Publications

Abstract

Editor's note: This article is by 22 nursing gerontology experts who are all advocates of nursing home reform. They are listed at the end of this article.

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Background: The contributions of student laboratory experiences to student learning in pre-licensure science classes are not well understood. Despite the generally accepted premise that traditional hands-on laboratory experiences are essential to knowledge construction and superior to non-traditional online experiences, the literature suggests that both experiences promote equal levels of student learning. Objectives: We compared academic performance of students enrolled in a Human Anatomy and Physiology II course with hands-on laboratory to that of students enrolled in the same course but with online laboratory by examining several measures of student learning. Design and participants: This was a quasi-experimental study of undergraduate students aged 18–22 years enrolled in equivalent human anatomy and physiology courses on two separate campuses of a private research university in the United States. One course was associated with hands-on laboratory while the other course was associated with online laboratory. Methods: The Human Anatomy and Physiology Society standardized exam was administered as a pre-test/post-test assessment at the beginning and end of the academic year. Lecture exam scores, laboratory exam scores, and overall course grades served as measures of student learning. Comparisons of student performance between hands-on and online laboratory groups were made using t-tests. Results: Student performance on the pre-test and overall course grades from Human Anatomy and Physiology (part I) were not different between groups. While students in the online lab group did earn significantly higher Human Anatomy and Physiology (part II) course grades, their performance on lecture exams, laboratory exams, and the post-test assessment was not different. Conclusions: Students in a pre-licensure prerequisite course with online laboratory demonstrated mastery of basic science concepts equal to or better than students in the same course with traditional hands-on laboratory. Online laboratory experiences may represent an appropriate, accessible and cost-effective teaching modality for pre-licensure coursework.

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HIV coinfection is associated with more rapid liver fibrosis progression in hepatitis C (HCV) infection. Recently, much work has been done to improve outcomes of liver disease and to identify targets for pharmacological intervention in coinfected patients. In this study, we analyzed clinical data of 1,858 participants from the Women’s Interagency HIV Study (WIHS) to characterize risk factors associated with changes in the APRI and FIB-4 surrogate measurements for advanced fibrosis. We assessed 887 non-synonymous single nucleotide variants (nsSNV) in a subset of 661 coinfected participants for genetic associations with changes in liver fibrosis risk. The variants utilized produced amino acid substitutions that either altered an N-linked glycosylation (NxS/T) sequon or mapped to a gene related to glycosylation processes. Seven variants were associated with an increased likelihood of liver fibrosis. The most common variant, ALPK2 rs3809973, was associated with liver fibrosis in HIV/HCV coinfected patients; individuals homozygous for the rare C allele displayed elevated APRI (0.61, 95% CI, 0.334 to 0.875) and FIB-4 (0.74, 95% CI, 0.336 to 1.144) relative to those coinfected women without the variant. Although warranting replication, ALPK2 rs3809973 may show utility to detect individuals at increased risk for liver disease progression.

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Irritable bowel syndrome (IBS) is associated with depressive symptoms, but this relationship is poorly understood. Emerging research suggests that gut microbes are associated with symptoms in persons with IBS. The purpose of this integrative review is to describe the state of the science of the microbial relationship between IBS and depressive symptoms. PubMed, CINAHL, PsychINFO, and Web of Science were searched using “irritable bowel syndrome,” “microbiome,” “depression,” and related terms. Included articles were published in peer reviewed journals in English from 2009 to 2018. Studies on inflammatory bowel conditions, extra-intestinal microbiomes, or animal models were excluded. Fourteen quantitative studies met inclusion criteria, were critically appraised, and were analyzed using the Whittemore and Knafl method. Analysis revealed a consistently lower microbial biodiversity and lower proportions of Bifidobacterium and Lactobacillus in persons with IBS and co-occurring depressive symptoms. Inclusion of participants with moderate or greater depressive symptoms scores distinguished the studies which reported microbe differences in depressive symptoms. The results of this integrative review underscore the need for studies with larger samples and inclusion of a larger range of depressive symptoms guided by an overarching conceptual framework, such as the biopsychosocial ecology framework. This effort needs to be combined with longitudinal designs in order to identify related microbial markers.

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Background: Self-care is essential to cardiovascular disease (CVD) health outcomes, but may be challenging for older working adults. Objective: Describe self-care and the relationship of work-related characteristics to self-care among older workers with CVD. Methods: Convergent mixed methods design (n = 108) assessed self-care, organization of work, job-level and clinical factors; qualitative data (n = 40) explored self-care and working. Data integrated in the final analytic phase. Results: Sixty-eight percent reported adequate self-care maintenance (SC-CHDI maintenance ≥70); only 22% had adequate self-care management (SC-CHDI management ≥ 70). Controlling for physical capacity, work-related factors explained 22% variance in self-care maintenance; physical capacity was only significant determinant of self-care management. Individuals with poor self-care described low job control, job stress and work-life imbalance that interfered with routine self-care. Individuals with poor self-care management reported “feeling stressed out” and “extreme fatigue” attributed to their job. Conclusions: Interventions targeting self-care, stress management and work-life balance among older workers with CVD are needed.

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Background: Prior studies have documented associations between preterm birth and severe maternal morbidity (SMM) but the prevalence and correlates of dual burden are not adequately understood, despite significant family implications. Purpose: To describe the prevalence and correlates of the dual burden of SMM and preterm birth and to understand profiles of SMM by dual burden of preterm birth. Approach: This retrospective cohort study included all California live births in 2007-2012 with gestations 20-44 weeks and linked to a birth cohort database maintained by the California Office of Statewide Health Planning and Development (n = 3,059,156). Dual burden was defined as preterm birth (<37 weeks) with severe maternal morbidity (SMM, defined by Centers for Disease Control). Predictors for dual burden were assessed using Poisson logistic regression, accounting for hospital variance. Results: Rates of preterm birth and SMM were 876 and 140 per 10,000 births, respectively. The most common indications of SMM both with and without preterm birth were blood transfusions and a combination of cardiac indications. One-quarter of women with SMM experienced preterm birth with a dual burden rate of 37 per 10,000 births. Risk of dual burden was over threefold higher with cesarean birth (primiparous primary aRR = 3.3, CI = 3.0-3.6; multiparous primary aRR = 8.1, CI = 7.2-9.1; repeat aRR = 3.9, CI = 3.5-4.3). Multiple gestation conferred a six-fold increased risk (aRR = 6.3, CI = 5.8-6.9). Women with preeclampsia superimposed on gestational hypertension (aRR = 7.3, CI = 6.8-7.9) or preexisting hypertension (aRR = 11.1, CI = 9.9-12.5) had significantly higher dual burden risk. Significant independent predictors for dual burden included smoking during pregnancy (aRR = 1.5, CI = 1.4-1.7), preexisting hypertension without preeclampsia (aRR = 3.3, CI = 3.0-3.7), preexisting diabetes (aRR = 2.6, CI = 2.3-3.0), Black race/ethnicity (aRR = 2.0, CI = 1.8-2.2), and prepregnancy body mass index <18.5 (aRR = 1.4, CI = 1.3-1.5). Conclusions: Dual burden affects 1900 California families annually. The strongest predictors of dual burden were hypertensive disorders with preeclampsia and multiparous primary cesarean.

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Adult day service centers (ADSCs) provide community-based long-term care, including meals, to racially diverse older adults, 47% of whom have dementia and consequently experience elevated nutritional risk. We examine nutritional behaviors for Chinese and Vietnamese persons living with dementia (PLWD) in ADSCs and evaluate the extent to which ADSCs provide person-centered nutritional care. Multi-stakeholder interviews were conducted. Data were coded using Dedoose and analyzed using Braun and Clarke’s six-step method. The Model for the Provision of Good Nutritional Care in Dementia guided analysis. Barriers to food intake included distracting meal environment, rigid mealtimes, and excessively restrictive diets. Conversely, peer relationships, culturally tailored meals and celebrations, and consistent staff assisting with feeding benefited PLWD. ADSCs can support healthy nutritional behaviors and quality of life among PLWD through person-centered nutritional care. To optimize nutritional services, further exploration is needed with respect to the ADSC environment, users’ culture and ethnicity, and liberalized diets for PLWD.

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Purpose: Recruitment and retention of adolescents and young adults (AYAs) in couple-based HIV prevention research can be difficult. This study’s primary objective is to identify factors that influenced Black and Latino AYAs to participate in couple-based HIV/STI prevention research. Design: In-depth, semi-structured qualitative interviews. Setting: Face-to-face interviews with couples recruited from the South Bronx, New York. Participants: Twenty-three heterosexual couples (46 individuals) aged 16-28 (M = 20.1, SD = 3.01). Methods: Participants completed 60 to 90-minute individual and dyadic interviews. All interviews were audio-recorded and transcribed. Thematic analysis was conducted to identify key themes. Results: Two levels of influence emerged from participants’ interviews regarding their reasons for study participation: 1) individual factors (interest in the study topic, study incentives, opportunity to help their community, and opportunity to learn something new), 2) interpersonal factors (positive interactions with the research team, partner’s desire to participate and relationship strengthening). There were key differences by gender and recruitment order. Conclusion: Black and Latino AYAs report multiple reasons for participating in couple-based research. Highlighting the benefits of study participation to themselves, their relationships, and their communities may be an important strategy for engaging AYAs in couple-based research.

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Medical professionalism is more than a demonstration of individual competencies. Becoming a member of the medical profession is not only about passing a set of milestones but also about embodying the values, behaviors, and identity of a physician through a process of professional identity formation. The major frameworks for medical professionalism, the process of professionalization, and the importance of socialization in medicine are discussed. The reader is encouraged to reflect on who they are and who they want to become. Thus, this chapter provides a roadmap to medical professionalism. Physicians have a fiduciary duty to act in the best interest of their patients and embrace lifelong learning.

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Background: Nursing brings a unique lens to care of patients with pain and opioid misuse. Aims: This scoping review describes nursing's contribution to the literature on the management of patients with pain and opioid misuse, generating evidence to guide clinical care. Design: The scoping review was conducted according to Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Reviews guideline. Data Sources: Using combined key terms (“opioid misuse,” “pain,” “nursing”) in systematic searches in PubMed and Cumulative Index to Nursing and Allied Health Literature (CINAHL) electronic databases, snowball technique, and personal knowledge resulted in 108 relevant articles, reports, and websites. Analysis Method: Summative approach to content analysis was used to quantify and describe nursing's contribution to the literature. Results: Contributions of nurses emerged in the areas of research, clinical practice, policy, and education. The highest number of publications addressed research (50%, 54 of 108), whereas the fewest number of publications involved education (7%, 8 of 108). Conclusion: Results provide a picture of the breadth of expertise and crucial leadership that nurses contribute to influence management of patients with pain and opioid misuse. Implications for Nursing: This scoping review indicates the importance of continued support from key stakeholders, including training and interprofessional collaboration opportunities supported by the National Institutes of Health, to sustain nursing's contribution to quality care of patients with pain and opioid misuse. Ultimately, all health care professionals must collaborate to conduct rigorous research and construct evidence-based guidelines to inform policy initiatives and education strategies to solve the complex co-occurring epidemics of pain and opioid misuse.

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Background and Objectives: The Nurses Improving Care for Healthsystem Elders (NICHE) is a nurse-led education and consultation program designed to help health care organizations improve the quality of care for older adults. To conduct a scoping review of the evidence associated with the NICHE program to (a) understand how it influences patient outcomes through specialized care of the older adult and (b) provide an overview of implementation of the NICHE program across organizations as well as its impact on nursing professionals and the work environment. Research Design and Methods: Six databases were searched to identify NICHE-related articles between January 1992 and April 2019. After critical appraisal, 43 articles were included. Results: Four thematic categories were identified including specialized older adult care, geriatric resource nurse (GRN) model, work environment, and NICHE program adoption and refinement. Specialized older adult care, a key feature of NICHE programs, resulted in improved quality of care, patient safety, lower complications, and decreased length of stay. The GRN model emphasizes specialized geriatric care education and consultation. Improvements in the geriatric nurse work environment as measured by perceptions of the practice environment, quality of care, and aging-sensitive care delivery have been reported. NICHE program adoption and refinement focuses on the methods used to improve care, implementation and adoption of the NICHE program, and measuring its impact. Discussion and Implications: The evidence about the NICHE program in caring for older adults is promising but more studies examining patient outcomes and the impact on health care professionals are needed.

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The situation-specific theory of heart failure (HF) self-care, developed in 2008 and revised in 2016 is used worldwide by clinicians and researchers. Central to this theory is the description of self-care as a naturalistic decision-making process involving the choice of behaviors that maintain physiologic stability (maintenance), symptom perception, and the response to symptoms when they occur (management).

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Introduction:Misalignment between lifestyle behaviors and endogenous circadian rhythms is associated with elevated nocturnal blood pressure (BP) in experimental studies; however, less is known about free-living (i.e. nonlaboratory) circadian disruption and nocturnal BP. Additionally, sex-specific cardiovascular implications of circadian disruption are unclear.Objective:To examine the associations between rest - activity rhythms (RAR), a field-based estimate of circadian disruption, and nocturnal BP characteristics in young men and women.Methods:Fifty participants (20 ± 1 years; 20 men/30 women) underwent 24-h ambulatory BP monitoring following 14 days of wrist actigraphy. RAR variables of interdaily stability (day-to-day consistency in RAR), intradaily variability (within-day fragmentation of RAR), and relative amplitude (difference between peak vs. trough activity) were derived from actigraphy. Multivariable regression models of mean nocturnal SBP, DBP, and SBP dipping were generated to test main associations with RAR variables, and sex × RAR interactions. Daytime BP, race, BMI, physical activity, sleep duration, alcohol, caffeine, and sodium intake were considered as covariates.Results:In the full sample, no main associations between RAR and nocturnal BP characteristics were found. Sex interacted with RAR such that in women, higher interdaily stability (β = -5.39, 95% CI = -10.04 to -0.73, P = 0.024) and relative amplitude (β = -4.78, 95% CI = -9.22 to -0.34, P = 0.036) were both associated with lower nocturnal SBP. Sex-stratified multivariable models of nocturnal BP also revealed associations between interdaily stability and relative amplitude with SBP dipping in women (all P ≤ 0.01). No associations were apparent in men.Conclusion:Consistent and high-amplitude RAR are favorably associated with nocturnal BP characteristics in young women.

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Background: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer’s disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD). Objective: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team. Design: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA. Subjects: Hospice social workers currently practicing in the United States with at least 1 year of experience. Measurements: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form. Results: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p <.0001) and confidence in managing behavioral symptoms (16.86%, p =.01) and depression (25.18%, p <.0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program. Conclusions: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.

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Objectives: To examine how immigrant status and family relationships are associated with advance care planning (ACP) engagement and end-of-life (EOL) preference in burial planning among older Chinese Americans, the largest subgroup of Asian Americans. Design: Cross-sectional survey. Setting: Communities in Honolulu, Hawai'i. Participants: Participants were 430 older Chinese Americans aged 55 years and older. Measures: Measures included ACP contemplation, ACP discussion, and EOL preference in burial planning, immigrant status, family cohesion, family conflict, demographic information, and health status. Results: Results show that in comparison to foreign-born Chinese Americans, US-born Chinese Americans were more likely to have ACP contemplation [odds ratio (OR) 2.80, 95% confidence interval (CI) 1.39-5.63], ACP discussion (OR 3.02, 95% CI 1.50-6.08), and preferences for burial plans at the end of life (OR 4.56, 95% CI 2.04-10.18). Family conflict increased the possibility of having ACP contemplation (OR 1.21, 95% CI 1.07-1.38), ACP discussion (OR 1.22, 95% CI 1.07-1.39), and EOL preference in burial planning (OR 1.22, 95% CI 1.04-1.42), whereas family cohesion was not associated with these study outcomes. Conclusions and Implications: This study suggests that ACP should be adapted to be more culturally appropriate, especially in a time of coronavirus and xenophobia, such as framing ACP as a tool to help families reduce stress while fulfilling filial obligations, in order to ensure equitable access to ACP.

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Context: Persons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care. Objectives: To summarize and evaluate existing palliative and end-of-life care interventions that aim to improve outcomes for racial and ethnic underrepresented populations in the United States. Methods: We conducted a systematic review of the literature in the English language from four databases through January 2020. Peer-reviewed studies that implemented interventions on palliative care, advance care planning, or end-of-life care were considered eligible. Data were extracted from 16 articles using pre-specified inclusion and exclusion criteria. Quality was appraised using the modified Downs and Black tool for assessing risk of bias in quantitative studies. Results: Five studies were randomized controlled trials, and the remainder were quasi-experiments. Six studies targeted Latino/Hispanic Americans, five African Americans, and five, Asian or Pacific Islander Americans. The two randomized control trials reviewed and rated “very high” quality, found educational interventions to have significant positive effects on advance care planning and advance directive completion and engagement for underrepresented racial or ethnic groups. Conclusion: The effectiveness of advance care planning, end-of-life, and palliative care interventions in improving outcomes for underrepresented racial and ethnic populations remains uncertain. Randomized controlled trials and educational interventions indicate that interventions targeting underrepresented groups can have significant and positive effects on advance directives and/or advance care planning-related outcomes. More high-quality intervention studies that address racial and ethnic health disparities in palliative care are needed, particularly those that address systemic racism and other complex multilevel factors that influence disparities in health.

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Objectives: To examine the factors of advance directive (AD) completion among older Chinese Americans. Design: Cross-sectional survey. Setting and Participants: Data came from 435 Chinese Americans aged 55 years and older living in 2 metropolitan areas through self-administered questionnaires and research assistant–administered interviews in 2018. Participants' average age was 75 years (standard deviation = 9.4). Methods: Logistic regression was used to examine factors associated with AD completion. Results: Approximately 14% of participants completed an AD. Older age [odds ratio (OR) 1.07, 95% confidence interval (CI) 1.02-1.12], higher level of acculturation (OR 2.15, 95% CI 1.39-3.33), higher expectation for intergenerational support (OR 1.52, 95% CI 1.02-2.27), and having US citizenship (OR 3.02, 95% CI 1.26-7.23) were positively associated with AD completion. Physical and mental health needs were not significantly associated with AD completion. Conclusions and Implications: This study is among the first focusing on AD completion among Chinese Americans, one of the fastest-growing older minority populations in the United States. Findings highlight the influence of socioeconomic and cultural factors on AD completion and illustrate the importance of developing culturally sensitive interventions to promote end-of-life care decision making among older Chinese Americans.

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Background: Little is known about advance directives (ADs) and end-of-life (EOL) care preferences among the general population in Mainland China. This study aimed to describe knowledge and attitudes of ADs and EOL care preferences, and to explore factors related to preferences for ADs among Chinese adults. Methods: The sample included 1114 adult participants in Wuhan, Mainland China. A brief message including the link to the online survey was sent to local residents who were registered at household registration management centers in Wuhan. The questionnaire included information regarding demographics, self-rated health, views on ADs and EOL care. Bivariate analyses and binary forward logistic regression were conducted to examine factors related to ADs preferences of Chinese adults. Results: The average age of the sample was 48.0 years and more than half of the sample was female. 81.8% had never heard of ADs, but 86.6% indicated that they might create one after learning what ADs were. 58% would choose hospice care if they were terminally ill whereas 48.7% of the participants wanted to die at home. 92.3% would want to know their diagnosis and prognosis if ill; however, if their family members were diagnosed with an incurable disease, 50.5% would not tell their ill family member the actual diagnosis and prognosis. Those who had heard of ADs (OR = 1.567, p < 0.001), earned an associate’s degree (OR = 2.448, p < 0.001) or a bachelor’s degree or higher (OR = 2.382, p < 0.001), and self-rated their health as very poor/poor (OR = 1.002, p = 0.001) were more likely to be willing to make an AD than their counterparts. However, those who were single (OR = 0.149, p < 0.001) or widowed /divorced/separated (OR = 0.405, p = 0.001) were less likely to be willing to make an AD than the married ones. Conclusions: Chinese adults showed positive attitudes towards ADs. There is an urgent need to promote more educational initiatives and raise awareness on the importance of ADs. It is important to develop more policies and legislation about ADs to improve the quality of EOL care in Mainland China.

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Substance use problems are highly prevalent among persons living with (PLWH) in the United States and serve as serious barriers to engagement in HIV care. Yet, in contrast to studies of single substances, little is known about patterns of polysubstance use in this population. Moreover, other risk factors (e.g., financial hardship, incarceration, homelessness, and mental health distress) are also prevalent and complicate HIV management. The present study drew on a cross-sectional survey with African American/Black and Latino (AABL) adult PLWH from low socioeconomic status backgrounds in New York City who were insufficiently engaged in HIV care and evidenced detectable HIV viral load (N = 512). We used latent class analysis (LCA) to explore patterns of polysubstance use and their relationships to financial hardship, incarceration, homelessness, and mental health. LCA yielded three substance use classes: Class 1, a high polysubstance use/high-risk substance use class (9%); Class 2, a polysubstance use/moderate substance use risk class (18%); and Class 3, a moderate polysubstance use/moderate-to-low-risk substance use class (74%). Mental health symptoms were prevalent in all classes, but Class 1 had greater mental health distress than the other two classes. Current homelessness was more prevalent in Classes 1 and 2. We cannot end the HIV epidemic without engaging and treating AABL PLWH who have serious barriers to engagement along the HIV care continuum, and who evidence polysubstance use along with co-occurring risk factors. Clinical settings can develop outreach and engagement approaches to bring this subpopulation of PLWH into care settings, and further, specialized services are needed to successfully screen, treat, and retain them.

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Objectives: This study addressed two questions: (1) Is age at migration associated with cognitive function among Chinese older immigrants? and (2) what personal and environmental factors confound the above relationship? Methods: Data were derived from the Population Study of Chinese Elderly (N = 2957). Quantile and linear regressions were used to examine the associations between age at migration and Mini-Mental State Examination (MMSE) and global cognitive function, respectively. Results: Migration in late middle age (50–64) or late adulthood (65 or older) was associated with lower MMSE scores. Global cognition did not vary by age at migration. Associations between age at migration and MMSE were stronger among individuals with lower education or social engagement. Discussion: Migrating late in one’s life has important implications for cognitive health over the life course. Findings are helpful to identify vulnerable older immigrant segments and provide tailored interventions to promote their cognitive health.

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The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. Part I of this consensus paper herein provides the rationale and background to support the policy, education, research, and clinical practice recommendations put forward in Part II. On behalf of the Academy, the evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter. The authors recommend greater investments in palliative nursing education and nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative nurses worldwide. By enacting these recommendations, nurses working in all settings can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations.

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Objectives: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. Methods: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. Results: We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. Significance of Results: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.

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Background: Hypertrophic cardiomyopathy (HCM) is the most common inherited cardiac disorder globally, affecting 0.2% to 0.5% of individuals. Existing clinical HCM guidelines do not address diverse populations, specifically minority groups who often experience health disparities. Objective: The aim of this study was to describe the state of the science of HCM in black populations. Methods: This integrated review guided by Whittemore and Knafl's methodology included literature search of multiple databases, data evaluation, and analysis. Publications between 2000 and 2020 were included if they addressed HCM cardiac anatomic manifestations, disease course, symptoms, quality of life, or outcomes in black populations. Results: Six articles met the inclusion criteria. Overall, blacks are underrepresented in HCM research. Certain HCM structural phenotypes are more commonly exhibited in blacks, and physiology drives HCM treatment. Sudden death events and all-cause mortality do not differ between blacks and whites with HCM. Fewer blacks with HCM undergo genetic testing than whites with HCM. The lack of diversity in general genomic databases has resulted in reclassification of several genetic variants identified as more common in blacks. Conclusions: Blacks are underrepresented in HCM research, even those focused on elucidating HCM manifestations, disease course, and outcomes in black populations. This may be due in part to HCM research that is largely generated from specialty centers that can require patients to navigate complex healthcare systems to reach expert HCM care. Longitudinal studies with large samples of blacks with HCM are necessary to elucidate how HCM affects this population.