Linda Burhansstipanov

Lessons Learned From Community-Based Participatory Research in Indian Country

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.

Cancer Patient Navigator Tasks across the Cancer Care Continuum

Cancer patient navigation (PN) programs have been shown to increase access to and utilization of cancer care for poor and underserved individuals. Despite mounting evidence of its value, cancer patient navigation is not universally understood or provided. We describe five PN programs and the range of tasks their navigators provide across the cancer care continuum (education and outreach, screening, diagnosis and staging, treatment, survivorship, and end-of-life). Tasks are organized by their potential to make cancer services understandable, available, accessible, affordable, appropriate, and accountable. Although navigators perform similar tasks across the five programs, their specific approaches reflect differences in community culture, context, program setting, and funding. Task lists can inform the development of programs, job descriptions, training, and evaluation. They also may be useful in the move to certify navigators and establish mechanisms for reimbursement for navigation services.

A Comparison of Two Native American Navigator Formats: Face-to-Face and Telephone

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.

Urban Native American health issues

This article presents an overview of urban‐dwelling American Indians and Alaska Natives, including a summary of data issues and a brief overview of historical and related social changes resulting in migration from reservations to urban areas.

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

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.

Implementing women's cancer screening programs in American Indian and Alaska Native populations.

The National Breast and Cervical Cancer Early Detection Program provides funding to tribes and tribal organizations to implement comprehensive cancer screening programs using a program model developed for state health departments. We conducted a multiple-site case study using a participatory research process to describe how 5 tribal programs implemented screening services, and to identify strategies used to address challenges in delivering services to American Indian and Alaska Native women. We analyzed data from semistructured interviews with 141 key informants, 16 focus groups with 132 program-eligible women, and program documents. Several challenges regarding the delivery of services were revealed, including implementing screening programs in busy acute-care environments, access to mammography, providing culturally sensitive care, and providing diagnostic/treatment services in rural and remote locations. Strategies perceived as successful in meeting program challenges included identifying a “champion” or main supporter of the program in each clinical setting, using mobile mammography, using female providers, and increasing the capacity to provide diagnostic services at screening sites. The results should be of interest to an international audience, including those who work with health-related programs targeting indigenous women or groups that are marginalized because of culture, geographic isolation, and/or socioeconomic position.

Navigation as an Intervention to Eliminate Disparities in American Indian Communities

OBJECTIVES To identify the role of patient navigation in decreasing health care disparities through an exemplar of a successful patient navigation program for American Indian populations living in the Northern and Southern Plains of the United States. DATA SOURCES Published literature and data from the Native Navigators and the Cancer Continuum study. CONCLUSION Native Patient Navigators successfully collaborated with local American Indian organizations to provide cancer education through a series of 24-hour workshops. These workshops increased community knowledge about cancer, influenced cancer screening behaviors, and increased the visibility and availability of the navigators to provide navigation services. IMPLICATIONS FOR NURSING PRACTICE Reaching those with health care disparities requires multiple strategies. Collaborating with patient navigators who are embedded within and trusted by their communities helps to bridge the gap between patients and providers, increases adherence to care recommendations, and improves quality of life and survival.

The “Spirit of Eagles” legacy

American Indians and Alaska Natives (AI/ANs) suffer from inordinate morbidity and mortality from various cancers. The Spirit of Eagles is a national Special Populations Network that has developed the community infrastructure to support culturally appropriate, long‐range, comprehensive cancer control activities. Subcontracts were developed that involved major cancer centers, nonprofit organizations, policy boards, professional societies, and educators. Community‐based cancer control grants were distributed through the Spirit of Eagles program. Community‐based participatory research involved 38 communities in a broad range of cancer control activities. The key to long‐range improvement in cancer morbidity and mortality in AI/AN communities lies in building infrastructure to support strong partnerships enabling community‐based participatory research. Cancer 2006.

Cancer Prevention and Early Detection in American Indian and Alaska Native Populations

Approximately one million Native Peoples were on the continent at the time of Columbus; at the turn of the 20th century, there were only 200,000 (Russell, 1992). Today, the “American Indian” (which includes all tribes and clans of people who are indigenous to the continental United States) has the smallest number of people among identified racial groups in the United States. Approximately 2.3 million, or 0.9% of the U.S. population, self-identify as American Indians and Alaska Natives (AIANs). This “smallest racial group” should be considered in perspective—although more than 700 tribes of American Indians originally inhabited this land, at least 200 have become extinct. In 1988, the Bureau of Indian Affairs Federal Register listed and recognized approximately 500 tribes of Native Peoples in the United States. Each of the surviving federally recognized tribes has its own unique and diverse culture, and many are acknowledged by the U.S. Congress as “Sovereign Nations.” In addition, hundreds of additional tribes are recognized only by individual states, not the federal government. Many tribes no longer possess reservation or trust lands, and several tribes share a single reservation.

Cancer mortality among Native Americans

Cancer Sites and Geographic Variability As they appropriately point out, the cancer sites experienced by Native populations vary among geographic regions. Specifically, cancer mortality sites among the Southwestern tribes may differ from the more common mortality sites of the Northern and Plains tribes. As discussed by Cobb and Paisano, some of the risks factors related to these variations in cancer mortality are clearly documented (such as habitual tobacco smoking and the high mortality of patients with tobacco-related cancers among the Northern and Plains tribes). As their article explains, there is insufficient information about specific risk factors and many of the common cancers experienced by Native Americans, and there is need for research on these possible risk factors. Their article illustrates the variability of cancer sites in the “Southwest” and “Northern Plains” regions. Such delineation helps the prospective researcher identify the lung, breast, and colon as priority sites for cancer interventions among the Northern and Plains communities, whereas the cervix, stomach, and gallbladder may be greater priorities among communities in the Southwest.