Native American Cancer Education for Survivors" (NACES) is designed to improve the quality of life (QOL) of cancer patients by increasing knowledge and informed choice using innovative, tailored web-based technology. The intervention... more
Native American Cancer Education for Survivors" (NACES) is designed to improve the quality of life (QOL) of cancer patients by increasing knowledge and informed choice using innovative, tailored web-based technology. The intervention is based on the Medicine Wheel (body, mind, emotions, spirits) and includes the following components: spirituality, communication, treatment, clinical trials, side effects, palliative care, other health problems, supportive care and resources. Trained Native Patient Advocates implement a four-part QOL survey and the intervention. The survivor may also use the survey and intervention independently. The education intervention is easy-to-understand (reading level grades 5 to 7) and can be tailored to the individual survivor. By winter 2010, more than 600 Native American cancer survivors have completed the QOL survey. 81.8% (n=446) of the participants self-reported their mental health as okay or excellent and almost all (n=519; 93.7%) said their life w...
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... more
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.
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This paper compares quality of life (QOL) outcomes between Native American and non-Native cancer survivors. Native Patient Navigators helped Native cancer patients complete a 114-item QOL survey and access survivorship information... more
This paper compares quality of life (QOL) outcomes between Native American and non-Native cancer survivors. Native Patient Navigators helped Native cancer patients complete a 114-item QOL survey and access survivorship information available on the NACES website. The survey was modified from Ferrell et. al’s QOL measure and assessed the four domains of cancer survivorship: physical, psychological, social, and spiritual. Findings from Native survivors were compared to Ferrell’s findings. This is the first time that QOL outcomes have been compared between Native and Non-Native cancer survivors. Natives scored lower for physical and social QOL, the same for psychological QOL, and higher for spiritual QOL in comparison to non-Natives. Overall QOL scores were the same. Although this is the largest sample of Native cancer survivors reported in peer-reviewed manuscripts, these Native survivorship data are based on a self-selected group and it is unknown if the findings are generalizable to others.
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Medically underserved women in the Greater Denver Metropolitan Area had low rates of routine repeat mammograms in the latter 1990s. "Increasing Mammography Adherence among Medically Underserved Women" was designed to increase... more
Medically underserved women in the Greater Denver Metropolitan Area had low rates of routine repeat mammograms in the latter 1990s. "Increasing Mammography Adherence among Medically Underserved Women" was designed to increase annual rescreening among medically underserved populations living in this area. Four community-based organizations collaborated to implement this 5-year study. A culturally modified navigator model including both face-to-face and telephone formats was used to facilitate mammography for African Americans, Latinas, Native Americans, and poor White women who had not been rescreened in more than 18 months. The navigator-implemented intervention was statistically significant at the 0.05 level for increasing rescreening.
Research Interests: Breast Cancer, Native American, Community Based Participatory Research, Community Health Workers, Humans, and 17 moreAfrican American, Face to Face, American Indian, Female, African American Women, Statistical Significance, Mammography, Colorado, Aged, Middle Aged, Longitudinal Studies, Early Detection, Cancer Education, Adult, Public health systems and services research, Community Networks, and Community Based Organization
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The purpose of this article is to share lessons learned from implementing community-based participatory research (CBPR) in Indian Country that may be generalizable to other medically underserved communities. CBPR is currently included in... more
The purpose of this article is to share lessons learned from implementing community-based participatory research (CBPR) in Indian Country that may be generalizable to other medically underserved communities. CBPR is currently included in multiple grant announcements by the National Institute of Health and Centers for Disease Control and Prevention, but information about this methodology vs traditional research methodology is often misleading. This article addresses some common mistakes made by academic research institutes by sharing what we have learned about how CBPR can be implemented in a respectful manner. The majority of tribal Nations prefer, if not mandate, that CBPR be used in most proposed studies involving their communities today.
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Background: American Indians (AI) experience some of the poorest survival rates from all cancers combined compared with other racial/ethnic groups. In the NE U.S., few cancer control plans explicitly address AI disparities. Tribes like... more
Background: American Indians (AI) experience some of the poorest survival rates from all cancers combined compared with other racial/ethnic groups. In the NE U.S., few cancer control plans explicitly address AI disparities. Tribes like those in the NE are small and reliable estimates from Behavioral Risk Factor Surveys are often not available, leaving an information gap that limits cancer control planning. Methods: In 2009 a medical anthropologist, public health educators and researchers, and tribal health advocates joined forces and designed a cancer needs assessment using rapid assessment procedures. Community-Based Participatory Research (CBPR) principles were applied in an effort to fully engage various tribes in an equitable manner. Lessons Learned: Tribal approval required many steps, meetings and negotiations. Limited resources at the community level constrained data collection practices but also allowed for creative application of rapid assessment techniques. Data collection...
The few American Indian and Alaska Native tribal cancer control plans that exist come in a variety of shapes and sizes, reflecting the concerns, needs, and resources of local state, tribal, academic, and federal agencies. Analysis of the... more
The few American Indian and Alaska Native tribal cancer control plans that exist come in a variety of shapes and sizes, reflecting the concerns, needs, and resources of local state, tribal, academic, and federal agencies. Analysis of the unique tribal comprehensive cancer control plans posted on the Cancer Control P.L.A.N.E.T. web site provides a foundation for the establishment of a cancer control plan for tribes and tribal entities. Moreover, these current plans can serve as a framework to develop a template for possibly streamlining future processes that additional tribes might undertake. For example, the seven established Native cancer control plans might illuminate expedient, culturally sensitive and competent, and cost-effective approaches to collect baseline data on early detection practices or on palliative care resources. Each plan may offer distinct ideas for their populace; some similar information may be revealed in multiple plans. Employing ethnographic, health educatio...
Purpose: Comprehensive Cancer Planning has been carried out by every state and at least seven tribal health programs using a well defined community planning process (http://cancercontrolplanet.cancer.gov/) . Such plans are publicly... more
Purpose: Comprehensive Cancer Planning has been carried out by every state and at least seven tribal health programs using a well defined community planning process (http://cancercontrolplanet.cancer.gov/) . Such plans are publicly available via Cancer PLANET (http://cancercontrolplanet.cancer.gov/state_plans.jsp). Analyzing plans for tribes and comparing them to the states that they reside in may shed light into tribal best practices for this collaborative community based planning effort. Methods: Five states were chosen for this analysis (Alaska, Oklahoma, Oregon, Washington and Minnesota) because there existed at least one tribal plan publically available and these tribes resided in the above mentioned states. The analysis looked at the content and format of the plans and their recommendations. The composition of the boards who made up the planning groups and any mention of tribal epidemiology or unique needs was also noted. Results: Although there was some variation across state...
Mayo Clinic's Spirit of Eagles, in conjunction with the Northwest Portland Area Indian Health Board, sponsored the development of the original (2004) and revised (2011) generic versions of Cancer 101, a program that is disseminated... more
Mayo Clinic's Spirit of Eagles, in conjunction with the Northwest Portland Area Indian Health Board, sponsored the development of the original (2004) and revised (2011) generic versions of Cancer 101, a program that is disseminated nationwide by the Cancer Information Service. Three new modules were added to the curriculum in 2011: Role of Genes (module 4), Biospecimens and Biobanking (module 8) and Chronic Conditions and Cancer (module 9). The generic version is designed to be presented in its entirety through an 8-hour workshop with each module lasting ~30-45 minutes. Spirit of EAGLES identified a Working Group to modify the 3 generic modules into culturally appropriate Native American versions. The Working Group, while recognizing the original program's time specifications, focused on cultural modifications, adding participant interactive activities, stories and examples from Native communities as well as modifying the literacy level to make complex issues such as genetic...
Purpose: In the United States, American Indians and Alaskan Natives (AIAN) face increasing rates of cancer, particularly in Alaska and the North and South Plains. Yet many AIAN face unique challenges resulting in health disparities such... more
Purpose: In the United States, American Indians and Alaskan Natives (AIAN) face increasing rates of cancer, particularly in Alaska and the North and South Plains. Yet many AIAN face unique challenges resulting in health disparities such as struggles with long delays between screening and treatment, much of which may be due to displacement from usual care for those who move off of the reservations or those living within reservations where cancer care is not prioritized and resources are few. Under these circumstances, coping with cancer care is suboptimal. Study Design: Native American Cancer Research sponsors a website where in-depth interviews are publicly available online (http://natamcancer.org/vignettes/vignettes.html). Text from 52 of these case histories was analyzed to reveal coping strategies and mental health concerns. Cases were selected that mentioned chemotherapy or other therapy, challenges and coping solutions. Results: AIAN cancer survivors were both middle aged and o...
Objective: This study evaluated genetic testing interest and specific attitudes to it in five population groups. We sought to identify differences in genetic testing interest and attitudes. Methods: This cross-sectional study utilized... more
Objective: This study evaluated genetic testing interest and specific attitudes to it in five population groups. We sought to identify differences in genetic testing interest and attitudes. Methods: This cross-sectional study utilized self-report data from five groups (African American, Asian American, Hispanic/Latina, Native American, or Appalachian; 49 participants total). Survey items were informed by previous research and input from representatives of the National Cancer Institute (NCI) Special Populations Networks (SPN). Descriptive and nonparametric statistical techniques were used. Results: Testing interest was high generally. All groups endorsed more benefits than risks. Latinas endorsed more total benefits and fewer total risks to testing than African Americans (p<0.001) and Native Americans (p=0.001). Additionally, there were differences between groups with respect to endorsement of specific benefits and/or risks. These included testing to follow doctor recommendation (...
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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... more
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. 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 ...
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The purpose of this article is to explain how a basic hands-on lesson about the human cell was developed, implemented and evaluated through Genetic Education for Native Americans (GENA®) workshops.
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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... more
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.
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The purpose of this paper is to describe how new topics in genetic science are implemented and evaluated within Genetic Education for Native Americans (GENA®) workshops. These workshops are typically implemented during professional... more
The purpose of this paper is to describe how new topics in genetic science are implemented and evaluated within Genetic Education for Native Americans (GENA®) workshops. These workshops are typically implemented during professional conferences, training programs, Native American meetings and at tribal colleges. As genetic science evolves, public health educators are more and more likely to need to understand increasingly
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The prevalence of tobacco dependence in the United States (US) remains alarming. Invariably, smoke-related health problems are the leading preventable causes of death in the US. Research has shown that a culturally tailored cessation... more
The prevalence of tobacco dependence in the United States (US) remains alarming. Invariably, smoke-related health problems are the leading preventable causes of death in the US. Research has shown that a culturally tailored cessation counseling program can help reduce smoking and other tobacco usage. In this paper, we present a mobile health (mHealth) solution that leverages the Short Message Service (SMS) or text messaging feature of mobile devices to motivate behavior change among tobacco users. Our approach implements the Theory of Planned Behavior (TPB) and a phase-based framework. We make contributions to improving previous mHealth intervention approaches by delivering personalized and evidence-based motivational SMS messages to participants. Our proposed solution implements machine learning algorithms that take the participant&amp;amp;amp;amp;amp;amp;amp;amp;#39;s demographic profile and previous smoking behavior into account. We discuss our preliminary evaluation of the system against a couple of pseudo-scenarios and our observation of the system&amp;amp;amp;amp;amp;amp;amp;amp;#39;s performance.
Acknowledgments:,Portions of this chapter were adapted from “Development of an Interviewer Training Manual for a Cervix Health Project on the Apsáalooke Reservation,” by S. Christopher, A. Knows His Gun McCormick, A. Smith, and J. C.... more
Acknowledgments:,Portions of this chapter were adapted from “Development of an Interviewer Training Manual for a Cervix Health Project on the Apsáalooke Reservation,” by S. Christopher, A. Knows His Gun McCormick, A. Smith, and J. C. Christopher, Health Promotion Practice (in press). Adapted with permission,of the publisher. Reprinted with permission,from Sage Publications. The support of the American Cancer Society (Margaret Ann Wise Grant TURSG-01-193-01-PBP) is acknowledged,with gratitude. We also want,to thank community,members,and project staff who were involved in the development of the training manual, our advisory board, Little Big Horn College faculty and staff, and Eugenia Eng. isra_14414_ch06.qxd 4/5/05 15:40 Page 128 DEVELOPING AN INTERVIEWER TRAINING MANUAL WITH MEMBERS OF THE APSÁALOOKE NATION 129 COMMUNITY SETTING The Fort Laramie Treaty established the Apsáalooke Reservation in 1851. Orig- inally 38 million acres, the reservation has been eroded by treaty changes, and
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To explain challenges Native American cancer patients experience throughout the continuum of cancer care. Preliminary findings from the Native American Cancer Survivors Support Network, summaries from focus groups with Native American... more
To explain challenges Native American cancer patients experience throughout the continuum of cancer care. Preliminary findings from the Native American Cancer Survivors Support Network, summaries from focus groups with Native American cancer survivors, and literature review. Cultural and family issues are diverse and affect cancer care situation in many different ways. The oncology nurse needs to understand and respect the diversity among Native American cancer patients and to help the patient and provider find ways to allow for the inclusion of family members, spirituality, and traditional Indian medicine within the Western medical treatment model.
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The Native American Cancer Survivors&#39; 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... more
The Native American Cancer Survivors&#39; 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.
Research Interests: Program Evaluation, Nursing, Focus Groups, Quality of life, Social Support, and 12 morePublic Health, Health Services Research, Self Help Groups, Humans, Program Development, Survivors, United States, Female, Public Administration and Policy, Public health systems and services research, Organizational Innovation, and Neoplasms
Because racial/ethnic disparities in breast cancer survival have persisted, we investigated differences in breast cancer treatment among American Indian, Hispanic, and non-Hispanic White (NHW) women. Surveillance, Epidemiology and End... more
Because racial/ethnic disparities in breast cancer survival have persisted, we investigated differences in breast cancer treatment among American Indian, Hispanic, and non-Hispanic White (NHW) women. Surveillance, Epidemiology and End Results data linked to Medicare claims in New Mexico and Arizona (1987-1997) among enrollees aged 65 and older were used to identify treatment, treatment interval, and mortality risk associated with delays in care. We identified 2,031 women (67 American Indian, 333 Hispanic and 1,631 NHW women with time to treatment information. Treatment intervals from diagnosis to surgery (all stages, 18 versus 4 days, p.
Research Interests: Health Care, Breast Cancer, Treatment Outcome, Cancer treatment, Humans, and 11 moreAmerican Indian, United States, Female, Statistical Significance, New Mexico, Medicare, Aged, International Classification of Diseases, Public health systems and services research, European Continental Ancestry Group, and Mortality Risk
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This commentary provides a summary of a pilot study designed to assist the American Cancer Society in revising the Circle of Life breast health program for American Indians and Alaska Natives (AIANs). Included are analyses of a literature... more
This commentary provides a summary of a pilot study designed to assist the American Cancer Society in revising the Circle of Life breast health program for American Indians and Alaska Natives (AIANs). Included are analyses of a literature review focusing on breast health outreach strategies among AIANs and in-depth interviews with breast health focus group facilitators. Over 70 AIAN breast or cervix cancer screening articles were reviewed, and approximately 20 focus group facilitators were interviewed. A primary finding was that AIAN breast cancer outreach, education, and screening programs are most effective when community-driven and culturally relevant to local tribal nations and geographic regions.
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Gathering complete and accurate data from community groups, particularly medically underserved populations, is challenging. An electronic audience response system (ARS) is a novel method for the efficient collection of data while... more
Gathering complete and accurate data from community groups, particularly medically underserved populations, is challenging. An electronic audience response system (ARS) is a novel method for the efficient collection of data while maintaining participant confidentiality in group settings. Because data are captured electronically, an ARS eliminates the need to transfer data from paper forms, reducing errors and the amount of time required for data management. ARS is a useful data collection tool that works well with diverse populations and greatly increases data accuracy and completeness while maintaining participant confidentiality.