Breast cancer screening among immigrant Muslim arab women in the United States: Analyzing relationships between beliefs, knowledge, spousal support and mammogram utilization.

BACKGROUND: Regular mammogram screenings contribute to a decreased breast cancer (BC) mortality rate. Women from ethnic minorities in the United States, however, often underutilize mammogram screenings; in particular, immigrant Muslim Arab (IMAW) women have low mammogram screening rates. OBJECTIVE: To explore the associations between mammogram utilization and (a) health and religious beliefs, (b) level of knowledge about mammograms, (c) health care provider (HCP) recommendations, and (d) spousal support. METHODS: A cross-sectional study employed online data collection. An Arabic or English survey was completed by women who were 45 or older and married, had immigrated from Arab countries, and had no history of breast cancer. Logistic regression was conducted for data analyses. RESULTS: Of the 184 Immigrant Muslim Arab survey participants, 86.6% reported having had at least one mammogram in their lifetime, and 32.6% adhered to mammograms. Ever having obtained a mammogram and adherence to mammograms were negatively associated with perceived mammogram barriers and positively associated with (a) spousal support, (b) level of mammogram knowledge, and (c) perceived self-confidence. Receiving (HCP) recommendation increased the likelihood of ever having obtained a mammogram. Finally, participants who reported higher levels of perceived mammogram benefits were more likely to have obtained a mammogram within the last 2 years compared to their counterparts. CONCLUSIONS: IMAW have demonstrated low mammogram adherence rate. IMPLICATIONS: Nursing clinicians and scholars must play a role in designing and implementing interventions to promote women adherence to mammograms. Involving husbands in these interventions may improve immigrant Muslim Arab women's mammogram adherence rates.

A window into pain: American Indian cancer survivors' drawings.

In order to explore the cultural constructs of pain, a series of focus groups were held among adult American Indian (AI) cancer survivors and their caregivers in the Southwest USA. Thirteen focus groups held at four sites (reservation, urban setting, hospital and clinic) elicited information on the barriers to cancer pain management. In response to facilitator questions about cancer pain and existing measurement scales, participants drew pictures to better explain their pain type (i.e., "pounding"), intensity (i.e., "spider web-like"), and other more abstract aspects of their pain episodes. Noting this novel outlet, subsequent groups were prompted for illustrations of pain. A total of 17 drawings were collected from focus group participants. We discuss seven of the drawings that best opened a window into the lived experience of pain, reflected through the eyes of cancer survivors. This study provides evidence that self-expression through color, imagery and written personal accounts provides more accurate depictions of pain for Southwest AI cancer survivors than pain scales alone. It is hypothesized that cultural modes of communication (i.e., storytelling) and intergenerational influences of artwork led to the depiction of pain in drawings. Suggestions for further exploration of the use of the pain drawings for pain assessment in healthcare settings are included.

Cancer-Related Symptom Management Intervention for Southwest American Indians.

There is limited literature related to culturally embedded meanings of cancer and related symptoms among American Indians. A culturally appropriate intervention to improve management of cancer-related symptoms, including pain, depression, fatigue and loss of function, was tested. Two-hundred and twenty-two adult American Indians with cancer were recruited from eight Southwest sites for a randomized clinical trial. The intervention group received tailored education, a toolkit with a video, and participated in discussion sessions on cancer symptom management; the control group received information on dental care. Pre- and post-test questionnaires were administered to control and intervention groups. Measures included socio-demographics, cancer-related symptom management knowledge and behavior, and quality of life measures. Male cancer survivors reported poorer self-assessed health status and lower scores on quality-of-life indicators as compared to female cancer survivors. Significant improvement was reported in symptom management knowledge scores following the intervention: management of pain (p = 0.003), depression (p = 0.004), fatigue (p = 0.0001), and loss of function (p = 0.0001). This study is one of the first to demonstrate a change in physical symptom self-management skills, suggesting culturally appropriate education and interventions can successfully enhance cancer-related symptom management knowledge and practice.

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.

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.

Predictors of Pain Management among American Indian Cancer Survivors.

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.

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.

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.

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

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.

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.

HPV awareness among American Indian young adults: implications for health education.

A lack of information about American Indians' awareness and knowledge regarding the human papillomavirus (HPV) exists. This study conducted focus groups among American Indian college students in the Southwest to assess HPV awareness. Fifty-three students participated in the study. Grounded Theory analysis identified common themes. Females reported greater awareness, knowledge and perceived severity of HPV. Frequent misunderstandings about HPV were observed. Males, adolescents and young adults were recommended as intervention targets, with schools and healthcare visits as preferred avenues for education. Recommendations for developing and implementing culturally-competent HPV educational programs for American Indian adolescents and young adults are provided.

"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.

Factors associated with American Indian cigarette smoking in rural settings.

INTRODUCTION: This paper reports on the prevalence, factors and patterns of cigarette smoking among rural California American Indian (AI) adults. METHODS: Thirteen Indian health clinic registries formed the random household survey sampling frame (N = 457). Measures included socio-demographics, age at smoking initiation, intention to quit, smoking usage, smoking during pregnancy, health effects of smoking, suicide attempts or ideation, history of physical abuse, neglect and the role of the environment (smoking at home and at work). Statistical tests included Chi Square and Fisher's Exact test, as well as multiple logistic regression analysis among never, former, and current smokers. RESULTS: Findings confirm high smoking prevalence among male and female participants (44% and 37% respectively). American Indians begin smoking in early adolescence (age 14.7). Also, 65% of current smokers are less than 50% Indian blood and 76% of current smokers have no intention to quit smoking. Current and former smokers are statistically more likely to report having suicidal ideation than those who never smoked. Current smokers also report being neglected and physically abused in childhood and adolescence, are statistically more likely to smoke ½ pack or less (39% vs. 10% who smoke 1+ pack), smoke during pregnancy, and have others who smoke in the house compared with former and never smokers. CONCLUSION: Understanding the factors associated with smoking will help to bring about policy changes and more effective programs to address the problem of high smoking rates among American Indians.

HPV vaccine readiness among American Indian college students.

INTRODUCTION: Young adults experience high rates of human papillomavirus (HPV) infection. This article reports on American Indian (AI) university students' HPV vaccine readiness and female vaccine decision-making. METHODS: Eight focus groups were held with AI students attending four universities. A questionnaire was also administered. Fifty-seven students, 23 males and 34 females, aged 19 to 26 participated. Audio-recorded sessions were transcribed. Common themes were coded and categorized following grounded theory procedures. Statistical tests included chi-square and two sample independent t tests. RESULTS: A significant difference was observed between sexes and HPV risk status (P=.008). Females perceived a higher risk and were more knowledgeable about HPV and the vaccine than males, however, they did not know where to seek information and were less likely to recommend the vaccine to friends. Fifty-two percent of males reported perceived low risk of contracting HPV. Six explanatory factors were identified: low knowledge, access barriers, fear of side effects, culture, adverse historical events, and poor risk perception. DISCUSSION: American Indian female college students are not at a stage of readiness to comply with HPV vaccine recommendations, and need improved access to the HPV vaccine.

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.

A survey of attendees at Native American health care conferences: knowledge, attitudes, and practices about cigarette smoking.

BACKGROUND: Cigarette smoking rates and related health consequences among Native Americans are the highest of any US ethnic group. METHODS: A sample of the attendees at American Indian and Alaska Native health care conferences participated in a survey about cigarette smoking. RESULTS: Of 162 respondents, 11.1% were current smokers, 7.5% of physicians were current smokers, and 80% were lifelong nonsmokers. The majority would ask a smoker to put out cigarettes and would not display ashtrays at home. Nearly all Native American physicians asked their patients about smoking and advised smokers to quit. Respondents were more likely to agree that smoking causes lung cancer (98.7%) as compared to knowing of the associations of smoking with cervical cancer (70.2%), depression (54.5%), and that it is more serious in women (55.2%; P < .01). CONCLUSIONS: Current smoking rates were low, and the physicians advised smokers to quit. However, there was less awareness about women's health problems that relate to cigarette smoking as compared to other health consequences of smoking.

The high incidence of cigarette smoking among American indians of the Northern Plains.

BACKGROUND: American Indians present with high rates of diabetes and smoking. METHODS: A randomized intervention was implemented on 4 Plains Indian reservations. Information on chronic diseases, nutrition, and exercise was presented interactively. In this article, we specifically discuss the high risk behavior of cigarette smoking. RESULTS: Findings indicate an extremely high smoking rate of 57.8% overall, with significantly different rates by age group. Of the participants between the ages of 18 and 24 years, 72.7% were smokers. CONCLUSION: Culturally appropriate smoking prevention, cessation, and control programs are needed to combat the high incidence of cigarette smoking for the American Indians of the Northern Plains.

Sacred tobacco use in Ojibwe communities.

A sacred relationship exists between tobacco and American Indian ceremonial activities and beliefs. This ancient connection continues to play an important role in American Indian communities including the Anishinabe (Ojibwe). Six Ojibwe traditional healers and spiritual leaders described the sacred use of tobacco during interviews. The research provides information on key-informant smoking behaviors, influence of tobacco-industry media, and 3 essential themes: the origin of sacred traditional tobacco; contemporary use and abuse of tobacco; and cultural strengths and meaning of tobacco in Anishinabe (Ojibwe) communities. Health professionals must recognize, be amenable to learn, and understand that sacred tobacco use and smoking commercial cigarette tobacco have separate purposes and functions. The challenge for health professionals, including nurses, is to retain the cultural use and value of tobacco while addressing the abuse and chronic effects of cigarette smoking when providing health care to American Indian clients.

American Indian internet cigarette sales: another avenue for selling tobacco products.

A study conducted by the University of Minnesota found that cigarettes can be purchased on American Indian-owned Internet sites for about one fifth of the price at grocery stores, making this a more convenient, lower-priced, and appealing method of purchasing cigarettes. Researchers and educators are challenged to address this new marketing ploy and to discover ways to curb rising smoking rates in American Indian communities.