerized and culturally tailored 'implementation intentions' program, called Healthy Living Kansas - Breast Health, to promote breast cancer screening utilization. We will target Latina and AI/AN women from two distinct rural Kansas communities. Women attending community events will be invited by CHWs to participate and be randomized to either a mammography 'implementation intentions' (MI²) intervention or a comparison general breast cancer prevention informational intervention (C). CHWs will be armed with notebook computers loaded with our Healthy Living Kansas - Breast Health program and guide their peers through the program. Women in the MI² condition will receive assistance with operationalizing their screening intentions and identifying and addressing their stated screening barriers with the goal of guiding them toward accessing screening services near their community. Outcomes will be evaluated at 120-days post randomization via self-report and will include mammography utilization status, barriers, and movement along a behavioral stages of readiness to screen model. Discussion: This highly innovative project will be guided and initiated by AI/AN and Latina community members and will test the practical application of emerging behavioral theory among minority persons living in rural communities. Trial Registration: ClinicalTrials (NCT): NCT01267110. [ABSTRACT FROM AUTHOR] Copyright of BMC Public Health is the property of BioMed Central and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)


  • Engaging Elements of Cancer-Related Digital Stories in Alaska

    Citation: Cueva, MK, Regina Revels, Laura Schoenberg, Nancy E. Lanier, Anne Dignan, Mark. (2015). Engaging Elements of Cancer-Related Digital Stories in Alaska.

    PMID: 25865400

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Innovative Technology, Support Group

    The tradition of storytelling is an integral part of Alaska Native cultures that continues to be a way of passing on knowledge. Using a story-based approach to share cancer education is grounded in Alaska Native traditions and people's experiences and has the potential to positively impact cancer knowledge, understandings, and wellness choices. Community health workers (CHWs) in Alaska created a personal digital story as part of a 5-day, in-person cancer education course. To identify engaging elements of digital stories among Alaska Native people, one focus group was held in each of three different Alaska communities with a total of 29 adult participants. After viewing CHWs' digital stories created during CHW cancer education courses, focus group participants commented verbally and in writing about cultural relevance, engaging elements, information learned, and intent to change health behavior. Digital stories were described by Alaska focus group participants as being culturally respectful, informational, inspiring, and motivational. Viewers shared that they liked digital stories because they were short (only 2-3 min); nondirective and not preachy; emotional, told as a personal story and not just facts and figures; and relevant, using photos that showed Alaskan places and people.;


  • Enhancing Access to Cancer Education for Rural Healthcare Providers via Telehealth

    Citation: Doorenbos, AZK, Anjana Eaton, Linda H. Demiris, George Haozous, Emily A. Towle, Cara Buchwald, Dedra. (2011). Enhancing Access to Cancer Education for Rural Healthcare Providers via Telehealth. 26: 682-686.

    PMID: 21336979

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Health-Care System

    Intervention Type(s): Innovative Technology, Training for Health Professionals

    Healthcare providers serving rural populations face numerous barriers to accessing educational programming. Difficulties accessing continuing professional education contribute to the challenges of providing comprehensive health care in the rural setting. Telehealth can inform and educate rural providers about changes in medicine and evidence-based practices, both of which may help them provide quality care. The Native People for Cancer Control Telehealth Network used telehealth technology to deliver a cancer education series in 2008 and 2009 to Washington and Alaska rural healthcare providers who treated American Indians and Alaska Native people. Customizing presentation content to providers' educational needs encouraged attendance. Evaluation indicated videoconferencing technology was positively received for delivery of the educational sessions. This series demonstrated videoconferencing was a satisfactory means of delivering real-time, interactive cancer educational programming to providers who might not otherwise have access to such programs.


  • Enhancing access to cervical and colorectal cancer screening for women in rural and remote northern Alberta: a pilot study

    Citation: Mema SC, Yang H, Elnitsky S, Jiang Z, Vaska M, Xu L. (2017). Enhancing access to cervical and colorectal cancer screening for women in rural and remote northern Alberta: a pilot study. doi:10.9778/cmajo.20170055.

    PMID:

    Cancer Sites(s): Cervical, Colorectal

    Cancer Continuum(s): Detection, Prevention

    Intervention Site(s): Community

    Intervention Type(s): Screening Program

    Background: Women in rural and remote northern Alberta access breast cancer screening through a mobile mammogram program (Screen Test). The Enhanced Access to Cervical and Colorectal Cancer Screening (EACS) project was a 2-year pilot that aimed to integrate cervical and colorectal cancer screening with the Screen Test program. This study compares cervical and colorectal cancer screening uptake among women screened through the pilot (Screen Test-EACS) versus Screen Test. Methods: Screen Test-EACS was offered between 2013 and 2015 in selected rural and remote sites, with a focus on hard-to-reach women living in First Nations, Métis and Hutterite communities. Participation in cervical and colorectal cancer screening was analyzed for Screen Test and Screen Test-EACS participants 6 weeks before clients received their mammogram and then again 3 months after. Results: A total of 8390 and 1312 women participated in Screen Test and Screen Test-EACS, respectively. Screen Test-EACS significantly increased uptake of cervical (10.1% v. 27.5%) and colorectal (10.9% v. 22.5%) cancer screening, increasing the prevalence of women up to date with screening from 52.5% to 62.9% for cervical cancer screening and from 37.3% to 48.7% for colorectal cancer screening. Interpretation: Screen Test-EACS increased participation in and the overall prevalence of cervical and colorectal cancer screening among hard-to-reach clients in northern Alberta, probably through removal of barriers to access and increased awareness. Further research should focus on balancing the benefits of increased participation with the costs and potential risks of over-screening.


  • Enhancing cancer education through the arts: building connections with Alaska Native people, cultures and communities

    Citation: Cueva, MK, Regina Cueva, Katie. (2012). Enhancing cancer education through the arts: building connections with Alaska Native people, cultures and communities [Article]. 31: 341-357.

    PMID:

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Health Worker, Health Education and Promotion

    Building upon the dynamic traditions of Alaska Native people, which include the arts as a viable way of knowing, the expressive arts were woven into a five-day cancer education course for Alaska village-based Community Health Workers (CHWs). Cancer is the leading cause of mortality for Alaska Native people. Course learning modalities included moving, drawing, sculpting and storytelling. A total of six cancer education courses were provided for 57 CHWs. During extended-interval post-course interviews, CHWs described the arts as a culturally traditional way of knowing and talked about how the arts expanded their perspectives, sparked creativity and imagination, freed/transformed emotions, made learning more memorable/more meaningful, infused learning with laughter, created community and broke the silence that often surrounds the topic of cancer in Alaska rural communities. The expressive arts empowered adult learners to explore new dimensions of knowledge, create deeper understandings and expand their perceptions of possibilities. [ABSTRACT FROM AUTHOR] Copyright of International Journal of Lifelong Education is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)


  • Environmental Risk Perceptions and Community Health: Arsenic, Air Pollution, and Threats to Traditional Values of the Hopi Tribe

    Citation: Mayer B, Joshweseoma L, Sehongva G. (2019). Environmental Risk Perceptions and Community Health: Arsenic, Air Pollution, and Threats to Traditional Values of the Hopi Tribe. doi:10.1007/s10900-019-00627-8.

    PMID: 30790123

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    American Indian and Alaska Native populations experience chronic disparities in a wide range of health outcomes, many of which are associated with disproportionate exposures to environmental health hazards. In the American Southwest, many indigenous tribes experience challenges in securing access to sustainable and safe sources of drinking water, limiting air pollution emissions on and off tribal lands, and cleaning up hazardous contaminants left over from a legacy of natural resource extraction. To better understand how households perceive the risk of exposure to potential environmental health risks, we conducted six focus groups organized by age and geographic location on the Hopi reservation. Focus group participants (n?=?41) were asked to reflect on changes in their natural and manmade environment and how their health might be influenced by any potential changes. By investigating these environmental risk perceptions, we were able to identify arsenic in drinking water and indoor air quality as significant exposures of concern. These risk perceptions were frequently anchored in personal and familial experiences with health problems such as cancer and asthma. Older focus group participants identified ongoing shifts away from tradition and cultural practices as increasing environmental health risks. Similar to other communities economically dependent on the extraction of natural resources, focus group participants described the need for behavioral modifications regarding environmental health risks rather than eliminating the sources of potential health risks entirely. Our results suggest the need for including traditional values and practices in future interventions to reduce environmental health risks.


  • Establishing a patient navigator program to reduce cancer disparities in the American Indian communities of Western South Dakota: initial observations and results

    Citation: Petereit, DGM, Kevin Reiner, Mary L. Helbig, Petra Cina, Kristin Miner, Raylene Spotted Tail, Caroline Rost, Catherine Conroy, Patricia Roberts, Chester R. (2008). Establishing a patient navigator program to reduce cancer disparities in the American Indian communities of Western South Dakota: initial observations and results. 15: 254-259.

    PMID: 18596678

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Health Worker, Innovative Technology

    Background: American Indians (AIs) in the Northern Plains region suffer disproportionately high cancer mortality rates compared with the general US population and with AIs from other regions in the United States.; Methods: The National Cancer Institute developed the Cancer Disparity Research Partnership to address these inequities. This initiative in Rapid City, South Dakota, attempts to lower cancer mortality rates for AIs by access to innovative clinical trials, behavioral research, and a genetic study. Patient navigation is a critical part of the program. Two navigation strategies are described: navigators at the cancer center and navigators on each reservation. A retrospective analysis was performed to determine if navigated patients (n = 42) undergoing potentially curative radiotherapy had fewer treatment interruptions compared with nonnavigated patients (n = 74).; Results: A total of 213 AIs with cancer have undergone patient navigation. For those undergoing cancer treatment, the median number of patient navigation interactions was 15 (range 1 to 95), whereas for those seen in follow-up after their cancer treatment, the median number of contacts was 4 (range 1 to 26). AIs who received navigation services during curative radiation treatment had on average 3 fewer days of treatment interruptions compared to AIs who did not receive navigation services during curative radiation treatment (P = .002, N = 116).; Conclusions: Early findings suggest that patient navigation is a critical component in addressing cancer disparities in this population. The program has established trust with individual cancer patients, with the tribal councils, and with the general population on each of the three reservations of western South Dakota.;


  • Establishing trusting partnerships for successful recruitment of American Indians to clinical trials

    Citation: Petereit, DGB, Linda. (2008). Establishing trusting partnerships for successful recruitment of American Indians to clinical trials. 15: 260-268.

    PMID: 18596679

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Background: Cancer mortality rates among American Indians (AIs) in the Northern Plains are among the highest in the nation. Reasons for this disparity are unclear but are probably due to multiple barriers. AIs appear to experience more intense side effects from therapeutic radiation compared with other populations. This differential response to treatment, a disparity in itself, might be overcome if the molecular reasons were better understood.; Methods: The National Cancer Institute developed the Cancer Disparity Research Partnership to address these inequities. This initiative, known as the Walking Forward program, attempts to lower cancer mortality rates for AIs by increasing access to innovative clinical trials, behavioral research, patient navigation, and the ataxia telangiectasia mutated (ATM) gene study. The ATM component of the project was initiated to determine if there is a molecular basis for this apparent differential response to therapeutic radiation. Successful implementation of the genetic study relied on achieving a trusting partnership with AIs since a lack of trust has historically been a barrier to performing research in this population. The authors detail the nature of building partnerships and trust by utilizing lessons learned.; Results: Establishing a trusting partnership between a community hospital and AIs in South Dakota resulted in successful recruitment to this ATM clinical trial. To date, 26 AIs and 40 non-AIs have consented to participate in this ATM analysis. Their shared human desire to assist others, especially family and community members, and their demonstrated responsiveness to community priorities by academic researchers are the primary reasons for participant eagerness to enroll on this study.; Conclusions: The relatively rapid approval of the ATM genetic study by multiple tribal organizations and the successful accrual of AIs on this study reflect the trusting partnerships achieved at the patient and community levels.;


  • Evaluating an Electronic Measure of Colorectal Cancer Screening at Indian Health Service Facilities, 2008-2010

    Citation: Redwood D, Suryaprasad A, Haverkamp D, Wong C, Provost E, Espey D. (2014). Evaluating an Electronic Measure of Colorectal Cancer Screening at Indian Health Service Facilities, 2008-2010.

    PMID: 26273184

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: Colorectal cancer (CRC) is a leading cause of cancer mortality in American Indian and Alaska Native (AIAN) people, and incidence rates vary considerably among AIAN populations throughout the United States. Screening has the potential to prevent CRC deaths by detection and treatment of early disease or removal of precancerous polyps. Surveillance of CRC screening is critical to efforts to improve delivery of this preventive service, but existing CRC screening surveillance methods for AIAN are limited. The Government Performance and Results Act (GPRA) CRC screening clinical care measure provides data on CRC screening among AIAN populations. PURPOSE: The aim of this study was to evaluate the accuracy of the GPRA measure for CRC screening (sensitivity, specificity, positive predictive value and negative predictive value), determine reasons for CRC screening misclassification (procedures noted as screening when they were actually diagnostic exams), and to suggest opportunities for improving surveillance for CRC screening nationwide for AIAN populations. METHODS: Medical record reviews (paper and electronic) were compared to the GPRA-reported CRC screening status for 1,071 patients receiving care at tribal health facilities. A total of 8 tribal health facilities (2 small, 3 medium, and 3 large) participated in the study from the Pacific Coast, the Southwest, the Southern Plains, and Alaska IHS regions. Screening-eligible patients were identified using queries of the local electronic health record from January 2007 to December 2008, and medical chart reviews were completed at participating facilities from September 2008 to June 2010. RESULTS: Among 545 patients classified as screened by the GPRA measure, 305 (56%, CI: 52%-60%) had a false positive for screening as compared with medical record review. The overall sensitivity of the GPRA measure for CRC screening was 93% (CI=89%-95%) while specificity was 62% (CI: 59%-66%). The most common reasons for misclassification were for diagnostic or surveillance tests to be recorded as screening (67%), as well as medical record miscoding (18%) due to miscoding, charting errors, screenings performed outside the IHS, testing for a non-screening purpose, and categorization of patients as screened when a test had been ordered but not actually completed. CONCLUSIONS: This study found that the GPRA CRC screening clinical measure overestimates the true screening rate due to the inclusion of diagnostic and surveillance exams, especially colonoscopy, as well as misclassification errors. The results of this study suggest a need to more accurately use the ICD-9 diagnostic code V76.51, which was associated with frequent coding errors. In combination with other programmatic efforts that focus on screening average- risk, asymptomatic American Indian and Alaska Native persons, improving the coding used for CRC screening may help to more accurately detect decreases in AIAN CRC incidence and mortality.


  • Evaluating Arts-Based Cancer Education Using an Internet Survey among Alaska Community Health Workers

    Citation: Cueva, MC, Katie Dignan, Mark Lanier, Anne Kuhnley, Regina. (2014). Evaluating Arts-Based Cancer Education Using an Internet Survey among Alaska Community Health Workers. 29: 529-535.

    PMID: 24189832

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Arts Program, Community Health Worker

    Cancer, considered a rare disease among Alaska Native people as recently as the 1950s, surpassed heart disease in the 1990s to become the leading cause of mortality. In response to Alaska's village-based Community Health Workers' (CHWs) desire to learn more about cancer for themselves and the people in their communities, cancer education that incorporated the expressive arts of moving, drawing, and sculpting was developed, implemented, and evaluated. Arts-based education integrates the dynamic wisdom and experiences of Alaska Native people and western medical knowledge to share cancer information in a culturally respectful way. Between May 2009 and March 2013, 12 5-day courses that included arts activities to support cancer information were provided for 118 CHWs in Anchorage, AK, USA. A post-course internet survey was conducted in April 2013, to learn how arts-based cancer education affected participants' knowledge, attitudes, and behaviors. Surveys were completed by 54 of the 96 course participants; 22 course participants were lost to follow-up. As a result of integrating the arts with cancer education, respondents reported an increase in their cancer knowledge and comfort with talking about cancer. Additionally, 82 % (44) of respondents described feeling differently about cancer. By integrating the arts with cancer information, participants reported healthy behavior changes for themselves (76 %), with their families (70 %), and in their work (72 %). The expressive arts of moving, drawing, and sculpting provided a creative pathway for diverse adult learners in Alaska to increase their cancer knowledge, comfort with talking about cancer, and wellness behaviors.


  • Evaluating disparities in inpatient surgical cancer care among American Indian/Alaska Native patients

    Citation: Simianu VV, Morris AM, Varghese TK Jr, Porter MP, Henderson JA, Buchwald DS, Flum DR, Javid SH. (2016). Evaluating disparities in inpatient surgical cancer care among American Indian/Alaska Native patients. doi:10.1016/j.amjsurg.2015.10.030.

    PMID: 26846176

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: American Indian/Alaska Native (AI/AN) patients with cancer have the lowest survival rates of all racial and ethnic groups, possibly because they are less likely to receive best practice surgical care than patients of other races. METHODS: Prospective cohort study comparing adherence with generic and cancer-specific guidelines on processes of surgical care between AI/AN and non-Hispanic white (NHW) patients in Washington State (2010 to 2014) was conducted. RESULTS: A total of 156 AI/AN and 6,030 NHW patients underwent operations for 10 different cancers, and had similar mean adherence to generic surgical guidelines (91.5% vs 91.9%, P = .57). AI/AN patients with breast cancer less frequently received preoperative diagnostic core needle biopsy (81% vs 94%, P = .004). AI/AN patients also less frequently received care adherent to prostate cancer-specific guidelines (74% vs 92%, P = .001). CONCLUSION: Although AI/ANs undergoing cancer operations in Washington receive similar overall best practice surgical cancer care to NHW patients, there remain important, modifiable disparities that may contribute to their lower survival. Copyright © 2016 Elsevier Inc. All rights reserved.


  • Evaluating the WEB training program for cancer screening in Native American women

    Citation: Petersen, WOT, Mary A. Fanale, Michelle A. Kaur, Judith S. (2003). Evaluating the WEB training program for cancer screening in Native American women. 17: 262-275.

    PMID: 14596376

    Cancer Sites(s): Breast, Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Training for Health Professionals

    The Native Women Enjoying the Benefit (WEB) program trains nurses to perform breast and cervical cancer screening examinations for Native American women. Several evaluations have shown that the program improves nurses' knowledge and skills, and nurses value its positive impact on clinic, nurse, and patient behaviors. Beyond effectiveness, program longevity often rests upon equilibrium that results from alignment between a program's values and principles with those of its sponsoring organization and pertinent surrounding environments. We examined how Native WEB values align with those of its 2 most relevant environments-the medical institution (immediate environment) that sponsors it and the broader health care context (distal environment). We found that social justice views articulated in Catholic social teaching served as a convenient synthesis of the 2 environments' values and principles. We used this conception of social justice to determine whether the Native WEB program reflected the perspectives of its immediate and distal environments.;


  • Evaluation lessons learned from implementing CBPR in Native American communities

    Citation: Dignan MB, Jones K, Burhansstipanov L, Michalek AM. (2014). Evaluation lessons learned from implementing CBPR in Native American communities. doi:10.1007/s13187-014-0648-4.

    PMID: 24699923

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)


  • Evaluation of a Lay Health Adviser Training for a Community-Based Participatory Research Project in a Native American Community

    Citation: Watts, VMC, Suzanne Streitz, Jana L. McCormick, Alma Knows His Gun. (2005). Evaluation of a Lay Health Adviser Training for a Community-Based Participatory Research Project in a Native American Community [Article]. 29: 59-79.

    PMID: 19072900

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Community Health Worker

    This article presents the evaluation of a lay health adviser training programs with Native American communities and individuals. The overall cancer mortality rate for American Indians is lower than the U.S. all-races rate. However, American Indians experience significantly higher mortality rates for some cancers, and incidence and mortality rates are increasing over time for many cancers. Community-based participatory research directly involves community members and community-based service providers as partners in the research process.


  • Evaluation of a program to train nurses to screen for breast and cervical cancer among Native American women

    Citation: Sellers, TAT, M. A. Vierkant, R. A. Petersen, W. Kottke, T. E. Jensen, A. Kaur, J. S. (2002). Evaluation of a program to train nurses to screen for breast and cervical cancer among Native American women. 17: 24-27.

    PMID: 12000101

    Cancer Sites(s): Breast, Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Training for Health Professionals

    Background. Routine screening for breast and cervical cancers lowers mortality from these diseases, but the benefit has not permeated to Native American women, fur whom the five-year survival rate is the lowest of any population group in the United States. To help address this problem, an educational/training program was designed to enhance the skills of nurses and other health service providers and develop clinic support systems to better recruit, screen, and follow clients for breast and cervical cancer screening services. Methods. A total of 131 nurses participated in the training program at 33 different sites between 1995 and 2000. Prior to and following training, each participant was given a questionnaire to determine knowledge of breast and cervical cancer screening techniques and recommendations, cancer survival and risk factors, and situational scenarios. Results. The average score for the pretest was 54% correct. The posttest average was 89% correct. The percent correct increased 35% from pre- to posttest (P < 0.001). Conclusion. The knowledge to implement a successful screening program can be acquired through the current curriculum.


  • Evaluation of a training program to prepare community health representatives to promote breast and cervix cancer screening among native American women

    Citation: Petersen, WOT, M. A. Sellers, T. A. Nicometo, A. M. Kaur, J. S. (2004). Evaluation of a training program to prepare community health representatives to promote breast and cervix cancer screening among native American women. 19: 237-243.

    PMID: 15725643

    Cancer Sites(s): Breast, Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Health Worker

    Background. Native American women have very poor 5-year breast and cervix cancer survival rates compared to other US population groups. We evaluated a training program that prepares community health representatives (CHRs) to promote prevention and early detection of these diseases. Two questions guided the evaluation: (1) Are CHRs an appropriate focus of training? and (2) Does training empower CHRs and, indirectly, their facilities to educate about breast and cervix cancer, promote screening, and teach breast self-exam skills to American Indian and Alaska Native women? Methods. Twenty CHRs (3 Indian Health Service regions, 9 separate employers) responded to a telephone survey consisting of Likert scale and multiple option and short-answer questions. Analysis relied on descriptive statistics and measures of central tendency. Results. By tenure, cultural and community membership, and ability to adapt to audience needs and setting demands, CHRs make appropriate training recipients. Training improves skills and their use and appears to increase employers' reliance on CHRs for screening promotion and education about cancer. Posttraining, more women hear and heed the screening message. Conclusions. CHRs are an appropriate focus of training. Training leads to increased screening-related activities and should be continued and expanded.


  • Evaluation of Cancer 101: An Educational Program for Native Settings

    Citation: Hill, TGB, Katherine Josa Bowen, Deborah Boerner, Verne Vu, Thuy Lopez, Kerri Vinson, Eric. (2010). Evaluation of Cancer 101: An Educational Program for Native Settings. 25: 329-336.

    PMID: 20146041

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection, Prevention, Survivorship, Treatment, Diagnosis

    Intervention Site(s): Unknown

    Intervention Type(s): Health Education and Promotion

    This community-based intervention study examines the impact of Cancer 101, a cancer education resource developed in collaboration with American Indians/Alaska Natives to improve cancer knowledge, action regarding cancer control in tribal settings, and survival rates for members of their communities. Pre/post-surveys used to assess knowledge, attitudes, perceived benefits and future activities at baseline, immediately post-training, and at 4-6 months. Participants demonstrated significant change in knowledge, attitude, and cancer control activities. Cancer 101 provides a critical pathway to increase knowledge and promote action to reduce the burden and improve survival of cancer within tribal communities.


  • Factors that influence mammography use among older American Indian and Alaska Native women

    Citation: James RD, Gold DE, St John-BlackBird A, Brown Trinidad S. (2015). Factors that influence mammography use among older American Indian and Alaska Native women. doi:10.1177/1043659614523994.

    PMID: 24626283

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    INTRODUCTION: American Indian and Alaska Native (AIAN) women have relatively high breast cancer mortality rates despite the availability of free or low-cost screening. PURPOSE: This qualitative study explored issues that influence the participation of older AIAN women in mammography screening through tribally directed National Breast and Cervical Cancer Early Detection Programs (NBCCEDPs). METHODS: We interviewed staff (n = 12) representing five tribal NBCCEDPs and conducted four focus groups with AIAN women ages 50 to 80 years (n = 33). RESULTS: Our analysis identified four main areas of factors that predispose, enable, or reinforce decisions around mammography: financial issues and personal investments, program characteristics including direct services and education, access issues such as transportation, and comfort zone topics that include cultural or community-wide norms regarding cancer prevention. CONCLUSION: This study has implications for nurse education and training on delivering effective mammography services and preventive cancer outreach and education programs in AIAN communities. © The Author(s) 2014.


  • Feasibility of a tobacco cessation intervention for pregnant Alaska Native women

    Citation: Patten, CAW, Richard A. Renner, Caroline C. Enoch, Carrie Hochreiter, Angela Nevak, Caroline Smith, Christina A. Decker, Paul A. Bonnema, Sarah Hughes, Christine A. Brockman, Tabetha. (2010). Feasibility of a tobacco cessation intervention for pregnant Alaska Native women. 12: 79-87.

    PMID: 20018946

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Unknown

    Intervention Type(s): Health Education and Promotion

    Background: Among Alaska Native women residing in the Yukon-Kuskokwim (Y-K) Delta region of Western Alaska, about 79% smoke cigarettes or use smokeless tobacco during pregnancy. Treatment methods developed and evaluated among Alaska Native pregnant tobacco users do not exist. This pilot study used a randomized two-group design to assess the feasibility and acceptability of a targeted cessation intervention for Alaska Native pregnant women. Methods: Recruitment occurred over an 8-month period. Enrolled participants were randomly assigned to the control group (n = 18; brief face-to-face counseling at the first visit and written materials) or to the intervention group (n - 17) consisting of face-to-face counseling at the first visit, four telephone calls, a video highlighting personal stories, and a cessation guide. Interview-based assessments were conducted at baseline and follow-up during pregnancy (>= 60 days postrandomization). Feasibility was determined by the recruitment and retention rates. Results: The participation rate was very low with only 12% of eligible women (35/293) enrolled. Among enrolled participants, the study retention rates were high in both the intervention (71%) and control (94%) groups. The biochemically confirmed abstinence rates at follow-up were 0% and 6% for the intervention and control groups, respectively. Discussion: The low enrollment rate suggests that the program was not feasible or acceptable. Alternative approaches are needed to improve the reach and efficacy of cessation interventions for Alaska Native women.


  • Findings from American Indian Needs Assessments

    Citation: Burhansstipanov L, Krebs LU, Harjo L, Ragan K, Kaur JS, Marsh V, Painter D Sr. (2018). Findings from American Indian Needs Assessments. doi:10.1007/s13187-016-1159-2.

    PMID: 28214933

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection, Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Because of decreased access and dismal survival rates, strategies need to be developed to increase cancer awareness and facilitate cancer prevention, early detection, and screening activities within American Indian (AI) populations. The purpose of this study was to develop a locally tailored needs assessment to collect cancer prevention, control, and risk factor information and knowledge, attitude, and perceived behavior (hereafter referred to as needs assessment) data from 500 community members living in 3 geographically diverse settings: the Southeastern USA, the Rocky Mountain region, and the Northern Plains. Needs assessment data helped identify local health priorities and create a pilot cancer prevention and early detection education intervention. There were two versions of common items of the instrument: short (~35 items) and long (55 items), and each partner added items that were recommended by their local AI Advisory Committee. Each partner collaborated with local AI organizations to identify and recruit participants at community venues. During the sessions, facilitators used Power Point® slides and ARS equipment and software to anonymously collect participants' responses. The partners collected needs assessment data from 677 community members over a 4-year period. Cancer education knowledge was low, barriers to accessing timely cancer screening and care services were excessive, tobacco use was excessive, and daily physical activity was insufficient for most participants. ARS was an effective way to collect needs assessment information. During discussions following the data collection, community members requested more cancer education opportunities, access to patient navigation services, and cultural competency training for healthcare providers.


  • Findings from the Native Navigators and The Cancer Continuum (NNACC) Study

    Citation: Burhansstipanov, LK, Linda U. Dignan, Mark B. Jones, Kate Harjo, Lisa D. Watanabe-Galloway, Shinobu Petereit, Daniel G. Pingatore, Noel L. Isham, Debra. (2014). Findings from the Native Navigators and The Cancer Continuum (NNACC) Study. 29: 420-427.

    PMID: 25053462

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection, Prevention, Survivorship, Treatment, Diagnosis

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Health Education and Promotion

    Native Navigators and the Cancer Continuum (NNACC) was a community based participatory research study among Native American Cancer Research Corporation, CO; Inter-Tribal Council of Michigan, MI; Rapid City Regional Hospital's Walking Forward, SD; Great Plains Tribal Chairman's' Health Board, SD; and Muscogee (Creek) Nation, OK. The project goal was to collaborate, refine, expand, and adapt navigator/community education programs to address American Indian communities' and patients' needs across the continuum of cancer care (prevention through end-of-life). The intervention consisted of four to six site-specific education workshop series at all five sites. Each series encompassed 24 h of community education. The Social Ecology Theory guided intervention development; community members from each site helped refine education materials. Following extensive education, Native Patient Navigators (NPNs) implemented the workshops, referred participants to cancer screenings, helped participants access local programs and resources, and assisted those with cancer to access quality cancer care in a timely manner. The intervention was highly successful; 1,964 community participants took part. Participants were primarily American Indians (83 %), female (70 %) and between 18 and 95 years of age. The education programs increased community knowledge by 28 %, facilitated referral to local services, and, through site-specific navigation services, improved access to care for 77 participants diagnosed with cancer during the intervention. Approximately, 90 % of participants evaluated workshop content as useful and 92.3 % said they would recommend the workshop to others. The intervention successfully increased community members' knowledge and raised the visibility of the NPNs in all five sites.


  • First nations people's perspectives on barriers and supports for enhancing HPV vaccination: Foundations for sustainable, community-driven strategies

    Citation: Henderson RI, Shea-Budgell M, Healy C, Letendre A, Bill L, Healy B, Bednarczyk RA, Mrklas K, Barnabe C, Guichon J, Bedingfield N, MacDonald S, Colquhoun A, Glaze S, Nash T, Bell C, Kellner J, Richardson R, Dixon T, Starlight J, Runner G, Nelson G. (2018). First nations people's perspectives on barriers and supports for enhancing HPV vaccination: Foundations for sustainable, community-driven strategies. doi:10.1016/j.ygyno.2017.12.024.

    PMID: 29605057

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVE: In Canada, Indigenous people have higher human papillomavirus (HPV) infection rates, lower screening rates for cervical cancer, and higher rates of invasive cancer, leading to worse cervical cancer-related outcomes than observed in non-Indigenous Canadian women. Lingering harms from European colonization drive these health inequities and create public health challenges. Policy guidance is needed to optimize HPV vaccination rates and, thereby, decrease the burden of HPV-related illness, including high-morbidity surgical procedures and chemo-radiotherapy. The Enhancing HPV Vaccination In First Nations Populations in Alberta (EHVINA) project focuses on First Nations, a diverse subset of recognized Indigenous people in Canada, and seeks to increase HPV vaccination among girls and boys living in First Nation communities. METHODS: Developing an effective strategy requires partnership with affected communities to better understand knowledge and perceptions about cancer, healthcare, and the HPV vaccine. A 2017 community gathering was convened to engage First Nations community members, health directors, and health services researchers in dialogue around unique barriers and supports to HPV vaccination in Alberta. Voices of community Elders, parents, health directors, and cancer survivors (n=24) are presented as qualitative evidence to help inform intervention design. RESULTS: Key findings from discussions indicate barriers to HPV vaccination include resource constraints and service infrastructure gaps, historical mistrust in healthcare systems, impacts of changing modes of communication, and community sensitivities regarding sexual health promotion. Supports were identified as strengthened inter-generational relationships in communities. CONCLUSIONS AND FUTURE DIRECTION: Ongoing dialogue and co-development of community-based strategies to increase HPV vaccine uptake are required. The identification of possible barriers to HPV vaccination in a Canadian Indigenous population contributes to limited global literature on this subject and may inform researchers and policy makers who work with Indigenous populations in other regions.


  • First Nations, Inuit, and Metis Women's Experiences of Cancer Survivorship: Protocol for the National Picture Project

    Citation: Thomas, RG, Wendy Poudrier, Jennifer Hamilton, Ryan Brooks, Carolyn Scott, Tracy Morrison, Tricia Warner, Doris Hammond, Chad. (2015). First Nations, Inuit, and Metis Women's Experiences of Cancer Survivorship: Protocol for the National Picture Project. 14.

    PMID:

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Arts Program, Support Group

    Little is known about First Nations, Inuit, and Metis (FNIM) women's experiences with cancer, including how they relate to cultural and social factors such as geography, history, racism, identity, traditional values/practices, and spirituality. Research into FNIM women's strengths and challenges in relation to cancer is much needed. Our team, in partnership with Saint Elizabeth Health, is documenting the experiences and needs of 60 FNIM cancer survivors across Canada, using sharing sessions, photography (photovoice), journaling, and film. We will evaluate the impact of photography and journaling on the participants to assist with the future development of supportive programs and health-care delivery. This innovative research will result in a video, which will address gaps in knowledge and care. The video will then be screened in several communities and will be publicly available. In future projects, the findings and video will be used in supportive programs for cancer survivors and in educational initiatives for health professionals.


  • Food Insecurity among American Indians and Alaska Natives: A National Profile using the Current Population Survey-Food Security Supplement

    Citation: Jernigan VBB, Huyser KR, Valdes J, Simonds VW. (2017). Food Insecurity among American Indians and Alaska Natives: A National Profile using the Current Population Survey-Food Security Supplement. doi:10.1080/19320248.2016.1227750.

    PMID: 28491205

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Food insecurity increases the risk for obesity, diabetes, hypertension, and cancer-conditions highly prevalent among American Indians and Alaska Natives (AI/ANs). Using the Current Population Survey Food Security Supplement, we analyzed the food insecurity trends of AI/ANs compared to other racial and ethnic groups in the United States from 2000 to 2010. From 2000 to 2010, 25% of AI/ANs remained consistently food insecure and AI/ANs were twice as likely to be food insecure compared to whites. Urban AI/ANs were more likely to experience food insecurity than rural AI/ANs. Our findings highlight the need for national and tribal policies that expand food assistance programs; promote and support increased access to healthy foods and community food security, in both rural and urban areas; and reduce the burden of diet-related disparities on low-income and racial/ethnic minority populations.


  • Food Security and Diet Among American Indians in the Midwest

    Citation: Berryhill K, Hale J, Chase B, Clark L, He J, Daley CM. (2018). Food Security and Diet Among American Indians in the Midwest. doi:10.1007/s10900-018-0501-5.

    PMID: 29623570

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    The purpose of this study was to determine levels of food security among American Indians (AI) living in the Midwest and possible correlations between food security levels and various health outcomes, diet, and demographic variables. This study used a cross-sectional design to determine health behaviors among AI. Participants (n?=?362) were recruited by AI staff through various cultural community events in the Midwest, such as powwows and health fairs. Inclusion criteria included the following: age 18 years or older, self-identify as an AI, and willing to participate in the survey. Of all participants, 210 (58%) had either low or very low food security, with 96 in the very low category (26.5%). Participants with very low food security tended to have significantly more chronic conditions. Additional significant differences for very low food security existed by demographic variables, including having no insurance (p?


  • Formative Evaluation to Assess Communication Technology Access and Health Communication Preferences of Alaska Native People

    Citation: Robinson RF, Dillard DA, Hiratsuka VY, Smith JJ, Tierney S, Avey JP, Buchwald DS. Abstract. (2015). Formative Evaluation to Assess Communication Technology Access and Health Communication Preferences of Alaska Native People.

    PMID: 27169131

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Based Participatory Research (CBPR), Innovative Technology

    OBJECTIVE: Information technology can improve the quality, safety, and efficiency of healthcare delivery by improving provider and patient access to health information. We conducted a nonrandomized, cross-sectional, self-report survey to determine whether Alaska Native and American Indian (AN/AI) people have access to the health communication technologies available through a patient-centered medical home. METHODS: In 2011, we administered a self-report survey in an urban, tribally owned and operated primary care center serving AN/AI adults. Patients in the center's waiting rooms completed the survey on paper; center staff completed it electronically. RESULTS: Approximately 98% (n = 654) of respondents reported computer access, 97% (n = 650) email access, and 94% (n = 631) mobile phone use. Among mobile phone users, 60% had Internet access through their phones. Rates of computer access (p = .011) and email use (p = .005) were higher among women than men, but we found no significant gender difference in mobile phone access to the Internet or text messaging. Respondents in the oldest age category (65-80 years of age) were significantly less likely to anticipate using the Internet to schedule appointments, refill medications, or communicate with their health care providers (all p < .001). CONCLUSION: Information on use of health communication technologies enables administrators to deploy these technologies more efficiently to address health concerns in AN/AI communities. Our results will drive future research on health communication for chronic disease screening and health management.


  • From survivorship to thrivership: Native peoples weaving a healthy life from cancer

    Citation: Weiner, DB, L. Krebs, L. U. Restivo, T. (2005). From survivorship to thrivership: Native peoples weaving a healthy life from cancer. 20: 28-32.

    PMID: 15916517

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Support Group

    Background. In this commentary, we describe culturally specific cancer support and education programs that have been successfully adapted for use with both urban and reservation-based California Indian communities. Methods. The Native American Cancer Survivor Support Circles were initiated in Los Angeles County in 2000 and were tailored for specific use with reservation-based communities in 2002. Support circles include culturally respectful ground rules, prayers, and culturally specific education topics (spirituality, coping with chemotherapy) and psychosocial support as well. Results and Conclusions. Evaluation showed that both Native men and women had greater confidence in their abilities to cope with their healing and recovery from cancer following participation.


  • Gallbladder Cancer Incidence and Mortality, United States 1999-2011

    Citation: Henley SJ, Weir HK, Jim MA, Watson M, Richardson LC. (2015). Gallbladder Cancer Incidence and Mortality, United States 1999-2011. doi:10.1158/1055-9965.EPI-15-0199.

    PMID: 26070529

    Cancer Sites(s): Gallbladder

    Cancer Continuum(s): Diagnosis

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Gallbladder cancer is a rare cancer with unusual distribution, and few population-based estimates for the United States have been published. METHODS: Using population-based cancer incidence and mortality data, we examined U.S. gallbladder cancer incidence and death rates for 2007-2011 and trends for 1999-2011. RESULTS: During 2007 to 2011, approximately 3,700 persons were diagnosed with primary gallbladder cancer (rate = 1.13 cases per 100,000) and 2,000 died from the disease (rate = 0.62 deaths per 100,000) each year in the United States. Two thirds of gallbladder cancer cases and deaths occurred among women. Gallbladder cancer incidence and death rates were three times higher among American Indian and Alaska Native persons than non-Hispanic white persons. By state, gallbladder cancer incidence and death rates ranged by about 2-fold. During 1999 to 2011, gallbladder cancer incidence rates decreased among women but remained level among men; death rates declined among women but stabilized among men after declining from 1999 to 2006. Gallbladder cancer incidence rates increased in some subgroups, notably among black persons, those aged <45 years, and for endocrine tumors. CONCLUSIONS: Data from U.S. population-based cancer registries confirm that gallbladder cancer incidence and death rates are higher among women than men, highest among American Indian and Alaska Native persons, and differ by region. While overall incidence and death rates decreased during 1999 to 2011, incidence rates increased among some small subgroups. IMPACT: Surveillance of gallbladder cancer incidence and mortality, particularly to monitor increases in subgroups, may provide clues to etiology and stimulate further research. ©2015 American Association for Cancer Research.


  • Gallbladder cancer: review of a rare orphan gastrointestinal cancer with a focus on populations of New Mexico

    Citation: Nemunaitis JM, Brown-Glabeman U, Soares H, Belmonte J, Liem B, Nir I, Phuoc V, Gullapalli RR. (2018). Gallbladder cancer: review of a rare orphan gastrointestinal cancer with a focus on populations of New Mexico. doi:10.1186/s12885-018-4575-3.

    PMID: 29914418

    Cancer Sites(s): Gallbladder

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Gallbladder cancer is a rare malignancy of the biliary tract with a poor prognosis, frequently presenting at an advanced stage. While rare in the United States overall, gallbladder cancer has an elevated incidence in geographically distinct locations of the globe including Chile, North India, Korea, Japan and the state of New Mexico in the United States. People with Native American ancestry have a much elevated incidence of gallbladder cancer compared to Hispanic and non-Hispanic white populations of New Mexico. Gallbladder cancer is also one of the few bi-gendered cancers with an elevated female incidence compared to men. Similar to other gastrointestinal cancers, gallbladder cancer etiology is likely multi-factorial involving a combination of genomic, immunological, and environmental factors. Understanding the interplay of these unique epidemiological factors is crucial in improving the prevention, early detection, and treatment of this lethal disease. Previous studies have failed to identify a distinct genomic mutational profile in gallbladder cancers, however, work to identify promising clinically actionable targets is this form of cancer is ongoing. Examples include, interest in the HER2/Neu signaling pathway and the recognition that chronic inflammation plays a crucial role in gallbladder cancer pathogenesis. In this review, we provide a comprehensive overview of gallbladder cancer epidemiology, risk factors, pathogenesis, and treatment with a specific focus on the rural and Native American populations of New Mexico. We conclude this review by discussing future research directions with the goal of improving clinical outcomes for patients of this lethal malignancy.


  • Gardening for Health: Patterns of Gardening and Fruit and Vegetable Consumption Among the Navajo

    Citation: Ornelas IJ, Osterbauer K, Woo L, Bishop SK, Deschenie D, Beresford SAA, Lombard K. (2018). Gardening for Health: Patterns of Gardening and Fruit and Vegetable Consumption Among the Navajo. doi:10.1007/s10900-018-0521-1.

    PMID: 29779075

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    American Indians, including Navajo, are disproportionately affected by obesity and diabetes, in part due to diet-related health behaviors. The purpose of this study was to assess the patterns of gardening and fruit and vegetable (FV) consumption among residents in two communities on the Navajo Nation in order to inform a community gardening intervention. We analyzed survey data collected from participants in the Yéego Gardening study conducted in two communities in the Navajo Nation (N?=?169). We found that 51% of the sample gardened, and on average participants gardened 8.9 times per month. Lack of time (53%) and financial barriers, such as gas for transportation or irrigation (51 and 49%, respectively), were reported as barriers to gardening. Most participants reported low levels of self-efficacy (80%) and behavioral capability (82%) related to gardening. Those with higher levels of gardening self-efficacy and behavioral capability reported more frequent gardening. Average daily FV consumption was 2.5 servings. Most participants reported high levels of self-efficacy to eat FV daily (64%) and high behavioral capability to prepare FV (66%). There was a positive association between FV consumption and gardening, with those gardening more than 4 times per month eating about 1 more serving of FV per day than those gardening 4 or fewer times per month. Further research is needed to better understand how gardening can increase fruit and vegetable availability and consumption among residents of the Navajo Nation.


  • Gastric cancer in Alaska Native people: A cancer health disparity

    Citation: Martinson HA, Shelby NJ, Alberts SR, Olnes MJ. (2018). Gastric cancer in Alaska Native people: A cancer health disparity. doi:10.3748/wjg.v24.i25.2722.

    PMID: 29991877

    Cancer Sites(s): Gastric

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    AIM: To evaluate recent trends in gastric cancer incidence, response to treatment, and overall survival among Alaska Native (AN) people. METHODS: A retrospective analysis of the Alaska Native Medical Center patient database was performed. Patient history, clinical, pathological, response to treatment and patient outcomes were collected from one-hundred and thirty-two AN gastric cancer patients. The Surveillance, Epidemiology and End Result database 18 was used to collect comparison United States non-Hispanic White (NHW) and AN gastric cancer patient data between 2006-2014. RESULTS: AN gastric cancer patients have a higher incidence rate, a poorer overall survival, and are diagnosed at a significantly younger age compared to NHW patients. AN patients differ from NHW patients in greater prevalence of non-cardia, diffuse subtype, and signet ring cell carcinomas. AN females were more likely to be diagnosed with later stage cancer, stage IV, compared to AN males. Diminished overall survival was observed among AN patients with increasing stage, O+ blood type, < 15 lymph nodes examined at resection, and no treatment. This study is the first report detailing the clinicopathologic features of gastric cancer in AN people with outcome data. CONCLUSION: Our findings confirm the importance of early detection, treatment, and surgical resection for optimizing AN patient outcomes. Further research on early detection markers are warranted.


  • Geographic variation in colorectal cancer incidence and mortality, age of onset, and stage at diagnosis among American Indian and Alaska Native people, 1990-2009

    Citation: Perdue DG, Haverkamp D, Perkins C, Daley CM, Provost E. (2014). Geographic variation in colorectal cancer incidence and mortality, age of onset, and stage at diagnosis among American Indian and Alaska Native people, 1990-2009. doi:10.2105/AJPH.2013.301654.

    PMID: 24754657

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We characterized estimates of colorectal cancer (CRC) in American Indians/Alaska Natives (AI/ANs) compared with Whites using a linkage methodology to improve AI/AN classification in incidence and mortality data. METHODS: We linked incidence and mortality data to Indian Health Service enrollment records. Our analyses were restricted to Contract Health Services Delivery Area counties. We analyzed death and incidence rates of CRC for AI/AN persons and Whites by 6 regions from 1999 to 2009. Trends were described using linear modeling. RESULTS: The AI/AN colorectal cancer incidence was 21% higher and mortality 39% higher than in Whites. Although incidence and mortality significantly declined among Whites, AI/AN incidence did not change significantly, and mortality declined only in the Northern Plains. AI/AN persons had a higher incidence of CRC than Whites in all ages and were more often diagnosed with late stage CRC than Whites. CONCLUSIONS: Compared with Whites, AI/AN individuals in many regions had a higher burden of CRC and stable or increasing CRC mortality. An understanding of the factors driving these regional disparities could offer critical insights for prevention and control programs.


  • Geographic variations in access and utilization of cancer screening services: examining disparities among American Indian and Alaska Native Elders

    Citation: Towne SD Jr, Smith ML, Ory MG. (2014). Geographic variations in access and utilization of cancer screening services: examining disparities among American Indian and Alaska Native Elders. doi:10.1186/1476-072X-13-18.

    PMID: 24913150

    Cancer Sites(s): Breast, Colorectal

    Cancer Continuum(s): Detection, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Despite recommendations for cancer screening for breast and colorectal cancer among the Medicare population, preventive screenings rates are often lower among vulnerable populations such as the small but rapidly growing older American Indian and Alaska Native (AIAN) population. This study seeks to identify potential disparities in the availability of screening services, distance to care, and the utilization of cancer screening services for Medicare beneficiaries residing in areas with a higher concentration of AIAN populations. METHODS: Using the county (n =3,225) as the level of analysis, we conducted a cross-sectional analysis of RTI International's Spatial Impact Factor Data (2012) to determine the level of disparities for AIAN individuals. The outcomes of interest include: the presence of health care facilities in the county, the average distance in miles to the closest provider of mammography and colonoscopy (analyzed separately) and utilization of screening services (percent of adults aged 65 and older screened by county). RESULTS: Counties with higher concentrations of AIAN individuals had greater disparities in access and utilization of cancer screening services. Even after adjusting for income, education, state of residence, population 65 and older and rurality, areas with higher levels of AIAN individuals were more likely to see disparities with regard to health care services related to mammograms (p ? .05; longer distance, lower screening) and colonoscopies (p ? .05; longer distance, lower screening). CONCLUSIONS: These findings provide evidence of a gap in service availability, utilization and access facing areas with higher levels of AIAN individuals throughout the US. Without adequate resources in place, these areas will continue to have less access to services and poorer health which will be accelerated as the population of older adults grows.


  • Growing from Our Roots: Strategies for Developing Culturally Grounded Health Promotion Interventions in American Indian, Alaska Native, and Native Hawaiian Communities

    Citation: Walters KL, Johnson-Jennings M, Stroud S, Rasmus S, Charles B, John S, Allen J, Kaholokula JK, Look MA, de Silva M, Lowe J, Baldwin JA, Lawrence G, Brooks J, Noonan CW, Belcourt A, Quintana E, Semmens EO, Boulafentis J. (2018). Growing from Our Roots: Strategies for Developing Culturally Grounded Health Promotion Interventions in American Indian, Alaska Native, and Native Hawaiian Communities. doi:10.1007/s11121-018-0952-z.

    PMID: 30397737

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention, Methods

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Given the paucity of empirically based health promotion interventions designed by and for American Indian, Alaska Native, and Native Hawaiian (i.e., Native) communities, researchers and partnering communities have had to rely on the adaptation of evidence-based interventions (EBIs) designed for non-Native populations, a decidedly sub-optimal approach. Native communities have called for development of Indigenous health promotion programs in which their cultural worldviews and protocols are prioritized in the design, development, testing, and implementation. There is limited information regarding how Native communities and scholars have successfully collaborated to design and implement culturally based prevention efforts from the ground up. Drawing on five diverse community-based Native health intervention studies, we describe strategies for designing and implementing culturally grounded models of health promotion developed in partnership with Native communities. Additionally, we highlight indigenist worldviews and protocols that undergird Native health interventions with an emphasis on the incorporation of (1) original instructions, (2) relational restoration, (3) narrative-[em]bodied transformation, and (4) indigenist community-based participatory research (ICBPR) processes. Finally, we demonstrate how culturally grounded interventions can improve population health when they prioritize local Indigenous knowledge and health-positive messages for individual to multi-level community interventions.


  • Guideline-concordant cancer care and survival among American Indian/Alaskan Native patients

    Citation: Javid SH, Varghese TK, Morris AM, Porter MP, He H, Buchwald D, Flum DR. (2014). Guideline-concordant cancer care and survival among American Indian/Alaskan Native patients. doi:10.1002/cncr.28683.

    PMID: 24711210

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship, Treatment, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: American Indians/Alaskan Natives (AI/ANs) have the worst 5-year cancer survival of all racial/ethnic groups in the United States. Causes for this disparity are unknown. The authors of this report examined the receipt of cancer treatment among AI/AN patients compared with white patients. METHODS: This was a retrospective cohort study of 338,204 patients who were diagnosed at age ?65 years with breast, colon, lung, or prostate cancer between 1996 and 2005 in the Surveillance, Epidemiology, and End Results-Medicare database. Nationally accepted guidelines for surgical and adjuvant therapy and surveillance were selected as metrics of optimal, guideline-concordant care. Treatment analyses compared AI/ANs with matched whites. RESULTS: Across cancer types, AI/ANs were less likely to receive optimal cancer treatment and were less likely to undergo surgery (P ? .025 for all cancers). Adjuvant therapy rates were significantly lower for AI/AN patients with breast cancer (P < .001) and colon cancer (P = .001). Rates of post-treatment surveillance also were lower among AI/ANs and were statistically significantly lower for AI/AN patients with breast cancer (P = .002) and prostate cancer (P < .001). Nonreceipt of optimal cancer treatment was associated with significantly worse survival across cancer types. Disease-specific survival for those who did not undergo surgery was significantly lower for patients with breast cancer (hazard ratio [HR], 0.62), colon cancer (HR, 0.74), prostate cancer (HR, 0.52), and lung cancer (HR, 0.36). Survival rates also were significantly lower for those patients who did not receive adjuvant therapy for breast cancer (HR, 0.56), colon cancer (HR, 0.59), or prostate cancer (HR, 0.81; all 95% confidence intervals were <1.0). CONCLUSIONS: Fewer AI/AN patients than white patients received guideline-concordant cancer treatment across the 4 most common cancers. Efforts to explain these differences are critical to improving cancer care and survival for AI/AN patients. © 2014 American Cancer Society.


  • Healing pathways: art therapy for American Indian cancer survivors

    Citation: Warson, E. (2012). Healing pathways: art therapy for American Indian cancer survivors. 27: S47-S56.

    PMID: 22311692

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Arts Program

    There is a paucity of research addressing quality of life factors for American Indian and Alaska Native cancer survivors. Complementary forms of therapy, such as art therapy, are beginning to address quality of life factors through the 'healing' arts for cancer survivors. The purpose of this mixed methods pilot was to explore the effects of culturally relevant art interventions on stress reduction for American Indian cancer survivors and their family members. Forty-six adult participants attended one of three workshops held within two settlements of the Coharie tribe and one southeastern urban tribal center. The data collected consisted of a pretest and posttest State-Trait Personality Inventory (STPI) and artwork resulting from three directed interventions. The artwork was analyzed using qualitative coding methods; however, the scores from the STPI were inconclusive because the inventory was determined to be culturally biased. While statistical significance was not achieved, the findings from qualitative coding reinforced a native concept of wellness focusing on the complex interaction between mind, body, spirit, and context. This pilot study also demonstrated how a community-driven approach was instrumental in the development of the overall workshop format. An expansion of the pilot study is also presented with preliminary results available in 2012.;


  • Health behaviors and risk factors among American Indians and Alaska Natives, 2000-2010

    Citation: Cobb N, Espey D, King J. (2014). Health behaviors and risk factors among American Indians and Alaska Natives, 2000-2010. doi:10.2105/AJPH.2014.301879.

    PMID: 24754662

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVES: We provided contextual risk factor information for a special supplement on causes of death among American Indians and Alaska Natives (AI/ANs). We analyzed 11 years of Behavioral Risk Factor Surveillance System (BRFSS) data for AI/AN respondents in the United States. METHODS: We combined BRFSS data from 2000 to 2010 to determine the prevalence of selected risk factors for AI/AN and White respondents residing in Indian Health Service Contract Health Service Delivery Area counties. Regional prevalence estimates for AI/AN respondents were compared with the estimates for White respondents for all regions combined; respondents of Hispanic origin were excluded. RESULTS: With some regional exceptions, AI/AN people had high prevalence estimates of tobacco use, obesity, and physical inactivity, and low prevalence estimates of fruit and vegetable consumption, cancer screening, and seatbelt use. CONCLUSIONS: These behavioral risk factors were consistent with observed patterns of mortality and chronic disease among AI/AN persons. All are amenable to public health intervention.


  • Health education to increase screening for cervical cancer among Lumbee Indian Women in North Carolina

    Citation: Dignan, MBM, R. Wells, H. B. Sharp, P. Blinson, K. Case, L. D. Bell, R. Konen, J. Davis, S. McQuellon, R. P. (1998). Health education to increase screening for cervical cancer among Lumbee Indian Women in North Carolina. 13: 545-556.

    PMID: 10345905

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Home

    Intervention Type(s): Community Health Worker, Health Education and Promotion

    Although age-adjusted mortality rates from cancer among Native-Americans are generally lower than for the US population as a whole, cervical cancer mortality rates are higher, This report presents results from a National Cancer Institute-funded health education program conducted among the Lumbee tribe in North Carolina that was designed to increase the proportion of women, age 18 and older, who receive Pap smears to screen for cervical cancer, The Solomon Four Group research design was used for this project. Participants were selected at random from the enrollment records of the Lumbee tribe and data collection was carried out during face-to-face interviews. The health education program was provided one-on-one in women's homes by a trained lay health educator and included verbal, print and videotape information, A total of 979 women were enrolled in the study, and 125 were lost to follow-up between the pre-test and post-test. Women who received the education program were found to be more likely to have knowledge of the Pap smear and to report a Pap smear in the past year at the post-test than those in the control group, regardless of whether they received the pre-test interview, P < 0.05. Women most likely to respond to the education program were also likely to have reported that they receive an annual physical examination, Women with better knowledge of the Pap smear tended to have more education, higher income and greater identification with Native-American culture than those with less knowledge. We conclude that the health education program was associated with greater knowledge about cervical cancer prevention and higher proportions of Lumbee women obtaining Pap smears in the past year.


  • Health Promotion in Cervical Cancer Prevention Among the Yakama Indian Women of the Wa'Shat Longhouse

    Citation: Strickland, CJS, Marion Dick Chrisman, Noel J. (1999). Health Promotion in Cervical Cancer Prevention Among the Yakama Indian Women of the Wa'Shat Longhouse [Article]. 10: 190.

    PMID: 4595613

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    Focuses on a study which examined the importance of the Wa'Shat Longhouse religion to the design of a culturally approprate cervical cancer prevention program with the Yakama Indian people of eastern Washington. Prevalence of cervical cancer among American Indians; Methodology; Discussion and implications.


  • Health Sciences cultural safety education in Australia, Canada, New Zealand, and the United States: a literature review

    Citation: Kurtz DLM, Janke R, Vinek J, Wells T, Hutchinson P, Froste A. (2018). Health Sciences cultural safety education in Australia, Canada, New Zealand, and the United States: a literature review. doi:10.5116/ijme.5bc7.21e2.

    PMID: 30368488

    Cancer Sites(s): N/A

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: To review the research literature on cultural safety education within post-secondary health science programs. METHODS: We conducted health and social science database searches from 1996-2016, using combined keywords: cultural competence or safety; teaching or curriculum; universities, polytechnics or professional programs; and Aboriginal or Indigenous. In dyads, authors selected, and reviewed studies independently followed by discussion and consensus to identify thematic linkages of major findings. RESULTS: A total of 1583 abstracts and 122 full-text articles were reviewed with 40 selected for final inclusion. Publications from Australia, Canada, New Zealand and the United States described curriculum development and delivery. A variety of evaluation approaches were used including anecdotal reports, focus groups, interviews, course evaluations, reflective journals, pre-post surveys, critical reflective papers, and exam questions. Duration and depth of curricular exposure ranged from one day to integration across a six-year program. Changes in student knowledge, attitude, self-confidence, and behaviour when working with Indigenous populations were reported. Cultural safety education and application to practice were shown to be linked to improved relationships, healthier outcomes, and increased number of Indigenous people entering health education programs and graduates interested in working in diverse communities. CONCLUSIONS: This review provides a summary of multidisciplinary didactic and experiential instructional approaches to cultural safety education and the impact on students, educators and Indigenous people. Institutional support, strategic planning and cultural safety curriculum policy within post-secondary settings and community engagement are imperative for positive student experiences, advocacy, and actions toward health equity and improved health for Indigenous people and communities.


  • Healthcare barriers and supports for American Indian women with cancer

    Citation: Liddell JL, Burnette CE, Roh S, Lee YS. (2018). Healthcare barriers and supports for American Indian women with cancer. doi:10.1080/00981389.2018.1474837.

    PMID: 29775173

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Although American Indian (AI) women continue to experience cancer at higher rates and have not seen the same decline in cancer prevalence as the general U.S. population, little research examines how interactions with health care providers may influence and exacerbate these health disparities. The purpose of the study was to understand the experiences of AI women who receive cancer treatment, which is integral for eradication of AI cancer disparities among women. A qualitative descriptive methodology was used with a sample of 43 AI women with breast, cervical, colon, and other types of cancer from the Northern Plains region of South Dakota. Interviews were conducted from June 2014 to February 2015. Qualitative content analysis revealed that women experienced: (a) health concerns being ignored or overlooked; (b) lack of consistent and qualified providers; (c) inadequate healthcare infrastructure; (d) sub-optimal patient-healthcare provider relationships; (e) positive experiences with healthcare providers; and (f) pressure and misinformation about treatment. Results indicate the types of support AI women may need when accessing healthcare. Culturally informed trainings for healthcare professionals may be needed to provide high-quality and sensitive care for AI women who have cancer, and to support those providers already providing proper care.


  • Healthy gardens/healthy lives: Navajo perceptions of growing food locally to prevent diabetes and cancer

    Citation: Lombard KA, Beresford SA, Ornelas IJ, Topaha C, Becenti T, Thomas D, Vela JG. (2014). Healthy gardens/healthy lives: Navajo perceptions of growing food locally to prevent diabetes and cancer. doi:10.1177/1524839913492328.

    PMID: 23855020

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Health Education and Promotion

    Poor access to nutritious foods, departure from traditional diets, and reduced physical activity are associated with a rise in type 2 diabetes and certain types of cancers among the Navajo. Diabetes in particular is of concern because of its increased prevalence among Navajo youth. Gardening can successfully address issues of poor availability of fruits and vegetables and offer many other social and health benefits. Our assessment aimed to determine Navajo attitudes about gardening and health in San Juan County, New Mexico. We conducted seven focus groups (including 31 people) to assess knowledge and attitudes related to gardening and uncover barriers and facilitators to participation in a garden project. Each group session was moderated by two Navajo students. Transcripts revealed that many Navajo are aware of adverse health issues that occur on the reservation, predominantly obesity and diabetes. Participants expressed a preference for educational approaches that incorporated cultural traditions, respect for elders, use of visual aids, and experiential learning. Several social and agronomic barriers to gardening were also mentioned. Results suggested a broad interest in promoting gardening especially to reduce the risk of diabetes with the added value of enhancing social capital in Navajo communities.


  • How can an Education Workshop Serve as an Intervention for American Indian Screening Participation

    Citation: Burhansstipanov L, Harjo L, Kaur JS. (2017). How can an Education Workshop Serve as an Intervention for American Indian Screening Participation. doi:10.1007/s13187-017-1289-1.

    PMID: 29159787

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection, Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion, Screening Program

    American Indians (AIs) continue to have elevated cancer incidence and mortality, and most have issues accessing cancer screening services. During 2013-2014, Mayo and its partners created Native Cancer 101 Module 10 Prevention and Early Cancer Detection education workshop. A community-based AI organization implemented nine of these workshops during 2014-2015 via diverse venues. Nearly all participants eligible for at least one type of cancer screening participated in a workshop and consented to follow-up within 3 to 6 months to determine if screenings had been completed or scheduled. Native Cancer 101 Module 10 workshops were conducted with 150 community members of whom 6 had recently completed cancer screening (n = 144). The workshops had a 25.20% increase in knowledge, and 97.1% of subjects responded that they would recommend the workshop to their friends and family. Most (136 of 144) submitted a consent form to be contacted 3 to 6 months following the workshop. Patient navigators reached 86 (63.2%) of the consented participants in the follow-up calls after the workshop, and 63 (46.3%) self-reported that they had completed at least one cancer screening test for which they were eligible. The single implementation of the workshop influenced community participants' completion of cancer screening.


  • Human Papillomavirus Prevalence Among American Indian Women of the Great Plains

    Citation: Lee NR, Winer RL, Cherne S, Noonan CJ, Nelson L, Gonzales AA, Umans JG, Buchwald D. (2019). Human Papillomavirus Prevalence Among American Indian Women of the Great Plains. doi:10.1093/infdis/jiy600.

    PMID: 30321371

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: High-risk human papillomavirus (hrHPV) causes cervical cancer. In the United States, approximately 40% of women aged 14-59 years from all racial and ethnic groups are infected with HPV, and prevalence typically declines with age. However, American Indian (AI) women are insufficiently sampled to permit a population-specific estimate of hrHPV prevalence. METHODS: Vaginal swabs were self-collected by 698 AI women aged 21-65 years from a tribal community in the Great Plains. We estimated the population prevalence of hrHPV and identified predominant genotypes. RESULTS: The combined prevalence of hrHPV genotypes 16, 18, 31, 33, 35, 39, 45, 51, 52, 56, 58, 59, 66, and 68 was 34.8%. HPV-51 (7.6%), HPV-58 (5.3%), HPV-52 (4.3%), HPV-18 (4.3%), and HPV-16 (3.9%) were most prevalent. hrHPV prevalence declined with age, from 42.2% in women aged 21-24 years to 27.9% in women aged 50-65 years. CONCLUSIONS: HPV-51 was the single most prevalent oncogenic genotype. The combined prevalence of hrHPV among AI women in our sample was high, particularly among women aged 50-65 years, for whom hrHPV prevalence was approximately triple that of other races. Cervical cancer screening efforts should be increased, particularly among women from the community aged 30 years and older. © The Author(s) 2018. Published by Oxford University Press for the Infectious Diseases Society of America. All rights reserved. For permissions, e-mail: journals.permissions@oup.com.


  • Human Papillomavirus Vaccination Trends, Barriers, and Promotion Methods Among American Indian/Alaska Native and Non-Hispanic White Adolescents in Michigan 2006-2015

    Citation: Kashani BM, Tibbits M, Potter RC, Gofin R, Westman L, Watanabe-Galloway S. (2019). Human Papillomavirus Vaccination Trends, Barriers, and Promotion Methods Among American Indian/Alaska Native and Non-Hispanic White Adolescents in Michigan 2006-2015. doi:10.1007/s10900-018-00615-4.

    PMID: 30661151

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Human papillomavirus (HPV) infection, the most common sexually transmitted disease in the US, is a preventable cause of cancer. HPV vaccination has the potential to prevent 90% of HPV-related cancer cases but is underutilized, especially among American Indian/Alaska Native (AI/AN) adolescents. The objectives of this study were to (1) describe trends and identify predictors of HPV vaccination initiation and completion in Michigan's AI and Non-Hispanic White children age 9 through 18 years and (2) to identify barriers to HPV vaccination and promotion methods at the tribal, state, and local levels in Michigan. Data from Michigan's immunization information system from 2006 to 2015 were used for analysis. Additionally, semi-structured interviews were conducted with public health professionals across the state to identify barriers to and promoters of HPV vaccination. Predictors for vaccine initiation included being female, AI/AN, and living in high poverty zip code. Predictors of vaccine completion were female gender and younger age at vaccine initiation. Barriers to vaccination included misinformation and weak or inconsistent provider recommendations. Strategies used by health professionals to promote HPV vaccination included immunization summaries, vaccine information statements, the Vaccines for Children (VFC) program, and provider training. Findings suggested the need for education of parents to demystify HPV vaccine benefits and risks and provider training for more consistent recommendations.


  • Identifying risk and protective factors related to depressive symptoms among Northern Plains American Indian women cancer survivors

    Citation: Roh S PhD, Burnette CE PhD, Lee YS PhD, Giger JT PhD, Goins RT, Petereit DG MD, FASTRO, Lawler MJ PhD, Lee KH MSW, PhD. (2018). Identifying risk and protective factors related to depressive symptoms among Northern Plains American Indian women cancer survivors. doi:10.1080/03630242.2018.1544965.

    PMID: 30481139

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Cancer is the leading cause of death among American Indian and Alaska Native (AIAN) women, and depressive symptoms have been linked to higher mortality, but research on depressive symptoms among AIAN cancer patients has been scant. The purpose of this exploratory study was, using the Framework of Historical Oppression, Resilience, and Transcendence, to examine risk and protective factors related to depressive symptoms in American Indian (AI) women cancer survivors. We examined the relationships of adverse childhood experiences (ACE), perceived health status, resilience, and social support with depressive symptoms in Northern Plains AI women cancer survivors. We used a cross-sectional design with purposive sampling of 73 female cancer survivors (aged 18 years or older) between June 2014 and February 2015. Hierarchical multiple regression was used to test three sets of variables in relation to depressive symptoms: (1) sociodemographics, (2) risk factors (ACE and perceived health), and (3) protective factors (psychological resilience and social support). Approximately 47 percent of participants had probable depressive symptoms. Depressive symptoms were inversely associated with perceived health, psychological resilience, and social support. These results support bolstering existing social support among AI cancer patients and survivors as well as prevention and intervention efforts that strengthen resilience.


  • 'Imi Hale -- the Native Hawaiian cancer awareness, research, and training network: second-year status report

    Citation: Braun, KLT, JoAnn Santos, Lorrie Ann Abrigo, Lehua. (2003). 'Imi Hale -- the Native Hawaiian cancer awareness, research, and training network: second-year status report. 10: 4-16.

    PMID: 15352771

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    Purpose: The purpose of this paper is to describe 'Imi Hale, a program developed and managed by Native Hawaiians to increase cancer awareness and research capacity among Native Hawaiians. This US subgroup of indigenous people of the Hawaiian islands has disproportionately high rates of cancer mortality and low rates of participation in health and research careers.; Methods: As a community-based research project, 'Imi Hale spent its first year gathering data from Native Hawaiians about their cancer awareness and research priorities. These findings guide 'Imi Hale's community and scientific advisors, a community-based Institutional Review Board, Na Liko Noelo (budding researchers), and staff in developing and carrying out projects that address these priority areas. Emphasis is placed on transferring skills and resources to Native Hawaiians through training, technical assistance, and mentorship. A biennial survey assesses the extent to which community-based participatory research principles are being followed.; Principal Findings: By the end of the school year, statewide and island-specific awareness plans were produced, and 9 funded awareness projects are supporting the development and dissemination of Hawaiian health education materials. Research accomplishments include the enrollment of 42 Native Hawaiian Na Liko Noelo (budding researchers), 22 of which are involved in 14 funded research projects. The biennial evaluation survey found that 92% of our advisors felt that 'Imi Hale was promoting scientifically rigorous research that was culturally appropriate and respectful of Native Hawaiian beliefs, and 96% felt that 'Imi Hale was following its own principles of community-based participatory research.; Conclusion: 'Imi Hale's community-based approach to promoting cancer awareness will result in a sustainable infrastructure for reducing the cancer burden on Native Hawaiians.;


  • 'Imi Hale: establishing an inheritance for Native Hawaiians on cancer awareness, research and training

    Citation: Santos, LM, N. Abrigo, L. Braun, K. L. Tsark, J. U. Mackura, G. Kuhaulua, R. Chong, C. D. (2001). 'Imi Hale: establishing an inheritance for Native Hawaiians on cancer awareness, research and training. 8: 436-445.

    PMID: 12180528

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion, Training for Health Professionals

    Native Hawaiians experience disproportionate rates of cancer incidence and mortality both nationally and in their homeland, Hawai'i. 'Imi Hale--the Native Hawaiian Cancer Awareness, Research, and Training Project, a five-year project funded by the National Cancer Institute, is aimed at reducing the burden of cancer among Native Hawaiians. The project's overall goal is to reduce cancer incidence and mortality among Native Hawaiians through the establishment of a sustainable infrastructure to 1) promote cancer awareness within Native Hawaiian communities, and 2) initiate cancer research, training, and control activities. A community-based project, 'Imi Hale emphasizes community participation, respect for cultural values, and the sharing of information, as we believe that a commitment to involve Native Hawaiians in all activities of the project will help assure that the community's awareness, training, and research priorities are addressed. In the first year of operation, cancer awareness activities included the development of culturally sensitive booklets on breast cancer and the provision of cancer education and screening for members of the Association of the Hawaiian Civic Clubs. Research and training activities included focus groups to explore the perceptions and experiences of cancer survivors, surveys to assess research priorities, the identification of Native Hawaiian researchers and the development of pilot research projects. The work of 'Imi Hale is guided by the hope that Native Hawaiians can reverse the negative effects of cancer and leave a powerful legacy and inheritance for future generations based on good health and well-being. 'Imi Hale means- to establish, as a dynasty; to acquire authority, power; to seek and establish an inheritance for one's children; and to form a friendship so close that one feels welcome in the house of the other. By using our language for a name, we are invoking and honoring our ancestors, our culture, language and restoration as a nation.;


  • Improved access to women's health services for Alaska natives through community health aide training

    Citation: Sox, CHD, A. J. Goldman, D. C. Provost, E. M. (1999). Improved access to women's health services for Alaska natives through community health aide training. 24: 313-323.

    PMID: 10463474

    Cancer Sites(s): Breast, Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Health Worker, Training for Health Professionals

    This project demonstrates the effect of increasing the skills of Community Health Aides (CHAs) on the use of specific preventive health services by women in remote Alaska villages. Eight CHAs were trained in specimen collection for Pap and sexually transmitted disease testing, and in clinical breast examination. Skill competency was monitored. Computerized medical records of all women between the ages of 18 and 75 in the four villages with trained CHAs and in four comparison villages (n = 1093) were checked for Pap status prior to CHA training and again 12 months later. All eight CHAs achieved competency and provided services in their village clinics with telephone support from an experienced clinician. The post-training year Pap test rate of women who were overdue for a Pap test was 0.44 in the villages with trained CHAs; the rate among the women in the comparison villages was 0.32 (p = .079).


  • Improving cancer care for American Indians with cervical cancer in the Indian Health Service (IHS) system - Navigation may not be enough

    Citation: Dockery LE, Motwani A, Ding K, Doescher M, Dvorak JD, Moore KN, Holman LL. (2018). Improving cancer care for American Indians with cervical cancer in the Indian Health Service (IHS) system - Navigation may not be enough. doi:10.1016/j.ygyno.2017.10.023.

    PMID: 29605056

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Treatment

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVES: Patient navigation programs have been shown to positively impact cancer outcomes for minority populations. Little is known regarding the effects of these programs on American Indian (AI) populations. The purpose of this study is to characterize the impact of a patient navigation program on AI cervical cancer patients at a tertiary care center. METHODS: A retrospective review of all AI cervical cancer patients receiving navigation services and a cohort of AI patients treated prior to navigation services was performed. Additional comparisons were made between those with and without Indian Health Service (IHS) funding. Summary statistics were used to describe demographic, clinical characteristics, treatment, and survivorship across groups. RESULTS: Of 55 patients identified, 34 received navigation and 21 did not. In navigated patients, median age was 46years (27-80years) compared with 42years (17-68years) in pre-navigation patients (p=0.53). There was no difference between stage at diagnosis (p=0.73). No difference was noted in treatment received between groups (p=0.48). Distance traveled for treatment between groups did not differ (p=0.46). Median time to initiation of treatment was not different between groups, 30.5days vs. 27.5days (p=0.18). Among patients with IHS funding, navigation services did not alter time to initiation of treatment (p=0.57), and there was no difference in completion of prescribed therapy between groups (92% navigated vs 100% pre-navigation). CONCLUSIONS: Navigation services for AI cervical cancer patients did not alter initiation or completion of treatment. Navigation programs may provide less tangible benefits to AI cervical cancer patients and further study is warranted.


  • Improving cancer control in First Nations, Inuit and Métis Communities in Canada

    Citation: Beben N, Muirhead A. (2016). Improving cancer control in First Nations, Inuit and Métis Communities in Canada. doi:10.1111/ecc.12479.

    PMID: 26918685

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): N/A

    Intervention Type(s): N/A


  • Incidence of primary liver cancer in American Indians and Alaska Natives, US, 1999-2009

    Citation: Melkonian SC, Jim MA, Reilley B, Erdrich J, Berkowitz Z, Wiggins CL, Haverkamp D, White MC. (2018). Incidence of primary liver cancer in American Indians and Alaska Natives, US, 1999-2009. doi:10.1007/s10552-018-1059-3.

    PMID: 30030669

    Cancer Sites(s): Liver

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    PURPOSE: To evaluate liver cancer incidence rates and risk factor correlations in non-Hispanic AI/AN populations for the years 1999-2009. METHODS: We linked data from 51 central cancer registries with the Indian Health Service patient registration databases to improve identification of the AI/AN population. Analyses were restricted to non-Hispanic persons living in Contract Health Service Delivery Area counties. We compared age-adjusted liver cancer incidence rates (per 100,000) for AI/AN to white populations using rate ratios. Annual percent changes (APCs) and trends were estimated using joinpoint regression analyses. We evaluated correlations between regional liver cancer incidence rates and risk factors using Pearson correlation coefficients. RESULTS: AI/AN persons had higher liver cancer incidence rates than whites overall (11.5 versus 4.8, RR?=?2.4, 95% CI 2.3-2.6). Rate ratios ranged from 1.6 (Southwest) to 3.4 (Northern Plains and Alaska). We observed an increasing trend among AI/AN persons (APC 1999-2009?=?5%). Rates of distant disease were higher in the AI/AN versus white population for all regions except Alaska. Alcohol use (r?=?0.84) and obesity (r?=?0.79) were correlated with liver cancer incidence by region. CONCLUSIONS: Findings highlight disparities in liver cancer incidence between AI/AN and white populations and emphasize opportunities to decrease liver cancer risk factor prevalence.


  • Indian Health Service Care System and Cancer Stage in American Indians and Alaska Natives

    Citation: Burnett-Hartman AN, Adams SV, Bansal A, McDougall JA, Cohen SA, Karnopp A, Warren-Mears V, Ramsey SD. (2018). Indian Health Service Care System and Cancer Stage in American Indians and Alaska Natives. doi:10.1353/hpu.2018.0017.

    PMID: 29503298

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): Health-Care System

    Intervention Type(s): N/A

    PURPOSE: We aimed to determine whether the association between late-stage cancer and American Indian/Alaska Native (AI/AN) race differed by enrollment in the Indian Health Service Care System (IHSCS). METHODS: We used Surveillance, Epidemiology, and End Results (SEER) data linked to Medicare files to compare the odds of late-stage breast, colorectal, lung, or prostate cancer between non-Hispanic Whites (NHWs) (n=285,993) and AI/ANs with (n=581) and without (n=543) IHSCS enrollment. RESULTS: For AI/ANs without IHSCS enrollment, the odds of late-stage disease were higher in AI/ANs compared with NHWs for breast (OR=3.17, 95%CI: 1.82-5.53) and for prostate (OR=2.59, 95%CI:1.55-4.32) cancer, but not for colorectal or lung cancers. Among AI/ANs with IHSCS enrollment, there was not a significant association between late-stage disease and AI/AN race for any of the four cancers evaluated. CONCLUSION: Our results suggest that enrollment in the IHSCS reduced the disparity between AI/ANs and NHWs with respect to late-stage cancer diagnoses.


  • Indigenous Elder Insights About Conventional Care Services in Alaska: Culturally Charged Spaces

    Citation: Balestrery JE. (2016). Indigenous Elder Insights About Conventional Care Services in Alaska: Culturally Charged Spaces. doi:10.1080/01634372.2016.1206649.

    PMID: 27359337

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Indigenous peoples around the world endure health and social disparities. In the United States, such disparities are typically ameliorated through conventional care services and organizations. PURPOSE: To examine points of tension that characterize culturally pluralistic care services in the United States, specifically Alaska, within context of Indigenous colonial histories. DESIGN AND METHODS: The research design is ethnographic and multisited, comprising 12 months of fieldwork across urban, rural and remote village sites in Alaska. A conceptual lens that accounts for culturally diverse social spaces where relations of power are at stake frames research presented here. This work incorporates relational and participatory action research principles with Alaska Native Elders. Ethnographic evidence was collected through multiple methods, including field notes, documents, and interviews, with ethnographic analysis involving atlas.ti. FINDINGS: Alaska Native Elders describe salient points of tension characterizing Alaska's conventional care services through the following insights: generational curses--a pain, prejudice on both sides-wounded, and value-systems clash-fighting. CONCLUSION: This article concludes with discussion about collective anxieties and implications for care services.


  • Infection With Hepatitis C Virus Genotype 3 Is an Independent Risk Factor for End-Stage Liver Disease, Hepatocellular Carcinoma, and Liver-Related Death

    Citation: McMahon BJ, Bruden D, Townshend-Bulson L, Simons B, Spradling P, Livingston S, Gove J, Hewitt A, Plotnik J, Homan C, Espera H, Negus S, Snowball M, Barbour Y, Bruce M, Gounder P. (2017). Infection With Hepatitis C Virus Genotype 3 Is an Independent Risk Factor for End-Stage Liver Disease, Hepatocellular Carcinoma, and Liver-Related Death. doi:10.1016/j.cgh.2016.10.012.

    PMID: 27765729

    Cancer Sites(s): Liver

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND & AIMS: Few studies have examined factors associated with disease progression in hepatitis C virus (HCV) infection. We examined the association of 11 risk factors with adverse outcomes in a population-based prospective cohort observational study of Alaska Native/American Indian persons with chronic HCV infection. METHODS: We collected data from a population-based cohort study of liver-related adverse outcomes of infection in American Indian/Alaska Native persons with chronic HCV living in Alaska, recruited from 1995 through 2012. We calculated adjusted hazard ratios (aHR) and 95% confidence intervals (CIs) for end-stage liver disease (ESLD; presence of ascites, esophageal varices, hepatic encephalopathy, or coagulopathy), hepatocellular carcinoma (HCC), and liver-related death using a Cox proportional hazards model. RESULTS: We enrolled 1080 participants followed up for 11,171 person-years (mean, 10.3 person-years); 66%, 19%, and 14% were infected with HCV genotypes 1, 2, and 3, respectively. On multivariate analysis, persons infected with HCV genotype 3 had a significantly increased risk of developing all 3 adverse outcomes. Their aHR for ESLD was 2.1 (95% CI, 1.5-3.0), their aHR for HCC was 3.1 (95% CI, 1.4-6.6), and their aHR for liver-related death was 2.4 (95% CI, 1.5-4.0) compared with genotype 1. Heavy alcohol use was an age-adjusted risk factor for ESLD (aHR, 2.2; 95% CI, 1.6-3.2), and liver-related death (aHR, 2.9; 95% CI, 1.8-4.6). Obesity was a risk factor for ESLD (aHR, 1.4; 95% CI, 1.0-1.9), and diabetes was a risk factor for ESLD (aHR, 1.5; 95% CI, 1.1-2.2). Male sex was a risk factor for HCC (aHR, 3.6; 95% CI, 1.6-8.2). CONCLUSIONS: In a population-based cohort study of American Indian/Alaska Native persons with chronic HCV infection, we found those infected with HCV genotype 3 to be at high risk for ESLD, HCC, and liver-related death. Copyright © 2017 AGA Institute. Published by Elsevier Inc. All rights reserved.


  • Inferior survival among Aboriginal children with cancer in Ontario

    Citation: Marjerrison S, Pole JD, Sung L. (2014). Inferior survival among Aboriginal children with cancer in Ontario. doi:10.1002/cncr.28762.

    PMID: 24824592

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship, Surveillance

    Intervention Site(s): Health-Care System

    Intervention Type(s): N/A

    BACKGROUND: Pediatric cancer distribution and outcomes have not been examined in Canadian Aboriginal children. The objective of this study was to describe the distribution, event-free survival, and overall survival of Aboriginal children with malignancies who reside in Ontario compared with non-Aboriginal children. METHODS: This population-based study included 10,520 Ontario children (aged <18 years) who were diagnosed with cancer between 1985 and 2011. Patients were identified from the Pediatric Oncology Group of Ontario Networked Information System database. Aboriginal children were identified by self-reported ethnicity or postal code on a Native reserve at diagnosis. Descriptive statistics of the patients were presented and compared using the Fisher exact test. Event-free and overall survival probabilities were calculated for Aboriginal and non-Aboriginal children, described using Kaplan-Meier curves, and compared using log-rank tests. RESULTS: In total, 65 Aboriginal children and 10,364 non-Aboriginal children with malignancy were identified. The distribution of malignancy type was similar between the 2 groups. There were no significant differences in baseline characteristics, presence of metastatic disease, or treatment approach (clinical trial, standard of care, or individualized protocol) between the groups. The 5e-year event-free survival rate (± standard error) was 56.3%?±?6.2% among Aboriginal children versus 72.8%?±?0.4% among non-Aboriginal children (P?=?.0042), and the 5-year overall survival rate was 64%?±?6.0% versus 79.3?±?0.4% (P?=?.0017), respectively. The cause of death did not vary according to Aboriginal ethnicity. CONCLUSIONS: Survival was significantly inferior among Aboriginal children who had cancer compared with non-Aboriginal children who had cancer in Ontario. Future studies are required to define the etiology of this disparity, evaluate the issue nationally, and create interventions to improve outcomes for Aboriginal children. © 2014 American Cancer Society.


  • Influences and Practices in Colorectal Cancer Screening Among Health Care Providers Serving Northern Plains American Indians, 2011-2012

    Citation: Nadeau M, Walaszek A, Perdue DG, Rhodes KL, Haverkamp D, Forster J. (2016). Influences and Practices in Colorectal Cancer Screening Among Health Care Providers Serving Northern Plains American Indians, 2011-2012. doi:10.5888/pcd13.160267.

    PMID: 27978410

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    INTRODUCTION: The epidemiology of colorectal cancer, including incidence, mortality, age of onset, stage of diagnosis, and screening, varies regionally among American Indians. The objective of the Improving Northern Plains American Indian Colorectal Cancer Screening study was to improve understanding of colorectal cancer screening among health care providers serving Northern Plains American Indians. METHODS: Data were collected, in person, from a sample of 145 health care providers at 27 health clinics across the Northern Plains from May 2011 through September 2012. Participants completed a 32-question, self-administered assessment designed to assess provider practices, screening perceptions, and knowledge. RESULTS: The proportion of providers who ordered or performed at least 1 colorectal cancer screening test for an asymptomatic, average-risk patient in the previous month was 95.9% (139 of 145). Of these 139 providers, 97.1% ordered colonoscopies, 12.9% ordered flexible sigmoidoscopies, 73.4% ordered 3-card, guaiac-based, fecal occult blood tests, and 21.6% ordered fecal immunochemical tests. Nearly two-thirds (64.7%) reported performing in-office guaiac-based fecal occult blood tests using digital rectal examination specimens. Providers who reported receiving a formal update on colorectal cancer screening during the previous 24 months were more likely to screen using digital rectal exam specimens than providers who had received a formal update on colorectal cancer screening more than 24 months prior (73.9% vs 56.9%, respectively, ?2 = 4.29, P = .04). CONCLUSION: Despite recommendations cautioning against the use of digital rectal examination specimens for colorectal cancer screening, the practice is common among providers serving Northern Plains American Indian populations. Accurate up-to-date, ongoing education for patients, the community, and health care providers is needed.


  • Insights in Public Health: Community Involvement in Developing a Human Papillomavirus (HPV) Vaccine Brochure Made for Parents in Hawai'i

    Citation: Cruz MR, Tsark JA, Soon R, Albright CL, Braun KL. (2016). Insights in Public Health: Community Involvement in Developing a Human Papillomavirus (HPV) Vaccine Brochure Made for Parents in Hawai'i.

    PMID:

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)


  • Internet-Based Delivery of Evidence-Based Health Promotion Programs Among American Indian and Alaska Native Youth: A Case Study

    Citation: Markham CM, Craig Rushing S, Jessen C, Gorman G, Torres J, Lambert WE, Prokhorov AV, Miller L, Allums-Featherston K, Addy RC, Peskin MF, Shegog R. (2016). Internet-Based Delivery of Evidence-Based Health Promotion Programs Among American Indian and Alaska Native Youth: A Case Study. doi:10.2196/resprot.6017.

    PMID: 27872037

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion, Innovative Technology

    BACKGROUND: American Indian and Alaska Native (AI/AN) youth face multiple health challenges compared to other racial/ethnic groups, which could potentially be ameliorated by the dissemination of evidence-based adolescent health promotion programs. Previous studies have indicated that limited trained personnel, cultural barriers, and geographic isolation may hinder the reach and implementation of evidence-based health promotion programs among AI/AN youth. Although Internet access is variable in AI/AN communities across the United States, it is swiftly and steadily improving, and it may provide a viable strategy to disseminate evidence-based health promotion programs to this underserved population. OBJECTIVE: We explored the potential of using the Internet to disseminate evidence-based health promotion programs on multiple health topics to AI/AN youth living in diverse communities across 3 geographically dispersed regions of the United States. Specifically, we assessed the Internet's potential to increase the reach and implementation of evidence-based health promotion programs for AI/AN youth, and to engage AI/AN youth. METHODS: This randomized controlled trial was conducted in 25 participating sites in Alaska, Arizona, and the Pacific Northwest. Predominantly AI/AN youth, aged 12-14 years, accessed 6 evidence-based health promotion programs delivered via the Internet, which focused on sexual health, hearing loss, alcohol use, tobacco use, drug use, and nutrition and physical activity. Adult site coordinators completed computer-based education inventory surveys, connectivity and bandwidth testing to assess parameters related to program reach (computer access, connectivity, and bandwidth), and implementation logs to assess barriers to implementation (program errors and delivery issues). We assessed youths' perceptions of program engagement via ratings on ease of use, understandability, credibility, likeability, perceived impact, and motivational appeal, using previously established measures. RESULTS: Sites had sufficient computer access and Internet connectivity to implement the 6 programs with adequate fidelity; however, variable bandwidth (ranging from 0.24 to 93.5 megabits per second; mean 25.6) and technical issues led some sites to access programs via back-up modalities (eg, uploading the programs from a Universal Serial Bus drive). The number of youth providing engagement ratings varied by program (n=40-191; 48-60% female, 85-90% self-identified AI/AN). Across programs, youth rated the programs as easy to use (68-91%), trustworthy (61-89%), likeable (59-87%), and impactful (63-91%). Most youth understood the words in the programs (60-83%), although some needed hints to complete the programs (16-49%). Overall, 37-66% of the participants would recommend the programs to a classmate, and 62-87% found the programs enjoyable when compared to other school lessons. CONCLUSIONS: Findings demonstrate the potential of the Internet to enhance the reach and implementation of evidence-based health promotion programs, and to engage AI/AN youth. Provision of back-up modalities is recommended to address possible connectivity or technical issues. The dissemination of Internet-based health promotion programs may be a promising strategy to address health disparities for this underserved population. TRIAL REGISTRATION: Clinicaltrials.gov NCT01303575; https://clinicaltrials.gov/ct2/show/NCT01303575 (Archived by WebCite at http://www.webcitation.org/6m7DO4g7c). ©Christine M Markham, Stephanie Craig Rushing, Cornelia Jessen, Gwenda Gorman, Jennifer Torres, William E Lambert, Alexander V Prokhorov, Leslie Miller, Kelly Allums-Featherston, Robert C Addy, Melissa F Peskin, Ross Shegog. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 21.11.2016.


  • Ka Lokahi Wahine: a culturally based training for health professionals

    Citation: Hughes, CKH, Paula. (2004). Ka Lokahi Wahine: a culturally based training for health professionals. 11: 166-169.

    PMID: 16281695

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Training for Health Professionals

    Native Hawaiian women in Hawai'i suffer the highest breast cancer incidence and death rates among women from Hawai'i's five major ethnic groups. Native Hawaiian women have the third highest breast cancer mortality rate in the nation, following African American and Native American/Alaska Native women. While overall cancer mortality rates in other U.S. populations have improved, epidemiological research shows mortality rates among Native Hawaiians has dramatically increased since 1976. Several barriers prevent Native Hawaiian entry into health care. Frequently cited barriers are: a history of oppression; high prevalence of behavioral risk factors; ineffective screening, prevention and treatment efforts; poor utilization of existing services; poor financial and geographical access to care; an absence of culturally appropriate programs, and few Native Hawaiian health professionals. To address poor health service utilization and to sensitize the health care system in Hawai'i, the Native Hawaiian Breast Cancer Sub-Committee (NHBCSC) of the American Cancer Society Hawai'i Pacific, developed and implemented a culturally based training for health professionals. The training is designed to meet continuing medical and professional education requirements. Professional in-service training began in 2001, with over 300 of Hawai'i's health care professionals participating, to date (March 2004). This training provides a model for other cultural and ethnic groups.;


  • Kidney cancer incidence and mortality among American Indians and Alaska Natives in the United States, 1990-2009

    Citation: Li J, Weir HK, Jim MA, King SM, Wilson R, Master VA. (2014). Kidney cancer incidence and mortality among American Indians and Alaska Natives in the United States, 1990-2009. doi:10.2105/AJPH.2013.301616.

    PMID: 24754655

    Cancer Sites(s): Kidney

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We describe rates and trends in kidney cancer incidence and mortality and identify disparities between American Indian/Alaska Native (AI/AN) and White populations. METHODS: To improve identification of AI/AN race, incidence and mortality data were linked with Indian Health Service (IHS) patient records. Analysis focused on residents of IHS Contract Health Service Delivery Area counties; Hispanics were excluded. We calculated age-adjusted kidney cancer incidence (2001-2009) and death rates (1990-2009) by sex, age, and IHS region. RESULTS: AI/AN persons have a 1.6 times higher kidney cancer incidence and a 1.9 times higher kidney cancer death rate than Whites. Despite a significant decline in kidney cancer death rates for Whites (annual percentage change [APC]?=?-0.3; 95% confidence interval [CI]?=?-0.5, 0.0), death rates for AI/AN persons remained stable (APC = 0.4; 95% CI = -0.7, 1.5). Kidney cancer incidence rates rose more rapidly for AI/AN persons (APC = 3.5; 95% CI = 1.2, 5.8) than for Whites (APC = 2.1; 95% CI = 1.4, 2.8). CONCLUSIONS: AI/AN individuals have greater risk of developing and dying of kidney cancers. Incidence rates have increased faster in AI/AN populations than in Whites. Death rates have decreased slightly in Whites but remained stable in AI/AN populations. Racial disparities in kidney cancer are widening.


  • Knowledge and screening of head and neck cancer among American Indians in South Dakota

    Citation: Dwojak S, Deschler D, Sargent M, Emerick K, Guadagnolo BA, Petereit D. (2015). Knowledge and screening of head and neck cancer among American Indians in South Dakota. doi:10.2105/AJPH.2014.302177.

    PMID: 25320895

    Cancer Sites(s): Head and Neck

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Screening Program

    OBJECTIVES: We established the level of awareness of risk factors and early symptoms of head and neck cancer among American Indians in South Dakota and determined whether head and neck cancer screening detected clinical findings in this population. METHODS: We used the European About Face survey. We added questions about human papillomavirus, a risk factor for head and neck cancer, and demographics. Surveys were administered at 2 public events in 2011. Participants could partake in a head and neck cancer screening at the time of survey administration. RESULTS: Of the 205 American Indians who completed the survey, 114 participated in the screening. Mean head and neck cancer knowledge scores were 26 out of 44. Level of education was the only factor that predicted higher head and neck cancer knowledge (b?=?0.90; P?=?.01). Nine (8%) people had positive head and neck cancer screening examination results. All abnormal clinical findings were in current or past smokers (P?=?.06). CONCLUSIONS: There are gaps in American Indian knowledge of head and neck cancer risk factors and symptoms. Community-based head and neck cancer screening in this population is feasible and may be a way to identify early abnormal clinical findings in smokers.


  • Leading causes of death and all-cause mortality in American Indians and Alaska Natives

    Citation: Espey DK, Jim MA, Cobb N, Bartholomew M, Becker T, Haverkamp D, Plescia M. (2014). Leading causes of death and all-cause mortality in American Indians and Alaska Natives. doi:10.2105/AJPH.2013.301798.

    PMID: 24754554

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We present regional patterns and trends in all-cause mortality and leading causes of death in American Indians and Alaska Natives (AI/ANs). METHODS: US National Death Index records were linked with Indian Health Service (IHS) registration records to identify AI/AN deaths misclassified as non-AI/AN. We analyzed temporal trends for 1990 to 2009 and comparisons between non-Hispanic AI/AN and non-Hispanic White persons by geographic region for 1999 to 2009. Results focus on IHS Contract Health Service Delivery Area counties in which less race misclassification occurs. RESULTS: From 1990 to 2009 AI/AN persons did not experience the significant decreases in all-cause mortality seen for Whites. For 1999 to 2009 the all-cause death rate in CHSDA counties for AI/AN persons was 46% more than that for Whites. Death rates for AI/AN persons varied as much as 50% among regions. Except for heart disease and cancer, subsequent ranking of specific causes of death differed considerably between AI/AN and White persons. CONCLUSIONS: AI/AN populations continue to experience much higher death rates than Whites. Patterns of mortality are strongly influenced by the high incidence of diabetes, smoking prevalence, problem drinking, and social determinants. Much of the observed excess mortality can be addressed through known public health interventions.


  • Learning About Cancer Has Brightened My Light: Cancer Education for Alaska Community Health Aides and Community Health Practitioners (CHA/Ps)

    Citation: Kuhnley, RC, Melany. (2011). Learning About Cancer Has Brightened My Light: Cancer Education for Alaska Community Health Aides and Community Health Practitioners (CHA/Ps). 26: 522-529.

    PMID: 21431464

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Health Worker, Health Education and Promotion

    In response to Alaska's Community Health Aides/Practitioners (CHA/Ps) request for cancer information, the 'Path to Understanding Cancer' course was developed, implemented, and extensively evaluated. Using a qualitative approach as one evaluation component, 128 of 168 course participants engaged in post-course telephone interviews. Of these, 116 (81%) CHA/Ps felt more comfortable in talking about cancer and 57% had increased cancer screening referrals for patients. Additionally, 28% of 110 CHA/P respondents and 21% of 114 CHA/Ps' family members sought and received cancer screening; they had also made lifestyle changes to reduce cancer risk, including tobacco cessation and healthy changes in nutrition and exercise. Through qualitative design, we gained insight into CHA/Ps' lived experience of cancer and an understanding of ways the course made a difference in patient care as well as cancer risk reduction, cancer screening, and prevention for themselves, their families, and people in their communities.


  • Lessons Learned from Native C.I.R.C.L.E., a Culturally Specific Resource

    Citation: Garcia A, Baethke L, Kaur JS. (2017). Lessons Learned from Native C.I.R.C.L.E., a Culturally Specific Resource. doi:10.1007/s13187-016-1001-x.

    PMID: 26911858

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): N/A

    Intervention Type(s): Health Education and Promotion

    Cancer is now the second leading cause of death among American Indians and Alaska Natives (AIAN), and trends in cancer-related mortality over the past 2 decades show inferior control in AIAN compared to non-Hispanic Whites. The American Indian/Alaska Native Cancer Information Resource Center and Learning Exchange (Native C.I.R.C.L.E.) was developed in the year 2000 as part of a comprehensive network of partnerships to develop, maintain, and disseminate culturally appropriate cancer and other health information materials for AIAN educators and providers. Now, in its 15th year of existence, enough data has been accumulated by Native C.I.R.C.L.E. to analyze trends in the distribution of culturally relevant cancer information materials and compare access to both printed (hard copy) and online materials. The amount of culturally appropriate materials available since its creation has increased more than 10-fold. Print materials are now distributed throughout the world, and the number of materials requested from print and downloads combined are in the thousands on a monthly basis. Native C.I.R.C.L.E. is in the process of expanding its access and capabilities to target more of the lay AIAN public in order to address the digital divide.


  • Low-to-Moderate Arsenic Exposure and Respiratory Health in American Indian Communities

    Citation: Powers M, Sanchez TR, Grau-Perez M, Yeh F, Francesconi K, Goessler W, George CM, Heaney C, Best LG, Umans J, Brown RH, Navas-Acien A. (2018). Low-to-Moderate Arsenic Exposure and Respiratory Health in American Indian Communities. doi:10.1513/AnnalsATS.201708-636MG.

    PMID: 29676622

    Cancer Sites(s): Lung

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    RATIONALE: Exposure to inorganic arsenic, through drinking naturally-contaminated water, is an established cause of lung cancer. Evidence on the impact of arsenic exposure on lung function, however, is less conclusive. The evidence available, mostly from populations exposed to water arsenic levels >100 ?g/L, suggests that arsenic exposure is associated with lower lung function. Prospective studies and studies examining low-to-moderate levels of water arsenic exposure (<50 ?g/L) the level relevant for U.S. populations, are very limited. OBJECTIVES: We evaluated the association between chronic low-to-moderate arsenic exposure with lung function and disease in an American Indian population. METHODS: The Strong Heart Study is a multicenter prospective study of cardiovascular disease and its risk factors among American Indian adults. The present analysis, in 2,166 adults, used urinary arsenic measurements at baseline (1989-1991) and lung symptoms and function assessment by standardized spirometry at the second examination (1993-1995). We evaluated associations between arsenic exposure and airflow obstruction, defined as ratio of forced expiratory volume in 1 second (FEV1) to forced vital capacity (FVC) of less than 0.70, and restrictive pattern, defined as FEV1/FVC ratio greater than 0.70 and FVC less than 80% predicted; respiratory symptoms; and self-reported physician diagnosis of nonmalignant respiratory disease. RESULTS: The prevalence of airflow obstruction between 1993 and 1995 was 21.4% (463/2,166); restrictive pattern was 14.5% (314/2,166). Median urinary arsenic concentrations were higher in participants with airflow obstruction (11.0 ?g/g creatinine) compared to those without obstruction (9.8 ?g/g creatinine), and higher in those with restrictive pattern (12.0 ?g/g) compared to those without restrictive pattern (9.4 ?g/g). The odds ratio (95% confidence interval) for obstructive and restrictive patterns comparing the 75th to 25th percentile of arsenic was 1.13 (0.96-1.32) and 1.27 (1.01-1.60), respectively, after adjustment for age, sex, education, study site, smoking status, smoking pack-year, estimated glomerular filtration rate, tuberculosis, and body mass index. Emphysema, cough 4-6 times a day, phlegm, and stopping for breath were also positively associated with arsenic. CONCLUSIONS: In this American Indian population, exposure to low-to-moderate levels of inorganic arsenic, as measured in urine, was positively associated with restrictive pattern as measured by spirometry, self-reported emphysema diagnosis, self-reported shortness of breath, and more frequent cough and phlegm among those with cough, independent of smoking status. These findings suggest that low-to-moderate arsenic exposure can contribute to nonmalignant lung disease, and may be associated with restrictive lung disease.


  • Lumbee Native American ancestry and the incidence of aggressive histologic subtypes of endometrial cancer

    Citation: Zhang C, Roque D, Ehrisman JA, DiSanto N, Broadwater G, Doll KM, Gehrig PA, Secord AA, Havrilesky LJ. (2015). Lumbee Native American ancestry and the incidence of aggressive histologic subtypes of endometrial cancer. doi:10.1016/j.gore.2015.06.004.

    PMID: 26425722

    Cancer Sites(s): Endometrial

    Cancer Continuum(s): Prevention

    Intervention Site(s): Biologic

    Intervention Type(s): N/A

    OBJECTIVE: The Lumbee Indian tribe is the largest Native American tribe in North Carolina, with about 55,000 enrolled members who mostly reside in southeastern counties. We evaluated whether Lumbee heritage is associated with high-risk histologic subtypes of endometrial cancer. METHODS: We retrospectively analyzed the available records from IRB-approved endometrial cancer databases at two institutions of patients of Lumbee descent (year of diagnosis range 1980-2014). Each Lumbee case was matched by age, year of diagnosis, and BMI to two non-Lumbee controls. Chi-square test was used to compare categorical associations. Kaplan-Meier methods and log-rank test were used to display and compare disease-free survival (DFS) and overall survival (OS). Multivariate Cox proportional hazards regression was used to adjust for age and BMI while testing cohort as a predictor of DFS and OS. RESULTS: Among 108 subjects, 10/35 (29%) Lumbee and 19/72 (26%) non-Lumbee subjects had high-risk (serous/clear cell/carcinosarcoma) histologic types (p = 0.8). 12/35 (34%) Lumbee and 24/72 (33%) non-Lumbee subjects had grade 3 tumors (p = 0.9). 5/33 (15%) Lumbee and 13/72 (18%) non-Lumbee had advanced stage endometrial cancer at diagnosis (p = 0.7). Lumbee ancestry was not associated with worse survival outcomes. OS (p = 0.054) and DFS (p = 0.01) were both worse in Blacks compared to Lumbee and White subjects. CONCLUSION: In this retrospective cohort analysis, Lumbee Native American ancestry was not a significant independent predictor of rates of high-risk histological subtypes of endometrial cancer or poor survival outcomes.


  • Lung cancer deaths among American Indians and Alaska Natives, 1990-2009

    Citation: Plescia M, Henley SJ, Pate A, Underwood JM, Rhodes K. (2014). Lung cancer deaths among American Indians and Alaska Natives, 1990-2009. doi:10.2105/AJPH.2013.301609.

    PMID: 24754613

    Cancer Sites(s): Lung

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We examined regional differences in lung cancer among American Indians/Alaska Natives (AI/ANs) using linked data sets to minimize racial misclassification. METHODS: On the basis of federal lung cancer incidence data for 1999 to 2009 and deaths for 1990 to 2009 linked with Indian Health Service (IHS) registration records, we calculated age-adjusted incidence and death rates for non-Hispanic AI/AN and White persons by IHS region, focusing on Contract Health Service Delivery Area (CHSDA) counties. We correlated death rates with cigarette smoking prevalence and calculated mortality-to-incidence ratios. RESULTS: Lung cancer death rates among AI/AN persons in CHSDA counties varied across IHS regions, from 94.0 per 100,000 in the Northern Plains to 15.2 in the Southwest, reflecting the strong correlation between smoking and lung cancer. For every 100 lung cancers diagnosed, there were 6 more deaths among AI/AN persons than among White persons. Lung cancer death rates began to decline in 1997 among AI/AN men and are still increasing among AI/AN women. CONCLUSIONS: Comparison of regional lung cancer death rates between AI/AN and White populations indicates disparities in tobacco control and prevention interventions. Efforts should be made to ensure that AI/AN persons receive equal benefit from current and emerging lung cancer prevention and control interventions.


  • Mammography rates for breast cancer screening: a comparison of First Nations women and all other women living in Manitoba, Canada, 1999-2008

    Citation: Demers AA, Decker KM, Kliewer EV, Musto G, Shu E, Biswanger N, Fradette K, Elias B, Griffith J, Turner D. (2015). Mammography rates for breast cancer screening: a comparison of First Nations women and all other women living in Manitoba, Canada, 1999-2008. doi:10.5888/pcd12.140571.

    PMID: 26020546

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    INTRODUCTION: First Nations (FN) women historically have low rates of preventive care, including breast cancer screening. We describe the frequency of breast cancer screening among FN women living in Manitoba and all other Manitoba (AOM) women after the introduction of a provincial, organized breast screening program and explore how age, area of residence, and time period influenced breast cancer screening participation. METHODS: The federal Indian Registry was linked to 2 population-based, provincial data sources. A negative binomial model was used to compare breast cancer screening for FN women with screening for AOM women. RESULTS: From 1999 through 2008, 37% of FN and 59% of AOM women had a mammogram in the previous 2 years. Regardless of area of residence, FN women were less likely to have had a mammogram than AOM women (relative rate [RR] = 0.69 in the north, RR = 0.55 in the rural south, and RR = 0.53 in urban areas). CONCLUSIONS: FN women living in Manitoba had lower mammography rates than AOM women. To ensure equity for all Manitoba women, strategies that encourage FN women to participate in breast cancer screening should be promoted.


  • Managing Matajoosh: determinants of first Nations' cancer care decisions

    Citation: Lavoie JG, Kaufert J, Browne AJ, O'Neil JD. (2016). Managing Matajoosh: determinants of first Nations' cancer care decisions. doi:10.1186/s12913-016-1665-2.

    PMID: 27538389

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: Accessing cancer treatment requires First Nation peoples living in rural and remote communities to either commute to care, or to relocate to an urban centre for the length or part of the treatment. While Canadians living in rural and remote communities must often make difficult decisions following a cancer diagnosis, such decisions are further complicated by the unique policy and socio-historical contexts affecting many First Nation peoples in Canada. These contexts often intersect with negative healthcare experiences which can be related to jurisdictional confusion encountered when seeking care. Given the rising incidence of cancer within First Nation populations, there is a growing potential for negative health outcomes. METHODS: The analysis presented in this paper focuses on the experience of First Nation peoples' access to cancer care in the province of Manitoba. We analyzed policy documents and government websites; interviewed individuals who have experienced relocation (N?=?5), family members (N?=?8), healthcare providers and administrators (N?=?15). RESULTS: Although the healthcare providers (social workers, physicians, nurses, patient navigators, and administrators) we interviewed wanted to assist patients and their families, the focus of care remained informed by patients' clinical reality, without recognition of the context which impacts and constrains access to cancer care services. Contrasting and converging narratives identify barriers to early diagnosis, poor coordination of care across jurisdictions and logistic complexities that result in fatigue and undermine adherence. Providers and decision-makers who were aware of this broader context were not empowered to address system's limitations. CONCLUSIONS: We argue that a whole system's approach is required in order to address these limitations.


  • Metal exposure and oxidative stress markers in pregnant Navajo Birth Cohort Study participants

    Citation: Dashner-Titus EJ, Hoover J, Li L, Lee JH, Du R, Liu KJ, Traber MG, Ho E, Lewis J, Hudson LG. (2018). Metal exposure and oxidative stress markers in pregnant Navajo Birth Cohort Study participants. doi:10.1016/j.freeradbiomed.2018.04.579.

    PMID: 29723666

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Contamination of soil and water by waste from abandoned uranium mines has led to chronic exposures to metal mixtures in Native American communities. Our previous work demonstrated that community exposures to mine waste increase the likelihood of developing cardiovascular disease, as well as the likelihood of developing multiple chronic diseases including diabetes, hypertension and kidney disease. Exposure to various environmental metals is associated with elevated oxidative stress, which is considered a contributor to these and other chronic disease states. The purpose of the current research was to assess potential associations between exposure to uranium and arsenic and evidence for increased oxidative stress as measured by urinary F2 -isoprostanes in pregnant women enrolled in the Navajo Birth Cohort Study. The current study also included an analysis of zinc as a potential mediator of oxidative stress in the study population. Urinary arsenic and uranium, serum zinc and urinary F2 -isoprostanes were measured for each study participant at enrollment. Study participants were pregnant women with median age of 26.8; 18.9% were enrolled in the 1st trimester, 44.7% were enrolled in the 2nd trimester, and 36.4% were enrolled in the 3rd trimester. Median urinary metal levels were 5.5 and 0.016?µg/g creatinine for arsenic and uranium, respectively. Multivariable regression analysis indicated a significant association between arsenic exposure and the lipid peroxidation product 8-iso-prostaglandin F2?, controlling for zinc and trimester. No associations were detected with uranium despite evidence that levels were in the Navajo Birth Cohort samples were 2.3 times the median reported for women in the National Health and Nutrition Examination Survey (2011-12). Zinc was not found to have any causal mediation of the effects of the other metals on oxidative stress. The current work is consistent with other studies that have detected an association between arsenic and elevated oxidative stress. In contrast to arsenic, uranium did not appear to increase oxidative stress response in this study population. These findings are relevant to assessing the potential human impact of chronic exposure to mixed metal waste from abandoned uranium mines. Copyright © 2018. Published by Elsevier Inc.


  • Methods for improving the quality and completeness of mortality data for American Indians and Alaska Natives

    Citation: Espey DK, Jim MA, Richards TB, Begay C, Haverkamp D, Roberts D. (2014). Methods for improving the quality and completeness of mortality data for American Indians and Alaska Natives. doi:10.2105/AJPH.2013.301716.

    PMID: 24754557

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We describe methods used to mitigate the effect of race misclassification in mortality records and the data sets used to improve mortality estimates for American Indians and Alaska Natives (AI/ANs). METHODS: We linked US National Death Index (NDI) records with Indian Health Service (IHS) registration records to identify AI/AN deaths misclassified as non-AI/AN deaths. Analyses excluded decedents of Hispanic origin and focused on Contract Health Service Delivery Area (CHSDA) counties. We compared death rates for AI/AN persons and Whites across 6 US regions. RESULTS: IHS registration records merged to 176,137 NDI records. Misclassification of AI/AN race in mortality data ranged from 6.3% in the Southwest to 35.6% in the Southern Plains. From 1999 to 2009, the all-cause death rate in CHSDA counties for AI/AN persons varied by geographic region and was 46% greater than that for Whites. Analyses for CHSDA counties resulted in higher death rates for AI/AN persons than in all counties combined. CONCLUSIONS: Improving race classification among AI/AN decedents strengthens AI/AN mortality data, and analyzing deaths by geographic region can aid in planning, implementation, and evaluation of efforts to reduce health disparities in this population.


  • Mortality caused by chronic liver disease among American Indians and Alaska Natives in the United States, 1999-2009

    Citation: Suryaprasad A, Byrd KK, Redd JT, Perdue DG, Manos MM, McMahon BJ. (2014). Mortality caused by chronic liver disease among American Indians and Alaska Natives in the United States, 1999-2009. doi:10.2105/AJPH.2013.301645.

    PMID: 24754616

    Cancer Sites(s): Liver

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We compared chronic liver disease (CLD) mortality from 1999 to 2009 between American Indians and Alaska Natives (AI/ANs) and Whites in the United States after improving CLD case ascertainment and AI/AN race classification. METHODS: We defined CLD deaths and causes by comprehensive death certificate-based diagnostic codes. To improve race classification, we linked US mortality data to Indian Health Service enrollment records, and we restricted analyses to Contract Health Service Delivery Areas and to non-Hispanic populations. We calculated CLD death rates (per 100,000) in 6 geographic regions. We then described trends using linear modeling. RESULTS: CLD mortality increased from 1999 to 2009 in AI/AN persons and Whites. Overall, the CLD death rate ratio (RR) of AI/AN individuals to Whites was 3.7 and varied by region. The RR was higher in women (4.7), those aged 25 to 44 years (7.4), persons residing in the Northern Plains (6.4), and persons dying of cirrhosis (4.0) versus hepatocellular carcinoma (2.5), particularly those aged 25 to 44 years (7.7). CONCLUSIONS: AI/AN persons had greater CLD mortality, particularly from premature cirrhosis, than Whites, with variable mortality by region. Comprehensive prevention and care strategies are urgently needed to stem the CLD epidemic among AI/AN individuals.


  • Multilevel and Community-Level Interventions with Native Americans: Challenges and Opportunities

    Citation: Blue Bird Jernigan V, D'Amico EJ, Duran B, Buchwald D. (2018). Multilevel and Community-Level Interventions with Native Americans: Challenges and Opportunities. doi:10.1007/s11121-018-0916-3.

    PMID: 29860640

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention, Methods

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Multilevel and community-level interventions that target the social determinants of health and ultimately health disparities are seldom conducted in Native American communities. To contextualize the importance of multilevel and community-level interventions, major contributors to and causes of health disparities in Native communities are highlighted. Among the many documented socioeconomic factors influencing health are poverty, low educational attainment, and lack of insurance. Well-recognized health disparities include obesity, diabetes, and hypertension. Selected challenges of implementing community-level and multilevel interventions in Native communities are summarized such as the shortage of high-quality population health data and validated measurement tools. To address the lack of multilevel and community-level interventions, the National Institutes of Health created the Intervention Research to Improve Native American Health (IRINAH) program which solicits proposals that develop, adapt, and test strategies to address these challenges and create interventions appropriate for Native populations. A discussion of the strategies that four of the IRINAH grantees are implementing underscores the importance of community-based participatory policy work, the development of new partnerships, and reconnection with cultural traditions. Based on the work of the nearly 20 IRINAH grantees, ameliorating the complex social determinants of health disparities among Native people will require (1) support for community-level and multilevel interventions that examine contemporary and historical factors that shape current conditions; (2) sustainability plans; (3) forefronting the most challenging issues; (4) financial resources and time to collaborate with tribal leaders; and (5) a solid evidence base.


  • Native American Breast Cancer Survivors' Physical Conditions and Quality of Life

    Citation: Burhansstipanov, LK, Linda U. Seals, Brenda F. Bradley, Alice A. Kaur, Judith S. Iron, Pamela Dignan, Mark B. Thiel, Carol Gamito, Eduard. (2010). Native American Breast Cancer Survivors' Physical Conditions and Quality of Life. 116: 1560-1571.

    PMID: 20120031

    Cancer Sites(s): Breast

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Innovative Technology

    BACKGROUND: Based on Survivors' Guidance, an interactive, Web-based, culturally relevant Native American cancer survivorship program, Native American Cancer Education for Survivors (NACES), was developed. The focus of the program is to improve quality of life (QOL) for Native American breast cancer survivors. METHODS: NACES is a community-driven research and education project, based on the Social Cognitive Theoretical Model. Participants complete a QOL survey that includes physical, psychosocial, spiritual, and social components. This publication focuses on the physical component of the survey collected by trained Native American patient advocates, and compares physical conditions among Native American breast cancer survivors who were diagnosed within 1 year, those diagnosed between I and 4 years, and those who are long-term survivors (diagnosed >= 5 years ago). RESULTS: For the first time, survivorship issues are reported specifically for Native American breast cancer patients (n = 266). Selected access issues document situations that contribute to disparities. Comorbidities such as high blood pressure and arthritis are common in the survivors, with more than a third having diabetes, in addition to breast cancer. Numerous side effects from cancer treatments are experienced by these survivors. CONCLUSIONS: These data describe what Native American breast cancer patients are experiencing based on self-reported information. Clearly there is need for much more work and long-term tracking of Native American patients to begin to document if or how the severity of physical symptoms lessens over time and if their experiences are significantly different from non-Native Americans. Cancer 2010;116:1560-71. (C) 2010 American Cancer Society.


  • Native American race, use of the Indian Health Service, and breast and lung cancer survival in Florida, 1996-2007

    Citation: Lee DJ, Tannenbaum SL, Koru-Sengul T, Miao F, Zhao W, Byrne MM. (2014). Native American race, use of the Indian Health Service, and breast and lung cancer survival in Florida, 1996-2007. doi:10.5888/pcd11.130162.

    PMID: 24602589

    Cancer Sites(s): Breast, Lung

    Cancer Continuum(s): Survivorship, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    We evaluated associations of race, primary payer at diagnosis, and survival among patients diagnosed in Florida with lung cancer (n = 148,140) and breast cancer (n = 111,795), from 1996 through 2007. In multivariate models adjusted for comorbidities, tumor characteristics, and treatment factors, breast cancer survival was worse for Native American women than for white women (hazard ratio [HR], 1.52; 95% confidence interval [CI], 1.05-2.20) and for women using the Indian Health Service than for women using private insurance (HR, 1.71; 95% CI, 1.33-2.19). No survival association was found for Native American compared with white lung cancer patients or those using the Indian Health Service versus private insurance in fully adjusted models. Additional resources are needed to improve surveillance strategies and to reduce cancer burden in these populations.


  • Native American recruitment into breast cancer screening: The NAWWA project

    Citation: Burhansstipanov, LD, M. B. Wound, D. Tenney, M. Vigil, G. (2000). Native American recruitment into breast cancer screening: The NAWWA project. 15: 28-32.

    PMID: 10730800

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Health Worker

    Background. American Indian women's historically low breast cancer incidence and mortality rates have gradually increased such that in many parts of the United Stares they equal 'U.S. All Races' rates. Thus, American Indian women need screening to maintain their low rates. Methods. In an outreach program, local American Indian women were trained as lay health advisers, 'Native Sisters', to Locate and contact American Indian women in the Denver metropolitan area and provide education and encouragement to increase participation in mammography screening. Participation was monitored and interviews collected descriptive information and information about risk factors for breast cancer. An interrupted-time-series design was used to assess changes in mammography participation. Results. The NAWWA program increased recruitment of American Indian women (p < 0.05). Women recruited by the Native Sisters were more likely to be currently on hormone replacement therapy and to be menopausal. Conclusions. The lay health adviser program was effective in recruiting American Indian women to have screening mammography. Barriers to participation were complex and often involved cultural values and beliefs.


  • Native American youths and cancer risk reduction. Effects of software intervention

    Citation: Schinke, SPM, M. S. Singer, B. R. (1994). Native American youths and cancer risk reduction. Effects of software intervention. 15: 105-110.

    PMID: 8018682

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Unknown

    Intervention Type(s): Innovative Technology

    Purpose: Toward developing attractive and effective means to reduce cancer risks faced by Native American people, this study developed and tested interactive computer software to improve dietary choices and prevent tobacco use among Native American adolescents.; Methods: Based on a legend of the Seneca Nation, a cancer prevention lesson was developed and programmed for software. A sample of 368 Native American adolescents were divided randomly into intervention and control arms. Youths in both arms were pre-tested, youths in the intervention arm interacted with the software, and all youths were post-tested. Pre-test and post-test measures covered information and attitudes about cancer risks from dietary practices and tobacco use.; Results: Pre-test scores differed between the two arms on youths' age and on one outcome variable. Relative to their counterparts in the control arm, youths in the intervention arm increased their post-test scores on 8 of 12 outcome measurement variables. Process data gathered during intervention delivery indicated that nearly all youths were involved with the interactive software and lesson.; Conclusion: Interactive computer software holds promise for delivering cancer risk reduction intervention aimed at modifying dietary habits and preventing tobacco use among Native American youth.;


  • Occurrence of Endocrine and Thyroid Cancers Among Alaska Native People, 1969-2013

    Citation: Nash SH, Lanier AP, Southworth MB. (2018). Occurrence of Endocrine and Thyroid Cancers Among Alaska Native People, 1969-2013. doi:10.1089/thy.2017.0408.

    PMID: 29439613

    Cancer Sites(s): Thyroid

    Cancer Continuum(s): Diagnosis

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Nationwide, the incidence of thyroid cancer is lower among American Indian/Alaska Native (AI/AN) people than among U.S. whites (USW). However, little is known about the incidence of thyroid or other endocrine cancers specifically among Alaska Native (AN) people. METHODS: Data were examined from the National Cancer Institute's Surveillance, Epidemiology, and End Results Alaska Native Tumor Registry on endocrine cancers diagnosed among AN people from 1969-2013, with a specific focus on thyroid cancers. Frequencies of endocrine cancers by site and also of thyroid cancers by histology, size, and stage at diagnosis were evaluated. Distributions were compared to USW (Surveillance, Epidemiology, and End Results 9 Registries) using the chi-square test. Five-year average annual age-adjusted incidence rates of thyroid cancers were calculated, stratified by histology, age, and five-year period of diagnosis, and compared to those observed among USW. Five-year cause-specific survival was evaluated using cause of death data from the National Death Index Plus from the National Center for Health Statistics. RESULTS: During the 45-year period (1969-2013), 224 endocrine cancers were diagnosed among AN people, of which 210 (94%) were thyroid cancers. Compared to USW, AN people were diagnosed at a slightly younger age, had a higher proportion of thyroid cancers diagnosed with a size of 20-40?mm, and a larger proportion of patients with regional metastases. More than 85% of AN thyroid cancers were of papillary histology. The incidence of thyroid cancers was similar between AN people and USW, and appeared to increase among AN people over the period of surveillance. Finally, five-year cause-specific survival rate was 100% for papillary carcinoma patients and 86.3% [confidence interval 54.7-96.5] for follicular thyroid cancer patients. CONCLUSIONS: This study is the first report of endocrine cancers and the first detailed examination of thyroid cancer among AN people. The incidence of thyroid cancer was similar among AN people and USW. However, compared to USW, AN people appear to be at risk for diagnosis at a younger age, larger size, and higher stage. Further research is needed to explore the causes of these differences.


  • Outcomes of training nurses to conduct breast and cervical cancer screening of Native American women

    Citation: Petersen, WOT, Mary Alice Vierkant, Robert A. Sellers, Thomas A. Kottke, Thomas E. de Groen, Piet C. Nicometo, Ann Marie Kaur, Judith Salmon. (2002). Outcomes of training nurses to conduct breast and cervical cancer screening of Native American women. 16: 58-79.

    PMID: 11845768

    Cancer Sites(s): Breast, Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Training for Health Professionals

    Native WEB (Women Enjoying the Benefit) is a unique training program for nurses employed by the Indian Health Service (IHS), tribal clinics, and other clinics with large, underserved populations. It teaches nurses breast and cervix cancer screening techniques and trains them to administer and maintain high-quality screening programs that include patient outreach, education, and training. We review American Indian (AI)/Alaska Native (AN) women's need for screening services, identify some of the obstacles to screening, and present our evaluation of the Native WEB's impact on clinics, nurses, and patients. Findings show that Native WEB training is associated with increased screening activity at all three levels.;


  • Outreach by the Hanford Tribal Service Program to Indian communities around the Hanford Nuclear Reservation

    Citation: Jensen, RA. (1996). Outreach by the Hanford Tribal Service Program to Indian communities around the Hanford Nuclear Reservation. 78: 1607-1611.

    PMID: 8839580

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    Background: The Hanford Tribal Service Program offers technical assistance and health education to American Indian tribes in an area reported to be affected by radiation from the Hanford Nuclear Reservation, which was developed and operated by the United States federal government. This article describes strategies used to reach out to communities to tell them about Hanford's history and the potential health effects of radioactive materials emitted from Hanford. Two health effects of concern are thyroid disease and cancer. Based in Portland, Oregon, the Hanford program is administered by the Northwest Portland Area Indian Health Board, a tribal organization serving 39 federally recognized tribes in Idaho, Oregon, and Washington on health issues.; Methods: This article describes outreach strategies used by the health educator. They include informational resource kits, community visits, postage-paid response cards, and a toll-free telephone line. The staff made presentations to tribal councils and then reached out to health care providers and general community members, with special attention given to elders.; Discussion: The staff faced obstacles in delivering the message about Hanford's history and the potential health effects of the radioactive emissions from Hanford. One such obstacle is the uncertain and controversial nature linking Hanford and health effects due to its releases of radioactive materials. Another is that Hanford concerns represent only one of many issues vying for communities' attention. However, communities welcomed the efforts of the Hanford Tribal Service Program. After decades of secrecy, people wanted to know what happened at Hanford and how its operations might have affected their health.;


  • Ovarian and uterine cancer incidence and mortality in American Indian and Alaska Native women, United States, 1999-2009

    Citation: Singh SD, Ryerson AB, Wu M, Kaur JS. (2014). Ovarian and uterine cancer incidence and mortality in American Indian and Alaska Native women, United States, 1999-2009. doi:10.2105/AJPH.2013.301781.

    PMID: 24754663

    Cancer Sites(s): Ovarian, Uterine

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We examined geographic differences and trends in incidence and mortality of ovarian and uterine cancer in American Indian/Alaska Native (AI/AN) women. METHODS: We linked mortality data (1990-2009) and incidence data (1999-2009) to Indian Health Service (IHS) records. Death (and incidence) rates for ovarian and uterine cancer were examined for AI/AN and White women; Hispanics were excluded. Analyses focused on Contract Health Service Delivery Area (CHSDA) counties. RESULTS: AI/AN and White women had similar ovarian and uterine cancer death rates. Ovarian and uterine cancer incidence and death rates were higher for AI/ANs residing in CHSDA counties than for all US counties. We also observed geographic differences, regardless of CHSDA residence, in ovarian and uterine cancer incidence and death rates in AI/AN women by IHS region; Pacific Coast and Southern Plains women had higher ovarian cancer death rates and Northern Plains women had higher uterine cancer death rates. CONCLUSIONS: Regional differences in the incidence and mortality of ovarian and uterine cancers among AI/AN women in the United States were significant. More research among correctly classified AI/AN women is needed to understand these differences.


  • Palliative Care in the Pueblo of Zuni

    Citation: Finke, BB, Theresa Kitzes, Judith. (2004). Palliative Care in the Pueblo of Zuni [Article]. 7: 135-143.

    PMID: 12120252

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Health-Care System

    Intervention Type(s): Palliative

    The American Indian and Alaska Native population is aging and the leading causes of death for those aged 55 and older are chronic diseases such as cancer, heart disease, and the complications of diabetes. There are limited formal palliative care services available to rural and reservation dwelling American Indians and Alaska Natives. This collaboration between a tribally operated home health care agency and a federally operated Indian Health Service hospital, with the support of a palliative care center within an academic medical center, has established a palliative care program in the Pueblo of Zuni. The program is based in the tribal home health agency. Barriers to development included the rural setting with limited professional workforce, competing demands in a small agency, the need for coordination across distinct organizations, and the need to address the dying process in a culturally proficient manner. Family-focused interviews and other techniques were used to tailor the palliative care program to the unique cultural setting. The program has sought to integrate inpatient care of terminally ill patients at the Indian Health Service (IHS) hospital with outpatient hospice care. The initial goal of obtaining certification as a Medicare Hospice provider has not been met and remains a goal. Meanwhile alternative mechanisms for funding the services have been found. The experience of this collaboration suggests that a tribally based, culturally proficient palliative care program can be developed within an American Indian/Alaska Native community and that it can drive the local health system toward improved end-of-life care. [ABSTRACT FROM AUTHOR] Copyright of Journal of Palliative Medicine is the property of Mary Ann Liebert, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)


  • Palliative Oncologic Care Curricula for Providers in Resource-Limited and Underserved Communities: a Systematic Review

    Citation: Xu MJ, Su D, Deboer R, Garcia M, Tahir P, Anderson W, Kinderman A, Braunstein S, Sherertz T. (2017). Palliative Oncologic Care Curricula for Providers in Resource-Limited and Underserved Communities: a Systematic Review. doi:10.1007/s13187-017-1310-8.

    PMID: 29264703

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Familiarity with principles of palliative care, supportive care, and palliative oncological treatment is essential for providers caring for cancer patients, though this may be challenging in global communities where resources are limited. Herein, we describe the scope of literature on palliative oncological care curricula for providers in resource-limited settings. A systematic literature review was conducted using PubMed, Embase, Cochrane Library, Web of Science, Cumulative Index to Nursing and Allied Health Literature, Med Ed Portal databases, and gray literature. All available prospective cohort studies, case reports, and narratives published up to July 2017 were eligible for review. Fourteen articles were identified and referenced palliative care education programs in Argentina, Uganda, Kenya, Australia, Germany, the USA, or multiple countries. The most common teaching strategy was lecture-based, followed by mentorship and experiential learning involving role play and simulation. Education topics included core principles of palliative care, pain and symptom management, and communication skills. Two programs included additional topics specific to the underserved or American Indian/Alaskan Native community. Only one program discussed supportive cancer care, and no program reported educational content on resource-stratified decision-making for palliative oncological treatment. Five programs reported positive participant satisfaction, and three programs described objective metrics of increased educational or research activity. There is scant literature on effective curricula for providers treating cancer patients in resource-limited settings. Emphasizing supportive cancer care and palliative oncologic treatments may help address gaps in education; increased outcome reporting may help define the impact of palliative care curriculum within resource-limited communities.


  • Pap prevalence and cervical cancer prevention among Alaska Native women

    Citation: Lanier, APK, J. J. Holck, P. (1999). Pap prevalence and cervical cancer prevention among Alaska Native women. 20: 471-486.

    PMID: 10776116

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Health Education and Promotion

    The goals of the Alaska Native Women's Health Project (WHP) were to determine the following: (1) Pap prevalence based on chart review before and during an intervention period; (2) the level of understanding of cancer and cancer screening services with emphasis on cervical cancer; (3) use and satisfaction with current health maintenance services; and (4) improvement in knowledge and cancer screening rates following intervention. A random sample of 481 Alaska Native (Eskimo, Aleut, Indian) women living in Anchorage were interviewed face to face about their understanding of cancer risk factors (tobacco use, sexually transmitted diseases (STDs), reproductive issues), cancer screening examinations (Pap test, breast self-examination (BSE), breast exam by a provider, mammography), and their attitudes about health care and health care services. Sixty-two percent of control women were documented to have had at least one Pap test within the 3-year period prior to the beginning of the study; however, only 9% were documented to have had annual Pap screening. The intervention included distribution of educational materials, counseling on any woman's health issue, special evening clinics, and reminders (mail/phone call) of scheduled Pap appointments.;


  • Pap screening clinics with native women in Skidegate, Haida Gwaii. Need for innovation

    Citation: Calam, BN, L. Brown, D. Wilson, M. A. (1999). Pap screening clinics with native women in Skidegate, Haida Gwaii. Need for innovation. 45: 355-360.

    PMID: 10065309

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Health Worker, Screening Program

    Problem Addressed: First Nations women in British Columbia, especially elders, are underscreened for cancer of the cervix compared with the general population and are much more likely to die of the disease than other women.; Objective Of Program: To develop a pilot program, in consultation with community representatives, to address the Pap screening needs of First Nations women 40 years and older on a rural reserve.; Main Components Of Program: Identification of key links to the population; consultation with the community to design an outreach process; identification of underscreened women; implementation of community Pap screening clinics; evaluation of the pilot program.; Conclusions: We developed a Pap screening outreach program that marked a departure from the usual screening approach in the community. First Nations community health representatives were key links for the process that involved family physicians and office staff at a local clinic on a rural reserve. Participation rate for the pilot program was 48%, resulting in an increase of 15% over the previously recorded screening rate for this population. More screening clinics of this type and evaluation for sustainability are proposed.


  • Pap test use and cervical cancer incidence in First Nations women living in Manitoba

    Citation: Decker KM, Demers AA, Kliewer EV, Biswanger N, Musto G, Elias B, Griffith J, Turner D. (2015). Pap test use and cervical cancer incidence in First Nations women living in Manitoba. doi:10.1158/1940-6207.CAPR-14-0277

    PMID: 25403849

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    This study examined Papanicolaou (Pap) test utilization, Pap test results, and cervical cancer incidence among First Nations (FN) women living in Manitoba, Canada taking into account age group, time period, and area of residence. Six population-based data sources were linked at an individual level. Negative binomial regression was used to compare Pap test utilization and results between FN and all other Manitoba (AOM) women. Poisson regression was used to compare cervical cancer incidence. Among women younger than 25 years, FN were more likely than AOM women to have had a Pap test [rate ratio (RR) = 1.37, 95% confidence intervals (CI), 1.22-1.53, 18-19 year olds; RR = 1.17, 95% CI, 1.05-1.31, 20-24 year olds]. There was no difference in Pap test use for women 25 to 29 or 30 to 39 years. FN 40 years and older were less likely to have a Pap test than AOM women (RR = 0.84, 95% CI, 0.75-0.93, 40-49 years old; RR = 0.71, 95% CI, 0.63-0.79, 50-59 years old; RR = 0.59, 95% CI, 0.52-0.66, 60-69 years old). FN were more likely than AOM women to have a high (RR = 1.88, 95% CI, 1.65-2.13) or low-grade Pap test result (RR = 1.60, 95% CI, 1.48-1.73). The invasive cervical cancer incidence rate was double for FN women 25 to 39 years of age (21.9 per 100,000, FN; 10.2 per 100,000, AOM, P = 0.006) and 40 to 69 years of age (24.3 per 100,000, FN; 12.3 per 100,000, AOM, P = 0.007). In conclusion, cervical cancer screening among FN women over 40 years of age must be increased to address the higher cervical cancer incidence. ©2014 American Association for Cancer Research.


  • Participatory research in a Native Hawaiian community. The Wai'anae Cancer Research Project

    Citation: Matsunaga, DSE, R. Gotay, C. C. Banner, R. O. DeCambra, H. Hammond, O. W. Hedlund, N. Ilaban, E. K. Issell, B. F. Tsark, J. A. (1996). Participatory research in a Native Hawaiian community. The Wai'anae Cancer Research Project. 78: 1582-1586.

    PMID: 8839575

    Cancer Sites(s): Prostate

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Background: Community participation was a key component of a cancer control research project in a Native Hawaiian community. This project tested the effectiveness of a culturally appropriate intervention as a means of increasing breast and cervical cancer screening practices among Native Hawaiian women on the Wai'anae Coast of the island of O'ahu.; Methods: The Wai'anae Cancer Research project was community driven, with Native Hawaiian community representatives involved in all phases of the project, from grant proposal development to data interpretation. A community health center administered the grant award from the National Cancer Institute. The policymaking steering committee included community representatives, health professionals, and researchers to balance community and scientific quality standards. A factor in the project's success was continuous involvement over 7 years by a core of community representatives and professional staff.; Results: More than 500 women participated in the intervention, and outcome measures indicated that there was a community wide impact on cancer-related knowledge, attitudes, and behaviors. Important contributions of the project also included direct economic benefits, improvements in health services and systems, increased research capabilities, and dissemination of findings to other communities and researchers.; Conclusion: Community participation in all phases of the research was essential in generating community acceptance and resulted in an innovative and effective intervention. This participatory research project has left the community richer in knowledge, skills, experience, confidence, and resources. These qualities provide a strong foundation for building future programs and research.;


  • Partnering for success through community-based participatory research in Indian country

    Citation: Watanabe-Galloway S, Burhansstipanov L, Krebs LU, Harjo LD, Petereit DG, Pingatore NL, Isham D. (2014). Partnering for success through community-based participatory research in Indian country. doi:10.1007/s13187-014-0683-1.

    PMID: 25030416

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)


  • Pathways of Adaptation: Two Case Studies with One Evidence-Based Substance Use Prevention Program Tailored for Indigenous Youth

    Citation: Ivanich JD, Mousseau AC, Walls M, Whitbeck L, Whitesell NR. (2018). Pathways of Adaptation: Two Case Studies with One Evidence-Based Substance Use Prevention Program Tailored for Indigenous Youth. doi:10.1007/s11121-018-0914-5.

    PMID: 29876790

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention, Methods

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Indigenous communities often face disproportionate challenges across a variety of health domains, and effective prevention strategies are sorely needed. Unfortunately, evidence is scant regarding what approaches are effective for these communities. A common approach is to take an evidence-based practice or program with documented effectiveness in other populations and implement it with Indigenous populations. While a science of intervention adaptation is emerging, there remains little guidance on processes for adaptation that strategically leverage both existing scientific evidence and Indigenous prevention strategies. In this paper, two case studies illustrate promising practices for adaptation, documenting the approaches of two research teams funded under the National Institutes of Health's initiative to support Intervention Research to Improve Native American Health (IRINAH). These teams worked with distinct Indigenous populations in the USA and Canada to culturally adapt the same prevention program, the Iowa Strengthening Families Program for Parents and Youth 10-14. The approaches of these two teams and the programs that resulted are compared and contrasted, and critical elements of adaptation in partnership with Indigenous communities are discussed.


  • Pediatric melanoma in New Mexico American Indians, Hispanics, and non-Hispanic whites, 1981-2009

    Citation: Rajput A, Faizi SA, Nir I, Morris KT, Fahy B, Russell J, Wiggins C. (2014). Pediatric melanoma in New Mexico American Indians, Hispanics, and non-Hispanic whites, 1981-2009. doi:10.1016/j.amjsurg.2013.10.015.

    PMID: 24581766

    Cancer Sites(s): Skin

    Cancer Continuum(s): Diagnosis

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Pediatric melanoma rates are increasing nationally. Our purpose was to determine the incidence of melanoma in New Mexico's (NM's) American Indian, Hispanic, and non-Hispanic white children. METHODS: A retrospective review (1981 to 2009) of the NM Tumor Registry was conducted. Melanomas diagnosed in children <19 years of age were identified. Average annual age-adjusted incidence rates per million were calculated. RESULTS: Sixty-four cases were identified. Rates per million were 7.4 for non-Hispanic whites, 2.1 for Hispanics, and 3.3 for American Indians. Fifty-nine percent were women. Fifty-five (86%) cases were localized, 6 (9%) were regional, and 1 (3%) case was metastatic. Majority of cases (49/64; 77%) occurred in children >14 years of age. American Indians presented with thicker melanomas as compared to whites and Hispanics. CONCLUSIONS: Incidence rates for pediatric melanoma in NM are highest for non-Hispanic whites. Distant metastasis is uncommon. Melanoma in children is rare, but practitioners must be aware of its occurrence for prompt diagnosis and treatment. Copyright © 2014 Elsevier Inc. All rights reserved.


  • Perceptions of cancer treatment decision making among American Indians/Alaska Natives and their physicians

    Citation: Morris AM, Doorenbos AZ, Haozous E, Meins A, Javid S, Flum DR. (2016). Perceptions of cancer treatment decision making among American Indians/Alaska Natives and their physicians. doi:10.1002/pon.4191.

    PMID: 27279001

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVE: American Indian/Alaska Native (AI/AN) patients are significantly less likely than non-Hispanic whites to receive guideline-concordant cancer care. Our objective was to examine cancer treatment decision making among AI/AN patients and their providers. METHODS: From 2011 to 2014, AI/AN cancer patients and their surgeons were identified through a hospital registry in Washington State. Patients were invited to participate in a mailed survey that queried socio-demographics, cultural affiliation, everyday perceived discrimination, and trust in providers. Both patients and surgeons were queried about decision-making quality (collaboration and satisfaction). The primary outcome was association between patient and provider assessments of decision-making quality. The secondary outcome was non-adherence to treatment. RESULTS: Forty-nine patients (62% response rate) and 14 surgeons (37% response rate) returned surveys. Half of patients had not completed high school; 41% were living in poverty. Half of patients reported a strong tribal affiliation and most reported experiencing some form of discrimination. Patients endorsed high trust in surgeons and a high quality decision-making process; and surgeons' rated decision-making quality even more highly than patients did in every domain. Non-adherence to treatment recommendations was common (26%) and was significantly associated with lower patient-reported collaboration and satisfaction with decision making. CONCLUSIONS: Given the importance of adherence to cancer treatment for survival, the many non-clinical reasons for non-adherence, and the currently demonstrated association between decision-making quality and adherence, it would be worthwhile to investigate how to increase AI/AN patient satisfaction with decision making and whether improving satisfaction yields improved adherence to the cancer treatment plan. Copyright © 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd. Copyright © 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.


  • Period life tables for the non-Hispanic American Indian and Alaska Native population, 2007-2009

    Citation: Arias E, Xu J, Jim MA. (2014). Period life tables for the non-Hispanic American Indian and Alaska Native population, 2007-2009. doi:10.2105/AJPH.2013.301635.

    PMID: 24754553

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We estimated complete period life tables for the non-Hispanic American Indian and Alaska Native (AI/AN) population residing in Contract Health Service Delivery Area (CHSDA) counties for the period 2007-2009. METHODS: We used National Vital Statistics System mortality data files for years 2007-2009 corrected for AI/AN misclassification on death certificates, midyear 2008 revised census bridged race intercensal population estimates, and National Vital Statistics System birth data for years 2006-2009. We used the same methodology as that used to estimate official US annual life tables, with some minor modifications. RESULTS: For the period 2007-2009, the non-Hispanic AI/AN population in CHSDA counties had the lowest life expectancy at birth (71.1 years) of any racial/ethnic group for which official US life tables are estimated. By comparison, in 2008, life expectancy at birth was 73.9 years for the non-Hispanic Black population, 78.4 years for the non-Hispanic White population, and 80.8 years for the Hispanic population. CONCLUSIONS: The life tables showed a clear mortality disadvantage for the non-Hispanic AI/AN population in CHSDA counties relative to other national populations. The findings suggested that further research is necessary to explore the causes behind these disadvantages.


  • Perspectives of American Indians in Eastern North Carolina on Socio-cultural Factors that Influence Colorectal Cancer Screening Decisions

    Citation: Frerichs L, Rhode J, Bell R, Hunt C, Lowery J, Brooks M, Beasley C, Reuland D. (2018). Perspectives of American Indians in Eastern North Carolina on Socio-cultural Factors that Influence Colorectal Cancer Screening Decisions. doi:10.1353/hpu.2018.0055.

    PMID: 29805137

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection, Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    American Indians (AI) have disproportionately high rates of colorectal cancer (CRC), but there is relatively little research focused on developing AI CRC screening interventions. We held six focus groups with AIs in rural Eastern U.S. (n=74) and analyzed the qualitative data from them in order to identify individual and socio-cultural factors that influence AI CRC screening decisions. Screening fear and anxiety was a central theme of the focus groups. For example, participants told stories about how late-stage cancer diagnoses and deaths in the community contributed to their fears and cancer fatalism. Furthermore, CRC screening fears were reinforced by health communication norms that limited productive conversations about CRC screening. Our findings indicate that culturally adapted interventions, such as CRC screening decision aids, are needed to help AIs communicate and make informed decisions about CRC screening with support from family and health care providers. More research is needed on the influence of these interventions on CRC screening intentions, social norms, and shared decision-making.


  • Pilot test of a cervical cancer prevention video developed for Alaska Native women

    Citation: Stillwater, BE, Vivian A. Lanier, Anne P. (1995). Pilot test of a cervical cancer prevention video developed for Alaska Native women [Article]. 110: 211-214.

    PMID: 7631000

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion, Support Group

    A specially developed cervical cancer education video was pilot tested among Alaska Native women. Cervical cancer is twice as likely to occur among Alaska Native women than among U.S. Caucasian women. The Alaska Native Women's Health Project found that only 46 percent of 528 women interviewed could identify the Papanicolaou test as a screening test for cervical cancer. A culturally appropriate video for cervical cancer prevention was produced that used 2 learning mechanisms commonly used by Alaska Natives, namely, role modeling and storytelling. The video tape was tested by 90 Alaska Native women from several groups, who were surveyed prior to and after watching the tape. The knowledge level of these women on the subject of cervical cancer increased after watching the video. The comments made by the women indicated an appreciation of the cultural awareness and aptness of the video.


  • Poor Survival for American Indians with Head and Neck Squamous Cell Carcinoma

    Citation: Dwojak SM, Finkelstein DM, Emerick KS, Lee JH, Petereit DG, Deschler DG. (2014). Poor Survival for American Indians with Head and Neck Squamous Cell Carcinoma. doi: 10.1177/0194599814533083.

    PMID: 24781656

    Cancer Sites(s): Head and Neck

    Cancer Continuum(s): Survivorship, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVE: To examine patient characteristics, treatment modalities, and human papillomavirus (HPV) prevalence to identify potential mediators of disparities that may lead to differences in outcomes for American Indians with head and neck squamous cell carcinoma (HNSCC). STUDY DESIGN: Historical cohort study. SETTING: Community cancer centers. PATIENTS AND METHODS: We reviewed all patients older than 18 years with a new diagnosis of HNSCC in South Dakota from 1999 to 2009. We assessed tissue samples from cases of oropharyngeal cancer for the presence of HPV DNA. RESULTS: In total, 474 white patients were compared with 32 American Indians. American Indians experienced significantly worse survival compared with whites (hazard ratio [HR], 0.59; P = .05), even after controlling for other factors such as age, sex, distance, Charlson comorbidity index, alcohol abuse, smoking, insurance, and disease stage. American Indians had a greater risk of alcohol abuse (68% vs 42%; P = .008), current smoking (67% vs 49%; P = .03), living more than 1 hour from a cancer center (81% vs 30%; P < .001), lacking private insurance (24% vs 68%; P < .001), and late-stage disease presentation (stages III and IV) (74% vs 55%; P = .04). There were no detected differences in age, sex, medical comorbidities, tumor site, tumor grade, HPV status, time to treatment, or type of treatment received. CONCLUSION: American Indians in South Dakota with HNSCC have poorer survival compared with white patients. Once presented to a cancer center, American Indians received nearly identical treatment to white patients. Disparities in outcomes arise primarily due to sociodemographic factors and later stage at presentation. © American Academy of Otolaryngology—Head and Neck Surgery Foundation 2014.


  • Prayer and Faith: Spiritual Coping among American Indian Women Cancer Survivors

    Citation: Roh S, Burnette CE, Lee YS. (2018). Prayer and Faith: Spiritual Coping among American Indian Women Cancer Survivors. doi:10.1093/hsw/hly015.

    PMID: 29897444

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Although cancer disparities among American Indian (AI) women are alarming, research on spiritual coping among this population is virtually nonexistent. This is particularly problematic, given the importance of medical practitioners' discussing the topic with cancer patients, along with the centrality of spirituality to many AI patients. The purpose of this article was to explore AI women cancer survivors' spiritual coping with their experiences. Using a community-based participatory research approach, this qualitative descriptive study included a sample of 43 AI women cancer survivors (n = 14 breast cancer, n = 14 cervical cancer, and n = 15 colon and other types of cancer). Qualitative content analysis revealed that most participants (76 percent, n = 32) cited prayer as an important part of their cancer recovery and coping strategies. Many participants expressed how prayer and spirituality connected them to family, to faith communities, and to others. In addition to prayer, over a third (36 percent, n = 15) of participants emphasized faith as a recovery and coping strategy. Results indicate that most women drew great comfort, strength, hope, and relief from their spiritual and faith traditions, indicating that religious and spiritual practices may be an important protective factor against the strain of the cancer experience.


  • Predictors of Pain Management among American Indian Cancer Survivors

    Citation: Hodge F, Nandy K, Cadogan M, Itty T, Warda U, Martinez F, Quan A. (2016). Predictors of Pain Management among American Indian Cancer Survivors. doi:10.1353/hpu.2016.0079.

    PMID: 27180700

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    There is little research on cancer symptom management among Indigenous populations. This paper reports on the predictors of cancer pain management among American Indian cancer patients/survivors and their caregivers/family. The intervention was a symptom management toolkit delivered via traditional talking circles vs. standard care (control) at eight randomized reservation and urban clinic sites in the Southwest. Participants (N=184) were American Indian adults diagnosed with cancer and/or caregiver/family members. The primary outcome measure collected via pre-test and post-test questionnaires was the ability to manage cancer pain. Significant differences at post-test were the ability to manage cancer-related pain (p=.02) and a close relationship (p=.0018) that proved significant for intervention participants and was instrumental in fostering their ability to manage pain. The study also showed improvement in the desire and ability to improve cancer pain management among intervention participants. Programs targeting American Indians should use culturally appropriate education to improve management of cancer-related symptoms.


  • Predictors of regular mammography use among American Indian women in Oklahoma: a cross-sectional study

    Citation: Tolma EL, Stoner JA, Li J, Kim Y, Engelman KK. (2014). Predictors of regular mammography use among American Indian women in Oklahoma: a cross-sectional study. doi:10.1186/1472-6874-14-101.

    PMID: 25169207

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: There are significant disparities in breast cancer screening and survivorship between American Indian (AI) and non-Hispanic white women. This study aimed to identify the salient beliefs AI women from Oklahoma have on regular mammography screening, and to determine which beliefs and health- related practices are associated with past mammography screening behavior. METHODS: This study used an integrated model of the Theory of Planned Behavior as the guiding theoretical framework. Data were collected from 255 (mean age?=?51 years, SD 7.64 years) AI women randomly selected from a rural Oklahoma medical clinic (response rate: 79%). Multivariate logistic regression was used to identify factors associated with self-reported past mammography within the last two years while controlling for demographic variables. Associations were summarized using odds ratios (OR), the ratio of the odds of past mammography per a 1-unit increase in continuous independent factor scales (subjective physician norm, cultural affiliation, fatalism, knowledge of mammography screening guidelines, and perceived behavior control barriers) or between groups defined by categorical variables, and 95% confidence intervals (CI). RESULTS: Of the participants, 65% (n?=?167) reported a screening mammogram within the last two years. After adjustment for age and educational status, women with a higher total subjective-norm physician score (OR?=?1.15, 95% CI: 1.06-1.24), a higher knowledge of mammography screening guidelines (OR?=?1.52, 95% CI: 1.00-2.31), a family history of breast cancer (OR?=?9.97, 95% CI: 3.05-32.62), or reporting an annual versus none or a single physician breast examination (OR?=?5.57, 95% CI: 1.79-17.37) had a higher odds of past mammography. On the other hand, women who were more culturally affiliated (OR?=?0.42, 95% CI: 0.24-0.74), perceived more barriers (OR?=?0.86, 0.78-0.94), or had higher fatalistic attitudes toward breast cancer (OR?=?0.90, 95% CI: 0.82-0.99) had lower odds of past mammography. CONCLUSION: In the development of culturally-appropriate interventions promoting mammography among AI communities, emphasis could be put on the following: a) promoting clinic-related practices (e.g. physician recommendation, physician breast examination); b) promoting community-related practices (e.g. knowledge about mammography while eliminating fatalistic attitudes); and c) reducing environmental barriers.


  • Preliminary lessons learned from the 'Native Navigators and the Cancer Continuum' (NNACC)

    Citation: Burhansstipanov, LK, Linda U. Watanabe-Galloway, Shinobu Petereit, Daniel G. Pingatore, Noel L. Eschiti, Valerie. (2012). Preliminary lessons learned from the 'Native Navigators and the Cancer Continuum' (NNACC). 27: S57-S65.

    PMID: 22410710

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection, Prevention, Survivorship, Treatment, Diagnosis

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Community Health Worker

    This community-based participatory research (CBPR) study was based on patient navigation (Navigator) among three original sites: Colorado, Michigan, and South Dakota. During 2010, the study added two sites: the Comanche Nation and the Muscogee (Creek) Nation (Oklahoma). The intervention includes 24-h of a Navigator-implemented cancer education program that addresses the full continuum of cancer care. The partners include agreements with up to two local Native American organizations each year, called Memorandum Native Organizations, who have strong relationships with local American Indians. Family fun events are used to initiate the series of workshops and to collect baseline data and also to wrap up and evaluate the series 3 months following the completion of the workshop series. Evaluation data are collected using an audience response system (ARS) and stored using an online evaluation program. Among the lessons learned to date are: the Institutional Review Board processes required both regional and national approvals and took more than 9 months. All of the workshop slides were missing some components and needed refinements. The specifics for the Memorandum Native Organization deliverables needed more details. The ARS required additional training sessions, but once learned the Navigator use the ARS well. Use of the NACR website for a password-protected page to store all NNACC workshop and training materials was easier to manage than use of other online storage programs. The community interest in taking part in the workshops was greater than what was anticipated. All of the Navigators' skills are improving and all are enjoying working with the community.;


  • Prevalence and Mortality of Melanoma in Oklahoma Among Racial Groups, 2000-2008

    Citation: Baldwin J, Janitz AE, Erb-Alvarez J, Snider C, Campbell JE. (2016). Prevalence and Mortality of Melanoma in Oklahoma Among Racial Groups, 2000-2008.

    PMID: 27885301

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    INTRODUCTION: This study assessed the period prevalence (2000-2008) and mortality rates of melanoma, in Oklahoma, among different racial/ethnic strata. METHODS: We analyzed incident cases of melanoma from 2000-2008 from the Oklahoma Central Cancer Registry and determined disease duration using Kaplan-Meier survival analysis to calculate period prevalence of melanoma in Oklahoma. Using a series of Chi-Square tests, we compared period prevalence and mortality rates among the racial groups and compared mortality between Oklahoma and the US. RESULTS: White non-Hispanics in Oklahoma have the highest period prevalence (p<0.0001) among the racial strata. American Indian or Alaska Native (AI/AN) individuals have the second highest period prevalence in Oklahoma (p<0.0001). Furthermore, white non-Hispanics (p<0.0001) and AI/AN individuals (p=0.0003) in Oklahoma had higher mortality rates compared to the US. CONCLUSIONS: There are disparities in the prevalence and mortality of melanoma among the AI/AN population in Oklahoma, and prevention and education programs should focus on this population.


  • Prevalence of skin cancer in Native American kidney transplant recipients

    Citation: Ilyas M, Ginsberg Z1, Temkit M, Keddis M, Sharma A. (2018). Prevalence of skin cancer in Native American kidney transplant recipients. doi:10.1111/ijd.13863.

    PMID: 29265357

    Cancer Sites(s): Skin

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Skin cancer prevalence is well-characterized for white solid organ transplant recipients. Although the prevalence of skin cancer in non-white (Black, Asian, Hispanic) kidney transplant recipients (KTRs) has been assessed, no study has reported the prevalence of skin cancer in Native American (NA) KTRs. The aim of this study is to determine if the prevalence of skin cancer in NAKTRs is the same as in white KTRs. METHODS: We conducted a case-controlled retrospective review from a single transplant center. One hundred thirteen NAKTRs who received a transplant between 2001 and 2011 were age- and transplant-year matched with 113 white controls. RESULTS: The 226 KTRs consisted of 141 (62.4%) men and 85 (37.6%) women, with a mean age of 50.2 ± 10.8 years. There was no skin cancer found in NAKTRs prior to or post transplantation, while seven (6.2%) white KTRs had eight skin cancers prior to transplantation, and 28 (24.8%) white KTRs developed 66 skin cancers post transplantation. Twenty-two (19.5%) NAKTRs did not follow-up with dermatology at this institution. The median follow-up in NAKTRs was 3.3 years compared to 3.0 years in white KTRs. CONCLUSION: NAKTRs have a decreased prevalence of skin cancer compared to their white counterparts.


  • Preventing substance use among native American youth: Three-year results

    Citation: Schinke, SPT, L. Cole, K. C. (2000). Preventing substance use among native American youth: Three-year results. 25: 387-397.

    PMID: 10890292

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Schools

    Intervention Type(s): Health Education and Promotion

    This study developed and tested skills- and community-based approaches to prevent substance abuse among Native American youth. After completing pretest measurements, 1,396 third- through fifth-grade Native American students from 27 elementary schools in five states were divided randomly by school into two intervention arms and one control arm. Following intervention delivery, youths in all arms completed posttest measurements and three annual follow-up measurements. Youths in schools assigned to the intervention arms learned cognitive and behavioral skills for substance abuse prevention. One intervention arm additionally engaged local community residents in efforts to prevent substance use among Native American youth. Outcome assessment batteries measured youths' reported use of smoked and smokeless tobacco, alcohol, and marijuana. Over the course of the 3.5-year study, increased rates of tobacco, alcohol, and marijuana use were reported by youths across the three arms of the study. Though cigarette use was unaffected by intervention, follow up rates of smokeless tobacco, alcohol, and marijuana use were lower for youths who received skills intervention than for youths in the control arm. Community intervention components appeared to exert no added beneficial influence on youths' substance use, beyond the impact of skills intervention components alone. Finally, gender differences were apparent across substances, measurements, and study arms, with girls smoking more cigarettes and boys using more smokeless tobacco, alcohol, and marijuana. (C) 2000 Elsevier Science Ltd.


  • Prevention Research with Indigenous Communities to Expedite Dissemination and Implementation Efforts

    Citation: Blue Bird Jernigan V, D'Amico EJ, Keawe'aimoku Kaholokula J. (2018). Prevention Research with Indigenous Communities to Expedite Dissemination and Implementation Efforts. doi:10.1007/s11121-018-0951-0.

    PMID: 30284158

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Effectively translating evidence-based interventions into clinic and community settings is an increasing priority for health researchers. The successful dissemination and implementation (D&I) of interventions found efficacious ensures that major health funders such as the National Institutes of Health can demonstrate a return on investment in biomedical and behavioral research and that all populations receive maximum benefit from scientific discoveries. However, the products of research efficacy trials, the evidence-based interventions, are rarely designed with D&I in mind, rendering these interventions fundamentally misaligned with real-world settings. Further, while some evidence-based interventions have been successfully adapted for implementation in indigenous communities, few such examples have been published. Literature regarding the adoption and implementation of evidence-based interventions in indigenous communities is scarce, and the feasibility of scaling up successful interventions is poorly understood, potentially widening health disparities. The Intervention Research to Improve Native American Health (IRINAH) partners are generating efficacy data on community-responsive and engaged interventions that are also designed to facilitate D&I efforts, reducing the time between research to practice to benefit indigenous communities, should these interventions prove effective. In this manuscript, we provide an overview and key challenges of D&I science with indigenous communities. We then use IRINAH case studies to highlight strategies that IRINAH partners are using to plan for the scale-up and implementation of the studies. We conclude with recommendations to inform the next phase of IRINAH research efforts.


  • Print Material in Cancer Prevention: an Evaluation of Three Booklets Designed with and for Alaska's Community Health Workers

    Citation: Cueva, KC, Melany Dignan, Mark Landis, Kate. (2015). Print Material in Cancer Prevention: an Evaluation of Three Booklets Designed with and for Alaska's Community Health Workers.

    PMID: 25865398

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Health Worker, Health Education and Promotion

    With increased internet access in rural Alaska and subsequent shifts in access to health information, we sought to understand the current role of printed cancer education booklets focused on recommended cancer screening exams. This evaluation reviewed three cancer education booklets specifically created with and for Alaska's Community Health Workers (CHWs) and the people in their communities. The booklets were created in an adaptation of empowerment theory, focused on working within a community-based participatory framework, in a culturally respectful manner, to shift cancer prevention norms by empowering CHWs to catalyze health behavior change for both themselves and their communities. The booklets incorporated traditional Alaska Native values and were designed to connect with readers at an affective and informational place that emphasized relationships. Since 2010, over 20,000 booklets have been distributed. Between January 2013 and March 2014, CHWs from throughout Alaska were invited to complete a three-page anonymous written evaluation of the booklets during community health trainings in Anchorage, Alaska. A total of 102 CHWs completed evaluations, with the vast majority indicating that they liked (100 %), and learned (96 %) from, the booklets. The evaluation results suggest that printed booklets designed in a culturally responsive manner, which both communicate medically accurate information and reach readers at an affective place to inspire action through raising awareness in relationship with others, are a helpful way to receive, discuss, and disseminate cancer screening information among Alaska Native people.;


  • Promising Practices for Promoting Health Equity Through Rigorous Intervention Science with Indigenous Communities

    Citation: Whitesell NR, Mousseau A, Parker M, Rasmus S, Allen J. (2018). Promising Practices for Promoting Health Equity Through Rigorous Intervention Science with Indigenous Communities. doi:10.1007/s11121-018-0954-x.

    PMID: 30443847

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Research in indigenous communities is at the forefront of innovation currently influencing several new perspectives in engaged intervention science. This is innovation born of necessity, involving efforts to create health equity complicated by a history of distrust of research. Immense diversity across indigenous cultures, accompanied by variation in associated explanatory models, health beliefs, and health behaviors, along with divergent structural inequities add further complexity to this challenge. The aim of this Supplemental Issue on Promoting Health Equity through Rigorous, Culturally Informed Intervention Science: Innovations with Indigenous Populations in the United States is to highlight the promising new approaches and perspectives implemented by a group of engaged researchers and their community partners, as they seek to move intervention research forward within indigenous communities. Case studies presented are from projects led by members of the National Institutes of Health Intervention Research to Improve Native American Health (IRINAH) consortioum, investigators who conduct health promotion and disease prevention research among American Indians, Alaska Natives, and Native Hawaiians. The promising practices profiled include new strategies in (a) community partnerships, engagement, and capacity building; (b) integration of indigenous and academic perspectives; (c) alignment of interventions with indigenous cultural values and practices; and (d) implementation and evaluation of multilevel interventions responsive to complex cultural contexts. The IRINAH projects illustrate the evolution of an intervention science responsive to the needs, realities, and promise of indigenous communities, with application to health research among other culturally distinct health inequity groups.


  • Prospective evaluation of unmet needs of rural and aboriginal cancer survivors in Northern British Columbia

    Citation: Olson RA, Howard F, Turnbull K, Munroe D, Zirul C, Manji R, Tobin P, Ward A. (2014). Prospective evaluation of unmet needs of rural and aboriginal cancer survivors in Northern British Columbia. doi:10.3747/co.21.1729.

    PMID: 24764702

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: The unmet needs of cancer survivors in rural, remote, and aboriginal communities are largely unexplored. We explored potential differences between rural survivors (rss) in 4 general population (gp) and 4 First Nations (fn) communities. METHODS: We approached 4 gp and 4 fn rs communities to participate in a mixed-methods project. Participants completed the Hospital Anxiety and Depression Scale (hads) and the Survivor Unmet Needs Survey (suns) and provided demographic information. Each question on the suns can be scored from 0 to 4, with 0 representing no unmet need and 4 representing very high unmet need. A directed approach to content analysis of focus group and interview data was used to triangulate the hads and suns results. RESULTS: We prospectively accrued 23 fn rss and 56 gp rss for this study. More fn rss had borderline or abnormal anxiety (5% vs. 21%, p = 0.02). Compared with gp rss, fn rss had higher unmet needs scores in all categories: Information (2.29 vs. 0.8, p < 0.001), Work and Financial (1.66 vs. 0.5, p < 0.001), Access and Continuity of Health Care (1.83 vs. 0.44, p < 0.001), Coping and Sharing (2.22 vs. 0.62, p < 0.001), and Emotional (2.12 vs. 0.63, p < 0.001). The qualitative findings provided examples and insight into the unmet needs experienced by rss. CONCLUSIONS: First Nations rss had significantly higher anxiety and unmet needs compared with their gp rs counterparts. In addition, different qualitative themes were identified in the groups. Our findings support the development of tailored approaches to survivorship for these populations.


  • Prostate cancer deaths and incident cases among American Indian/Alaska Native men, 1999-2009

    Citation: Hoffman RM, Li J, Henderson JA, Ajani UA, Wiggins C. (2014). Prostate cancer deaths and incident cases among American Indian/Alaska Native men, 1999-2009. doi:10.2105/AJPH.2013.301690.

    PMID: 24754659

    Cancer Sites(s): Prostate

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We linked databases to improve identification of American Indians/Alaska Natives (AI/ANs) in determining prostate cancer death and incidence rates. METHODS: We linked prostate cancer mortality and incidence data with Indian Health Service (IHS) patient records; analyses focused on residents of IHS Contract Health Service Delivery Area (CHSDA) counties. We calculated age-adjusted incidence and death rates for AI/AN and White men for 1999 to 2009; men of Hispanic origin were excluded. RESULTS: Prostate cancer death rates were higher for AI/AN men than for White men. Death rates declined for White men (-3.0% per year) but not for AI/AN men. AI/AN men had lower prostate cancer incidence rates than White men. Incidence rates declined among Whites (-2.2% per year) and AI/ANs (-1.9% per year). CONCLUSIONS: AI/AN men had higher prostate cancer death rates and lower prostate cancer incidence rates than White men. Disparities in accessing health care could contribute to mortality differences, and incidence differences could be related to lower prostate-specific antigen testing rates among AI/AN men.


  • Prostate Cancer Screening Among American Indians and Alaska Natives: The Health and Retirement Survey, 1996-2008

    Citation: Goins RT, Schure MB, Noonan C, Buchwald D. (2015). Prostate Cancer Screening Among American Indians and Alaska Natives: The Health and Retirement Survey, 1996-2008. doi:10.5888/pcd12.150088.

    PMID: 26247423

    Cancer Sites(s): Prostate

    Cancer Continuum(s): Detection, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    INTRODUCTION: Among US men, prostate cancer is the leading malignancy diagnosed and the second leading cause of cancer death. Disparities in cancer screening rates exist between American Indians/Alaska Natives and other racial/ethnic groups. Our study objectives were to examine prostate screening at 5 time points over a 12-year period among American Indian/Alaska Native men aged 50 to 75 years, and to compare their screening rates to African American men and white men in the same age group. METHODS: We analyzed Health and Retirement Study data for 1996, 1998, 2000, 2004, and 2008. Prostate screening was measured by self-report of receipt of a prostate examination within the previous 2 years. Age-adjusted prevalence was estimated for each year. We used regression with generalized estimating equations to compare prostate screening prevalence by year and race. RESULTS: Our analytic sample included 119 American Indian/Alaska Native men (n = 333 observations), 1,359 African American men (n = 3,704 observations), and 8,226 white men (n = 24,292 observations). From 1996 to 2008, prostate screening rates changed for each group: from 57.0% to 55.7% among American Indians/Alaska Natives, from 62.0% to 71.2% among African Americans, and from 68.6% to 71.3% among whites. Although the disparity between whites and African Americans shrank over time, it was virtually unchanged between whites and American Indians/Alaska Natives. CONCLUSION: As of 2008, American Indians/Alaska Natives were less likely than African Americans and whites to report a prostate examination within the previous 2 years. Prevalence trends indicated a modest increase in prostate cancer screening among African Americans and whites, while rates remained substantially lower for American Indians/Alaska Natives.


  • Providing community education: lessons learned from Native Patient Navigators

    Citation: Burhansstipanov, LK, Linda U. Harjo, Lisa Watanabe-Galloway, Shinobu Pingatore, Noel Isham, Debra Duran, Florence Tinka Denny, Loretta Lindstrom, Denise Crawford, Kim. (2014). Providing community education: lessons learned from Native Patient Navigators. 29: 596-606.

    PMID: 25087698

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection, Prevention, Survivorship, Treatment, Diagnosis

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Health Education and Promotion

    Native Navigators and the Cancer Continuum (NNACC) was a community-based participatory research study among five American Indian organizations. The intervention required lay Native Patient Navigators (NPNs) to implement and evaluate community education workshops in their local settings. Community education was a new role for the NPNs and resulted in many lessons learned. NPNs met quarterly from 2008 through 2013 and shared lessons learned with one another and with the administrative team. In July 2012, the NPNs prioritized lessons learned throughout the study that were specific to implementing the education intervention. These were shared to help other navigators who may be including community education within their scope of work. The NPNs identified eight lessons learned that can be divided into three categories: NPN education and training, workshop content and presentation, and workshop logistics and problem-solving. A ninth overarching lesson for the entire NNACC study identified meeting community needs as an avenue for success. This project was successful due to the diligence of the NPNs in understanding their communities' needs and striving to meet them through education workshops. Nine lessons were identified by the NPNs who provided community education through the NNACC project. Most are relevant to all patient navigators, regardless of patient population, who are incorporating public education into navigation services. Due to their intervention and budget implications, many of these lessons also are relevant to those who are developing navigation research.;


  • Qualitative Evaluation of a Colorectal Cancer Education CD-ROM for Community Health Aides/Practitioners in Alaska

    Citation: Cueva, MD, Mark Lanier, Anne Kuhnley, Regina. (2014). Qualitative Evaluation of a Colorectal Cancer Education CD-ROM for Community Health Aides/Practitioners in Alaska. 29: 613-618.

    PMID: 24271842

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Innovative Technology

    Colorectal cancer (CRC) is an important contributor to the cancer burden among Alaska Native people. CRC is the leading incident cancer and the second leading cause of cancer mortality among Alaska Native people. Completing recommended CRC screening procedures has the potential to reduce both CRC incidence and mortality. 'Taking Action Colorectal Health', a multidimensional audiovisual, interactive CD-ROM, incorporates adult education learning principles to provide Alaska's Community Health Aides/Practitioners with timely, medically accurate, and culturally relevant CRC place-based education. Providing this resource on CD-ROM empowers learning within communities and places where people live or choose to learn. The dynamic process of developing, implementing, and evaluating this CRC CD-ROM was informed by a sociocultural approach to share health messages. Within this approach, cultural values, beliefs, and behaviors are affirmed as a place of wisdom and resilience and built upon to provide context and meaning for health messaging. Alaska Native values that honor family, relationships, the land, storytelling, and humor were included in CD-ROM content. Between January and May 2012, 20 interviews were conducted with individuals who had used the CD-ROM. Four categorical themes emerged from analysis of interview transcripts: likeability, utilization, helpfulness, and behavior change. As a result of self-paced learning through stories, movies, and interactive games, respondents reported healthy behavior changes they were making for themselves, with their families and in their patient care practices. This CD-ROM is a culturally based practical course that increased knowledge and activities around colorectal cancer screening by Community Health Aides/Practitioners in Alaska.


  • Quantifying the impact of dissimilar HPV vaccination uptake among Manitoban school girls by ethnicity using a transmission dynamic model

    Citation: Shafer LA, Jeffrey I, Elias B, Shearer B, Canfell K, Kliewer E. (2013). Quantifying the impact of dissimilar HPV vaccination uptake among Manitoban school girls by ethnicity using a transmission dynamic model. doi:10.1016/j.vaccine.2013.07.073.

    PMID: 23933332

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Prevention, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Gardasil, a human papillomavirus (HPV) vaccine, began among grade 6 girls in Manitoba, Canada in 2008. In Manitoba, there is evidence that First Nations, Métis, and Inuit women (FNMI) have higher HPV prevalence, lower invasive cervical cancer (ICC) screening, and higher ICC incidence than all other Manitoban (AOM) women. We developed a mathematical model to assess the plausible impact of unequal vaccination coverage among school girls on future cervical cancer incidence. METHODS: We fit model estimated HPV prevalence and ICC incidence to corresponding empirical estimates. We used the fitted model to evaluate the impact of varying levels of vaccination uptake by FNMI status on future ICC incidence, assuming cervical screening uptake among FNMI and AOM women remained unchanged. RESULTS: Depending on vaccination coverage, estimated ICC incidence by 2059 ranged from 15% to 68% lower than if there were no vaccination. The level of cross-ethnic sexual mixing influenced the impact that vaccination rates among FNMI has on ICC incidence among AOM, and vice versa. The same level of AOM vaccination could result in ICC incidence that differs by up to 10%, depending on the level of FNMI vaccination. Similarly, the same level of FNMI vaccination could result in ICC incidence that differs by almost 40%, depending on the level of AOM vaccination. CONCLUSIONS: If we are unable to equalize vaccination uptake among all school girls, policy makers should prepare for higher levels of cervical cancer than would occur under equal vaccination uptake. Copyright © 2013 Elsevier Ltd. All rights reserved.


  • Race and Gender Disparities in Lung Cancer Incidence Rates, 2001-2010

    Citation: Mowls DS, Campbell J, Beebe LA. (2015). Race and Gender Disparities in Lung Cancer Incidence Rates, 2001-2010.

    PMID: 26817066

    Cancer Sites(s): Lung

    Cancer Continuum(s): Prevention, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVE: Despite progress to reduce the burden of tobacco, disparities in tobacco-related morbidity and mortality remain. This research examines trends in lung cancer incidence rates by race and by gender within race during 2001-2010 in Oklahoma. METHODS: Incident cases of lung cancer were obtained from the Oklahoma State Department of Health public use database. Cases were linked to the Indian Health Service database to reduce misclassification of American Indian race. Annual percent change (APC) was estimated by race and by gender within race to describe rates over time. Rates were considered to increase or decrease if the p-value for trend was < 0.05. RESULTS: Average lung cancer incidence rates were highest among American Indians (105.52 per 100,000) and lowest among whites (78.64 per 100,000). Lung cancer incidence rates declined among the overall white (APC: -2.17%; p = 0.001) and African American (APC: -2.95%; p = 0.003) populations, as well as white (APC: -3.02%; p < .001) and African American males (APC: -3.39%; p = 0.007). Rates increased among American Indian females (APC: 2.20%; p = 0.03). CONCLUSION: Analysis of lung cancer incidence data reveals an inequality in tobacco-related morbidity among American Indians, especially American Indian females. This research suggests a need for more evidence-based tobacco control interventions within the American Indian population.


  • Racial disparities in treatment and survival of hepatocellular carcinoma in native Americans and Hispanics

    Citation: Alkhalili E, Greenbaum A, Luo L, Rodriguez R, Munoz OE, O'Neill J, Nir I, Morris KT. (2017). Racial disparities in treatment and survival of hepatocellular carcinoma in native Americans and Hispanics. doi:10.1016/j.amjsurg.2016.09.033.

    PMID: 28624027

    Cancer Sites(s): Liver

    Cancer Continuum(s): Survivorship, Treatment, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: We investigated if there were any differences in disease presentation and survival between the 3 major ethnicities in New Mexico; non-Hispanic whites (NHW), native Americans (NA), and Hispanics (H). METHODS: A retrospective analysis of patients with hepatocellular carcinoma treated at our institution between 2000 and 2014 was performed. Overall survival was analyzed using the Kaplan-Meier and Cox regression models. RESULTS: We identified 326 patients; 106 (32.5%) NHW, 183 (56.1%) H, and 37 (11.4%) NA. No difference in disease stage, resectability, rate of offering surgery, or chemotherapy was found. Advanced cirrhosis was more common in H and NA than NHW (P = .01). NA had a higher incidence of nonviral hepatocellular carcinoma (P = .0009). NHW were more likely to receive transarterial chemoembolization/radiofrequency than NA or H (P = .04). Median survivals for NA, NHW, H were 24, 14, and 11 months, respectively, (P = .01). CONCLUSIONS: Although there was no difference in disease stage or resectability, NA and H had more advanced cirrhosis and were less likely to undergo transarterial chemoembolization and/or radiofrequency than NHW. NA had the best survival, whereas H had the worst survival.


  • Racial misclassification of American Indians and Alaska Natives by Indian Health Service Contract Health Service Delivery Area

    Citation: Jim MA, Arias E, Seneca DS, Hoopes MJ, Jim CC, Johnson NJ, Wiggins CL. (2014). Racial misclassification of American Indians and Alaska Natives by Indian Health Service Contract Health Service Delivery Area. doi:10.2105/AJPH.2014.301933.

    PMID: 24754617

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: We evaluated the racial misclassification of American Indians and Alaska Natives (AI/ANs) in cancer incidence and all-cause mortality data by Indian Health Service (IHS) Contract Health Service Delivery Area (CHSDA). METHODS: We evaluated data from 3 sources: IHS-National Vital Statistics System (NVSS), IHS-National Program of Cancer Registries (NPCR)/Surveillance, Epidemiology and End Results (SEER) program, and National Longitudinal Mortality Study (NLMS). We calculated, within each data source, the sensitivity and classification ratios by sex, IHS region, and urban-rural classification by CHSDA county. RESULTS: Sensitivity was significantly greater in CHSDA counties (IHS-NVSS: 83.6%; IHS-NPCR/SEER: 77.6%; NLMS: 68.8%) than non-CHSDA counties (IHS-NVSS: 54.8%; IHS-NPCR/SEER: 39.0%; NLMS: 28.3%). Classification ratios indicated less misclassification in CHSDA counties (IHS-NVSS: 1.20%; IHS-NPCR/SEER: 1.29%; NLMS: 1.18%) than non-CHSDA counties (IHS-NVSS: 1.82%; IHS-NPCR/SEER: 2.56%; NLMS: 1.81%). Race misclassification was less in rural counties and in regions with the greatest concentrations of AI/AN persons (Alaska, Southwest, and Northern Plains). CONCLUSIONS: Limiting presentation and analysis to CHSDA counties helped mitigate the effects of race misclassification of AI/AN persons, although a portion of the population was excluded.


  • Randomized controlled dissemination study of community-to-clinic navigation to promote CRC screening: Study design and implications

    Citation: Larkey L, Szalacha L, Herman P, Gonzalez J, Menon U. (2017). Randomized controlled dissemination study of community-to-clinic navigation to promote CRC screening: Study design and implications. doi:10.1016/j.cct.2016.12.006.

    PMID: 27940183

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion, Screening Program

    INTRODUCTION: Regular screening facilitates early diagnosis of colorectal cancer (CRC) and reduction of CRC morbidity and mortality. Screening rates for minorities and low-income populations remain suboptimal. Provider referral for CRC screening is one of the strongest predictors of adherence, but referrals are unlikely among those who have no clinic home (common among poor and minority populations). METHODS/STUDY DESIGN: This group randomized controlled study will test the effectiveness of an evidence based tailored messaging intervention in a community-to-clinic navigation context compared to no navigation. Multicultural, underinsured individuals from community sites will be randomized (by site) to receive CRC screening education only, or education plus navigation. In Phase I, those randomized to education plus navigation will be guided to make a clinic appointment to receive a provider referral for CRC screening. Patients attending clinic appointments will continue to receive navigation until screened (Phase II) regardless of initial arm assignment. We hypothesize that those receiving education plus navigation will be more likely to attend clinic appointments (H1) and show higher rates of screening (H2) compared to those receiving education only. Phase I group assignment will be used as a control variable in analysis of screening follow-through in Phase II. Costs per screening achieved will be evaluated for each condition and the RE-AIM framework will be used to examine dissemination results. CONCLUSION: The novelty of our study design is the translational dissemination model that will allow us to assess the real-world application of an efficacious intervention previously tested in a randomized controlled trial.


  • Rationale for cultural native patient navigators in Indian country

    Citation: Harjo LD, Burhansstipanov L, Lindstrom D. (2014). Rationale for cultural native patient navigators in Indian country. doi:10.1007/s13187-014-0684-0.

    PMID: 25070155

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): N/A

    Intervention Type(s): N/A


  • Readers' Theatre as Cancer Education: An Organic Inquiry in Alaska Awakening Possibilities in a Living Spiral of Understanding

    Citation: Cueva, M. (2010). Readers' Theatre as Cancer Education: An Organic Inquiry in Alaska Awakening Possibilities in a Living Spiral of Understanding. 25: 3-8.

    PMID: 20094830

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Arts Program, Health Education and Promotion

    Organic inquiry, as the qualitative research design method, provided for a richness of data to more fully appreciate how 24 diverse adult learners in Alaska described their experience with Readers' Theatre as cancer education both during a workshop and over time that allowed for reflection and contemplation. Readers' Theatre, as a pathway for cancer education, nurtured healing, renewal, affirmation, and shifts in knowledge, attitudes, and beliefs, which empowered action. Readers' Theatre created a respectful environment for adult learners from diverse ethnic and cultural backgrounds in Alaska to engage in meaningful conversations that awakened possibilities in a living spiral of understanding.


  • Readers' Theatre: A Communication Tool for Colorectal Cancer Screening

    Citation: Cueva, MD, Mark Kuhnley, Regina. (2012). Readers' Theatre: A Communication Tool for Colorectal Cancer Screening. 27: 281-286.

    PMID: 22143891

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Arts Program

    Colorectal cancer (CRC) is the second leading cause of cancer mortality for Alaska Native people, yet it can be almost totally prevented through colonoscopy screenings. Purpose: A 25-minute Readers' Theatre script was developed with and for Alaska Native and American Indian Community Health Workers (CHWs) and the people in their communities to provide CRC screening information, model ways to talk about CRC screening, increase comfort with talking about CRC, and encourage healthy lifestyle choices. Methods: Grounded in Indigenous methodologies, this paper describes the collaborative development, implementation, and evaluation of a CRC Readers' Theatre. Results: 94% (161/172) of participants from 11 Readers' Theatre completed a written evaluation. 90% (145) of participants reported feeling more comfortable talking about CRC and 77% (124) described healthy changes they planned to make. Readers' Theatre was associated with increased knowledge, comfort talking about CRC, and served as a catalyst for positive intent to change behavior.


  • Reality Versus Grant Application Research Plans

    Citation: Burhansstipanov L, Krebs LU, Petereit D, Dignan MB, Ahamed SI, Sargent M, Cina K, Crawford K, Thibeault D, Bordeaux S, Kanekar S, Ahsan GMT, Williams D, Addo I. (2018). Reality Versus Grant Application Research Plans. doi:10.1177/1524839917700892.

    PMID: 28669241

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention, Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    This article describes the implementation of the American Indian mHealth Smoking Dependence Study focusing on the differences between what was written in the grant application compared to what happened in reality. The study was designed to evaluate a multicomponent intervention involving 256 participants randomly assigned to one of 15 groups. Participants received either a minimal or an intense level of four intervention components: (1) nicotine replacement therapy, (2) precessation counseling, (3) cessation counseling, and (4) mHealth text messaging. The project team met via biweekly webinars as well as one to two in-person meetings per year throughout the study. The project team openly shared progress and challenges and collaborated to find proactive solutions to address challenges as compared to what was planned in the original grant application. The project team used multiple strategies to overcome unanticipated intervention issues: (1) cell phone challenges, (2) making difficult staffing decisions, (3) survey lessons, (4) nicotine replacement therapy, (5) mHealth text messages, (6) motivational interviewing counseling sessions, and (7) use of e-cigarettes. Smoking cessation studies should be designed based on the grant plans. However, on the ground reality issues needed to be addressed to assure the scientific rigor and innovativeness of this study.


  • Reducing cancer risk among Native American adolescents

    Citation: Schinke, SPS, B. Cole, K. Contento, I. R. (1996). Reducing cancer risk among Native American adolescents. 25: 146-155.

    PMID: 8860279

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Unknown

    Intervention Type(s): Health Education and Promotion

    Background. This article discusses the development, implementation, and preliminary testing of an intervention to reduce cancer risks through tobacco use prevention and dietary modification among Native American youth in the Northeastern United States. Methods. The intervention outcome study includes a research design and outcome measurement instruments. In collaboration with Native American communities, reservations, and organizations in the Northeastern United States, implementation of the design quantifies the separate and combined effects of a tobacco use prevention and a dietary modification intervention. Results. Native American youths in the tobacco prevention intervention and in the combined tobacco and dietary intervention increased their knowledge of tobacco facts and their awareness of the motives of tobacco advertising, and showed higher ratings for an ability to resist peer pressure and to refuse offers of tobacco use between pretest and posttest. Youths in the combined intervention were significantly less apt to report smoking of any kind. Youths in the tobacco use prevention-only condition reported significantly less smoking than their counterparts in the dietary modification-only condition and control condition on 4 of 8 measurement items, As for dietary variables, pretest to posttest measurement scores showed that, after receiving the curriculum, youths in the dietary modification intervention and in the combined intervention improved their knowledge of the health implications of consuming dietary fat, fiber, fruits, and vegetables. Youths in the dietary modification and combined intervention also improved their scores of knowledge related to cancer risk-reducing nutritional practices, cultural dietary habits, and healthy food choices available for Native American cultures. Youths in the dietary modification-only condition report significantly increasing their consumption of complex carbohydrates and significantly decreasing their fat intake between pretest and posttest occasions. Conclusions. Data from this longitudinal study suggest the value of the FACETS curriculum for helping Native American youth reduce their risks for cancer associated with tobacco use and dietary preference and consumption patterns. In particular, results indicate the enhanced effects of the combined tobacco use prevention and dietary modification intervention for preventing tobacco use and for improving youths' knowledge and attitudes with regard to tobacco use and diet. Further, the study demonstrates the value of collaborating with Native American organizations to design a cancer risk-reducing curriculum and to implement tests of that curriculum. (C) 1996 Academic Press, Inc.


  • Reducing Cancer Screening Disparities in Medicare Beneficiaries Through Cancer Patient Navigation

    Citation: Braun, KLT, William L., Jr. Domingo, Jermy-Leigh B. Allison, Amanda L. Ponce, Avette Kamakana, P. Haunani Brazzel, Sandra S. Aluli, N. Emmett Tsark, JoAnn U. (2015). Reducing Cancer Screening Disparities in Medicare Beneficiaries Through Cancer Patient Navigation. 63: 365-370.

    PMID: 25640884

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Health Worker

    Significant racial disparities in cancer mortality are seen between Medicare beneficiaries. A randomized controlled trial tested the use of lay navigators (care managers) to increase cancer screening of Asian and Pacific Islander Medicare beneficiaries. The study setting was Molokai General Hospital on the island of Molokai, Hawaii, which was one of six sites participating in the Cancer Prevention and Treatment Demonstration sponsored by the Centers for Medicare and Medicaid Services. Between 2006 and 2009, 488 Medicare beneficiaries (45% Hawaiian, 35% Filipino, 11% Japanese, 8% other) were randomized to have a navigator help them access cancer screening services (experimental condition, n=242) or cancer education (control condition, n=246). Self-reported data on screening participation were collected at baseline and exit from the study, and differences were tested using chi-square. Groups were similar in demographic characteristics and baseline screening prevalence of breast, cervical, prostate, and colorectal cancers. At study exit, 57.0% of women in the experimental arm and 36.4% of controls had had a Papanicolaou test in the past 24months (P=.001), 61.7% of women in the experimental arm and 42.4% of controls had had a mammogram in the past 12months (P=.003), 54.4% of men in the experimental arm and 36.0% of controls had had a prostate-specific antigen test in the past 12months (P=.008), and 43.0% of both sexes in the experimental arm and 27.2% of controls had had a flexible sigmoidoscopy or colonoscopy in the past 5years (P<.001). Findings suggest that navigation services can increase cancer screening in Medicare beneficiaries in groups with significant disparities.


  • Regional differences in breast cancer biomarkers in american Indian and Alaska native women

    Citation: Kaur JS, Vierkant RA, Hobday T, Visscher D. (2014). Regional differences in breast cancer biomarkers in american Indian and Alaska native women. doi:10.1158/1055-9965.EPI-13-0738.

    PMID: 24609850

    Cancer Sites(s): Breast

    Cancer Continuum(s): Prevention

    Intervention Site(s): Biologic

    Intervention Type(s): N/A

    BACKGROUND: Breast cancer is not a homogeneous disease, but several different and unique subtypes defined by gene expression analysis. Incidence and mortality rates vary by almost 3-fold between Alaska (highest) and the Southwestern tribes (lowest). We hypothesized that these differences may be due to, in part, varying levels of biologic tumor aggressiveness. METHODS: A biorepository of the North Central Cancer Treatment Group with 95 cases of American Indian and Alaska Native (AIAN) women with adenocarcinoma of the breast surgically treated from 1990 to 2000 was tested for several biomarkers. Comparison distributions of biomarker values across state of residence using t tests for continuous (p53, MIB-1, cyclin D) and ordinally scaled markers [EGF receptor (EGFR), BCL-2, Her2] and ?(2) tests of significance for binary markers [estrogen receptor (ER), progesterone receptor (PR)] were done. RESULTS: Significant regional differences in some biomarker expression levels were seen. No increase was observed in triple-negative breast cancer or Her2 overexpression in these cases. CONCLUSIONS: Despite a 3-fold difference in breast cancer mortality in Alaska Native versus Southwestern American Indians, standard biomarkers such as ER, PR, and Her2 neu expression did not explain the disparity. IMPACT: There is a need for research to understand the biologic basis of breast cancer disparities in AIAN women. Potential for a prospective trial will be explored with tribes. ©2014 AACR.


  • Relationships Between Smoking Behaviors and Cotinine Levels Among Two American Indian Populations With Distinct Smoking Patterns

    Citation: Tanner JA, Henderson JA, Buchwald D, Howard BV, Henderson PN, Tyndale RF. (2018). Relationships Between Smoking Behaviors and Cotinine Levels Among Two American Indian Populations With Distinct Smoking Patterns. doi:10.1093/ntr/ntx114.

    PMID: 28549179

    Cancer Sites(s): Lung

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    INTRODUCTION: Smoking prevalence, cigarettes per day (CPD), and lung cancer incidence differ between Northern Plains (NP) and Southwest (SW) American Indian populations. We used cotinine as a biomarker of tobacco smoke exposure to biochemically characterize NP and SW smokers and nonsmokers and to investigate factors associated with variation in tobacco exposure. METHODS: American Indians (N = 636) were recruited from two different tribal populations (NP and SW) as part of a study conducted as part of the Collaborative to Improve Native Cancer Outcomes P50 project. For each participant, a questionnaire assessed smoking status, CPD, second-hand smoke exposure, and traditional ceremonial tobacco use; plasma and/or salivary cotinine was measured. RESULTS: Cotinine levels were (mean ± 95% confidence interval [CI]) 81.6 ± 14.1 and 21.3 ± 7.3 ng/ml among NP smokers and non-mokers, respectively, and 44.8 ± 14.4 and 9.8 ± 5.8 ng/ml among SW smokers and nonsmokers, respectively. Cotinine levels correlated with CPD in both populations (p < .0001). Cotinine ?15 ng/ml was measured in 73.4% of NP smokers and 47.8% of SW smokers and in 19.0% of NP nonsmokers and 10.9% of SW nonsmokers. Ceremonial traditional tobacco use was associated with higher cotinine among NP smokers only (p = 0.004). Second-hand smoke exposure was associated with higher cotinine among NP non-smokers (P < 0.02). More secondhand smoke exposure was associated with smoking more CPD in both populations (p = 0.03-0.29). Linear regression modeling mirrored these findings. CONCLUSIONS: High prevalence of smoking in the Northern Plains and high cotinine levels among nonsmokers in both regions highlights the tribal populations' risk for tobacco-related disease. IMPLICATIONS: There is a high prevalence of smoking in Northern Plains American Indians. Among Northern Plains and Southwest nonsmokers, relatively high cotinine levels, representative of high tobacco exposure, suggest considerable exposure to second-hand smoke. It is critical to highlight the extent of second-hand smoke exposure among the Northern Plains and Southwest American Indians and to enhance efforts to initiate smoke-free policies in tribal communities, which are not subject to state-level polices.


  • Relative validation of a short questionnaire to assess the dietary habits of pregnant American Indian women

    Citation: Hartman TJ, Elliott AJ, Angal J, Block T, Ferranti EP, Mitchell DC, Nickleach DC, Norris JC, Breslow RA. (2016). Relative validation of a short questionnaire to assess the dietary habits of pregnant American Indian women. doi:10.1002/fsn3.440.

    PMID: 28572950

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    The objective of this study was to compare a short dietary screener developed to assess diet quality with interviewer-administered telephone 24-hour dietary recalls in a population of pregnant Northern Plains (NP) American Indian women. Participants were recruited from NP clinical sites of the Prenatal Alcohol and SIDS and Stillbirth (PASS) Network, as part of a large, prospective, multidisciplinary study. Prenatal PASS participants who enrolled prior to 24 weeks gestation were eligible to participate. Repeated 24-hour dietary recalls were collected using the Nutrition Data System for Research (NDSR) software and a short dietary screener was administered intended to capture usual dietary intake during pregnancy. The available recalls were averaged across days for analysis. Items were grouped from the recalls to match the food group data estimates for the screener (e.g., total vegetables, total fruit, total dairy, total and whole grains). Deattenuated Pearson correlation coefficients were calculated between the two data sources after correcting for the within-person variation in the 24-hour recall data. A total of 164 eligible women completed the screener and at least two 24-hour dietary recalls and were included in the analyses. Pearson deattenuated correlation coefficients between the diet screener and the dietary recalls for the majority of food groups were 0.40 or higher. This short diet screener to assess usual diet appears to be a valid instrument for use in evaluating diet quality among pregnant American Indian women.


  • Research for improved health: variability and impact of structural characteristics in federally funded community engaged research

    Citation: Pearson CR, Duran B, Oetzel J, Margarati M, Villegas M, Lucero J, Wallerstein N. (2015). Research for improved health: variability and impact of structural characteristics in federally funded community engaged research. doi:10.1353/cpr.2015.0010.

    PMID: 25981421

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Although there is strong scientific, policy, and community support for community-engaged research (CEnR)-including community-based participatory research (CBPR)-the science of CEnR is still developing. OBJECTIVE: To describe structural differences in federally funded CEnR projects by type of research (i.e., descriptive, intervention, or dissemination/policy change) and race/ethnicity of the population served. METHODS: We identified 333 federally funded projects in 2009 that potentially involved CEnR, 294 principal investigators/project directors (PI/PD) were eligible to participate in a key informant (KI) survey from late 2011 to early 2012 that asked about partnership structure (68% response rate). RESULTS: The National Institute on Minority Health & Health Disparities (19.1%), National Cancer Institute (NCI; 13.3%), and the Centers for Disease Control and Prevention (CDC; 12.6%) funded the most CEnR projects. Most were intervention projects (66.0%). Projects serving American Indian or Alaskan Native (AIAN) populations (compared with other community of color or multiple-race/unspecified) were likely to be descriptive projects (p<.01), receive less funding (p<.05), and have higher rates of written partnership agreements (p<.05), research integrity training (p<.05), approval of publications (p<.01), and data ownership (p<.01). AIAN-serving projects also reported similar rates of research productivity and greater levels of resource sharing compared with those serving multiple-race/unspecified groups. CONCLUSIONS: There is clear variability in the structure of CEnR projects with future research needed to determine the impact of this variability on partnering processes and outcomes. In addition, projects in AIAN communities receive lower levels of funding yet still have comparable research productivity to those projects in other racial/ethnic communities.


  • Research on Indigenous Elders: From Positivistic to Decolonizing Methodologies

    Citation: Braun KL, Browne CV, Ka‘opua LS, MSW, Kim BJ, MSW, PhD, Mokuau N. (2014). Research on Indigenous Elders: From Positivistic to Decolonizing Methodologies doi:10.1093/geront/gnt067.

    PMID: 559329

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Methods

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Although indigenous peoples have lower life expectancies than the social majority populations in their countries, increasing numbers of indigenous people are living into old age. Research on indigenous elders is informed by a number of research traditions. Researchers have mined existing data sets to compare characteristics of indigenous populations with non-indigenous groups, and these findings have revealed significant disparities experienced by indigenous elders. Some investigators have attempted to validate standardized research tools for use in indigenous populations. Findings from these studies have furthered our knowledge about indigenous elders and have highlighted the ways in which tools may need to be adapted to better fit indigenous views of the constructs being measured. Qualitative approaches are popular, as they allow indigenous elders to tell their stories and challenge non-indigenous investigators to acknowledge values and worldviews different from their own. Recently, efforts have extended to participatory and decolonizing research methods, which aim to empower indigenous elders as researchers. Research approaches are discussed in light of the negative experiences many indigenous peoples have had with Eurocentric research. Acknowledgment of historical trauma, life-course perspectives, phenomenology, and critical gerontology should frame future research with, rather than on, indigenous elders.


  • Risk of end-stage liver disease, hepatocellular carcinoma, and liver-related death by fibrosis stage in the hepatitis C Alaska Cohort

    Citation: Bruden DJT, McMahon BJ, Townshend-Bulson L, Gounder P, Gove J, Plotnik J, Homan C, Hewitt A, Barbour Y, Spradling PR, Simons BC, McArdle S, Bruce M. (2017). Risk of end-stage liver disease, hepatocellular carcinoma, and liver-related death by fibrosis stage in the hepatitis C Alaska Cohort. doi:10.1002/hep.29115.

    PMID: 28195349

    Cancer Sites(s): Liver

    Cancer Continuum(s): Prevention, Survivorship, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Long-term prospective studies of the outcomes associated with hepatitis C virus (HCV) infection are rare and critical for assessing the potential impact of HCV treatment. Using liver biopsy as a starting point, we analyzed the development of end-stage liver disease (ESLD), hepatocellular carcinoma (HCC), and liver-related death (LRD) according to fibrosis stage among a cohort of American Indian/Alaska Native persons in Alaska. Persons were classified as having no/mild (Ishak = 0,1), moderate (Ishak = 2), or severe (Ishak = 3,4) fibrosis or cirrhosis (Ishak = 5,6). We examined time until development of ESLD, HCC, and LRD and report survival probabilities at 3, 5, 7, and 10 years. Of 407 persons, 39% (n = 150) had no/mild fibrosis, 32% (n = 131) had moderate fibrosis, 22% (n = 88) had severe fibrosis, and 9% (n = 38) had cirrhosis. The average time of follow-up was 7.3 years. Within 5 years of biopsy, 1.7% (95% confidence interval [CI]: 0.4-6.8) of persons with no/mild fibrosis developed ESLD compared with 7.9% (95% CI, 4.0-15.2), 16.4% (95% CI, 9.6-27.2), and 49.0% (95% CI, 33.0-67.7) with moderate, severe fibrosis, and cirrhosis, respectively (P < 0.01). The 5-year outcome of HCC was 1.0% (95% CI, 0.1-7.0), 1.0% (95% CI, 0.1-6.6), 1.1% (95% CI, 0.2-7.7), and 13.4% (95% CI, 4.4-36.7) among persons with no/mild fibrosis, moderate fibrosis, severe fibrosis, and cirrhosis, respectively (P < 0.01). Five years after biopsy, 0.0% (95% CI, 0.0-14.8) of persons with no/mild fibrosis had suffered an LRD compared with 1.0% (95% CI, 0.2-7.5) of persons with moderate fibrosis, 4.7% (95% CI, 1.5-14.1) with severe fibrosis, and 16.3% (95% CI, 7.0-35.1) with cirrhosis (P < 0.01). CONCLUSION: For prevention of HCC, LRD, and ESLD in the short term, HCV therapy should target individuals who have more than mild fibrosis. (Hepatology 2017;66:37-45). © 2017 by the American Association for the Study of Liver Diseases. This article has been contributed to by U.S. Government employees and their work is in the public domain in the USA.


  • Role of telehealth/videoconferencing in managing cancer pain in rural American Indian communities

    Citation: Haozous, ED, Ardith Z. Demiris, George Eaton, Linda H. Towle, Cara Kundu, Anjana Buchwald, Dedra. (2012). Role of telehealth/videoconferencing in managing cancer pain in rural American Indian communities. 21: 219-223.

    PMID: 22271543

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Health-Care System

    Intervention Type(s): Health Education and Promotion, Innovative Technology

    Objectives: This project is aimed at determining the feasibility and effect of using videoconferencing to deliver cancer-related pain management education and case consultation to health care providers in rural AI/AN communities. Methods: The project provided four educational sessions and nine case conferences to health care providers at tribal clinics in Washington State and Alaska using videoconferencing with pain experts at the University of Washington. A cross-sectional, descriptive study design was used to survey the participating providers. Measures included satisfaction with the telehealth system and self-perceived competence in pain management. Results: Fifty-two providers from 11 sites attended the educational sessions. Ninety-three providers from 16 sites participated in the case conferences. Case conference participants scored significantly higher on perceived competence in treating pain compared with clinic providers who did not attend. Educational session participants and case conference participants both reported a high level of satisfaction with videoconferencing. Conclusions: Telehealth is a feasible and effective way to deliver cancer-related pain management education and increase competence among rural health care providers. Copyright (C) 2010 John Wiley & Sons, Ltd.


  • Satisfaction with cancer care among American Indian and Alaska Natives in Oregon and Washington State: a qualitative study of survivor and caregiver perspectives

    Citation: Hohl S, Molina Y, Koepl L, Lopez K, Vinson E, Linden H, Ramsey S. (2016). Satisfaction with cancer care among American Indian and Alaska Natives in Oregon and Washington State: a qualitative study of survivor and caregiver perspectives. doi:10.1007/s00520-015-3041-x.

    PMID: 26638004

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    PURPOSE: To better understand satisfaction with care among American Indian and Alaska Native (AI/AN) persons with cancer, we explored dimensions of the provider relationship that contributed to satisfaction among caregivers and survivors who received cancer treatment in Oregon and Washington State. METHODS: Between November 2011 and April 2013, the project team interviewed 11 caregivers and 71 AI/AN cancer survivors residing in Oregon and Washington State. Interview questions aimed to elicit participant experiences with care providers and factors associated with cancer care satisfaction. Interviews were analyzed using an inductive content analysis approach in which concepts were identified and themes derived from interview data. RESULTS: Three overarching themes, each with two sub-themes, emerged from the data: (1) universal factors: bolstering understanding, involvement, and empathy in care; (2) minority-specific factors: incorporating culture and community into care; and (3) AI/AN-unique factors: interacting with Indian health clinics and Indian Health Service (IHS). CONCLUSIONS: The results of our study suggest that satisfaction with care among survivors and their caregivers must be examined within the context of culture and community, particularly among minority patients. Our study demonstrates providers' critical role in ensuring AI/AN patients emerge satisfied with cancer treatment by honoring their AI/AN-specific needs, such as respect for integration of traditional healing modalities and navigation of specialty care coordination.


  • Self-administered versus provider-directed sampling in the Anishinaabek Cervical Cancer Screening Study (ACCSS): a qualitative investigation with Canadian First Nations women

    Citation: Zehbe I, Wakewich P, King AD5, Morrisseau K, Tuck C. (2017). Self-administered versus provider-directed sampling in the Anishinaabek Cervical Cancer Screening Study (ACCSS): a qualitative investigation with Canadian First Nations women. doi:10.1136/bmjopen-2017-017384.

    PMID: 28864487

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection, Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: While (Pap)anicolaou screening has helped to decrease cervical cancer incidence in Canada, First Nations women continue to have a higher burden and mortality relative to mainstream populations. Many First Nations women may feel uncomfortable with the invasiveness of this test, contributing to this statistic. Implemented from 2009 to 2015 in 10 Northwest Ontario First Nations communities, the Anishinaabek Cervical Cancer Screening Study (ACCSS) uniquely addressed this Indigenous health inequity through a mixed methods approach. OBJECTIVE: Our goal was to offer an alternative test which the women could do themselves: human papillomavirus (HPV) testing based on self-sampling. We investigated whether First Nations women preferred HPV self-sampling over healthcare provider (HCP)-administered Pap screening. METHODS: Participatory action researchinformed by the ethical space concept has guided all stages of the ACCSS. We conducted qualitative interviews with 16 HCPs and 8 focus group discussions with 69 female community members followed by a cluster-randomised controlled trial (RCT). Here, we draw on the qualitative field data and an end-of-study community update gathering to disseminate and contextualise research findings. Informant data were evaluated using thematic analysis. RESULTS: We discuss factors influencing participants' strong preference for HPV self-sampling over physician-conducted Pap screening. Key arguments included enhanced accessibility and more personal control, less physical and emotional discomfort and fewer concerns regarding privacy of test results. For future implementation of HPV self-sampling, study participants emphasised the need for more culturally sensitive education addressed to community members of all genders, starting at school, clarifying that HPV causes cervical cancer. Further, HPV infection should be de-stigmatised by accentuating that it affects men and women alike. CONCLUSION: Here we show that self-sampling in conjunction with community engagement and culturally sensitive education and could be a viable option for underscreened Canadian First Nations women. These informant data echo our previous RCT results. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.


  • Serum micronutrients and cervical dysplasia in Southwestern American Indian women

    Citation: Yeo, ASSS, M. A. Montoya, G. Masuk, M. van Asselt-King, L. Becker, T. M. (2000). Serum micronutrients and cervical dysplasia in Southwestern American Indian women. 38: 141-150.

    PMID: 11525590

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Biologic

    Intervention Type(s): Screening Program

    We carried out a clinic-based case-control study to assess serum micronutrients as risk factors for cervical dysplasia among Southwestern American Indian women, a group with high rates of cervical preinvasive lesions. Cases were American Indian women with biopsy proven cervical intraepithelial neoplasia (CIN I or CIN II/III). Controls were from the same Indian Health Service clinics with normal cervical epithelium. We interviewed women about histories of sexually transmitted diseases, sexual behavior, diet, hygienic practices, cigarette smoking, and reproductive factors. Laboratory assays included serum for retinol (vitamin A), ascorbic acid (vitamin C), alpha -tocopherol (vitamin E), and red blood cell folate levels, DNA for human papillomavirus (HPV) typing, and tests for other sexually transmitted diseases. The strongest risks for cervical dysplasia were associated with cervical HPV infection [odds ratio (OR) = 3.2, 95% confidence interval (CI) = 2.2-4.6 and OR = 7.9, 95% CI = 4.8-13.1 for CIN I and CIN II/III, respectively]. With adjustments made for HPV infection and other relevant confounders, subjects in the lowest serum retinol quartile were at increased risk of CIN I compared with women in the highest quartile (OR = 2.3, 95% CI = 1.3-4.1). The data suggest that low serum a-tocopherol was associated with CIN II/III, although the adjusted OR was not statistically significant (OR = 2.0, 95% CI = 0.9-4.8). Low serum ascorbic acid and red blood cell folate were not associated with cervical dysplasia.


  • Shared and unshared barriers to cancer symptom management among urban and rural American Indians

    Citation: Itty TL, Hodge FS, Martinez F. (2014). Shared and unshared barriers to cancer symptom management among urban and rural American Indians. doi:10.1111/jrh.12045.

    PMID: 24689545

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    PURPOSE: Before the end of the 20th century, American Indians (AIs) primarily resided in nonmetropolitan areas. Shifting demographic trends have led to a majority of AIs now living in urban areas, leading to new health care barriers for AIs. AIs experience the poorest survival from all cancers combined compared to all other racial groups. Identifying and classifying barriers to cancer care may facilitate supportive interventions and programs to improve access and treatment. METHODS: A 5-year cancer symptom management project targeted AIs in the Southwest. The first phase of the randomized clinical trial consisted of 13 focus groups (N = 126) of cancer patients/survivors and their caregivers. Discussions explored existing and perceived barriers and facilitators to cancer symptom management and cancer treatment. FINDINGS: Significant barriers to cancer-related care were found among urban AIs, as compared to their rural counterparts. Barriers were classified within 4 subgroups: (1) structural, (2) physical, (3) supportive, or (4) cultural. Urban AIs reported barriers that are both structural and physical (inadequate access to care and public transportation) and supportive (lack of support, resources and technology, and less access to traditional healing). Rural participants reported communication and culture barriers (language differences, illness beliefs, and low levels of cancer care knowledge), as well as unique structural, physical, and supportive barriers. CONCLUSION: It is important to identify and understand culturally and geographically influenced barriers to cancer treatment and symptom management. We provide recommendations for strategies to reduce health disparities for AIs that are appropriate to their region of residence and barrier type. © 2013 National Rural Health Association.


  • Skin Cancer Risk Reduction Behaviors Among American Indian and Non-Hispanic White Persons in Rural New Mexico

    Citation: Logue ME, Hough T, Leyva Y, Kee J, Berwick M. (2016). Skin Cancer Risk Reduction Behaviors Among American Indian and Non-Hispanic White Persons in Rural New Mexico. doi:10.1001/jamadermatol.2016.3280.

    PMID: 27626611

    Cancer Sites(s): Skin

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)


  • Smoking abstinence-related expectancies among American Indians, African Americans, and women: potential mechanisms of tobacco-related disparities

    Citation: Hendricks PS, Westmaas JL, Ta Park VM, Thorne CB, Wood SB, Baker MR, Lawler RM, Webb Hooper M, Delucchi KL, Hall SM. (2014). Smoking abstinence-related expectancies among American Indians, African Americans, and women: potential mechanisms of tobacco-related disparities. doi:10.1037/a0031938.

    PMID: 23528192

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Research has documented tobacco-related health disparities by race and gender. Prior research, however, has not examined expectancies about the smoking cessation process (i.e., abstinence-related expectancies) as potential contributors to tobacco-related disparities in special populations. This cross-sectional study compared abstinence-related expectancies between American Indian (n = 87), African American (n = 151), and White (n = 185) smokers, and between women (n = 231) and men (n = 270) smokers. Abstinence-related expectancies also were examined as mediators of race and gender relationships with motivation to quit and abstinence self efficacy. Results indicated that American Indians and African Americans were less likely than Whites to expect withdrawal effects, and more likely to expect that quitting would be unproblematic. African Americans also were less likely than Whites to expect smoking cessation interventions to be effective. Compared with men, women were more likely to expect withdrawal effects and weight gain. These expectancy differences mediated race and gender relationships with motivation to quit and abstinence self-efficacy. Findings emphasize potential mechanisms underlying tobacco-related health disparities among American Indians, African Americans, and women and suggest a number of specific approaches for targeting tobacco dependence interventions to these populations.


  • Smoking-attributable mortality in American Indians: findings from the Strong Heart Study

    Citation: Zhang M, An Q, Yeh F, Zhang Y, Howard BV, Lee ET, Zhao J. (2015). Smoking-attributable mortality in American Indians: findings from the Strong Heart Study. doi:10.1007/s10654-015-0031-8

    PMID: 25968176

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Cigarette smoking is the leading preventable cause of death worldwide. American Indians have the highest proportion of smoking in the United States. However, few studies have examined the impact of cigarette smoking on disease mortality in this ethnically important but traditionally understudied minority population. Here we estimated the association of cigarette smoking with cardiovascular disease (CVD), cancer and all-cause mortality in American Indians participating in the Strong Heart Study, a large community-based prospective cohort study comprising of 4549 American Indians (aged 45-74 years) followed for about 20 years (1989-2008). Hazard ratio and population attributable risk (PAR) associated with cigarette smoking were estimated by Cox proportional hazard model, adjusting for sex, study site, age, educational level, alcohol consumption, physical activity, BMI, lipids, renal function, hypertension or diabetes status at baseline, and interaction between current smoker and study site. We found that current smoking was significantly associated with cancer mortality (HR 5.0, [1.9-13.4]) in men, (HR 3.9 [1.6-9.7] in women) and all-cause mortality (HR 1.8, [1.2-2.6] in men, HR 1.6, [1.1-2.4] in women). PAR for cancer and all-cause mortality in men were 41.0 and 18.4 %, respectively, whereas the corresponding numbers in women were 24.9 and 10.9 %, respectively. Current smoking also significantly increases the risk of CVD deaths in women (HR 2.2 [1.1, 4.4]), but not men (HR 1.2 [0.6-2.4]). PAR for CVD mortality in women was 14.9 %. In summary, current smoking significantly increases the risk of CVD (in women), cancer and all-cause mortality in American Indians, independent of known risk factors. Culturally specific smoking cessation programs are urgently needed to reduce smoking-related premature deaths.


  • Sorting it Out: Pile Sorting as a Mixed Methodology for Exploring Barriers to Cancer Screening

    Citation: Yeh HW, Gajewski BJ, Perdue DG, Cully A, Cully L, Greiner KA, Choi WS, Daley CM. (2014). Sorting it Out: Pile Sorting as a Mixed Methodology for Exploring Barriers to Cancer Screening. doi:10.1007/s11135-013-9908-3.

    PMID: 25143659

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Methods

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    We discuss a mixed methodology for analyzing pile sorting data. We created a list of 14 barriers to colon cancer screening and recruited 18, 13, and 14 participants from three American Indian (AI) communities to perform pile sorting. Quantitative data were analyzed by cluster analysis and multidimensional scaling. Differences across sites were compared using permutation bootstrapping. Qualitative data collected during sorting were compiled by AI staff members who determined names for the clusters found in quantitative analysis. Results showed 5 clusters of barriers in each site although barriers in the clusters varied slightly across sites. Simulation demonstrated type I error rates around the nominal 0.05 level whereas power depended on the numbers of clusters, and between and within cluster variability.


  • Spirituality in cancer survivorship with First Nations people in Canada

    Citation: Gifford W, Thomas O, Thomas R, Grandpierre V, Ukagwu C. (2018). Spirituality in cancer survivorship with First Nations people in Canada. doi:10.1007/s00520-018-4609-z.

    PMID: 30564938

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: Advancements in cancer survivorship care have shown that holistic approaches, tailored to people's unique survivorship needs, can decrease cancer burden and enhance well-being and quality of life. The purpose of this study was to explore the meanings of spirituality in cancer survivorship for First Nations people, the largest Indigenous population in Canada, and describe how spiritual practices are incorporated into healing. METHODS: This study is part of a larger arts-based project about cancer survivorship with First Nations people. Thirty-one cancer survivors discussed spirituality as part of their cancer survivorship experiences. Data were generated through sharing sessions (n?=?8) and individual interviews (n?=?31). Qualitative descriptive analysis was conducted. RESULTS: Three themes emerged about the meaning of spirituality in cancer survivorship. Spirituality was expressed as a complex phenomenon that (1) interconnected self with traditional roots and culture, (2) merged the body and mind, and (3) gave meaning, strength, and faith in the cancer journey. First Nations people incorporated spirituality into cancer survivorship by giving thanks, attending places of spiritual connectedness, singing, praying, speaking to the Creator, and engaging the sun and moon. CONCLUSION: First Nations cancer survivors have viewed cancer as an opportunity for emotional and spiritual growth that enabled healing. Understanding the role of spirituality in cancer survivorship is important to develop and deliver culturally safe health services that reduce the burden of cancer and ultimately improve outcomes for First Nations people in Canada.


  • Storytelling: A Qualitative Tool to Promote Health Among Vulnerable Populations

    Citation: Palacios JF, Salem B, Hodge FS, Albarrán CR, Anaebere A, Hayes-Bautista TM. (2015). Storytelling: A Qualitative Tool to Promote Health Among Vulnerable Populations. doi:10.1177/1043659614524253.

    PMID: 24829264

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Arts Program

    Storytelling is a basic cultural phenomenon that has recently been recognized as a valuable method for collecting research data and developing multidisciplinary interventions. The purpose of this article is to present a collection of nursing scholarship wherein the concept of storytelling, underpinned by cultural phenomena, is explored for data collection and intervention. A conceptual analysis of storytelling reveals key variables. Following a brief review of current research focused on storytelling used within health care, three case studies among three vulnerable populations (American Indian teen mothers, American Indian cancer survivors, and African American women at risk for HIV/AIDS) demonstrate the uses of storytelling for data collection and intervention. Implications for transcultural nursing regarding storytelling are discussed. © The Author(s) 2014.


  • Strategies for Increasing Cervical Cancer Screening Amongst First Nations Communities in Northwest Ontario, Canada

    Citation: Maar M, Wakewich P, Wood B, Severini A, Little J, Burchell AN, Ogilvie G, Zehbe I. (2016). Strategies for Increasing Cervical Cancer Screening Amongst First Nations Communities in Northwest Ontario, Canada. doi:10.1080/07399332.2014.959168.

    PMID: 25375661

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    The high burden of cervical cancer in Indigenous populations worldwide is due to underscreening and inadequate follow-up. Using qualitative, participatory action research, we interviewed health care staff to identify ways to increase screening recruitment in First Nations communities in Northwest Ontario, Canada. Our findings suggest the value of a multilevel social-ecological model to promote behavioral changes at the community, health care service and stakeholder, and decision-maker level. Participants emphasized the central role of First Nations women as nurturers of life and for the well-being of their family members. They stressed the importance of building awareness and motivation for cervical cancer screening through various activities including continuous education, hosting screening events specifically for women, improving the attitude and service of health care providers, and promoting screening tools and policies that complement and are respectful of First Nations women.


  • Strategies to increase breast and cervical cancer screening among Hawaiian, Pacific Islander, and Filipina women in Hawai'i

    Citation: Aitaoto, NT, Joann U. Tomiyasu, Danette Wong Yamashita, Barbara A. Braun, Kathryn L. (2009). Strategies to increase breast and cervical cancer screening among Hawaiian, Pacific Islander, and Filipina women in Hawai'i. 68: 215-222.

    PMID: 19842363

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Screening Program

    The Hawai'i Breast and Cervical Cancer Control Program (BCCCP) offers free mammograms and Pap smears to women who are uninsured or underinsured through a statewide provider network. Native Hawaiians, Pacific Islanders and Filipinas are priority populations for this program, and BCCCP providers are required through contract with the Hawai'i Department of Health to utilize half of their allotted mammograms and Pap smears for eligible women from these groups. To identify strategies for increasing use by these groups of mammographyand Pap smear screening services through BCCCP, we held focus groups with women who could potentially use BCCCP services, and we conducted key informant interviews with 9 of Hawai'i's 11 BCCCP providers and 9 non-BCCCP outreach workers serving these populations. Findings led to recommendations for promoting awareness of BCCCP and enhancing outreach to Native Hawaiian, Pacific Islander and Filipina communities in Hawai'i.;


  • Strengthening Breast and Cervical Cancer Control Through Partnerships: American Indian and Alaska Native Women and the National Breast and Cervical Cancer Early Detection Program

    Citation: Espey, DC, Georgina Flagg, T'Ronda Landis, Kate Henderson, Jeffrey A. Benard, Vicki B. Royalty, Janet E. (2014). Strengthening Breast and Cervical Cancer Control Through Partnerships: American Indian and Alaska Native Women and the National Breast and Cervical Cancer Early Detection Program. 120: 2557-2565.

    PMID: 25099898

    Cancer Sites(s): Breast, Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Screening Program

    The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) has played a critical role in providing cancer screening services to American Indian and Alaska Native (AI/ANs) women and strengthening tribal screening capacity. Since 1991, the NBCCEDP has funded states, tribal nations, and tribal organizations to develop and implement organized screening programs. The ultimate goal is to deliver breast and cervical cancer screening to women who do not have health insurance and cannot afford to pay for these services. The delivery of clinical services is supported through complementary program efforts such as professional development, public education and outreach, and patient navigation. This article seeks to describe the growth of NBCCEDP's tribal commitment and the unique history and aspects of serving the AI/AN population. The article describes: 1) how this program has demonstrated success in improving screening of AI/AN women; 2) innovative partnerships with the Indian Health Service, state programs, and other organizations that have improved tribal public health infrastructure; and 3) the evolution of Centers for Disease Control and Prevention work with tribal communities. (C) 2014 American Cancer Society.


  • Successful Implementation of a Telemedicine-Based Counseling Program for High-Risk Patients With Breast Cancer

    Citation: Pruthi, SS, Kevin J. Malagrino, Gerald D., Jr. Chawla, Kashmira S. LaRusso, Nicholas F. Kaur, Judith S. (2013). Successful Implementation of a Telemedicine-Based Counseling Program for High-Risk Patients With Breast Cancer. 88: 68-73.

    PMID: 23274020

    Cancer Sites(s): Breast, Cervical

    Cancer Continuum(s): Prevention

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Health Worker, Innovative Technology

    An interactive audio and video telemedicine feasibility program was established to provide counseling on breast cancer risk-reducing strategies for underserved, high-risk Alaskan native women through a collaboration among the Alaska Native Medical Center, the Mayo Clinic Breast Clinic, Mayo's Center for Innovation, and the Alaska Federal Health Care Access Network. The telemedicine model included a navigator to facilitate patient encounters (referrals, electronic records, and scheduling) and a subscription billing contract. Between January 1 and December 31, 2011, 60 consultations were provided to the Alaska Native Medical Center. A survey of a sample of 15 women demonstrated overall patient satisfaction of 98% pertaining to the experience, technology, and medical consultation. The referring physician satisfaction, from 11 visit surveys and 8 referring physicians, revealed 99% satisfaction with the service. In this telemedicine pilot study, we demonstrated the feasibility of a telemedicine program to provide integrated specialty care that resulted in a positive effect on patient satisfaction. This program has a sustainable business model, thus creating a new modality for health care delivery. (C) 2013 Mayo Foundation for Medical Education and Research square Mayo Clin Proc. 2013;88(1):68-73


  • Survival outcomes of First Nations patients with oral cavity squamous cell carcinoma (Poliquin 2014)

    Citation: Erickson B, Biron VL, Zhang H, Seikaly H, Côté DW. (2015). Survival outcomes of First Nations patients with oral cavity squamous cell carcinoma (Poliquin 2014). doi:10.1186/s40463-015-0056-8.

    PMID: 25645260

    Cancer Sites(s): Oral

    Cancer Continuum(s): Survivorship, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Oral cavity squamous cell carcinoma (OCSCC) is the most common head and neck cancer, affecting approximately 2000 Canadians yearly. Analysis of Canadian Cancer Registry data has shown that the incidence of oral cavity cancer is decreasing and survival outcomes are improving. There are significant health disparities in First Nations (FN) people in Canada. The incidence of cancer in FN groups is significantly lower when compared to the general population, but the cancer-related morbidity and mortality is significantly higher. There is no Canadian literature currently for OCSCC, or any other head and neck cancer, that compares survival outcomes of FN to the overall population. Therefore, the objective of this study is to determine whether there is a difference in epidemiology and survival outcomes between FN and non-FN patients with OCSCC. METHODS: This is a retrospective study of a population-based, prospectively-collected database from Alberta Cancer Registry (ACR). Patients with OCSCC, diagnosed and treated in Alberta between 1998 and 2009 were included. ACR data collected included patient gender, age at diagnosis, tobacco and alcohol use, FN status, TNM staging, performance status, date of death, cause of death, and follow-up. FN status was identified through the Alberta Health and Wellness registry and through postal code correlation for those who live on reserves. RESULTS: A total of 583 patients with OCSCC were included in this study. Of these, 19 were identified as being FN, leaving 564 non-FN patients. When comparing the FN and non-FN groups, there is no significant difference in baseline demographics. Estimated yearly incidences for OCSCC in the Alberta population (all ages) and FN patients are 1.74/100,000 and 1.32/100,000 respectively (p?=?0.23). Significant differences are seen in overall survival (OS) (5-year OS 58.1% for non-FN and 33.7% for FN) and for disease-specific survival (DSS) (5-year DSS 67.8% for non-FN and 44.5% for FN). Multivariate analysis confirmed FN patients have a significant increase risk of death in OS and DSS, with hazard ratios of 4.20 (p?=?0.01) and 4.57 (p?=?0.02), respectively. CONCLUSIONS: The overall survival and disease specific survival are significantly lower in FN patients compared to non-FN patients with OCSCC.


  • Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: a study protocol

    Citation: Jull J, Mazereeuw M, Sheppard A, Kewayosh A, Steiner R, Graham ID. (2018). Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: a study protocol. doi:10.1186/s40900-018-0085-3.

    PMID: 29507771

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Community

    Intervention Type(s): Community Health Worker, Health Education and Promotion

    PLAIN ENGLISH SUMMARY: Tailoring and testing a peer support decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol.First Nations, Inuit and Métis (FNIM) people face higher risks for cancer compared to non-FNIM populations. They also face cultural barriers to health service use. Within non-FNIM populations an approach to health decision making, called shared decision making (SDM), has been found to improve the participation of people in their healthcare. Peer support with SDM further improves these benefits. The purpose of this study is to tailor and test a peer support SDM strategy with community support workers to increase FNIM people's participation in their cancer care.This project has two phases that will be designed and conducted with a Steering Committee that includes members of the FNIM and cancer care communities. First, a peer support SDM strategy will be tailored to meet the needs of cancer system users who are receiving care in urban settings, and training in the SDM strategy developed for community support workers. Three communities will be supported for participation in the study and community support workers who are peers from each community will be trained to use the SDM strategy.Next, each community support worker will work with a community member who has a diagnosis of cancer or who has supported a family member with cancer. Each community support worker and community member pair will use the SDM strategy. The participation and experience of the community support worker and community member will be evaluated.The research will be used to develop strategies to support people who are making decisions about their health. ABSTRACT: Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol Background First Nations, Inuit and Métis (FNIM) people face increased cancer risks in relation to general populations and experience barriers to health service use. Shared decision making (SDM) has been found to improve peoples' participation and outcomes in healthcare and peer support with SDM further improves these benefits. The purpose of this study is to tailor and then field test, by and with FNIM communities, a peer support SDM strategy for use in cancer care. Methods This project has 2 theory-driven phases and 5 stages (a-e). A core research team that includes members of the Aboriginal Cancer Control Unit of Cancer Care Ontario communities and academic researchers, will work with a Steering Committee. In phase 1, (stage a) a peer support SDM strategy will be tailored to meet the needs of cancer system users who are receiving care in urban settings and (stage b), training developed that will i) introduce participant communities to SDM, and ii) train community support workers (CSWs) within these communities. Next (stage c), three communities will be approached for voluntary participation in the study. These communities will be introduced to SDM in community meetings, and if in agreement then CSWs from each community will be recruited to participate in the study. One volunteer CSW from each community will be trained to use the peer support SDM strategy to enable phase 2 (field test of the peer support SDM strategy).During phase 2 (stage d), each CSW will be matched to a volunteer community member who has had a diagnosis of cancer or has supported a family member with cancer and is familiar with Ontario cancer systems. Each CSW-community member pair (3 to 4 pairs/community) will use the tailored peer support SDM strategy; their interaction will be audio-recorded and their participation and experience evaluated (total of 9 to 12 interviews). As well (stage e), data will be collected on health systems' factors related to the use of the peer support SDM strategy. Discussion Findings will develop peer support SDM strategies to enhance participation of FNIM people in cancer care decisions, advance knowledge translation science, and support a proposal to conduct a multi-site implementation trial.


  • Talking Glossary of Genomics Terminology: A Genomics Education Module for American Indian Communities

    Citation: Peters, JD, Pauline Lane, Naomi Coe, Kathryn. (2009). Talking Glossary of Genomics Terminology: A Genomics Education Module for American Indian Communities [Article]. 3: 34-40.

    PMID:

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Unknown

    Intervention Type(s): Innovative Technology

    This paper describes the development of an audio visual genomics glossary that was designed as an education tool for American Indian communities. This 'Talking Glossary of Genomics Terminology' is a multimedia DVD that was modeled on the 'Talking Glossary of Genetics', which was developed by the National Human Genome Research Institute (NHGRI). The NHGRI Glossary was modified and expanded with content designed to increase awareness among American Indians about cancer, genomics, and personalized medicine. Partners on the project include the Inter Tribal Council of Arizona, Inc., Phoenix Indian Medical Center, Arizona Cancer Center at the University of Arizona, the Translational Genomics Research Institute, as well as Arizona State University and University of Arizona graduate students. [ABSTRACT FROM AUTHOR] Copyright of Journal of Health Disparities Research & Practice is the property of Michelle Chino, Ph.D. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)


  • Teaching tools to engage Anishinaabek First Nations women in cervical cancer screening: Report of an educational workshop

    Citation: Zehbe I, Wood B, Wakewich P, Maar M, Escott N, Jumah N, Little J. (2016). Teaching tools to engage Anishinaabek First Nations women in cervical cancer screening: Report of an educational workshop. doi:10.1177/0017896915580446.

    PMID: 27867211

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection, Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    OBJECTIVE: To explore educational strategies for engaging First Nations women in Canada to attend cervical cancer screening. DESIGN: Within a participatory action research framework, semi-structured interviews with health-care providers in First Nations communities revealed that education about the value of screening is perceived as being a key factor to promote cervical cancer screening. SETTING: To obtain feedback from workshop informants, a 1-day educational workshop was held to identify appropriate educational intervention strategies, which would be applied in a forthcoming randomised controlled cervical screening trial. METHODS: Common discussion and discussion groups, which were facilitated by a First Nations workshop moderator and a note taker. RESULTS: This workshop helped to strengthen the ethical space dialogue with the First Nations communities with whom the study team had established research partnerships. The workshop atmosphere was relaxed and the invited informants decided that an educational health promotion event for community women needed to be held prior to inviting them to the cervical screening trial. Such an event would provide an opportunity to communicate the importance of attending regular cervical screening allowing women to make informed decisions about screening participation. Complementary promotional items, including an eye-catching pamphlet and storytelling, were also suggested. CONCLUSION: The key messages from the events and promotional items can help to destigmatise women who develop a type of cancer that is caused by a sexually transmitted virus that affects both men and women. Developing and implementing positive health education that respectfully depicts female bodies, sexuality and health behaviours through a First Nations lens is strongly warranted.


  • Telenovela: an innovative colorectal cancer screening health messaging tool

    Citation: Cueva, MK, Regina Slatton, Jozieta Dignan, Mark Underwood, Emily Landis, Kate. (2013). Telenovela: an innovative colorectal cancer screening health messaging tool. 72: 21301-21301.

    PMID: 23930245

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Innovative Technology, Support Group

    Background: Alaska Native people have nearly twice the rate of colorectal cancer (CRC) incidence and mortality as the US White population.; Objective: Building upon storytelling as a culturally respectful way to share information among Alaska Native people, a 25-minute telenovela-style movie, What's the Big Deal?, was developed to increase CRC screening awareness and knowledge, role-model CRC conversations, and support wellness choices.; Design: Alaska Native cultural values of family, community, storytelling, and humor were woven into seven, 3-4 minute movie vignettes. Written post-movie viewing evaluations completed by 71.3% of viewers (305/428) were collected at several venues, including the premiere of the movie in the urban city of Anchorage at a local movie theater, seven rural Alaska community movie nights, and five cancer education trainings with Community Health Workers. Paper and pencil evaluations included check box and open-ended questions to learn participants' response to a telenovela-style movie.; Results: On written-post movie viewing evaluations, viewers reported an increase in CRC knowledge and comfort with talking about recommended CRC screening exams. Notably, 81.6% of respondents (249/305) wrote positive intent to change behavior. Multiple responses included: 65% talking with family and friends about colon screening (162), 24% talking with their provider about colon screening (59), 31% having a colon screening (76), and 44% increasing physical activity (110).; Conclusions: Written evaluations revealed the telenovela genre to be an innovative way to communicate colorectal cancer health messages with Alaska Native, American Indian, and Caucasian people both in an urban and rural setting to empower conversations and action related to colorectal cancer screening. Telenovela is a promising health communication tool to shift community norms by generating enthusiasm and conversations about the importance of having recommended colorectal cancer screening exams.;


  • Testing the Feasibility of a Culturally Tailored Breast Cancer Screening Intervention with Native Hawaiian Women in Rural Churches

    Citation: Ka'opua, LSIP, Soon H. Ward, Margaret E. Braun, Kathryn L. (2011). Testing the Feasibility of a Culturally Tailored Breast Cancer Screening Intervention with Native Hawaiian Women in Rural Churches. 36: 55-65.

    PMID: 21446609

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Faith Based

    Intervention Type(s): Screening Program

    The authors report on the feasibility of delivering a church-based breast cancer screening intervention tailored on the cultural strengths of rural-dwelling Hawaiians. Native Hawaiian women are burdened by disproportionately high mortality from breast cancer, which is attributed to low participation in routine mammography Mammography is proven to be an effective means for detecting disease at its earliest stages, when treatments are most likely to be successful. Culturally tailored screening programs may increase participation. Hawaiian initiatives call for screening innovations that integrate Hawaiian cultural strengths, including those related to spirituality and the extended family system. Before full-scale testing of tailored interventions, it is important to conduct feasibility studies that gauge community receptiveness to the proposed intervention and research methods. Study results establish the attractiveness and potential effectiveness of the authors' screening intervention. Recruitment exceeded targets, and retention rates were comparable to those of other randomized behavioral trials, confirming the value of reaching rural Hawaiian women through churches. Women appreciated the integrative approach of Hawaiian and faith-based values, and positive outcomes are suggested. This article may be relevant to social workers interested in culturally responsive, community-based interventions and to researchers conducting pilot studies and controlled trials of interventions adapted from evidence-based programs.


  • Text message reminders increased colorectal cancer screening in a randomized trial with Alaska Native and American Indian people

    Citation: Muller CJ, Robinson RF, Smith JJ, Jernigan MA, Hiratsuka V, Dillard DA, Buchwald D. (2017). Text message reminders increased colorectal cancer screening in a randomized trial with Alaska Native and American Indian people. doi:10.1002/cncr.30499.

    PMID: 28001304

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Innovative Technology, Screening Program

    BACKGROUND: Alaska Native and American Indian people (AN/AIs) have a high incidence of colorectal cancer (CRC) and CRC-related mortality. Screening can prevent death from CRC, but screening rates are low in racially and ethnically diverse populations. The authors conducted a randomized controlled trial using text messaging to increase CRC screening among unscreened AN/AIs in a tribal health care system in Anchorage, Alaska. METHODS: The intervention entailed up to 3 text messages sent 1 month apart. The authors randomized 2386 AN/AIs aged 40 to 75 years who were eligible for CRC screening to the intervention or usual-care control conditions. Screening status was ascertained from electronic health records 3 months and 6 months after the last text message. Hazard ratios (HRs) were estimated to evaluate the effectiveness of the intervention, stratified by age and sex. RESULTS: The intervention increased CRC screening for AN/AIs aged 50 to 75 years (HR, 1.42; 95% confidence interval [95% CI], 0.97-2.09) and aged 40 to 49 years (HR, 1.24; 95% CI, 0.95-1.62). Within both age groups, the HRs were higher for women (HR, 1.69 [95% CI, 1.02-2.80] and HR, 1.37 [95% CI, 1.01-1.88]) compared with men (HR, 1.09 [95% CI, 0.59-1.99] and HR, 0.90 [95% CI, 0.54-1.53]). Interaction analysis yielded P values of .55 and .09, respectively, for age and sex. CONCLUSIONS: A simple text messaging intervention was found to increase CRC screening rates in AN/AIs, a group with high CRC morbidity and mortality. Text messaging may be a cost-effective means of reducing CRC screening disparities in AN/AIs and other populations. Cancer 2017;123:1382-1389. © 2016 American Cancer Society.


  • The association between razor clam consumption and memory in the CoASTAL cohort

    Citation: Grattan LM, Boushey C, Tracy K, Trainer VL, Roberts SM, Schluterman N, Morris JG Jr. (2016). The association between razor clam consumption and memory in the CoASTAL cohort. doi:10.1016/j.hal.2016.03.011.

    PMID: 28918887

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    This study represents a preliminary effort to examine the potential impacts of chronic, low level domoic acid (DA) exposure on memory in the CoASTAL cohort over the first four years of data collection (Wave 1). Five hundred and thirteen adult men and women representing three Native American Tribes were studied annually with standard measures of cognition and razor clam consumption (a known vector of DA exposure) over a four-year period. In addition, a pilot metric of DA concentration exposure was used which took into consideration average DA concentration levels in source beaches, as well as the amount consumed. Based upon generalized estimating equations (GEE) analysis, controlling for age, sex, race, year, education level, tribe, and employment status, findings indicated that high razor clam consumers (15 or more per month) had isolated decrements on some measures of memory (p=0.02-0.03), with other cognitive functions unaffected. The relatively lower memory scores were still within normal limits, and were thus not clinically significant. The pilot DA exposure metric had no association with any other aspect of cognition or behavior. There is a possible association between long-term, low-level exposure to DA through heavy razor clam consumption and memory functioning. Copyright © 2016. Published by Elsevier B.V.


  • The cost of conducting face-to-face household interviews in a rural, Native American population. The North Carolina Native American Cervical Cancer Prevention Project

    Citation: Blinson, KD, M. Michielutte, R. Wells, H. B. (1996). The cost of conducting face-to-face household interviews in a rural, Native American population. The North Carolina Native American Cervical Cancer Prevention Project. 78: 1587-1591.

    PMID: 8839576

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    Background: This article focuses on planning, developing, implementing, and evaluating the data collection method used for evaluating a community health education program in a rural setting, the North Carolina Native American Cervical Cancer Prevention Program.; Methods: Evaluation of program effectiveness used face-to-face interviews with a randomly selected sample of women from the target population. Selection of a data collection method was based on thorough community and program analysis. Each element of the community's analysis revealed key cultural, environmental, and procedural factors that affected the selection of an appropriate data collection method.; Results: Costs per completed interview varied over time, ranging from a low of $48 during the height of survey activity to $243. The average cost per completed interview overall was $113.; Conclusions: Several factors contributed to the overall costs of interviews, including the economy of the community, the number of call-backs made to contact women, and local environmental conditions.;


  • The cultural constructs of cancer-related fatigue among American Indian cancer survivors

    Citation: Hodge FS, Itty TL, Cadogan MP, Martinez F, Pham A. (2016). The cultural constructs of cancer-related fatigue among American Indian cancer survivors. doi:10.1007/s00520-015-2902-7.

    PMID: 26304157

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    PURPOSE: Cancer-related fatigue (CRF) is a common symptom experienced by cancer survivors. Persistent fatigue can last years after cancer treatment. CRF's origin is unknown, and there are no validated treatments. Cultural constructs (definitions, meaning, and explanations) may vary the presentation and treatment choices related to fatigue. Identifying and categorizing CRF terms and experiences among racial, ethnic, and non-English speaking groups may provide a fuller understanding of CRF to guide tailoring of interventions. We report on the cultural constructs of CRF as reported by American Indian cancer survivors. METHODS: A study of Southwest American Indians collected qualitative data on cancer survivors' experiences of fatigue. Focus groups (n?=?132) at urban clinics and rural reservation sites in the Southwest collected qualitative data on cancer survivor experiences with fatigue. The sessions were audiotaped and transcribed verbatim. During analysis, common themes were coded and formed into categories following Grounded Theory analytical procedures. Relationships between categories were examined. RESULTS: CRF was described by survivors as an entity that comes into the brain, drains life from the body, and creates long-lasting suffering, pain, and stigma. We review the cultural constructs of fatigue and CRF's relationship to being out of balance. CONCLUSIONS: There is a need for culturally appropriate education concerning fatigue, techniques for reducing fatigue, and support for American Indian cancer survivors and other vulnerable populations.


  • The Design of a Multi-component Intervention to Promote Screening Mammography in an American Indian Community: The Native Women's Health Project

    Citation: Tolma EL, Engelman K, Stoner JA, Thomas C, Joseph S, Li J, Blackwater C, Henderson JN, Carson LD, Neely N, Edwards T. (2016). The Design of a Multi-component Intervention to Promote Screening Mammography in an American Indian Community: The Native Women's Health Project. doi:10.3934/publichealth.2016.4.933.

    PMID: 29546205

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion, Screening Program

    BACKGROUND: Breast cancer is an important public health issue among American Indian/Alaska Native (AI/AN) women in the US. This article describes the design and implementation of a culturally sensitive intervention to promote breast health among AI/AN women through a hybrid model that incorporates clinical and community-based approaches. This is one of the first studies using this model addressing breast cancer disparities among AI/AN populations in the US. METHODS: The Theory of Planned Behavior was used as the guiding framework of the intervention and Community Based Participatory Research was the primary vehicle for the intervention planning and implementation. Three preliminary studies took place that aimed to identify qualitatively and quantitatively what deterred or encouraged AI women to get past or future mammograms. The research results were shared with community members who, through a prioritization process, identified the theoretical focus of the intervention and its corresponding activities. The priority population consisted of AI women ages 40-74, with no recent mammogram, and no breast cancer history. RESULTS: The intervention centered on the promotion of social modeling and physician recommendation. The main corresponding activities included enhancing patient-physician communication about screening mammography through a structured dialogue, receipt of a breast cancer brochure, participation in an inter-generational discussion group, and a congratulatory bracelet upon receipt of a mammogram. Environmental and policy related changes also were developed. CONCLUSION: Creating a theory-based, culturally-sensitive intervention through tribal participatory research is a challenging approach towards eliminating breast cancer disparities among hard-to-reach populations.


  • The evolution of a breast health program for Plains Indian women

    Citation: Brant, JMF, D. Iverson, M. L. (1999). The evolution of a breast health program for Plains Indian women. 26: 731-739.

    PMID: 10337651

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Health Education and Promotion

    Purpose/objectives: To discuss the development and implementation of a culturally sensitive breast cancer outreach program focusing on early detection, screening, and education for Plains Indian women living in Montana and northern Wyoming.; Data Sources: Professional journals, government reports, culturally sensitive materials, and field experience.; Data Synthesis: Perceptions about cancer, the prevalence of poverty and alcoholism, the traditional role of the Native American woman, and rural living influence breast health and breast cancer education for Plains Indian women. An outreach program was developed specifically for this population and included individualized education, distribution of culturally sensitive materials, culturally sensitive professional education, and train-the-trainer seminars.; Conclusions: After years of working with Native American women, the percentages of mammograms and clinical breast examinations increased by more than 100%.; Implications For Nursing Practice: Nurses can bridge the cultural gap and work effectively with Native American women by building trust and being sensitive to cultural customs and related healthcare behaviors. Furthermore, this program provides a model that nurses can use to develop culturally sensitive breast health programs.;


  • The Experience of Cancer in American Indians Living in Oklahoma

    Citation: Craft M, Patchell B, Friedman J, Stephens L, Dwyer K. (2017). The Experience of Cancer in American Indians Living in Oklahoma. doi:10.1177/1043659616634169.

    PMID: 26929307

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Many cancers in American Indians (AIs) are not diagnosed early leading to effects on physical, social, and emotional well-being or quality of life (QOL). Little research has been done on QOL of AIs in Oklahoma. This study examined the experience of living with cancer of AIs in Oklahoma to gain greater understanding of QOL issues and provide a basis for interventions to improve QOL. Twenty AIs diagnosed with cancer and receiving care in Oklahoma participated in this pilot study through semistructured interviews. Data were analyzed using thematic analysis. Themes identified included circles of support, finding meaning in the experience, and facing personal challenges such as health care-related issues, including mental health needs and fragmented care. The findings from this pilot study provide insights into the cancer experience of AIs in Oklahoma and demonstrate that care navigation and social support are important aspects to address in intervention development.


  • The experience of treatment barriers and their influence on quality of life in American Indian/Alaska Native breast cancer survivors

    Citation: Goodwin EA, Burhansstipanov L, Dignan M, Jones KL, Kaur JS. (2017). The experience of treatment barriers and their influence on quality of life in American Indian/Alaska Native breast cancer survivors. doi:10.1002/cncr.30406.

    PMID: 27763688

    Cancer Sites(s): Breast

    Cancer Continuum(s): Survivorship, Treatment

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: American Indian and Alaska Native (AI/AN) breast cancer survivors experience disparities in breast cancer incidence and age-adjusted mortality compared with non-Hispanic white (NHW) breast cancer survivors. In addition, mortality-to-incidence rates indicate that AI/ANs continue to have the poorest survival from breast cancer compared with other racial groups. Native American Cancer Education for Survivors (NACES) is a cultural education and support intervention for AI/AN patients with cancer that collects data from voluntary participants through the NACES quality-of-life (QOL) survey regarding their cancer experience and survivor journey. METHODS: Data from the NACES QOL survey were analyzed to determine whether barriers accessing and during initial cancer treatment impacted QOL domains for AI/AN cancer survivors. Exploratory analyses of selected variables were conducted and were followed by Kruskal-Wallis tests to determine whether these barriers influenced survivorship QOL for AI/AN breast cancer survivors. RESULTS: AI/AN breast cancer survivors' social QOL was significantly affected by barriers to accessing cancer treatment. Many respondents experienced barriers, including a lack of cancer care at local clinics and the distance traveled to receive cancer care. During treatment, too much paperwork and having to wait too long in the clinic for cancer care were the most frequently reported barriers. CONCLUSIONS: Treatment barriers influence AI/AN breast cancer survivors' social QOL. Mediating these barriers is crucial to ameliorating AI/AN survivors' disparities when accessing and completing cancer treatment and improving survivorship QOL. Cancer 2017;123:861-68. © 2016 American Cancer Society. © 2016 American Cancer Society.


  • The Healthy Pregnancies Project: Study protocol and baseline characteristics for a cluster-randomized controlled trial of a community intervention to reduce tobacco use among Alaska Native pregnant women

    Citation: Patten CA, Lando HA, Desnoyers CA, Barrows Y, Klejka J, Decker PA, Hughes CA, Bock MJ, Boyer R, Resnicow K, Burhansstipanov L. (2019). The Healthy Pregnancies Project: Study protocol and baseline characteristics for a cluster-randomized controlled trial of a community intervention to reduce tobacco use among Alaska Native pregnant women. doi:10.1016/j.cct.2019.01.012.

    PMID: 30703523

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Community Health Worker, Health Education and Promotion

    BACKGROUND: Tobacco use prevalence is high among pregnant Alaska Native (AN) women but few interventions have been evaluated for this group. The Healthy Pregnancies Project aims to evaluate a multicomponent intervention for reducing tobacco use during pregnancy and the postpartum period among AN women. This report describes the study protocol and participant baseline characteristics. DESIGN: Cluster-randomized controlled trial with village as the unit of assignment. Sixteen villages in rural southwest Alaska were stratified on village size and randomized to a multicomponent intervention (n?=?8 villages) or usual care (n?=?8 villages). METHODS: Pregnant AN women from the study villages were enrolled. All participants receive the usual care provided to pregnant women in this region. Participants from intervention villages additionally receive individual phone counseling on healthy pregnancies plus a social marketing campaign targeting the entire community delivered by local AN Native Sisters. Baseline measurements for all enrolled pregnant women have been completed. Follow-up assessments are ongoing at delivery, and at 2 and 6?months postpartum. The primary outcome is biochemically verified tobacco use status at 6?months postpartum. RESULTS: Recruitment was feasible with 73% of eligible women screened enrolled. The program reached more than half (56%) of AN pregnant women from the study villages during the recruitment period. Participants are N?=?352 pregnant AN women, 188 enrolled from intervention villages and 164 from control villages. At baseline, participants' mean (SD) age was 25.8 (5.0) years, they were at 26.8 (9.8) weeks gestation, and 66.5% were current tobacco users. DISCUSSION: Processes and products from this project may have relevance to other Native American populations aiming to focus on healthy pregnancies in their communities. Copyright © 2019 The Authors. Published by Elsevier Inc. All rights reserved.


  • The high and heterogeneous burden of breast cancer in Hawaii: A unique multiethnic U.S. Population

    Citation: Loo LWM, Williams M, Hernandez BY. (2019). The high and heterogeneous burden of breast cancer in Hawaii: A unique multiethnic U.S. Population. doi:10.1016/j.canep.2018.11.006.

    PMID: 30503975

    Cancer Sites(s): Breast

    Cancer Continuum(s): Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: While breast cancer incidence and mortality rates differ across racial/ethnic populations in the U.S., little is known about Asian and Pacific Island subpopulations. Hawaii is one of the most racially/ethnically diverse states in the U.S. Overall, Hawaii ranks 5th highest for breast cancer incidence in the nation (2010-2014) and rates have increased in recent years despite a stable national trend. In contrast, for breast cancer mortality, Hawaii has the 3rd lowest rate in the nation, with rates demonstrating a steady decline for nearly 3 decades. METHODS: We examined incidence and mortality trends from 1984-2013 across the five major racial/ethnic populations of Hawaii (Native Hawaiian, White, Japanese, Chinese, and Filipino) using Hawaii's Surveillance, Epidemiology, and End Results (SEER) registry data. RESULTS: With the exception of Chinese, all groups experienced increasing incidence over the thirty year period. While Japanese experienced the most pronounced recent increase, with incidence now exceeding that of Whites, their mortality rates have remained low for decades. Native Hawaiians have consistently had the highest incidence and mortality rates in the state. The incidence rates of hormone receptor (HR)-positive breast cancer were higher among Japanese and Native Hawaiians as compared to Whites. Relative to Whites, Native Hawaiians also had a higher incidence rate of the HER2-positive subtype and, Japanese, of the triple-negative (HR-/HER2-) subtype of breast cancer. CONCLUSIONS: Studies such as this underscore the importance of considering the heterogeneity in breast cancer rates and subtypes across the different racial/ethnic populations. Copyright © 2018 Elsevier Ltd. All rights reserved.


  • The High Burden of Cancer Among American Indians/Alaska Natives in Wisconsin

    Citation: Foote M, Strickland R, Lucas-Pipkorn S, Williamson A, Lamers L. (2016). The High Burden of Cancer Among American Indians/Alaska Natives in Wisconsin.

    PMID: 27057574

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Diagnosis

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVE: American Indians/Alaska Natives (AI/AN) who live in the Northern Plains, includingt Wisconsin, face disproportionate cancer disparities. This report examines cancer incidence and mortality based on residence in Contract Health Service Delivery Areas (CHSDA) to assess disparities between AIs/ANs and other racial populations in Wisconsin. METHODS: To improve identification of the AI/AN race, incidence data were linked with Indian Health Service (IHS) patient records. Analysis further focused on residents of IHS CHSDA counties. Age-adjusted cancer incidence and mortality rates (2007-2011) were calculated by sex and major cancer sites. AI/AN rates were.analyzed for both statewide and CHSDA residency in comparison to statewide white rates and comparable national rates. RESULTS: In comparison with whites, AI/ANs in CHSDA counties had higher incidence rates of cervical (3.5 times), liver (3.2), lung (2.3), and kidney cancers (2.1), and higher mortality rates for liver (2.7), kidney (2.2) and lung (1.9) cancers. Although there were similar rates of prostate cancer incidence between the 2 populations, AI/ANs were 1.9 times more likely to die from the disease. CONCLUSIONS: AI/AN individuals in Wisconsin CHDSA counties experience the highest cancer incidence rate of any racial group for both genders combined and for females. This population also has the highest mortality rate among all racial groups for both males and females. To meet the Wisconsin Comprehensive Cancer Control Plan 2015-2020 and Healthy People 2020 goals of lowering cancer incidence and mortality rates, the disproportionate cancer burden among AIs.


  • The Impact of Individual and Parental American Indian Boarding School Attendance on Chronic Physical Health of Northern Plains Tribes

    Citation: Running Bear U, Thayer ZM, Croy CD, Kaufman CE, Manson SM; AI-SUPERPFP Team. (2019). The Impact of Individual and Parental American Indian Boarding School Attendance on Chronic Physical Health of Northern Plains Tribes. doi:10.1097/FCH.0000000000000205.

    PMID: 30431464

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    This study investigated the relationship of American Indian boarding school attendance and chronic physical health. We hypothesized boarding school attendance would be associated with an increased number of chronic physical health problems. We also examined the relationship between boarding school attendance and the 15 chronic health problems that formed the count of the chronic health conditions. American Indian attendees had a greater count of chronic physical health problems compared with nonattendees. Father's attendance was independently associated with chronic physical health problems. Attendees were more likely to have tuberculosis, arthritis, diabetes, anemia, high cholesterol, gall bladder disease, and cancer than nonattendees.


  • The Imperative for Research to Promote Health Equity in Indigenous Communities

    Citation: Stanley LR, Swaim RC, Kaholokula JK, Kelly KJ, Belcourt A, Allen J. (2017). The Imperative for Research to Promote Health Equity in Indigenous Communities. doi:10.1007/s11121-017-0850-9.

    PMID: 29110278

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    Health disparities exact a devastating toll upon Indigenous people in the USA. However, there has been scant research investment to develop strategies to address these inequities in Indigenous health. We present a case for increased health promotion, prevention, and treatment research with Indigenous populations, providing context to the recent NIH investment in the Intervention Research to Improve Native American Health (IRINAH) network. We discuss the disproportionate costs and consequences of disparities borne by Indigenous groups, the limited evidence base on effective intervention for this population, how population uniqueness often makes transfer of existing intervention models difficult, and additional challenges in creating interventions for Indigenous settings. Given the history of colonial disruption that has included genocide, forced removal from lands, damaging federal, state and local policies and practices, environmental contamination, and most recently, climate change, we conclude research that moves beyond minor transformations of existing majority population focused interventions, but instead truly respects Indigenous wisdom, knowledge, traditions, and aspirations is needed, and that investment in intervention science to address Indigenous health disparities represent a moral imperative.


  • The implementation of a participatory manuscript development process with Native American tribal awardees as part of the CDC Communities Putting Prevention to Work initiative: challenges and opportunities

    Citation: Blue Bird Jernigan V, Brokenleg I', Burkhart M, Magdalena C, Sibley C, Yepa K. (2014). The implementation of a participatory manuscript development process with Native American tribal awardees as part of the CDC Communities Putting Prevention to Work initiative: challenges and opportunities. doi:10.1016/j.ypmed.2014.01.027.

    PMID: 24513172

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): N/A

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVE: In 2009, the Centers for Disease Control and Prevention funded 50 communities, including three tribal awardees, to implement environmental approaches to address obesity and smoking through the Communities Putting Prevention to Work initiative. The tribes were among the selected awardees offered training support for analyzing, writing, and publishing their findings. This article describes the process of translating the workshops, guided by a participatory framework, for implementation with the tribes. METHODS: Nine participants from three tribes attended the workshops in Decatur, Georgia, in August and October of 2012: 1) a one-day pre-conference workshop focused on integrating both Indigenous and academic evaluation methods; 2) a 4 day data analysis workshop; and 3) a 5 day scientific writing workshop. Participants were provided with technical assistance following the workshops. RESULTS: Participants viewed the workshops positively and have continued to develop their manuscripts. To date one tribal awardee has submitted their manuscript for publication. CONCLUSION: The participatory manuscript development process described here is the first of its kind outlining a pathway for tribal community health practitioners to translate and publish their work. Further development of this process could increase the number of community-developed manuscripts, thereby advancing the field of translational intervention science and leading to improved health equity. Copyright © 2014 Elsevier Inc. All rights reserved.


  • The influence of community well-being on mortality among Registered First Nations people

    Citation: Oliver LN, Penney C, Peters PA. (2016). The influence of community well-being on mortality among Registered First Nations people.

    PMID: 27438999

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: Living in a community with lower socioeconomic status is associated with higher mortality. However, few studies have examined associations between community socioeconomic characteristics and mortality among the First Nations population. DATA AND METHODS: The 1991-to-2006 Census Mortality and Cancer Cohort follow-up, which tracked a 15% sample of Canadians aged 25 or older, included 57,300 respondents who self-identified as Registered First Nations people or Indian band members. The Community Well-Being Index (CWB), a measure of the social and economic well-being of communities, consists of income, education, labour force participation, and housing components. A dichotomous variable was used to indicate residence in a community with a CWB score above or below the average for First Nations communities. Age-standardized mortality rates (ASMRs) were calculated for First Nations cohort members in communities with CWB scores above and below the First Nations average. Cox proportional hazards models examined the impact of CWB when controlling for individual characteristics. RESULTS: The ASMR for First Nations cohort members in communities with a below-average CWB was 1,057 per 100,000 person-years at risk, compared with 912 for those in communities with an above-average CWB score. For men, living in a community with below-average income and labour force participation CWB scores was associated with an increased hazard of death, even when individual socioeconomic characteristics were taken into account. Women in communities with below-average income scores had an increased hazard of death. INTERPRETATION: First Nations people in communities with below-average CWB scores tended to have higher mortality rates. For some components of the CWB, effects remained even when individual socioeconomic characteristics were taken into account.


  • The last frontier: innovative efforts to reduce colorectal cancer disparities among the remote Alaska Native population

    Citation: Redwood, DP, Ellen Perdue, David Haverkamp, Donald Espey, David. (2012). The last frontier: innovative efforts to reduce colorectal cancer disparities among the remote Alaska Native population. 75: 474-480.

    PMID: 22341095

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Health Worker, Training for Health Professionals

    Background: The Alaska Native (AN) population experiences twice the incidence and mortality of colorectal cancer (CRC) as does the U.S. white population. CRC screening allows early detection and prevention of cancer. Objective: We describe pilot projects conducted from 2005 to 2010 to increase CRC screening rates among AN populations living in rural and remote Alaska. Design: Projects included training rural mid-level providers in flexible sigmoidoscopy, provision of itinerant endoscopy services at rural tribal health facilities, the creation and use of a CRC first-degree relative database to identify and screen individuals at increased risk, and support and implementation of screening navigator services. Setting: Alaska Tribal Health System. Patients: AN population. Interventions: Itinerant endoscopy, patient navigation. Main Outcome Measurements: AN patients screened for CRC, colonoscopy quality measures. Results: As a result of these ongoing efforts, statewide AN CRC screening rates increased from 29% in 2000 to 41% in 2005 before the initiation of these projects and increased to 55% in 2010. The provision of itinerant CRC screening clinics increased rural screening rates, as did outreach to average-risk and increased-risk (family history) ANs by patient navigators. However, health care system barriers were identified as major obstacles to screening completion, even in the presence of dedicated patient navigators. Limitations: Continuing challenges include geography, limited health system capacity, high staff turnover, and difficulty getting patients to screening appointments. Conclusions: The projects described here aimed to increase CRC screening rates in an innovative and sustainable fashion. The issues and solutions described may provide insight for others working to increase screening rates among geographically dispersed and diverse populations. (Gastrointest Endosc 2012;75:474-80.)


  • The 'Ohana Day Project: a community approach to increasing cancer screening

    Citation: Gellert, KB, Kathryn L. Morris, Robert Starkey, Valerie. (2006). The 'Ohana Day Project: a community approach to increasing cancer screening. 3: A99-A99.

    PMID: 16776900

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR), Screening Program

    Background: Native Hawaiians have higher cancer mortality rates and lower cancer screening rates compared with non-Hawaiians in Hawaii. People living in rural areas have particularly limited options for cancer services, especially for services that are culturally attractive and convenient.; Context: 'Ohana Day, offered in a small, rural, and predominantly Hawaiian community, was designed to attract underserved Hawaiians to cancer screening.; Methods: The year-long project involved a 1-day ho'olaule'a (community celebration) for families that featured 30-minute visits with a same-sex Hawaiian physician (for adults), culturally relevant cancer education and brochures, Hawaiian music, and games for children. Recruitment and follow-up for screening and treatment were offered. Principles of community-based participatory research, Hawaiian values, and Kreuter's strategies guided the design of the event.; Consequences: Of the 73 participants, 10 had abnormal screening results, and all received follow-up screening, treatment, or both within 3 months. Six months after the event, the number of men current with prostate cancer and colorectal cancer screening and the number of women current with clinical breast examination and colorectal cancer screening increased significantly. In addition, the number of participants affiliated with the community's Native Hawaiian health care system and the number with health insurance increased significantly. Participant evaluations showed high overall satisfaction with the 'Ohana Day program.; Interpretation: Previous studies have noted the barriers to increasing cancer screening among underserved minorities. Culture- and community-based strategies appear to be successful at overcoming these barriers.;


  • The pervasive crisis of diminishing radiation therapy access for vulnerable populations in the United States, part 2: American Indian patients

    Citation: McClelland S 3rd, Leberknight J, Guadagnolo BA, Coleman CN, Petereit DG. (2017). The pervasive crisis of diminishing radiation therapy access for vulnerable populations in the United States, part 2: American Indian patients. doi:10.1016/j.adro.2017.08.010.

    PMID: 29556572

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Treatment

    Intervention Site(s): Systematic Review

    Intervention Type(s): N/A

    INTRODUCTION: American Indian/Alaska Native (AI/AN) patients with cancer disproportionally present with more advanced stages of disease and have the worst cancer-specific survival rates of any racial/ethnic group in the United States. The presence of disparities in radiation therapy (RT) access for AI/AN patients has rarely been examined. METHODS AND MATERIALS: National Cancer Institute (NCI) initiatives toward addressing AI/AN disparities were examined. Additionally, an extensive PubMed literature search for studies investigating RT access disparities in AI/AN patients was performed. RESULTS: Literature describing RT access disparities for the AI/AN patient population is sparse, revealing only 3 studies, each of which described initiatives from the Walking Forward program, the NCI Cancer Disparity Research Partnership initiative to address barriers to cancer screening among AI populations in the Northern Plains region (eg, geographic remoteness and mistrust of health care providers). This program has used patient navigation, community education, and access to clinical trials for more than 4000 AI/AN patients to combat high cancer mortality rates. Over the course of its 15-year existence, the program has resulted in patients presenting with earlier stages of disease and experiencing higher cure rates. Lung cancer, the most common cause of cancer-related mortality in AI/AN patients, is the most recent and ongoing focus of the program. CONCLUSION: The amount of information regarding RT access in AI/AN patients is limited, with nearly all peer-reviewed published progress in this area being associated with the Walking Forward program. Further initiatives from this program will hopefully inspire similar initiatives throughout the country to reduce the barriers to optimized cancer care that these patients face. Given the similarities with cancer disparities of populations worldwide, the AI/AN experience should be included within the broad issue of a global shortage of cancer care among underserved populations.


  • The public health foundation of health services for American Indians & Alaska Natives

    Citation: Rhoades ER, Rhoades DA. (2014). The public health foundation of health services for American Indians & Alaska Natives. doi:10.2105/AJPH.2013.301767.

    PMID: 24758580

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    The integration of public health practices with federal health care for American Indians and Alaska Natives (AI/ANs) largely derives from three major factors: the sovereign nature of AI/AN tribes, the sociocultural characteristics exhibited by the tribes, and that AI/ANs are distinct populations residing in defined geographic areas. The earliest services consisted of smallpox vaccination to a few AI/AN groups, a purely public health endeavor. Later, emphasis on public health was codified in the Snyder Act of 1921, which provided for, among other things, conservation of the health of AI/AN persons. Attention to the community was greatly expanded with the 1955 transfer of the Indian Health Service from the US Department of the Interior to the Public Health Service and has continued with the assumption of program operations by many tribes themselves. We trace developments in integration of community and public health practices in the provision of federal health care services for AI/AN persons and discuss recent trends.


  • The social costs of uranium mining in the US Colorado Plateau cohort, 1960-2005

    Citation: Jones BA. (2017). The social costs of uranium mining in the US Colorado Plateau cohort, 1960-2005. doi:10.1007/s00038-017-0943-z.

    PMID: 28251247

    Cancer Sites(s): Lung

    Cancer Continuum(s): Prevention, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    OBJECTIVES: Long-term social costs associated with underground uranium mining are largely unknown. This study estimated health costs of Native American and white (Hispanic and non-Hispanic origin) uranium miners in the US Public Health Service Colorado Plateau cohort study. METHODS: Elevated uranium miner person-years of life lost (PYLL) were calculated from the most recent study of the Colorado Plateau cohort over 1960-2005. Nine causes of death categories were included. Costs to society of miner PYLL were monetized using the value of a statistical life-year approach. RESULTS: Costs over 1960-2005 totaled $2 billion USD [95% CI: $1.8, $2.2], or $2.9 million per elevated miner death. This corresponds to $43.1 million [95%: $38.7, $48.7] in annual costs. Lung cancer was the most costly cause of death at $1.4 billion [95%: $1.3, $1.5]. Absolute health costs were largest for white miners, but Native Americans had larger costs per elevated death. Annual excess mortality over 1960-2005 averaged 366.4 per 100,000 miners; 404.6 (white) and 201.5 per 100,000 (Native American). CONCLUSIONS: This research advances our understanding of uranium extraction legacy impacts, particularly among indigenous populations.


  • The Strong Heart Water Study: Informing and designing a multi-level intervention to reduce arsenic exposure among private well users in Great Plains Indian Nations

    Citation: Thomas ED, Gittelsohn J, Yracheta J, Powers M, O'Leary M, Harvey DE, Red Cloud R, Best LG, Black Bear A, Navas-Acien A, George CM. (2019). The Strong Heart Water Study: Informing and designing a multi-level intervention to reduce arsenic exposure among private well users in Great Plains Indian Nations. doi:10.1016/j.scitotenv.2018.09.204.

    PMID: 30373089

    Cancer Sites(s): Lung, Bladder

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Elevated arsenic exposure from drinking water is associated with an increased risk of cardiovascular disease, diabetes, kidney disease, and skin, lung, and bladder cancer. Arsenic contamination in groundwater supplies disproportionately affects rural populations using private wells. Arsenic mitigation programs for American Indian communities are limited. There is an urgent need for targeted approaches to reduce arsenic exposure for at-risk communities using private wells. Formative research was conducted to inform and design a community-based arsenic mitigation intervention for Lakota and Dakota Nations in the Great Plains Area of the United States, where, in some communities, one-quarter of private wells are estimated to have elevated arsenic. Formative research included semi-structured interviews, a community workshop, intervention-planning workshops, and a pilot study of the developed intervention. Community members prioritize aesthetic qualities of water (e.g. taste, color), safety, and other situational factors (e.g. cost) when considering their drinking and cooking water. Although water safety is a concern, awareness and concern for arsenic vary substantially within communities. To reduce arsenic exposure, community members recommended communication of water test results, home visits for intervention delivery, and reminders to use arsenic-safe water. Findings informed the development of an intervention to prevent arsenic exposure through drinking water and cooking, including health promotion messages and household items to facilitate use of an arsenic removal device (e.g. tankards to store filtered water). The pilot study indicated promising acceptability and operability of the developed intervention. This research provides a model for the development of environmental health interventions in partnership with American Indian and other private well-using communities.


  • Time since prior testing and quality of Pap test specimens collected by nurses trained to serve native populations

    Citation: Kottke, TET, M. A. (1998). Time since prior testing and quality of Pap test specimens collected by nurses trained to serve native populations. 83: 1809-1814.

    PMID:

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Training for Health Professionals

    To respond to the service needs of American Indian, Alaska Native, and Pacific Island women, we developed an educational program (Nurses Providing Annual Cancer Screening; NPACS) that trains clinic nurses to collect Pap test specimens, perform clinical breast examinations, and organize clinical screening systems for cancer prevention and control. The purpose of this analysis is to determine the impact of the training program on nurses' ability to collect satisfactory Pap test specimens. Nurses in 30 clinics serving American Indian and Pacific Island women underwent 40 hours of training to perform clinical breast examinations, collect Pap test specimens, and organize clinical systems to support screening activities. In addition, they reported the quality of the tests to the NPACS office. As of July 15, 1997, 1733 Pap test specimens were collected and reported by the nurses. These reports were used to generate a rate of satisfactory specimens by year. The interpretation of quality was not available for 124 tests (7.2%). However, only 6 tests (0.3%) were reported as unsatisfactory for pathologic analysis. After 1 week of training, nurses can collect high-quality Pap test specimens. Policy makers should consider implementing this service delivery model in any location where women suffer from the lack of cancer prevention and control services. Cancer 1998;83: 1809-14, (C) 1998 American Cancer Society.


  • TOBACCO USE - BASE-LINE RESULTS FROM PATHWAYS TO HEALTH, A SCHOOL-BASED PROJECT FOR SOUTHWESTERN AMERICAN-INDIAN YOUTH

    Citation: Davis, SML, L. C. Cunninghamsabo, L. Skipper, B. J. (1995). TOBACCO USE - BASE-LINE RESULTS FROM PATHWAYS TO HEALTH, A SCHOOL-BASED PROJECT FOR SOUTHWESTERN AMERICAN-INDIAN YOUTH. 24: 454-460.

    PMID: 8524719

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Schools

    Intervention Type(s): Health Education and Promotion

    Background. This paper describes a school-based cancer prevention project for fifth- and seventh-grade Navajo and Pueblo Indian children living in the South-west. Baseline data are presented from 714 students who completed questionnaires on smoking and smokeless tobacco. Methods. Questionnaires were administered in the fifth- and seventh-grade classrooms prior to students receiving the Pathways to Health cancer prevention curriculum. Results. In our sample there were increases from fifth to seventh grade in self-reported current cigarette use and intention to use. Also, boys were more likely to use and intend to use cigarettes than girls. The use of smokeless tobacco also increased with increasing grade level, though this trend was less pronounced for girls. A significant gender difference was found in the use of smokeless tobacco with boys reporting higher use. However, reported use by girls was higher than is typically noted for non-Hispanic white girls. Conclusions. There is evidence of experimentation and regular use of tobacco products by both Navajo and Pueblo boys and girls. Even more students indicate intention to use tobacco products in the future. These data confirm the need for primary prevention programs designed for this population of American Indians. (C) 1995 Academic Press, Inc.


  • Training the Mind's Eye

    Citation: Chilton, JAA, Beth W. Lofton, Melissa. (2012). Training the Mind's Eye [Article]. 102: 2039-2040.

    PMID: 22994183

    Cancer Sites(s): Breast

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    The article profiles a program called Images of Health, a program for Native American women within a program called Circle of Sisters which was established to encourage breast cancer awareness, screening and early detection and features program activities which include having women string beads the size of tumors that are typically detected by different detection methods. The views that the U.S. Preventive Services Task Force and the American Cancer Society have about self breast examinations for women are discussed.


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

    Citation: Watanabe-Galloway S, Watkins K, Duran T. (2015). Trends and Patterns of Late and Unstaged Lung, Colorectal, Female Breast, and Prostate Cancers among American Indians in the Northern Plains, 2002-2009. doi:10.1353/hpu.2015.0089.

    PMID: 26320932

    Cancer Sites(s): Breast, Colorectal, Prostate

    Cancer Continuum(s): Diagnosis

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    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.


  • Trends in cervical cancer incidence and mortality in Oklahoma and the United States, 1999-2013

    Citation: Gopalani SV, Janitz AE, Campbell JE. (2018). Trends in cervical cancer incidence and mortality in Oklahoma and the United States, 1999-2013. doi:10.1016/j.canep.2018.08.008.

    PMID: 30176544

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Diagnosis, Surveillance

    Intervention Site(s): N/A

    Intervention Type(s): N/A

    BACKGROUND: The twin prevention strategies of HPV vaccination and cervical cancer screening reduce new cases and averts deaths, yet women still develop or die from cervical cancer. To assess and better understand the burden of cervical cancer in Oklahoma, we analyzed incidence and mortality trends in Oklahoma from 1999 to 2013. METHODS: We obtained age-adjusted cervical cancer incidence and mortality rates and calculated standardized rate ratios (RR) for women in Oklahoma compared to the US. To evaluate temporal changes in annual age-adjusted incidence and mortality, we calculated the annual percent change (APC) using the Joinpoint Regression Program. RESULTS: We observed higher age-adjusted incidence (RR: 1.2; 95% CI: 1.1, 1.3) and mortality (RR: 1.2; 95% CI: 1.1, 1.2) rates among women in Oklahoma compared to the US. The overall incidence and mortality rates in Oklahoma were 9.7 and 2.9 per 100,000 women, respectively. In Oklahoma, the highest age-adjusted incidence rates were in American Indian/Alaska Native (AI/AN) (14.8 per 100,000 females) and Asian or Pacific Islander (API) (11.7 per 100,000 females) women and the highest mortality rates were in AI/AN (4.5 per 100,000 females) and African American (AA) (3.9 per 100,000 females) women. Incidence rates decreased for AA women (APC: -4.0; 95% CI: -7.7, -0.2), but were stable for all other races and ethnicities in Oklahoma (APC: -0.8; 95% CI: -2.2, 0.7). A stable trend for mortality was observed in Oklahoma (APC: 0.1; 95% CI: -2.2, 2.5) each year. CONCLUSION: Women in Oklahoma had a higher cervical cancer incidence and mortality rate than the US. A disproportionately higher incidence of cervical cancer among AI/AN and API women and deaths among AI/AN and AA women were observed signaling continuing racial disparities.


  • Understanding the social and community support networks of American Indian women cancer survivors

    Citation: Burnette CE, Liddell J, Roh S, Lee YS, Lee HY. (2018). Understanding the social and community support networks of American Indian women cancer survivors. doi:10.1080/13557858.2018.1458075.

    PMID: 29609476

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVE: Cancer is the leading cause of death among American Indian and Alaska Native (AI/AN) women, and although cancer disparities among AI women are alarming, there is little research focused on the topic of social support and cancer treatment and outcomes. DESIGN: A community advisory board was used to develop and administer the project, and a qualitative descriptive study methodology was used. This research was conducted in partnership with two community-based hospitals in the Northern Plains. The sample included 43 AI female cancer survivors who were interviewed with a semi-structured interview guide. The data were analyzed using content analysis. RESULTS: Emergent themes revealed that AI cancer survivors' non-familial support systems included friends (n?=?12), support groups (n?=?6), churches (n?=?10), co-workers (n?=?5), communities (n?=?4), support from health practitioners (n?=?3) and additional forms of support. CONCLUSION: Results indicate that survivors' networks are diverse, and support broad prevention programs that reach out to churches, community groups, and online forums. These sources of supports can be enhanced through sustainable community-based infrastructures.


  • Understanding the social and community support networks of American Indian women cancer survivors

    Citation: Lee YS, Burnette CE, Liddell J, Roh S. (2018). Understanding the social and community support networks of American Indian women cancer survivors. doi:10.1080/23761407.2018.1455162.

    PMID: 29979943

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Cancer is the leading cause of death among American Indian and Alaska Native (AI/AN) women. Although cancer disparities among AI women are alarming, there is littlle research focused on the topic of social support and cancer treatment and outcomes. A community advisory board was used to develop and administer the project, and a qualitative descriptive study methodology was used. This research was conducted in partnership with two community-based hospitals in the Northern Plains. The sample included 43 AI female cancer survivors who were interviewed with a semi-structured interview guide. The data were analyzed using content analysis. Emergent themes revealed that AI cancer survivors' non-familial support systems included friends (n = 12), support groups (n = 6), churches (n = 10), co-workers (n = 5), communities (n = 4), support from health practitioners (n = 3), and additional forms of support. Results indicate that survivors' networks are diverse and support broad prevention programs that reach out to churches, community groups, and online forums. These sources of supports can be enhanced through sustainable community-based infrastructures.


  • United States colorectal cancer screening practices among American Indians/Alaska Natives, blacks, and non-Hispanic whites in the new millennium (2001 to 2010)

    Citation: Johnson-Jennings MD, Tarraf W, Xavier Hill K, González HM. (2014). United States colorectal cancer screening practices among American Indians/Alaska Natives, blacks, and non-Hispanic whites in the new millennium (2001 to 2010). doi:10.1002/cncr.28855.

    PMID: 25123695

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    BACKGROUND: The objectives of this study were to describe, examine, and compare prevalence estimates of colorectal cancer (CRC) screening practices and to determine whether disparities exist for American Indians/Alaska Natives (AIANs) and blacks compared with whites. METHODS: Behavioral Risk Factor Surveillance System (2001-2010) data from respondents aged ? 50 years (n = 356,073) were used. The primary outcome was self-reported CRC screening according to US Preventive Services Task Force guidelines for endoscopy (colonoscopy or sigmoidoscopy), fecal occult blood test (FOBT), or mixed screening (endoscopy or FOBT). RESULTS: From 2001 to 2010, endoscopy screening increased in the AIAN population by 44.8% (P


  • Use of Evidence-Based Interventions to Address Disparities in Colorectal Cancer Screening

    Citation: Joseph DA, Redwood D, DeGroff A, Butler EL. (2016). Use of Evidence-Based Interventions to Address Disparities in Colorectal Cancer Screening. doi:10.15585/mmwr.su6501a5.

    PMID: 26915961

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Innovative Technology

    Colorectal cancer (CRC) is the second leading cause of cancer death among cancers that affect both men and women. Despite strong evidence of their effectiveness, CRC screening tests are underused. Racial/ethnic minority groups, persons without insurance, those with lower educational attainment, and those with lower household income levels have lower rates of CRC screening. Since 2009, CDC's Colorectal Cancer Control Program (CRCCP) has supported state health departments and tribal organizations in implementing evidence-based interventions (EBIs) to increase use of CRC screening tests among their populations. This report highlights the successful implementation of EBIs to address disparities by two CRCCP grantees: the Alaska Native Tribal Health Consortium (ANTHC) and Washington State's Breast, Cervical, and Colon Health Program (BCCHP). ANTHC partnered with regional tribal health organizations in the Alaska Tribal Health System to implement provider and client reminders and use patient navigators to increase CRC screening rates among Alaska Native populations. BCCHP identified patient care coordinators in each clinic who coordinated staff training on CRC screening and integrated client and provider reminder systems. In both the Alaska and Washington programs, instituting provider reminder systems, client reminder systems, or both was facilitated by use of electronic health record systems. Using multicomponent interventions in a single clinical site or facility can support more organized screening programs and potentially result in greater increases in screening rates than relying on a single strategy. Organized screening systems have an explicit policy for screening, a defined target population, a team responsible for implementation of the screening program, and a quality assurance structure. Although CRC screening rates in the United States have increased steadily over the past decade, this increase has not been seen equally across all populations. Increasing the use of EBIs, such as those described in this report, in health care clinics and systems that serve populations with lower CRC screening rates could substantially increase CRC screening rates.


  • Use of Tracking and Reminder Systems for Colorectal Cancer Screening in Indian Health Service and Tribal Facilities

    Citation: Craig JA, Redwood D, Provost E, Haverkamp D, Espey DK. (2015). Use of Tracking and Reminder Systems for Colorectal Cancer Screening in Indian Health Service and Tribal Facilities.

    PMID: 28216993

    Cancer Sites(s): Colorectal

    Cancer Continuum(s): Detection

    Intervention Site(s): Health-Care System

    Intervention Type(s): Innovative Technology

    BACKGROUND: Colorectal cancer (CRC) is a significant cause of morbidity and mortality among American Indian/Alaska Native (AI/AN) people. Screening at recommended intervals can detect CRC in its early, most treatable stages, or prevent CRC through removal of precancerous polyps. However, CRC screening percentages remain low among AI/AN people. Reminder and tracking systems can be used to improve CRC screening percentages. PURPOSE: In this study we assessed the prevalence of CRC screening reminder and tracking systems in Indian Health Service (IHS), Tribal, or Urban (I/T/U) health facilities. METHODS: A telephone survey of randomly selected small, medium and large I/T/U health facilities nationwide was conducted. Three health facilities from each of the 12 IHS areas nationwide were selected from a list of I/T/U healthcare facilities that provide CRC screening or refer patients to another facility for screening, with the goal of having one small, one medium, and one large I/T/U health facility from each IHS area. RESULTS: Thirty-four facilities (94%) participated in the telephone survey between April 1 and September 24, 2010. All facilities used the IHS Resource and Patient Management System to manage their patient care, and 82% used the Electronic Health Record (EHR) version. Over half of these facilities (55%) performed in-office fecal occult blood tests (FOBT) collected during a digital rectal exam, all of which reported that they also sent FOBT cards home with patients. Fifty-three percent of facilities used an opportunistic, visit-based approach to CRC screening. Nearly a third (32%) of facilities reported using a reminder system to notify patients that they were due for CRC screening. Almost two-thirds (65%) of facilities used a reminder system to notify health care providers that patients were due for CRC screening. While 73% of facilities used a system to track whether patients were due for CRC screening, only 61% used a system to track patient results for CRC screening, and 42% used a system to track patients with a personal history of polyps or CRC. CONCLUSIONS: A majority of facilities performed in-office FOBT tests using a digital rectal exam, which is a practice that is contrary to national CRC screening recommendations. Additionally, the majority of facilities reported not using an organized system for CRC screening. Use of patient reminders was suboptimal. However, facilities did report use of provider reminders, tracking when patients were due for CRC screening, and tracking CRC screening results. As the EHR system becomes more widely used and established, I/T/U facilities could be encouraged to increase their use of the EHR tools available to aid in systematically increasing CRC screening percentages.


  • Using a Participatory Four-Step Protocol to Develop Culturally Targeted Cancer Education Brochures

    Citation: Kulukulualani, MB, Kathryn L. Tsark, JoAnn U. (2008). Using a Participatory Four-Step Protocol to Develop Culturally Targeted Cancer Education Brochures [Article]. 9: 344-355.

    PMID: 18353907

    Cancer Sites(s): Cervical, Prostate, Skin, Oral, Testicular

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    Native Hawaiians have a high cancer burden, but few culturally targeted cancer education brochures exist. The authors followed a participatory four-step protocol, involving more than 200 health providers and clients, to develop and test culturally targeted brochures on skin, oral, cervical, prostate, and testicular cancers. The final products featured Hawaiian faces, scenes, words, and activities. They proved more attractive than existing materials, in particular to younger Hawaiians, and posttests suggested good comprehension of intended messages. This protocol may have application in other communities that want to develop brochures that are attractive, acceptable, readable, and useful to minority clients and their providers. [ABSTRACT FROM AUTHOR] Copyright of Health Promotion Practice is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)


  • Using community advisory boards to reduce environmental barriers to health in American Indian communities, Wisconsin, 2007-2012

    Citation: Adams, AKS, Jamie R. Prince, Ron Williamson, Amy. (2014). Using community advisory boards to reduce environmental barriers to health in American Indian communities, Wisconsin, 2007-2012. 11: E160-E160.

    PMID: 25232747

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Health Education and Promotion

    Background: American Indian communities have a high prevalence of chronic diseases including diabetes, obesity, cardiovascular disease, and cancer. Innovative community-based approaches are needed to identify, prioritize, and create sustainable interventions to reduce environmental barriers to healthy lifestyles and ultimately improve health.; Community Context: Healthy Children, Strong Families was a family-based and community-based intervention to increase healthy lifestyles on Wisconsin American Indian reservations. This intervention arose from a long-standing partnership between University of Wisconsin researchers and 3 of these American Indian communities.; Methods: In each community, community advisory boards (CABs) were established by the residents and university partners. CAB meetings were open and held at various times and locations to increase member participation. CABs featured continual, snowball recruitment; internal and external expert consultation; and coordination with standing tribal committees. Meetings initially focused on understanding community supports for and barriers to healthy lifestyles but quickly turned toward community action for change.; Outcome: CAB interventions decreased environmental barriers to health at each site and improved options for healthy lifestyle choices. Over 5 years, 71 CAB meetings occurred with a total of 1,070 participants. Successful CAB interventions included planting community gardens and an apple orchard, conducting gardening and canning workshops, instituting food-related policies and dog control regulations, building an environmentally friendly playground, and providing access to recreational facilities. The CABs are now self-sustaining.; Interpretation: CABs can be highly effective action teams capable of improving community environments. Our experience shows that academic researchers can partner with community residents to generate programs and policies that will expand access to local food, increase people's choices for engaging in physical activity, and encourage local policy changes that improve overall community health.;


  • Using community engagement to inform and implement a community-randomized controlled trial in the anishinaabek cervical cancer screening study

    Citation: Wood, BB, Ann N. Escott, Nicholas Little, Julian Maar, Marion Ogilvie, Gina Severini, Alberto Bishop, Lisa Morrisseau, Kyla Zehbe, Ingeborg. (2014). Using community engagement to inform and implement a community-randomized controlled trial in the anishinaabek cervical cancer screening study. 4: 27-27.

    PMID: 24600584

    Cancer Sites(s): Cervical

    Cancer Continuum(s): Detection

    Intervention Site(s): Community

    Intervention Type(s): Screening Program

    Social, political, and economic factors are directly and indirectly associated with the quality and distribution of health resources across Canada. First Nations (FN) women in particular, endure a disproportionate burden of ill health in contrast to the mainstream population. The complex relationship of health, social, and historical determinants are inherent to increased cervical cancer in FN women. This can be traced back to the colonial oppression suffered by Canadian FN and the social inequalities they have since faced. Screening - the Papinacolaou (Pap) test - and early immunization have rendered cervical cancer almost entirely preventable but despite these options, FN women endure notably higher rates of diagnosis and mortality due to cervical cancer. The Anishinaabek Cervical Cancer Screening Study (ACCSS) is a participatory action research project investigating the factors underlying the cervical cancer burden in FN women. ACCSS is a collaboration with 11 FN communities in Northwest Ontario, Canada, and a multidisciplinary research team from across Canada with expertise in cancer biology, epidemiology, medical anthropology, public health, virology, women's health, and pathology. Interviews with healthcare providers and community members revealed that prior to any formal data collection education must be offered. Consequently, an educational component was integrated into the existing quantitative design of the study: a two-armed, community-randomized trial that compares the uptake of two different cervical screening modalities. In ACCSS, the Research Team integrates community engagement and the flexible nature of participatory research with the scientific rigor of a randomized controlled trial. ACCSS findings will inform culturally appropriate screening strategies, aiming to reduce the disproportionate burden of cervical disease in concert with priorities of the partner FN communities.


  • Using theater to promote cancer education in Alaska

    Citation: Cueva, MK, R. Lanier, A. Dignan, M. (2005). Using theater to promote cancer education in Alaska. 20: 45-48.

    PMID: 15876182

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Support Group

    Background. Cancer, a rare disease in the 1950s, is now the leading cause of death among Alaska Natives (AN). Methods. Building on AN rich traditions of storytelling to share knowledge and wisdom, a 45 minute play, Understanding, was developed to address cancer-related issues specific to AN. Results. Written audience evaluations assessed the impact of this theater-based education. After seeing the play, 327 (94.5%) people reported feeling more comfortable talking about cancer, 265 (66.1%) shared that they had learned about cancer, and 234 (61.7%) wrote healthy ways they intended to change their behavior. Conclusion. A postplay discussion provided an opportunity for the audience to share their stories, concerns, beliefs, and feelings.


  • Variation in CYP2A6 and nicotine metabolism among two American Indian tribal groups differing in smoking patterns and risk for tobacco-related cancer

    Citation: Tanner JA, Henderson JA, Buchwald D, Howard BV, Nez Henderson P, Tyndale RF. (2017). Variation in CYP2A6 and nicotine metabolism among two American Indian tribal groups differing in smoking patterns and risk for tobacco-related cancer. doi:10.1097/FPC.0000000000000271.

    PMID: 28181923

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Biologic, Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    OBJECTIVE: The Northern Plains (NP) and Southwest (SW) American Indian populations differ in their smoking patterns and lung cancer incidence. We aimed to compare CYP2A6 genetic variation and CYP2A6 enzyme activity (representative of the rate of nicotine metabolism) between the two tribal populations as these have previously been associated with differences in smoking, quitting, and lung cancer risk. PARTICIPANTS AND METHODS: American Indians (N=636) were recruited from two different tribal populations (NP in South Dakota, SW in Arizona) as part of a study carried out as part of the Collaborative to Improve Native Cancer Outcomes P50 Project. A questionnaire assessed smoking-related traits and demographics. Participants were genotyped for CYP2A6 genetic variants *1B, *2, *4, *7, *9, *12, *17, and *35. Plasma and/or saliva samples were used to measure nicotine's metabolites cotinine and 3'-hydroxycotinine and determine CYP2A6 activity (3'-hydroxycotinine/cotinine, i.e. the nicotine metabolite ratio, NMR). RESULTS: The overall frequency of genetically reduced nicotine metabolizers, those with CYP2A6 decrease-of-function or loss-of-function alleles, was lower in the NP compared with the SW (P=0.0006). The CYP2A6 genotype was associated with NMR in both tribal groups (NP, P<0.0001; SW, P=0.04). Notably, the rate of nicotine metabolism was higher in NP compared with SW smokers (P=0.03), and in comparison with other ethnic groups in the USA. Of the variables studied, the CYP2A6 genotype was the only variable to significantly independently influence NMR among smokers in both tribal populations (NP, P<0.001; SW, P=0.05). CONCLUSION: Unique CYP2A6 allelic patterns and rates of nicotine metabolism among these American Indian populations suggest different risks for smoking, and tobacco-related disease.


  • Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse)

    Citation: Haring RC, Henry WA, Hudson M, Rodriguez EM, Taualii M. (2018). Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse). doi:10.1007/s13187-016-1067-5.

    PMID: 27392418

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Community

    Intervention Type(s): Community Based Participatory Research (CBPR)

    Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.


  • Walking forward: a program designed to lower cancer mortality rates among American Indians in western South Dakota

    Citation: Kanekar, SP, Daniel. (2009). Walking forward: a program designed to lower cancer mortality rates among American Indians in western South Dakota. 62: 151.

    PMID: 19402300

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Prevention

    Intervention Site(s): Health-Care System

    Intervention Type(s): Community Based Participatory Research (CBPR), Community Health Worker

    Walking Forward is a community-based participatory research program in western South Dakota funded by the National Cancer Institute (NCI). The primary goal of this initiative is to address the high and ominously increasing cancer mortality rates among American Indians by facilitating access to innovative clinical trials, behavioral and genetic research and tailored patient navigation. The critical outcomes include: an unprecedented accrual rate of 25 percent in clinical trials, including cancer treatment and cancer control trials; a significant reduction in the number of missed treatment days among navigated American Indian cancer patients undergoing radiation therapy; and most importantly, establishment of trusting partnerships with the American Indian communities as reflected in enrollment in a genetic study involving the ataxia telangiectasia mutated gene. The results indicate that the Walking Forward approach presents an effective strategy to overcome the barriers to cancer care in this underserved community.;


  • Weaving Balance into Life: Development and cultural adaptation of a cancer symptom management toolkit for Southwest American Indians

    Citation: Hodge, FSI, Tracy Line Cadogan, Mary P. Martinez, Fernando. (2012). 'Weaving Balance into Life': Development and cultural adaptation of a cancer symptom management toolkit for Southwest American Indians. 6: 182-188.

    PMID: 22160662

    Cancer Sites(s): Cancer (General)

    Cancer Continuum(s): Survivorship

    Intervention Site(s): Unknown

    Intervention Type(s): Health Education and Promotion

    Self-management of cancer symptoms has the potential to decrease the suffering of cancer survivors while improving their health and quality of life. For many racial/ethnic groups, culturally appropriate self-management instruction is not readily available. This paper reports on the first symptom management toolkit developed for American Indian cancer survivors. Part of a larger research study, a three-phase project tested a cancer symptom self-management toolkit to be responsive to the unique learning and communication needs of American Indians in the Southwest USA. American Indian cancer survivors and family members participated in 13 focus groups to identify cultural concepts of cancer and illness beliefs, communication styles, barriers, and recommendations for self-management techniques. Sessions were audiotaped and transcriptions were coded using Grounded Theory. Participants expressed a need for an overview of cancer, tips on management of common symptoms, resources in their communities, and suggestions for how to communicate with providers and others. The 'Weaving Balance into Life' toolkit is comprised of a self-help guide, resource directory, and video. Preferred presentation style and content for the toolkit were pilot tested. American Indian survivors favor educational materials that provide information on symptom management and are tailored to their culture and beliefs. Suggestions for adapting the toolkit materials for other American Indian populations are made. Many cancer survivors lack effective self-management techniques for symptoms, such as pain, fatigue, and depression. The toolkit promotes self-management strategies for survivors and provides family members/caregivers tangible ways to offer support.