Indigenizing Quality of Life: The Goodness of Life for Every Alaska Native Research Study.

The perspectives of Alaska Native (AN) peoples are rarely represented in quality of life (QOL) research. AN representation and voice is imperative to mitigating health disparities and in health promotion for AN peoples. To address these gaps, a sample of 15 AN people (six male, nine female) was recruited to participate in stakeholder QOL research. Five focus groups participated in activities that led participants to identify 28 themes; qualitative data analyses led researchers to identify seven additional themes. All 35 themes were integrated and reduced to the following nine culturally-grounded QOL themes: family, subsistence, access to resources, health and happiness, traditional knowledge and values, acts of self, providing, sobriety, and healing. These themes reflect the values of the participants and are exemplars of a culturally relevant, community based participatory research approach. Future research and health service implications - such as future development of a measure of AN QOL to improve wellness in healthcare settings and beyond - are discussed.

Cultural values, coping, and hope in Yup'ik communities facing rapid cultural change.

Historical trauma and rapid cultural change contribute to a high burden of stress in Alaska Native communities. The goal of the Yup'ik Experiences of Stress and Coping Project was to better understand stress and coping in Yup'ik communities and the role of cultural values and practices in coping. Sixty Yup'ik adults aged 18-84 years took part in semistructured interviews. They discussed how they coped with salient stressful experiences and shared the things that bought them hope and peace. Interview themes were identified and inter-relationships between themes were explored through social network analysis. Participants discussed the importance of cultural traditions in coping, including subsistence, dancing and drumming, intergenerational transmission of knowledge, and reflective awareness of interconnections with others. Participants found strength in family relationships, spirituality, helping others, and coming together as a community. Three coping clusters emerged: Ilaliurucaraq (be welcoming) involved opening one's frame of mind and building connections; Yuuyaraq (Yup'ik way of life) focused on Yup'ik traditions and values; and Assircaarturluni Yuuyaraq (try to live a better life) involved healing from historical trauma. Findings illustrate the resilience and evolving strengths of rural Yup'ik communities facing a continually changing cultural landscape and provide information for developing community-driven culturally based interventions.

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

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.

Current unmet needs of cancer survivors: analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II.

BACKGROUND: Cancer survivors may continue to experience psychosocial and physical needs related to their cancer experience for many years after treatment. The specification of these needs across cancer types and by survivor characteristics may lead to better prevention approaches and clinical responses. Mixed methods were used to examine responses to an open-ended question about current unmet needs from a survey of 2-, 5-, and 10-year cancer survivors. METHODS: Qualitative techniques were used to code themes of unmet needs from open-ended responses. These themes were then examined with quantitative techniques to describe the frequency of unmet needs across disease subgroups and demographic subgroups of survivors. RESULTS: There were 1514 responses to the open-ended question on unmet needs. Respondents ranged in age from 24 to 97 years and included proportionately more women, and 18% were minorities (black and Hispanic). Sixteen themes of unmet needs were identified. The number and type of unmet needs were not associated with the time since cancer treatment. Breast cancer survivors identified more unmet needs than other survivors. Male survivors and especially prostate cancer survivors identified personal control problems as current needs. Older cancer survivors identified fewer unmet needs on average than younger survivors. CONCLUSIONS: This analysis of an open-ended question on unmet needs extends our understanding of how cancer survivors perceive problems related to cancer. How cancer-related needs change over time and differ by sex, race, and ethnicity and how problems with personal control become manifest are areas of inquiry requiring further research.

Consuming untreated water in four southwestern Alaska Native communities: reasons revealed and recommendations for change.

In this article, the authors provide the first in-depth account of why some Alaska Native people drink untreated water when treated water is available. Their qualitative research was conducted in four Alaska Native village communities that have treated water available from a centralized distribution point. Most respondents (n = 172; 82%) reported that some of their household's drinking water came from an untreated source. Motives for drinking untreated water emerged from analysis of open-ended questions about drinking water practice and could be categorized into six themes: chemicals, taste, health, access, tradition, and cost. Importantly, some residents reported consuming untreated water because they both liked untreated water and disliked treated water. As such, interventions to increase safe water consumption should address this dichotomy by providing education about the benefits of treated water alongside the risks involved with drinking untreated water. Based on the findings, the authors provide specific recommendations for developing behavior change interventions that address influences at multiple social-ecological levels.

Disseminating research in rural Yup'ik communities: challenges and ethical considerations in moving from discovery to intervention development.

BACKGROUND: The native people of Alaska have experienced historical trauma and rapid changes in culture and lifestyle patterns. As a consequence, these populations shoulder a disproportionately high burden of psychological stress. The Yup'ik Experiences of Stress and Coping project originated from rural Yup'ik communities' concerns about stress and its effects on health. It aimed to understand the stressful experiences that affect Yup'ik communities, to identify coping strategies used to deal with these stressors and to inform culturally responsive interventions. OBJECTIVES: Here, we examine the process of moving from research (gaining understanding) to disseminating project findings to translation into intervention priorities. We highlight the importance of community participation and discuss challenges encountered, strategies to address these challenges and ethical considerations for responsible intervention research with indigenous communities that reflect their unique historical and current socio-cultural realities. DESIGN: Community-wide presentations and discussions of research findings on stress and coping were followed by smaller Community Planning Group meetings. During these meetings, community members contextualized project findings and discussed implications for interventions. This process placed priority on community expertise in interpreting findings and translating results and community priorities into grant applications focused on intervention development and evaluation. RESULTS: Challenges included translation between English and Yup'ik, funding limitations and uncertainties, and the long timelines involved in moving from formative research to intervention in the face of urgent and evolving community needs. The lack of congruence between institutional and community worldviews in the intervention research enterprise highlights the need for "principled cultural sensitivity". CONCLUSIONS: Cultural sensitivity requires sharing results that have practical value, communicating openly, planning for sustainability and incorporating indigenous knowledge and expertise through a community-guided process. Our research findings will inform continued work within our partnership as we co-develop culturally based strategies for multilevel community interventions to address stress.

Traditional living and cultural ways as protective factors against suicide: perceptions of Alaska Native university students.

INTRODUCTION: Native peoples living in Alaska have one of the highest rates of suicide in the world. This represents a significant health disparity for indigenous populations living in Alaska. This research was part of a larger study that explored qualitatively the perceptions of Alaska Native university students from rural communities regarding suicide. This analysis explored the resilience that arose from participants' experiences of traditional ways, including subsistence activities. Previous research has indicated the importance of traditional ways in preventing suicide and strengthening communities. METHOD: Semi-structured interviews were conducted with 25 university students who had migrated to Fairbanks, Alaska, from rural Alaskan communities. An interview protocol was developed in collaboration with cultural and community advisors. Interviews were audio-recorded and transcribed. Participants were asked specific questions concerning the strengthening of traditional practices towards the prevention of suicide. Transcripts were analysed using the techniques of grounded theory. FINDINGS: Participants identified several resilience factors against suicide, including traditional practices and subsistence activities, meaningful community involvement and an active lifestyle. Traditional practices and subsistence activities were perceived to create the context for important relationships, promote healthy living to prevent suicide, contrast with current challenges and transmit important cultural values. Participants considered the strengthening of these traditional ways as important in suicide prevention efforts. However, subsistence and traditional practices were viewed as a diminishing aspect of daily living in rural Alaska. CONCLUSIONS: Many college students from rural Alaska have been affected by suicide but are strong enough to cope with such tragic events. Subsistence living and traditional practices were perceived as important social and cultural processes with meaningful lifelong benefits for participants. Future research should continue to explore the ways in which traditional practices can contribute towards suicide prevention, as well as the far-reaching benefits of subsistence living.

"What makes life good?" Developing a culturally grounded quality of life measure for Alaska Native college students.

BACKGROUND: Alaska Native (AN) college students experience higher attrition rates than their non-Native peers. Understanding the factors that contribute to quality of life ("what makes life good") for AN students will help inform supportive programs that are congruent with their culture and college life experiences. OBJECTIVES: Co-develop a conceptual model and a measure of quality of life (QOL) that reflects the experiences of AN college students. METHODS: Six focus groups were conducted with 26 AN college students. Within a community-academic partnership, interactive data collection activities, co-analysis workgroup sessions and an interactive findings forum ensured a participant-driven research process. FINDINGS: Students identified and operationally defined eight QOL domains (values, culture and traditions, spirituality, relationships, basic needs, health, learning and leisure). The metaphor of a tree visually illustrates how the domains values, culture and traditions and spirituality form the roots to the other domains that appear to branch out as students navigate the dual worldviews of Native and Western ways of living. CONCLUSIONS: The eight QOL domains and their items identified during focus groups were integrated into a visual model and an objective QOL measure. The hope is to provide a useful tool for developing and evaluating university-based programs and services aimed toward promoting a positive QOL and academic success for AN students.

The benefits of discussing suicide with Alaska native college students: qualitative analysis of in-depth interviews.

Suicide represents a significant health disparity for communities in rural Alaska, and has implications for mental health among people who have lost loved ones from suicide. A qualitative interview study was conducted to examine the ways in which suicide has affected the lives of college students who have migrated from rural villages to an urban university (N = 25). The present research represents a secondary aim of the study-specifically, we examined the affective responses of Alaska Native college students from rural villages after completing in-depth semistructured interviews about their experiences related to suicide. Debriefing questions posed at the conclusion of the interviews revealed that the majority of participants (n 16) stated they felt "better" after completing the interview, and no participants reported feeling "worse." No participant required the use of the safety plan developed in case of severe emotional distress. All participants indicated they would be interested in participating in future research. Analysis of questions pertaining to the interview experience revealed the salience of foundation (the participant's prior experience discussing issues like suicide), process (the interview questions and questioning style), and outcomes (the challenges and benefits of participation described by the respondent). Findings provided important insights concerning the experience of discussing past trauma, perceived importance of research addressing coping with suicide, and the influence of past experiences in the process of talking about suicide.

Forging a new legacy of trust in research with Alaska Native college students using CBPR.

OBJECTIVES: Disparities in the rates of matriculation and graduation are of concern to Alaska Native (AN) students and the universities committed to their academic success. Efforts to reduce attrition require a keen understanding of the factors that impact quality of life (QOL) at college. Yet, a long-standing legacy of mistrust towards research poses challenges to conducting inquiry among AN students. We introduced a partnership between the University of Alaska Fairbank's Rural Student Services (RSS) and the Center for Alaska Native Health Research (CANHR) within which we conducted the "What makes life good?" study aimed towards developing a QOL measure for AN students. Equally important was building a legacy of research trust among AN partners. STUDY DESIGN: We describe Phase I of a 2-phase study that employed a sequential mixed methods approach. Discussed are facilitators, challenges and lessons learned while striving to adhere to the principles of community-based participatory research (CBPR). METHODS: Phase I included formative focus groups and QOL measurement development. The research involved the interplay among activities that were co-developed with the goal of enhancing trust and research capacity. Emphasis was placed on ensuring that data collection and analyses were student driven. CONCLUSIONS: All partners resided at the same university. However, trust and collaboration could not be assumed. Working within a collaborative framework, our partnership achieved the aim of developing a culturally informed QOL measure, while also creating an empowering experience for all partners who became co-investigators in a process that might normally be regarded with mistrust.

Florida mammographer disability training vs needs.

BACKGROUND: There is currently no minimum required competency for mammographers regarding imaging patients with physical disabilities. Yet, as disability prevalence rates increase, mammographers interact with more women with disabilities at breast imaging facilities. PURPOSE: To better understand the disability training that mammographers receive and desire, and the advice they would extend to colleagues regarding improving the experience when performing mammography on women with disabilities. METHODS: Within the context of a community and academic partnership, in-depth telephone interviews were conducted with 14 mammographers practicing in north central Florida. Grounded theory techniques facilitated analysis for major themes. RESULTS: The extent, content, and delivery of disability training varied among participants. Analysis revealed respondents' personal desires for training focused on positioning to "get the best breast image," while mammographers' advice to colleagues focused on the need to afford patience and respect to the patient. Four identified themes included learning on the job, asking for help, desired training to acquire the best possible image, and advice to other mammographers regarding patience. CONCLUSION: Mammographers value the disability training they receive as a foundation for continued learning on the job. Training should comprise both technical and social aspects of performing mammography on women with disabilities, including positioning, disability etiquette, and disability advocacy.

Screening mammography: a cross-sectional study to compare characteristics of women aged 40 and older from the deep South who are current, overdue, and never screeners.

PURPOSE: We sought to identify unique barriers and facilitators to breast cancer screening participation among women aged 40 and older from Mississippi who were categorized as current, overdue, and never screeners. METHODS: Cross-sectional data from a 2003 population-based survey with 987 women aged 40 and older were analyzed. Chi-square analysis and multinomial logistic regression examined how factors organized under the guidance of the Model of Health Services Utilization were associated with mammography screening status. RESULTS: Nearly one in four women was overdue or had never had a mammogram. Enabling factors, including poor access to care (no annual checkups, no health insurance) and to health information, lack of social support for screening, and competing needs, were significantly associated with being both overdue and never screeners. Pertaining to factors unique to each screening group, women were more likely to be overdue when they had no usual source of health care and believed that treatment was worse than the disease. In turn, women were more likely to be never screeners when they were African American, lacked a provider recommendation for screening, and held the fatalistic view that not much could be done to prevent breast cancer. CONCLUSION: Similar and unique factors impact utilization of mammography screening services among women. Those factors could inform efforts to increase screening rates.

The potential of survivorship care plans in primary care follow-up of minority breast cancer patients.

BACKGROUND: When the clinical care of minority breast cancer survivors is transferred from oncology settings to primary care, quality of care may be compromised if their primary care providers do not have adequate cancer treatment records and follow-up care guidelines. Survivorship care plans (SCPs) given to survivors before they transition to primary care settings are designed to improve the transfer of this information. This study examined these issues in a sample of minority breast cancer survivors. DESIGN: During four focus groups with minority breast cancer survivors, data were collected about the types of information survivors remember receiving from their oncologists about follow-up health care needs. Survivors were also asked their opinions on the value and content of a survivorship care plan. RESULTS: Minority breast cancer survivors received variable amounts of information about their cancer treatments. They were dissatisfied with the amount of information they received on cancer-related side-effects, including race-specific information. The American Society of Clinical Oncology's breast cancer survivorship care plan was viewed as important, but too highly technical and limited in information on side-effects and self-care approaches. CONCLUSIONS: Survivorship care plans may help increase information transfer from oncologists to patients and primary care providers, but the content of care plans needs to be adapted to minority patients' concerns. Primary care physicians may be challenged by survivors to explain recommended surveillance guidelines and to respond to untreated physical and psychosocial problems.

Breast cancer fatalism: the role of women's perceptions of the health care system.

Cancer fatalism, which can be understood as the belief that cancer is a death sentence, has been found to be a deterrent to preventive cancer screening participation. This study examines factors associated with breast cancer fatalism among women. We analyzed data from a 2003 survey of women 40 years of age. The survey collected information about respondents' knowledge and attitudes regarding breast health. Analyses compared the characteristics of women who reported and those who did not report a fatalistic attitude. Women with a fatalistic attitude were more likely to be African American, to have a family history of breast cancer, to rate their quality of care as fair or poor, to believe that not much could be done to prevent breast cancer, to believe that breast cancer could not be cured if found early, and to believe that treatment could be worse than the disease.

Psychometric testing of SPIDER: data capture tool for systematic literature reviews.

OBJECTIVE: Systematic literature reviews contribute to evidence-based occupational therapy, yet no data capture tool currently exists to validly and reliably appraise the characteristics and quality of primary studies. METHOD: We determined the psychometrics of Systematic Process for Investigating and Describing Evidence-Based Research (SPIDER) and piloted it with 201 studies included in a systematic literature review. RESULTS: Content validity showed item relevance with 73% agreement between two experts. For the quality construct, seven of nine quality indicators were positively (p < .05) correlated with the overall quality score. The quality scores were positively correlated (p < .05) with two objective measures, inferring criterion validity. Intrarater reliability was moderate to perfect (kappa = 0.4-1.0). Cross-tab analyses showed less variation in experienced reviewers' interrater reliability. CONCLUSION: SPIDER provides plausible opportunities for occupational therapy researchers and graduate students to appraise the characteristics and quality of primary studies but requires testing across other settings.

Population-based health promotion perspective for older driver safety: conceptual framework to intervention plan.

The topic of motor vehicle crashes among the elderly is dynamic and multi-faceted requiring a comprehensive and synergistic approach to intervention planning. This approach must be based on the values of a given population as well as health statistics and asserted through community, organizational and policy strategies. An integrated summary of the predictors (quantitative research), and views (qualitative research) of the older drivers and their stakeholders, does not currently exist. This study provided an explicit socio-ecological view explaining the interrelation of possible causative factors, an integrated summary of these causative factors, and empirical guidelines for developing public health interventions to promote older driver safety. Using a mixed methods approach, we were able to compare and integrate main findings from a national crash dataset with perspectives of stakeholders. We identified: 11 multi-causal factors for safe elderly driving; the importance of the environmental factors--previously underrated in the literature--interacting with behavioral and health factors; and the interrelatedness among many socio-ecological factors. For the first time, to our knowledge, we conceptualized the fundamental elements of a multi-causal health promotion plan, with measurable intermediate and long-term outcomes. After completing the detailed plan we will test the effectiveness of this intervention on multiple levels.

Drawing from Freirian empowerment methods to develop and use innovative learning maps: increasing enrollment of uninsured children on Detroit's eastside.

In 2001, virtually every child on Detroit's eastside was eligible for health coverage, yet approximately 3,000 children remained uninsured. The primary aim of the Eastside Access Partnership (EAP), a community-based participatory research collaboration, was to increase enrollment of uninsured children in state programs. To achieve this aim, one of the approaches that EAP is using is the innovative Learning Map titled Choosing the Healthy Path, which was developed in collaboration with Root Learning, Inc. Although Learning Maps were originally developed to assist corporations in implementing strategic change, their integration of visualization and interactive dialogue incorporates Freirian principles of empowerment education, making them a viable option for providing meaningful learning opportunities for community residents. This article presents the collaborative process involving the University of Michigan, local community-based organizations, community members, and Root Learning consultants to develop a visual map that enables community residents to understand and overcome the barriers that prevent them from obtaining health insurance for their children.

Quality-of-life concerns of African American breast cancer survivors within rural North Carolina: blending the techniques of photovoice and grounded theory.

Social norms imposing a prevailing silence around breast cancer in rural African American communities have made it difficult for survivors to express their quality-of-life (QOL) concerns. In this article, the authors describe how they blended the photovoice method (providing participants with cameras so they can record, discuss, and relate the realities of their lives) with grounded theory techniques to assist 13 African American breast cancer survivors from rural eastern North Carolina in (a) exploring how they perceive and address their QOL within their own social context and (b) developing a conceptual framework of survivorship QOL. The framework that emerged reveals that three social forces (racism, stigmas regarding cancer, and cultural expectations of African American women) drive four QOL concerns (seeking safe sources of support, adjusting to the role of cancer survivor, feeling comfortable about the future, and serving as role models) and that survivors address these concerns by relying on spiritual faith and devising strategies to maintain social standing.