The cultural constructs of cancer-related fatigue among American Indian cancer survivors.

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.

Suicide Ideation and the Association of Chronic Disease among American Indians.

Objective: To explore associations of chronic disease, perceived wellness, adverse experiences, and suicide ideation among American Indians. Methods: Thirteen California health clinic registries formed the random household survey sampling frame (N=459) during the first stage of an intervention trial on wellness. Measures included sociodemographics, wellness status, health conditions, suicide ideation, cultural connectivity (speaking tribal language, participating in cultural practices, and feeling connected to the community), and history of physical, sexual, verbal abuse and neglect in childhood, adolescence, and adulthood. Chi square and Fisher exact tests examined bivariate, unadjusted relationships, while multiple logistic regression analysis examined adjusted associations. Results: Adverse experiences, specifically physical abuse and sexual abuse, were associated with obesity in childhood. Having poor cultural connectivity was significantly associated with (1) low perceptions of wellness; (2) physical abuse in childhood and adolescence; (3) sexual abuse in childhood, adolescence, and adulthood; and (4) verbal abuse and neglect in adulthood. Poor perception of wellness was also correlated with suicide ideation. Conclusions: The relationships between suicide ideation, chronic disease, connectivity, and perception of wellness among American Indians are explored in this article.

We Don't Talk about It: Cancer Pain and American Indian Survivors.

Pain is a common symptom among cancer survivors, yet is rarely talked about by American Indians. Understanding the reasons for reduced communication by American Indian cancer survivors is important for healthcare providers, family members, and others providing treatment and support for cancer symptoms. Thirteen focus groups with Southwest American Indian adult cancer survivors were audiotaped and transcribed as part of a randomized intervention to remove barriers to cancer symptom management. Constant comparative methods were employed in the data analysis, topic categories were grouped for comparison, and final assessment followed Grounded Theory methods. Findings were categorized into two major groupings: communication with family members and communication with health care providers. Within these two groupings, three themes emerged to describe cancer pain experiences and communication barriers: (1) We don't talk about it, (2) Respect for healthcare providers; and (3) Culturally prohibitive topics on death and pain experiences. Not talking about their cancer diagnosis and cancer-related pain leaves many American Indian cancer survivors without much-needed social support, contributing to reduced treatment compliance and access to healthcare. Findings have implications for educational interventions and quality of life improvement for American Indian and other underrepresented communities.

Persistent smoking among Northern Plains Indians: lenient attitudes, low harm value, and partiality toward cigarette smoking.

Smoking rates among American Indian youth and adults are the highest in the nation. Funded by the University of Minnesota Cancer Center, the Tobacco Policies Among Plains Indians Project held focus groups on seven reservations during 2001-2002. Members of three Ojibwe reservations in Minnesota, three Sioux reservations in South Dakota, and one Winnebago reservation in Nebraska participated. Areas investigated included smoking knowledge, initiation, attitudes and behaviors, and perceptions of harm. Findings indicate that lenient attitudes toward smoking behaviors, low harm value, and partiality toward the smoking habit and the ritualistic behavior it invokes are long-standing and powerful to overcome. To initiate interventions for persistent smoking, tribes will need to target efforts toward the creation of healthy communities.

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

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.

Storytelling: A Qualitative Tool to Promote Health Among Vulnerable Populations.

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 experience of native peer facilitators in the campaign against type 2 diabetes.

CONTEXT: The use of peer facilitators in health programs has great potential. One important application is prevention and control of type 2 diabetes among American Indians. PURPOSE: To explore the experience of American Indian facilitators in a culturally appropriate intervention (Talking Circles) on 2 Northern Plains reservations. The Talking Circles offered a forum for educational dialogue on diabetes risk factors and the management of type 2 diabetes. METHODS: Phenomenology, a qualitative research approach, was used to answer the research question: "What did Native Talking Circle facilitators experience?" Participants were 4 lay health workers from the intervention reservations who had been trained to present a diabetes curriculum while coordinating and guiding the group discussion. During open-ended, taped interviews, the facilitators shared their experiences conducting the Talking Circles. Analysis categorized the experiences into common themes to explain the phenomena and cultural construction of oral discussions (Talking Circles) of diabetes. FINDINGS: Themes included the concept of "a calling" to do the work, which included a self-growth process, a blending of 2 worldviews as a diabetes intervention strategy, the importance of translating educational materials in a liaison role, and commitment to tribal people and communities. CONCLUSIONS: The experience of the facilitators was positive because they were knowledgeable about American Indian culture and worldview and were trained in both Talking Circle facilitation and type 2 diabetes.

Participant experiences of Talking Circles on type 2 diabetes in two Northern Plains American Indian Tribes.

The Talking Circle, a culturally appropriate, 12-week educational intervention, was employed on two Northern Plains American Indian reservations to provide information on type 2 diabetes. In a phenomenological study, funded as a minority supplement to the Talking Circle intervention, the authors asked 8 American Indian participants of the Talking Circle to describe their experience of being an American Indian Talking Circle participant. Seven common themes describe the phenomenon of participating in a Talking Circle diabetic intervention. The Talking Circle technique was effective in providing information on type 2 diabetes through culturally appropriate community sharing. Type 2 diabetes is viewed by both outsiders and those involved as a chronic disease of the utmost concern in American Indian communities.

Utilizing traditional storytelling to promote wellness in American Indian communities.

Utilizing storytelling to transmit educational messages is a traditional pedagogical method practiced by many American Indian tribes. American Indian stories are effective because they present essential ideas and values in a simple, entertaining form. Different story characters show positive and negative behaviors. The stories illustrate consequences of behaviors and invite listeners to come to their own conclusions after personal reflection. Because stories have been passed down through tribal communities for generations, listeners also have the opportunity to reconnect and identify with past tribal realities. This article reports on a research intervention that is unique in promoting health and wellness through the use of storytelling. The project utilized stories to help motivate tribal members to once more adopt healthy, traditional life-styles and practices. The authors present and discuss the stories selected, techniques used in their telling, the preparation and setting for the storytelling, and the involvement and interaction of the group.

Shared and unshared barriers to cancer symptom management among urban and rural American Indians.

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.

"Weaving balance into life": Development and cultural adaptation of a cancer symptom management toolkit for Southwest American Indians.

INTRODUCTION: 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. METHODS: 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 U.S.A. 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. RESULTS: 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. DISCUSSION/CONCLUSIONS: 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. IMPLICATIONS FOR CANCER SURVIVORS: 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.

California Wellness Study: American Indians and Obesity.

This paper identifies the prevalence and predictors of obesity among California's American Indian adults. A cross-sectional study was conducted at 13 rural sites. Indian healthcare clinics served as the sampling frame and were selected because of their proximity and access to the target population. Four-hundred and fifty adult American Indians participated; 74 percent were female and 26 percent were male. The average age was 40, ranging from 18-74. Measures included socio-demographics, general health, BMI, type 2 diabetes, exercise and dietary habits. Eighty-two percent were overweight, obese or morbidly obese. Chi-square tests revealed three variables significantly associated with BMI categories: having type 2 diabetes, female gender and poor general health status. A logistic regression model for obese/morbidly obese (BMI > 30) versus overweight/normal (BMI < 30) persons found gender and diabetes status as significant predictors, while general health status showed trend. Females had 1.59 greater odds of being obese than males (p=0.04). Those that do not have diabetes are less likely to be obese (p=0.02). Those that do not have good general health were 2.5 times more likely to be obese than those that have good general health (p=0.06). Overall goodness of fit was significant (p=0.0009). It is important to identify individuals and population who are normal/overweight, obese/morbidly obese so support and interventions can be planned and implemented.

American Indian women and cardiovascular disease: response behaviors to chest pain.

Cardiovascular disease (CVD) is currently the number one killer of American women. Consequently, CVD is a concern for all women, including ethnic women. However, little is known about CVD behaviors and responses to CVD symptomology among minority women, especially American Indian women. Response behaviors to chest pain require important actions. This article examines response behaviors to chest pain in a group of American Indian women participants of the Inter-Tribal Heart Project. In 1992 to 1994, 866 American Indian women, aged 22 years and older, participated in face-to-face interviews to answer survey questions on multiple areas related to cardiovascular disease on 3 rural reservations in Minnesota and Wisconsin. A secondary data analysis was conducted on selected variables including demographic characteristics, healthcare access, rating of health status, personal and family history of cardiovascular disease, and action in response to crushing chest pain that lasted longer than 15 minutes. Research findings report that 68% of women would actively seek healthcare immediately if experiencing crushing chest pain that lasted longer than 15 minutes. However, 264 women (32%) would take a passive action to crushing chest pain, with 23% reporting they would sit down and wait until it passed. Analysis revealed women reporting a passive response were younger in age (under age 45) and had less education (less than a high school education). These findings have implications for nurses and other healthcare providers working in rural, geographically isolated Indian reservations. How to present CVD education in a culturally appropriate manner remains a challenge.