Community-Based Strategies to Reduce Alzheimer's Disease and Related Dementia Incidence Among Rural, Racially/Ethnically Diverse Older Adults.

Purpose of Review: The purpose of this paper was to address the research question "What recent advances in Alzheimer's Disease and Related Dementias (ADRD) risk reduction strategies can be tailored for rural, racially/ethnically diverse populations?" A rural resident's life story that grounded the work is shared. Next, a brief description is provided regarding ADRD risk factors of importance in rural, multicultural settings. Gaps in U.S.-based research are highlighted. Policy actions and interventions that may make a difference in alleviating rural, ADRD-related disparities are offered. Recent Findings: More than a dozen factors, including lack of built environment, periodontitis, poor air quality, and sensory loss, were identified that are of particular relevance to rural groups. Evidence of importance to underserved residents has also emerged regarding the harmful effects of ultra-processed foods on brain health, benefits of even minimal physical activity, and importance of social engagement, on brain health. Summary: Resident-led initiatives will be key to creating change at the community level. Health providers are also called to assist in identifying and adapting culturally specific upstream approaches, in partnership with community stakeholders. These mechanisms are vital for decreasing ADRD burdens in underserved communities facing the largest disparities in preventive care.

Strategies for success in a nursing PhD program and beyond.

PURPOSE: The purpose of this article is to inform newly enrolled PhD students of program expectations, strategies for success, and next steps in the career of a nurse scientist. METHODS: We used empirical evidence and insights from the authors to describe strategies for success during a nursing PhD program and continued career development following graduation. FINDINGS: Measures of success included maintaining health, focus, integrity, and a supportive network, identifying mentors, pursuing new knowledge and advancing research to transform health outcomes. CONCLUSION: Nursing PhD programs help to shape future researchers and leaders. Choosing to obtain a PhD in nursing is an investment in oneself, the discipline, and the science. CLINICAL RELEVANCE: Nursing PhD programs offer opportunities to advance science, impact healthcare and health outcomes, and prepare for a variety of career opportunities. Informing newly enrolled PhD students may better prepare them for what lies ahead and facilitate student retention.

Burnout and moral resilience in interdisciplinary healthcare professionals.

AIMS AND OBJECTIVES: To examine demographic and work characteristics of interdisciplinary healthcare professionals associated with higher burnout and to examine whether the four domains of moral resilience contribute to burnout over and above work and demographic variables. BACKGROUND: Healthcare professionals experience complex ethical challenges on a daily basis leading to burnout and moral distress. Measurement of moral resilience is a new and vital step in creating tailored interventions that will foster moral resilience at the bedside. DESIGN: Cross-sectional descriptive design. METHODS: Healthcare professionals in the eastern USA were recruited weekly via email for 3 weeks in this cross-sectional study. Online questionnaires were used to conduct the study. The STROBE checklist was used to report the results. RESULTS: Work and demographic factors, such as religious preference, years worked in a healthcare profession, practice location, race, patient age, profession and education level, have unique relationships with burnout subscales and turnover intention, with the four subscales of moral resilience demonstrating a protective relationship with outcomes above and beyond the variance explained by work and demographic characteristics. CONCLUSIONS: Higher moral resilience is related to lower burnout and turnover intentions, with multiple work demographic correlates allowing for potential areas of intervention to deal with an increase in morally distressing situations occurring at the bedside. Additionally, patterns of significant and non-significant relationships between the moral resilience subscales and burnout subscales indicate that these subscales represent unique constructs. RELEVANCE TO CLINICAL PRACTICE: Understanding the everyday, pre-pandemic correlations of moral resilience and burnout among interdisciplinary clinicians allows us to see changes that may exist. Measuring and understanding moral resilience in healthcare professionals is vital for creating ways to build healthier, more sustainable clinical work environments and enhanced patient care delivery.

Measuring Health Care Interprofessionals' Moral Resilience: Validation of the Rushton Moral Resilience Scale.

Background: Health care interprofessionals face competing obligations to their patients, employers, and themselves. When ethical conflicts ensue and competing obligations cannot be resolved, health care interprofessionals have reported experiencing symptoms of burnout, moral distress, and other types of moral suffering. Recently, moral resilience or "the capacity of an individual to sustain or restore their integrity in response to moral adversity," has been proposed as a resource to address moral suffering while contributing to well-being. Objectives: Develop and validate an instrument to measure moral resilience. Design: Phase one: item development and expert review. Phase two: focus groups with health care interprofessionals to refine items. Phase three: psychometric testing. Setting/Subjects: Seven hundred twenty-three health care interprofessionals participated; inclusion criteria included being a chaplain, nurse, physician, or social worker, and having practiced at least 1 year. Participants were recruited from seven academic and community hospitals in the Eastern United States. Results: One hundred items were created for expert review. Following focus groups to refine items, 35 items remained for psychometric testing. Eighteen items were removed following item analysis. Exploratory factor analysis (EFA) of the remaining items suggested a four-factor solution, titled Responses to Moral Adversity, Personal Integrity, Moral Efficacy, and Relational Integrity, respectively. Overall reliability was α = 0.84. The Rushton Moral Resilience Scale (RMRS) demonstrated convergent validity with the Connor Davidson Resilience Scale-10 and criterion validity with the Maslach Burnout Inventory-Human Services Survey. Conclusion: The RMRS demonstrated acceptable validity and reliability. Examining the factor structure of moral resilience contributes to burgeoning moral resilience science and enables future research. Moral Resilience offers a promising pathway to support interprofessionals' integrity even when faced with ethical challenges.

Theories of Health Care Decision Making at the End of Life: A Meta-Ethnography.

The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models ( n = 14) followed by family-centered ( n = 11) and behavioral change models ( n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.

Interprofessionals' definitions of moral resilience.

AIMS AND OBJECTIVES: To describe common characteristics and themes of the concept of moral resilience as reported by interprofessional clinicians in health care. BACKGROUND: Research has provided an abundance of data on moral distress with limited research to resolve and help negate the detrimental effects of moral distress. This reveals a critical need for research on how to mitigate the negative consequences of moral distress that plague nurses and other healthcare providers. One promising direction is to build resilience as an individual strategy concurrently with interventions to build a culture of ethical practice. DESIGN/METHODS: Qualitative descriptive methods were used to analyse descriptive definitions provided by 184 interprofessional clinicians in health care attending educational programmes in various locations as well as a small group of 23 professionals with backgrounds such as chaplaincy and nonhealthcare providers. RESULTS: Three primary themes and three subthemes emerged from the data. The primary themes are integrity-personal and relational, and buoyancy. The subthemes are self-regulation, self-stewardship and moral efficacy. CONCLUSIONS: Individual healthcare providers and healthcare systems can use this research to help negate the detrimental effects of moral distress by finding ways to develop interventions to cultivate moral resilience. RELEVANCE TO CLINICAL PRACTICE: Moral resilience involves not only building and fostering the individual's capacity to navigate moral adversity but also developing systems that support a culture of ethical practice for healthcare providers.

Strategies for Promoting High-Quality Care and Personal Resilience in Palliative Care.

Palliative care (PC) clinicians are faced with ever-expanding pressures, which can make it difficult to fulfill their duties to self and others and lead to moral distress. Understanding the pressures that PC clinicians face and the resources that could be employed to ease their moral distress is crucial to maintaining a healthy PC workforce and to providing necessary PC services to patients. In this paper, we discuss recommendations related to two promising pathways for supporting PC clinicians in providing high-quality PC: (1) improving systemic PC delivery and (2) strategies to promote ethical practice environments and individual resilience. Enacting these recommendations holds promise for sustaining higher-quality and accessible PC and a more engaged PC workforce.

Patient and caregiver characteristics related to completion of advance directives in terminally ill patients.

OBJECTIVE: There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney. METHOD: A convenience sample of 206 caregiver-patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion. RESULTS: Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place. SIGNIFICANCE OF RESULTS: Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.

Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review.

BACKGROUND: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate. AIM: Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors. DESIGN: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology. DATA SOURCES: Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-randomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report. RESULTS: Integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary manuscripts (using NVivo coding for first-order constructs) revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision-making; and overall care quality. CONCLUSION: The study team coordinated landmark psychosocial palliative care papers into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings.

Palliative Care as a Standard of Care in Pediatric Oncology.

The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members.

Symptom frequency, severity, and quality of life among persons with three disease trajectories: cancer, ALS, and CHF.

PURPOSE: National reports on end-of-life symptom management reveal a gap in the evidence regarding symptoms other than pain and studies of diseases other than cancer. This study examines the frequency and severity of symptoms and quality of life (QOL) in persons with advanced cancer, amyotrophic lateral sclerosis (ALS), and congestive heart failure (CHF). METHODS: The present study is a cross-sectional examination of symptoms and QOL measured using the McGill QOL Questionnaire, among 147 participants. RESULTS: Forty one percent of participants had advanced cancer, 22% had ALS, and 37% had advanced CHF. A total of 266 symptoms were reported, with the common symptom categories being discomfort/pain, weakness/fatigue/sleep, and respiratory. Participants with CHF had the highest mean symptom severity and the lowest QOL. CONCLUSION: Clinicians should be aware and attentive for symptoms other than pain in patients with advanced illness. Studies on diseases other than cancer, such as CHF and ALS, are important to improve symptom management in all disease groups.

The impact of pediatric blood and marrow transplant on parents: introduction of the parent impact scale.

BACKGROUND: Parents often experience stress-related complications when their child requires blood and marrow transplant (BMT). Previous studies have described the emotional toll BMT places on parents during the acute phase of care and within the context of clinical complications. In this paper we introduce the Parent Impact Scale (PARimpact), designed to capture physical and emotional challenges of the child's health on the parent. The primary aim of this paper is to examine psychometric properties of PARimpact, and the secondary aim is to explore factors associated with PARimpact scores for further hypothesis generation. METHODS: This analysis used a merged dataset of two longitudinal studies. Accompanying parents (n = 363) of children undergoing BMT were surveyed up to six times from pre-BMT baseline to one year after their child's BMT. For this analysis, pre-BMT baseline responses to PARimpact were used to examine the factor structure with Principal Component Analysis (PCA) and Exploratory Factor Analysis (EFA). Construct validity was assessed, and multivariable regression was used to examine relationships between PARimpact and BMT clinical variables. RESULTS: PCA and EFA revealed a one-factor solution with acceptable item loading; Cronbach's α was 0.83 at baseline. Hypothesized differences in known groups were detected for BMT complications with significantly higher PARimpact scores for those with vs. without each complication. In the adjusted multivariable regression models, acute graft versus host disease (b = 5.3; p = 0.03), end organ toxicity (b = 5.9; p < 0.01), and systemic infection (b = 9.1; p < 0.01) were associated with significantly higher mean PARimpact scores in the first 3 months following transplant. After the first 3 months to 1 year post BMT, systemic infection was associated with increased mean PARimpact scores (b = 19.2; p < 0.01). CONCLUSIONS: Initial results suggest that the PARimpact is valid and reliable. Our finding that clinical complications increase the impact of BMT on the caretaking parent indicates the need for BMT healthcare professionals to identify these events and help parents navigate the BMT course. Clinical application of the PARimpact scale should be considered to identify high-risk families and provide targeted interventions to augment care.

Parental decision making for children with cancer at the end of life: a meta-ethnography.

Parents of pediatric oncology patients are faced with difficult decisions when their child reaches the end of life. For health care providers to provide optimal care, they must understand parents' perspectives and preferences in end-of-life decision making. Therefore, this article provides a systematic review of the literature on the end-of-life decision making of parents of children with cancer as well as recommendations for practice and future research. Parents participated in surveys, focus groups, participant observation, and interviews to help researchers understand the expectations, hopes, fears, and values that guide their decision making. Common themes were patient-provider communication, extending time, and understanding prognosis.