Palliative and End-of-Life Care Interventions with Minoritized Populations in the US with Serious Illness: A Scoping Review.

INTRODUCTION: Over the past 20 years, palliative care in the United States has grown significantly. Yet, access to and/or engagement with palliative care for minoritized persons with serious illness remains limited. In addition, the focus of palliative and end-of-life care research has not historically focused on equity-informed intervention development that collaborates directly with minoritized populations. Equity-informed interventions within palliative and end-of-life care research have the potential to champion collaborations with persons with serious illness and their families to mitigate health inequities. The purpose of this scoping review was to examine and describe the literature on the approaches used in the design and development of palliative and end-of-life care interventions with minoritized populations with serious illness. METHODS: The Joanna Briggs Institute methodology for scoping reviews was followed for tracking and reporting purposes. Included articles were described quantitatively and analyzed qualitatively with content analysis. RESULTS: Thirty-seven articles met the inclusion criteria: eight used quantitative methods, eight used qualitative methods, ten reported a community-based participatory research method, nine used mixed-methods, and two had research designs that could not be determined. The qualitative analysis revealed three themes: (1) stakeholder involvement and feedback, (2) intervention focus, and (3) target intervention population (population vs healthcare clinician). CONCLUSIONS: Using an equity-informed research approach is vital to improve palliative and end-of-life care interventions for minoritized communities with serious illness. There is also a need for more robust publishing guidelines related to community-based participatory research methods to ensure publication consistency among research teams that employ this complex research method.

Coming to Terms: Female Veterans' Experience of Serious Illness.

Female veteran populations are growing internationally and are more likely than men to develop certain serious illnesses, including some cancers. In the United States, fewer than 50% of eligible female veterans sought care at Veteran Affairs facilities. In addition, female veterans are not well represented within palliative care research, and little research exists that explores the female veteran experience of living with a serious illness. The purpose of this study was to explore female veterans' experiences of living with a serious illness. This study reports the qualitative findings from a multimethod study using qualitative inquiry to explore female veterans' experiences of living with a serious illness. Participants completed individual, semistructured interviews. Braun and Clarke's method of reflexive thematic analysis guided the analysis. Ten participants shared their experiences, and 3 themes emerged: "You call this quality of life?", coming to terms, and "it" dictates everything. This study highlights the impaired quality of life of female veterans. Palliative care can serve to improve quality of life and return a sense of control back to female veterans. Nurses at all levels can have a positive impact in improving palliative care delivery for the female veteran population in both civilian and government health care sectors.

Factors Associated with COVID-19 Vaccination Uptake in Great Plains American Indian Communities.

With the development of the COVID-19 vaccine in late 2020, the importance of understanding the drivers of vaccine acceptance and vaccine hesitancy is important for the health of American Indian and Alaska Native communities. We conducted a cross-sectional, anonymous survey in October 2021 using established quantitative methods of virtual surveys to reach tribal members living on three reservations in the Great Plains (N = 679). We conducted multivariate analyses using logistic regression to assess the association between independent variables and COVID-19 vaccination status after adjusting for confounding. Respondents were more likely to have received a COVID-19 vaccine if they were older, had a full-time job, had previously received a flu vaccination, reported a higher level of trust in the health care system, had increased access to vaccinations, were able to isolate, or if they held a desire to keep their family safe. This study is one of the first to offer insights into the associations and possible determinants of COVID-19 vaccine uptake among American Indians in the Great Plains and was completed as part of the National Institutes of Health Rapid Acceleration of Diagnostics of Underserved Populations consortium. We identified a set of demographic, socioeconomic, and motivational factors that are associated with COVID-19 vaccination uptake among Great Plains American Indians and Alaska Natives. It is possible that future vaccine uptake may be enhanced through economic development, strengthening health care operations and care quality, and focusing vaccination messaging on family and community impact.

Great Plains American Indians' Perspectives on Patient and Family Needs Throughout the Cancer Journey.

PURPOSE: To explore the perspectives on patient and family needs during cancer treatment and survivorship of American Indian (AI) cancer survivors, caregivers, Tribal leaders, and healers. PARTICIPANTS & SETTING: 36 AI cancer survivors from three reservations in the Great Plains region. METHODOLOGIC APPROACH: A community-based participatory research design was employed. Postcolonial Indigenous research techniques of talking circles and semistructured interviews were used to gather qualitative data. Data were analyzed using content analysis to identify themes. FINDINGS: The overarching theme of accompaniment was identified. The following themes were intertwined with this theme: (a) the need for home health care, with the subthemes of family support and symptom management; and (b) patient and family education. IMPLICATIONS FOR NURSING: To provide high-quality cancer care to AI patients in their home communities, oncology clinicians should collaborate with local care providers, relevant organizations, and the Indian Health Service to identify and develop essential services. Future efforts must emphasize culturally responsive interventions in which Tribal community health workers serve as navigators to accompany patients and families during treatment and in survivorship.

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda.

The Hospice and Palliative Nursing Association established the triannual research agenda to ( a ) provide focus for researchers to conduct meaningful scientific and quality improvement initiatives and inform evidence-based practice, ( b ) guide organizational funding, and ( c ) illustrate to other stakeholders the importance of nursing research foci. HPNA Research Agendas are developed to give direction for future research to continue advancing expert care in serious illness and ensure equitable delivery of hospice and palliative care.

"We're Not Valued, We're Not Heard": Voices of Seasoned Nurses in a Rural State Following the Onset of COVID-19.

The COVID-19 crisis shone a spotlight on long-standing issues in the nursing profession. Currently, nurses feel overworked, unsupported, and undervalued. This interpretive phenomenological study shares the perspectives of 10 seasoned nurses. The overarching theme is "My job doesn't love me back," supported by "Enough pizza already," "Band-Aid on a hemorrhage," "We were heroes and now no one remembers us," "We used to be so trusted," and "Nursing is psychological warfare." It is imperative that systems and leaders listen to the concerns of nurses and provide avenues for nurses to take action to collaborate and convene organizational culture change.

Assessing Color-Blind Racism in Nursing Students.

ABSTRACT: The nursing workforce does not mirror the demographics of the United States, contributing to health disparities related to race. The purpose of this study was to assess possible changes in racial bias among undergraduate nursing students. Students in their first ( n = 58) or fifth ( n = 50) semester completed the Color-Blind Racial Attitudes Scale via an online survey. Fifth-semester students reported significantly more racial bias than first-semester students. Further investigation revealed more influence of students' race: White students indicated greater color-blind attitudes than students of color. Recommendations for integrating multicultural curricula into nursing programs are included.

COVID-19 Testing Factors Among Great Plains American Indians.

BACKGROUND: COVID-19 created unparalleled challenges for vulnerable communities, especially among American Indians and Alaska Natives. An effective COVID-19 response requires a tribally driven effort to understand the perspectives of Tribal members on testing and to ensure that delivery strategies are grounded in the cultural values, traditions, and experiences of the Tribes. METHODS: We conducted a cross-sectional, anonymous survey in October 2021 using established methods to reach Tribal members residing in three Reservations in the Great Plains (N = 679). Multivariate analyses were conducted using logistic regression to assess the association between independent variables and COVID-19 testing uptake after adjusting for confounding. RESULTS: After multivariate adjustment, a respondent's employment status, ability to isolate if diagnosed with COVID-19, and endorsing that COVID-19 testing is only needed if one has symptoms were significantly correlated with having been previously tested for COVID-19. Participants without a full-time job were about half as likely to have been tested for COVID-19 compared to those with full-time jobs. Participants who reported not being able to isolate if they tested positive for COVID-19 and participants who did not think testing was needed if asymptomatic were also half as likely to be tested. CONCLUSIONS: Ensuring that everyone has the ability to isolate, that people who are not working have easy access to testing, and that everyone understands the value of testing after exposure are key steps to maximizing testing uptake. Efforts will only be successful if there is continued investment in programs that provide free testing access for everyone on Reservations.

Navigating Disharmony: Nurse Experiences Providing End-of-Life Communication.

The purpose of this study was to describe nurses' experiences of communicating with patients and families at end of life (EOL). The COMFORT Communication Model guided this descriptive qualitative study. Participants from 1 major health care system located in the Great Plains completed an online survey, which consisted of Likert-type (N = 252) and open-ended questions (n = 201). This article reports the qualitative findings of this survey. Thematic analysis of the participants' narrative responses revealed an overarching theme of disharmony when caring for patients and families at EOL. We identified 3 themes within the overarching theme of disharmony: navigating denial, words matter, and knowledge deficit. Nurses express discomfort and a knowledge deficit when providing communication specific to primary palliative and EOL care. Nursing education has an obligation to ensure that new graduates are trained in and develop comfort with the communication principles of primary palliative and EOL care. This holistic approach may improve the quality of communication surrounding the EOL experience for patients, families, and nurses.

"Calling the Spirit Back:" Spiritual Needs Among Great Plains American Indians.

CONTEXT: American Indians (AIs) are disproportionately affected by serious illness such as cancer. Colonization, cultural genocide, and trauma have adversely affected AIs' ability to attain health and well-being, and in many cases led to the loss of the right to practice traditional ceremonies and rituals. Still many AIs describe well-being as being rooted in spirituality. OBJECTIVES: The purpose of this project was to learn about the perspectives of AI cancer survivors, caregivers, and Tribal leaders and healers specific to spirituality while on the cancer journey. METHODS: Qualitative interviews and Indigenous talking circle methodologies were used to explore AIs cancer survivors, caregivers, and Tribal leaders and healers' perspectives on spirituality while on the cancer journey. A data analysis team consisting of AI and non-AI members analyzed the narrative data. RESULTS: Qualitative analysis of interviews and talking circles revealed 4 major themes related to spirituality: the chasm of colonialism, coexistence of Traditional and Christian religions, calling the Spirit back, and prayer as sacred energy. CONCLUSION: It is critical that clinicians caring for AIs with serious illness seek to understand their patients' spiritual beliefs about disease treatment and death and work with them and their families to support quality of life throughout their illness journey. In addition, clinicians must recognize the systemic racism inherent in our healthcare systems, and dismantle cultural clashes and bias for all patients, particularly AIs, who have long suffered from poorer health outcomes.

Factors Influencing Palliative Care Access and Delivery for Great Plains American Indians.

CONTEXT: Despite the known importance of culturally tailored palliative care (PC), American Indian people (AIs) in the Great Plains lack access to such services. While clinicians caring for AIs in the Great Plains have long acknowledged major barriers to serious illness care, there is a paucity of literature describing specific factors influencing PC access and delivery for AI patients living on reservation land. OBJECTIVES: This study aimed to explore factors influencing PC access and delivery on reservation land in the Great Plains to inform the development culturally tailored PC services for AIs. METHODS: Three authors recorded and transcribed interviews with 21 specialty and 17 primary clinicians. A data analysis team of seven authors analyzed transcripts using conventional content analysis. The analysis team met over Zoom to engage in code negotiation, classify codes, and develop themes. RESULTS: Qualitative analysis of interview data revealed four themes encompassing factors influencing palliative care delivery and access for Great Plains American Indians: health care system operations (e.g., hospice and home health availability, fragmented services), geography (e.g., weather, travel distances), workforce elements (e.g., care continuity, inadequate staffing, cultural familiarity), and historical trauma and racism. CONCLUSION: Our findings emphasize the importance of addressing the time and cost of travel for seriously ill patients, increasing home health and hospice availability on reservations, and improving trust in the medical system. Strengthening the AI medical workforce, increasing funding for the Indian Health Service, and transitioning the governance of reservation health care to Tribal entities may improve the trustworthiness of the medical system.

Utilizing the Consolidated Framework for Implementation Research to Explore Palliative Care Program Implementation for American Indian and Alaska Natives throughout the United States.

Background: A significant shortage of palliative care (PC) services exists for American Indian and Alaska Native people (AI/ANs) across the United States. Using an implementation science framework, we interviewed key individuals associated with AI/AN-focused PC programs to explore what is needed to develop and sustain such programs. Objectives: To identify facilitators of implementation and barriers to sustainability associated with the development of PC programs designed for AI/ANs across the United States. Methods: We interviewed 12 key individuals responsible for the implementation of AI/AN-focused PC services. The Consolidated Framework for Implementation Research (CFIR) guided data coding and interpretation of themes. Results: We identified nine themes that map to CFIR constructs. Facilitators of implementation include high tension for change and respecting cultural values. Barriers to program sustainability include a lack of administrative leadership support. Discussion: AI/AN-focused PC programs should be congruent with community needs. PC program developers should focus on sustainability well before initial implementation.

Undergraduate Nursing Students' Spirituality and Perceived Ability to Provide Spiritual Care: A Mixed-Method Study.

Study purpose: This study's purpose was to explore nursing students' spirituality and perceived ability to provide spiritual care. Design and methods: A convergent mixed method, cross-sectional design was used. A convenience sample included traditional nursing students in their second quarter (n = 53) and final quarter (n = 43) attending a faith-based university and accelerated final quarter nursing students (n = 45) attending a private secular university from two accredited nursing programs. Quantitative data were analyzed using a pairwise Spearman rank correlation and multivariate analysis of variance. Open-ended questions were analyzed using content analysis. Results: Quantitatively, as a student's spirituality increases, their perceived ability to provide spiritual care decreases. Qualitative findings revealed three categories: guidance to recognize spiritual needs, empathy and openness, and intertwined with religion. Conclusion: Quantitatively, nursing students reported their spirituality did not influence their perceived ability to provide spiritual care. Yet, qualitatively, students reported their spirituality assisted in their ability to provide spiritual care. However, students were unable to differentiate between spirituality and religion. Colleges of nursing need to ensure students learn the art of holistic nursing, which includes spirituality and religion along with opportunities to apply and reflect on their spirituality and perceived ability to provide spiritual care.

The Feasibility of the Strengthening Family and an Adapted American Indian Nutrition and Physical Activity Program: A Pilot Study.

PROBLEM: Excessive weight and obesity have been identified as the most serious health problems facing American Indian (AI) children. Thirty-eight percent of the preschool and kindergarten children who participated in this study were either overweight or obese. Potential reasons for this prevalence include the physical activity transition of AI people to sedentary lifestyles, in utero exposure to diabetes, and social determinants of health, especially poverty. In 2013, 29.8 percent of single-race AI/Alaska Native people were living in poverty. Childhood trauma and stress have also been linked to obesity. The experience of numerous negative life events in childhood increases the risk for being overweight by age 15. PURPOSE: Early-life home and preschool interventions with children between the ages of five and 14 have a greater impact on preventing childhood obesity, primarily with children who enter kindergarten already overweight. The purpose of this study was to examine the feasibility and preliminary effects of the Strengthening Family Program (SFP) on the physical health (primarily weight) of AI young children. The goal of this study was to promote strong AI families and improve childhood health; however, the nutrition and exercise activities within the SFP were minimal and not adapted to the AI culture. Therefore, a nutrition and exercise program for AI children between the ages of three to five was developed. The primary objective for this study was then revised to evaluate the feasibility and preliminary effects of the newly developed AI physical activity and nutrition adjunct program for preschool and kindergarten children. METHOD: Two 14-week sessions of the SFP were implemented with an AI activity and nutrition program that incorporated curricula from the Eagle Books and Health is Life in Balance. A mixed methods approach was used with a quasi-experimental wait-list control group design. Quantitative data gathered included child BMI pre- and post-intervention. A focus group was then conducted to identify the strengths and weaknesses of the SFP and the AI activity and nutrition program. RESULTS: Twenty-five children participated in either one of two intervention groups or one waitlist control group. The obesity rates of the preschool and kindergarten intervention groups stayed at 14 percent and at 38 percent pre- and post-intervention, respectively. The obesity rates for the waitlist control group, however, increased from 30 percent at pre-test to 50 percent at post-test. Focus group narratives resulted in two categories of strengths (positive child behaviors and meaning to child) and one weakness (adult disconnect). CONCLUSION: Caregiver participation was limited and challenging. Further community-based dialogue is needed to ensure sustainability.

Female Veteran Use of Palliative and Hospice Care: A Scoping Review.

INTRODUCTION: The number of female veterans in the USA in the age range of 55-64 years increased 7-fold from 2000 to 2015. Female veterans are more likely to suffer from certain mental health disorders, respiratory diseases, neurologic diseases, and some forms of cancer when compared to their male counterparts. Veterans Affairs (VA) healthcare providers need to be prepared to care for this growth of female veterans with serious illness. These serious illnesses require appropriate medical management, which often includes palliative care. It is imperative to determine how VA healthcare providers integrate palliative and hospice care for this population. The purpose of our scoping review was to explore the palliative and hospice care literature specific to female veterans to learn: (1) what evidence is available regarding female veterans' use of palliative and hospice care? (2) To meet the needs of this growing population, what gaps exist specific to female veterans' use of palliative and hospice care? METHODS: A scoping review methodology was employed following the nine-step process described by the Joanna Briggs Institute for conducting scoping reviews. RESULTS: Nineteen articles met the inclusion criteria. Fourteen quantitative articles were included which comprised 10 retrospective chart reviews, one randomized controlled trial, one correlation, one quality improvement, and one cross-sectional. The remaining five were qualitative studies. The sample populations within the articles were overwhelmingly male and white. Content analysis of the articles revealed three themes: quality of end of life care, distress, and palliative care consult. CONCLUSIONS: The female veteran population is increasing and becoming more ethnically diverse. Female veterans are not well represented in the literature. Our review also uncovered a significant gap in the study methodologies. We found that retrospective chart reviews dominated the palliative and hospice care literature specific to veterans. More prospective study designs are needed that explore the veteran and family experience while receiving end of life care. With the rising number of older female veterans and their risk for serious illness, it is imperative that research studies purposefully recruit, retain, analyze, and report female veteran statistics along with their male counterparts. We can no longer afford to disregard the value of the female veterans' perspective.

Psychometric analysis of the Comfort with Communication in Palliative and End-of-Life Care (C-COPE) instrument.

BACKGROUND: Nurses must be comfortable facilitating palliative and end-of-life communication with patients and their families. AIM: A validated instrument measuring the comfort of nurses with conducting end-of-life communication is essential for meeting the goals and wishes of patient care. This study aimed to develop and conduct a psychometric evaluation of the Comfort with Communication in Palliative and End-of-Life Care (C-COPE) instrument. METHODS: Face, content, and construct validity, including test-retest reliability, were conducted. RESULTS: Four experts subjectively confirmed face content validity and the quantitative item content validity index (I-CVI) ranged from 0.67 to 1 and scale content validity index (S-CVI/Ave) was 0.98. Principal axis factoring with Promax rotation yielded a five-factor solution accounting for 66.2% of the variance. The items loading on the five factors ranged from 0.46-0.96 (factor 1), 0.67-0.93 (factor 2), 0.49-0.86 (factor 3), 0.68-0.79 (factor 4), and 0.24-0.96 (factor 5). Internal consistency reliability (coefficient a) was 0.90 for the total C-COPE, and above 0.75 for each factor. The five factors are 'cultural/spiritual considerations,' 'team considerations,' 'addressing decision-making,' 'addressing symptomatology,' and 'deliberate awareness.' Test-retest reliability yielded an intraclass correlation coefficient (ICC) of 0.87 (CI 95%, 0.82-0.91). CONCLUSIONS: The C-COPE is a reliable and valid instrument measuring nurse comfort with palliative and end of-life care communication, yet requires testing in more diverse samples.

The dance of cystic fibrosis: Experiences of living with cystic fibrosis as an adult.

AIMS AND OBJECTIVES: This study sought to understand the experience of living with cystic fibrosis (CF) as an adult. BACKGROUND: Cystic fibrosis is one of the most difficult chronic diseases to manage long term because of numerous challenges faced on a day-to-day basis. The majority of studies focus on improving symptom response to new treatment regimens with the hope of prolonging life. Yet few qualitative studies explore the experience of adults with CF. What is missing from the current literature are the voices of people living with CF, especially as they age. DESIGN: This study follows a hermeneutic phenomenology design guided by Martin Heidegger's philosophy. METHODS: Semi-structured interviews were conducted with nine adults living with CF. Hermeneutic phenomenology guided the data interpretation. This manuscript follows COREQ reporting guidelines. RESULTS: Hermeneutic analysis revealed the overarching theme The Dance of Cystic Fibrosis which is supported by five themes: (a) the paradox of control, (b) living deaths, (c) dancing with death, (d) relearning to dance, and (e) role of the dance partner. CONCLUSIONS: The experience of living with CF as an adult is multidimensional and unique to each person. Despite the uniqueness, there is a shared experience that manifested as The Dance of Cystic Fibrosis. As life expectancy continues to increase for persons with CF, it is essential that researchers and healthcare professionals intentionally consider the life-prolonging effects of the treatment regimen alongside the persons' experience with those effects. RELEVANCE TO CLINICAL PRACTICE: Nurses at all levels of practice should be prepared to address the multifaceted experience of living with CF through thoughtful incorporation of open-ended questions. This allows patients to share their experience with nurses, augmenting their practice of delivering holistic care.

Nurse Comfort With Palliative and End-of-Life Communication: A Rural and Urban Comparison.

Communication is a key component of palliative and end-of-life care. Little is known about comfort with palliative and end-of-life communication among nurses working in rural and urban settings. We assessed this comparison using the 28-item (including 2 ranked items) Comfort with Communication in Palliative and End-of-Life Care instrument. Descriptive analyses of the sample (N = 252) identified statistically significant results differences for age and experience; rural nurses were older and more experienced. Urban nurses reported less comfort than did rural nurses based on composite score analysis (P = .03) and reported less comfort than did rural nurses in talking with patients and families about "end-of-life decisions" (P < .05). Overall, years of experience were significant for more comfort with end-of-life communication. Our instrument could be used within academic settings to establish baseline awareness of comfort with palliative and end-of-life communication and in institutional settings to provide a continuing education bridge from prelicensure through licensure. Moreover, experienced nurses are integral in mentoring new graduates in initiating and sustaining difficult conversations.

Addressing palliative and end-of-life care needs with Native American elders.

BACKGROUND: Life-limiting illness plagues Native Americans, yet access to palliative and end-of-life care, including hospice care, is severely limited. AIM: This study aimed to explore palliative and hospice care with Native American elders and tribal health educators on a Northern Plains reservation in the US. METHODS: Using a community-based participatory approach, participants discussed the cultural acceptability of palliative and hospice care in their tribal community. Monthly talking circles were held over a 5-month period. RESULTS: Opportunities were present for improving cultural awareness and advance directive education to elders. Challenges raised were related to infrastructure, tribal government and the Indian Health Service. Needs identified included cultural awareness and language education for health-care providers and advance directive education. CONCLUSION: Community-based participatory research is useful when working with indigenous populations. Health professionals providing services to Native American communities must embrace cultural differences, seeking to learn from the culture itself how to best meet its people's needs.