Attitudes and Beliefs of End-of-Life Care Among Blackfeet Indians.

Disparity in hospice use threatens optimal quality of life during the final stage of life while American Indians/Alaska Natives may not be aware of hospice benefits. Our established Blackfeet members and Montana State University collaborative team conducted a modified Duke End-of-Life Care Survey (8 sections with 60 questions) to assess a baseline end-of-life values, beliefs, and attitudes of Blackfeet individuals. In this manuscript, we present the results of 3 sections with 28 questions: Preference of Care; Beliefs About Dying, Truth Telling, and Advance Care Planning; and Hospice Care by examining overall and generational differences. Most participants (n = 92) chose quality of life over quantity of life with using various devices if they had an incurable disease (54-82%), would want to know if they were dying (92%) or had cancer (89%), but had not thought or talked about their preference of end-of-life care (30% and 35% respectively). The results portray understandable cultural context as well as generational differences with personal variability. While an affirmative shift towards hospice was emerging, dissemination of accurate hospice information would benefit people in the partner community. In conclusion, an individual-centered approach-understanding individual need first-may be the most appropriate and effective strategy to promote hospice information and its use.

Development of the Blackfeet Community Hospice Project: Pilot Workshop.

Taboo perception on talking about death and dying among American Indians/Alaska Natives is prevalent. This suppressive value makes hospice introduction difficult, leading hospice disparity. Working together by using a community-based participatory research approach over a decade, we conducted a 6-hour workshop including information sharing and group activities. The purpose of the study was to investigate the community readiness for end-of-life knowledge by conducting a public workshop. We used pre- and post-workshop surveys with Likert-type responses to five questions to assess the effect of workshop in end-of-life knowledge. Thirty individuals participated the workshop; 80% of them reported their knowledge increase on at least one question. While the survey had concerns, positive participant responses indicated readiness and appropriateness to use workshops to increase end-of-life knowledge.

Advance Care Planning in Rural Montana: Exploring the Nurse's Role.

It is recommended that advance care planning take place across the lifespan. Rural populations have a heightened risk for poor quality and high cost of end-of-life care. A doctoral project was completed to assess rural nurses' knowledge, attitudes, and experiences with advance directives using the Knowledge, Attitudinal, and Experimental Surveys on Advance Directives. Descriptive statistics were used for analysis. Participants were nurses who practice in rural settings (N = 22). The average age was 46.4 years; all were white (n = 22), and the majority were baccalaureate prepared (n = 12). Practice settings were primarily in home care and hospice. Knowledge scores on advance directives were low (57%). Nurses felt confident in counseling and initiating discussions with patients and families. Less than one-half of the nurses reported they feel part of the advance care planning team. The majority reported advance directive resources and mentorship of younger nurses would be beneficial and indicated the need for additional education, training, knowledge, time, and support to better assist with advance care planning. Project results and recommendations were presented to the participating health care organization. Recommendations included workplace education, support, mentorship, resources, and education on cultural sensitivity using the rural nursing theory.

Moving Toward Openness: Blackfeet Indians' Perception Changes Regarding Talking About End of Life.

This study was conducted to examine cultural appropriateness and readiness for the Blackfeet people in the United States talking about end of life. In the past, a taboo perception of Blackfeet traditional belief in end-of-life discussion was identified as a core barrier for hospice use. However, a recent anecdotal increase in hospice interest triggered the research team to investigate community-wide interest as well as traditional appropriateness of hospice introduction. The community-based participatory research approach was used to conduct the study. Using convenience sampling, we interviewed 10 tribally recognized Elders and surveyed 102 tribal members who were over 18 years old using a modified Duke End-of-Life Care Survey. Here, our report focused on the perception changes on end-of-life discussion. The elders' statements were divided into two, saying that an end-of-life discussion was not against tradition and that sickness and death would break the living spirit, thus no such discussion. Despite, the importance of a family gathering and the need for knowledge about end-of-life care were confirmed. The survey (response rate 100%; n = 92) showed that 90% of the respondents thought dying was a normal part of life and 76% felt comfortable talking about death. In conclusion, there was a shift in the Blackfeet Indians' attitude toward end-of-life discussion from reluctance to at ease. Recommendations specific to the Blackfeet-related entities are presented.

Native American Death Taboo: Implications for Health Care Providers.

This study was conducted to highlight Native American (NA) perspectives on death taboo in order to examine the cultural appropriateness of hospice services for NA patients, if any. Searching literature that addressed taboo and death from historical, psychological, sociological, and anthropological aspects, a comparison of death perspectives was made between NAs and European Americans. A culturally sensitive transition from palliative care to hospice care was suggested for NA patients and their family.

A committee approach maintaining cultural originality in translation.

Various methods have been used to translate existing assessment tools and clinical nursing materials from one language to another. The method of choice depends on the research objectives, availability of translators, budget, and time. We highlight our experience using the committee approach to translation. This less commonly used approach introduces the concept of cultural consensus building early in the translation process, which is particularly appropriate when languages are culturally and linguistically distant. Our experience centers on the translation of the Primary Communication Inventory (PCI), from English to Japanese, to study first-time parents in Japan.

End-of-life treatment decision making: American Indians' perspective.

This study explored American Indians' end-of-life experiences in treatment decision making. Scarce knowledge about this population's perspective regarding end-of-life treatments has resulted in health care providers (HCPs) functioning at less than optimum levels. Using a community-based participatory research approach, open-ended interview data were collected and analyzed using a grounded theory method. Patient and family participants generally stated that the physicians made the treatment decisions for them, while HCPs believed that patients participated in informed autonomous treatment decision making. Both parties (HCPs and patients and families) were not aware of American Indian's psychological aspect that interfered with the exercise of the right of informed consent. This additional understanding would benefit them in order to result in ethically and legally sound practice of patient's autonomous treatment decision making.

Applying indigenous community-based participatory research principles to partnership development in health disparities research.

This case study of community and university research partnerships utilizes previously developed principles for conducting research in the context of Native American communities to consider how partners understand and apply the principles in developing community-based participatory research partnerships to reduce health disparities. The 7 partnership projects are coordinated through a National Institutes of Health-funded center and involve a variety of tribal members, including both health care professionals and lay persons and native and nonnative university researchers. This article provides detailed examples of how these principles are applied to the projects and discusses the overarching and interrelated emergent themes of sharing power and building trust.

Decision making at end of life among Japanese American families.

This exploratory study describes decision making at end of life among Japanese American families. Using qualitative methods including a one-time, semistructured interview, 16 Japanese American family participants described their experiences with the death of 22 family members. A grounded theory analysis led to the development of a model of a process that reflected the influence of age-cohort generational differences and health care providers' involvement. The model also included four dimensions of family understanding. The four dimensions were awareness of the seriousness of the family members' condition, decision making about life-sustaining treatment, readiness for impending death, and experience of the dying process. Each dimension reflected a continuum from low to high understanding. The results suggest that nurses and other health care providers can impact the level of understanding within each of the dimensions in culturally sensitive ways and contribute to improving the experience with end-of-life decision making for Japanese Americans.