Publications

Abstract

Context: Social determinants of health (SDOH) impacted the quality of home hospice care provided during the COVID-19 pandemic. Perspectives from professionals who provided care identify challenges and lessons learned from their experience. Objective: To examine hospice professionals’ perspectives of how SDOH affected the delivery of high-quality home hospice care in New York City (NYC) during the COVID-19 pandemic. Methods: We conducted semistructured interviews with 30 hospice professionals who delivered care to home hospice patients during the COVID-19 pandemic in NYC using a qualitative descriptive design. Purposive sampling was used to recruit professionals from a range of disciplines including physicians, advanced practice providers, nurses, social workers, chaplains, and hospice administration and management. Participants worked for one of two large NYC metro hospices and one outpatient palliative care practice serving the five boroughs of NYC and the surrounding suburbs. Rapid qualitative analysis was used to identify themes. Results: Thirty hospice professionals were interviewed, spanning a variety of clinical and administrative roles. Most (21 out of 30) reported that social determinants affected access and/or delivery of equitable hospice care. Two key themes emerged from interviews: (1) SDOH exist and affect the delivery of high-quality care and (2) disparities were exacerbated during the COVID-19 pandemic resulting in barriers to care. Subthemes outline barriers described by hospice professionals: decreased hospice enrollment, telehealth challenges, resulting in deficient patient/family education, shortages of nursing assistants in some neighborhoods, and diminished overall quality of hospice care for some patients. SDOH created barriers to hospice care through neighborhood factors, resource barriers, and system challenges. Conclusion: SDOH provide a context to understand disparity in the provision of hospice care. COVID-19 exacerbated these conditions. Addressing multidimensional barriers created by SDOH is key in creating high-quality and equitable hospice care, particularly during a crisis.

Abstract

The dietary behaviors of Asian American (AA) young adults, who face a growing non-communicable disease burden, are impacted by complex socio-ecological forces. Family plays a crucial role in the lifestyle behaviors of AA young adults; however, little is known on the methods, contributors, and impact of familial dietary influence. This study aims to deconstruct the mechanisms of AA young adult familial dietary influence through a multi-perspective qualitative assessment. A five-phase method of dyadic analysis adapted from past research was employed to extract nuanced insights from dyadic interviews with AA young adults and family members, and ground findings in behavioral theory (the Social Cognitive Theory, SCT). 37 interviews were conducted: 18 young adults, comprising 10 different AA ethnic subgroups, and 19 family members (10 parents, 9 siblings). Participants described dietary influences that were both active (facilitating, shaping, and restricting) and passive (e.g., sharing foods or environment, mirroring food behaviors). Influences connected strongly with multiple SCT constructs (e.g., behavioral capacity, reinforcements for active influences, and expectations, observational learning for passive influences). Familial influence contributed to changes in the total amount, variety, and healthfulness of foods consumed. Intra-family dynamics were crucial; family members often leveraged each other’s persuasiveness or food skills to collaboratively influence diet. AA family-based interventions should consider incorporating both passive and active forms of dietary influence within a family unit, involve multiple family members, and allow for individualization to the unique dynamics and dietary behaviors within each family unit.

Abstract

Hypermutated proviruses, which arise in a single Human Immunodeficiency Virus (HIV) replication cycle when host antiviral APOBEC3 proteins introduce extensive guanine to adenine mutations throughout the viral genome, persist in all people living with HIV receiving antiretroviral therapy (ART). However, hypermutated sequences are routinely excluded from phylogenetic trees because their extensive mutations complicate phylogenetic inference, and as a result, we know relatively little about their within-host evolutionary origins and dynamics. Using >1400 longitudinal single-genome-amplified HIV env-gp120 sequences isolated from six women over a median of 18 years of follow-up—including plasma HIV RNA sequences collected over a median of 9 years between seroconversion and ART initiation, and >500 proviruses isolated over a median of 9 years on ART—we evaluated three approaches for masking hypermutation in nucleotide alignments. Our goals were to (i) reconstruct phylogenies that can be used for molecular dating and (ii) phylogenetically infer the integration dates of hypermutated proviruses persisting during ART. Two of the approaches (stripping all positions containing putative APOBEC3 mutations from the alignment or replacing individual putative APOBEC3 mutations in hypermutated sequences with the ambiguous base R) consistently normalized tree topologies, eliminated erroneous clustering of hypermutated proviruses, and brought env-intact and hypermutated proviruses into comparable ranges with respect to multiple tree-based metrics. Importantly, these corrected trees produced integration date estimates for env-intact proviruses that were highly concordant with those from benchmark trees that excluded hypermutated sequences, supporting the use of these corrected trees for molecular dating. Subsequent molecular dating of hypermutated proviruses revealed that these sequences spanned a wide within-host age range, with the oldest ones dating to shortly after infection. This indicates that hypermutated proviruses, like other provirus types, begin to be seeded into the proviral pool immediately following infection and can persist for decades. In two of the six participants, hypermutated proviruses differed from env-intact ones in terms of their age distributions, suggesting that different provirus types decay at heterogeneous rates in some hosts. These simple approaches to reconstruct hypermutated provirus’ evolutionary histories reveal insights into their in vivo origins and longevity toward a more comprehensive understanding of HIV persistence during ART.

Abstract

Background: Oral hygiene care is instrumental to maintaining optimal oral health. As dementia progresses, individuals face challenges performing adequate oral hygiene care and become dependent on their caregivers. The role of family caregivers in assisting with oral hygiene care becomes increasingly critical. This study explored the association between caregiving circumstances, care recipient characteristics, and assistance in oral hygiene care among dementia caregivers in Chinese American communities. Methods: Data came from a pilot study on Chinese dementia caregivers in New York City collected between November 2021 and June 2022. Purposive sampling was used to recruit family caregivers to participate in a survey (online or via telephone). Current caregivers (n = 76) were included. Caregiver assistance with oral hygiene care was measured by assistance with toothbrushing (yes or no) and assistance with flossing (yes or no). Descriptive analyses, group comparisons, and logistic regressions were conducted. Results: Female caregivers tended to assist with toothbrushing. Caregivers with an average of 2.4 years in providing care tended to assist with flossing. Care recipients with tooth pain were 5.12 times more likely to receive assistance with toothbrushing. Care recipients with more natural teeth were 1.07 times more likely to receive assistance with toothbrushing. Care recipients with severe dementia were 94 % less likely to receive assistance with flossing. Conclusions: The findings underscore the importance of understanding the factors that influence caregivers’ assistance with oral hygiene care. This study is a crucial first step toward developing effective, caregiver-led interventions to improve the oral hygiene of individuals with dementia.

Abstract

BACKGROUND: Experiential learning activities on care for people with disabilities (PWD) would help nursing students develop the knowledge, skills, and attitudes (KSAs) needed to provide quality care for PWD. PURPOSE: The purpose of this study was to evaluate the perceived changes in nursing students' KSAs related to the care for PWD following participation in health assessment and prevention (HAP) experiential learning activities. METHODS: This was a quasi-experimental, pre- and posttest educational intervention study. Nursing students (n = 160) attended multiple experiential learning activities as a required part of their HAP coursework and completed a pre and posttest survey to assess changes in their KSAs. RESULTS: Participation in experiential learning activities on care for PWD was associated with significant increases in perceived knowledge, skills and positive attitudes toward PWD. CONCLUSIONS: Experiential learning activities aligned with core competencies for health care providers caring for PWDs have the potential to change nursing care and address health inequities for this population.

Abstract

Introduction: Timely diagnosis is critical for persons with Alzheimer’s disease and related dementias (ADRD) to ensure they receive adequate services; however, timely diagnosis may be prevented by a person’s English language skills. The purpose of this integrative review was to understand how limited English proficiency (LEP) impacts older Latino’s ability to access a timely ADRD diagnosis. Methods: Whittemore and Knafl’s methodological approach guided the review. Searches in five databases yielded 12 articles for inclusion. Results: Lack of culturally congruent health care systems, health care providers, and knowledge of ADRD resulted in delays in obtaining a timely ADRD diagnosis among older Latinos with LEP. Discussion: Latinos with LEP and risk for ADRD benefit from language assistance and support in navigating the health care system. Nurses must be advocates, even when a language barrier is present, and recognize that interpreters are not a single source solution.

Abstract

Background: Elevated perceived stress is associated with adverse outcomes following myocardial infarction (MI) and may account for poorer recovery among women vs men. Objectives: This randomized controlled trial tested effects of a mindfulness-based intervention on stress levels among women with MI. Methods: Women with elevated stress (Perceived Stress Scale [PSS-4]≥6) at least 2 months after MI were enrolled from 12 hospitals in the United States and Canada and via community advertising. Participants were randomized to a remotely delivered mindfulness intervention (MBCT-Brief) or heart disease education, both 8 weeks long. Follow-up was 6 months. Changes in stress (PSS-10; primary outcome) and secondary outcomes (depressive symptoms, anxiety, quality of life, disease-specific health status, actigraphy-assessed sleep) were compared between groups. Results: The sample included 130 women with MI (mean age 59.8 ± 12.8 years, 34% racial/ethnic minorities). In intention-to-treat analysis, PSS-10 scores declined in the MBCT-Brief arm (−0.52 [95% CI: −0.77 to −0.28]) but not the heart disease education arm (−0.19 [95% CI: −0.45 to 0.06]; group×time interaction P = 0.070). The effect was stronger in per-protocol analysis of participants who completed ≥4 intervention sessions (P = 0.049). There were no significant differences in secondary outcomes in intention-to-treat or per-protocol analyses. Within the MBCT-Brief arm, more frequent mindfulness practice was associated with greater reductions in stress (P = 0.007), depressive symptoms (P = 0.017), and anxiety (P = 0.036). Conclusions: MBCT-Brief was associated with greater 6-month reductions in stress than an active control among adherent participants. More frequent mindfulness practice was associated with greater improvements in psychological outcomes. Strategies to engage women with MI in mindfulness training and support regular home practice may enhance these effects.

Abstract

The rising prevalence of Alzheimer's disease and Alzheimer's disease-related dementias has led to renewed public discourse and policy changes in response to the care needs of persons living with dementia and their care partners. Comprehensive dementia care models are central to many recent policy initiatives, most notably the Centers for Medicare & Medicaid Services Guiding an Improved Dementia Experience model. Gerontological nursing research is uniquely positioned to design and lead research investigating the effectiveness of these initiatives, as well as the dissemination and scaling of existing comprehensive dementia care models. The current Annual State of the Science Review provides an overview of the current state of comprehensive dementia care models in the United States and relevant policies. Challenges and opportunities for nursing education, research, and implementation across the translational research continuum are also outlined. [Research in Gerontological Nursing, 18(1), 7-16.].

Abstract

Introduction: South Asian adults are at high risk for atherosclerotic cardiovascular disease, for which coronary artery calcification is an early predictor. Adherence to the Dietary Approaches to Stop Hypertension diet is a modifiable risk factor that may mitigate the progression of coronary artery calcification and atherosclerotic cardiovascular disease. Methods: Using data from the Mediators of Atherosclerosis in South Asians Living in America cohort, the authors calculated a Dietary Approaches to Stop Hypertension dietary score (categorized as low, moderate, and high) to examine the associations of Dietary Approaches to Stop Hypertension diet adherence with coronary artery calcification after a 5-year follow up. Results: The authors found that participants in the high Dietary Approaches to Stop Hypertension category were 41% less likely to have coronary artery calcification score >100 (age-adjusted incidence rate ratio=0.59; 95% CI=0.36, 0.95) than those in the low category; this association was attenuated in multivariable models. Differences were observed by sex. Men in the high Dietary Approaches to Stop Hypertension category were 51% less likely to have coronary artery calcification score >100 (adjusted incidence rate ratio=0.49; 95% CI=0.26, 0.95) and experienced 0.46-fold coronary artery calcification change (fold change=0.46; 95% CI=0.18, 0.90) in multivariable models. Conclusions: The findings indicate a relationship between Dietary Approaches to Stop Hypertension diet and early predictors of atherosclerotic cardiovascular disease risk among South Asians living in the U.S., particularly men.

Abstract

Background The recent wave of clinical trials of psychedelic substances among patients with life-limiting illness has largely focused on individual healing. This most often translates to a single patient receiving an intervention with researchers guiding them. As social isolation and lack of connection are major drivers of current mental health crises and group work is expected to be an important aspect of psychedelic assisted psychotherapy, it is essential that we understand the role of community in psychedelic healing. Objectives To explore how psychedelic guides in the United States discuss the role of community in naturalistic psychedelic groups. Methods This is a secondary qualitative data study of data from a larger modified ethnographic study of psychedelic plant medicine use in the US. Fifteen facilitators of naturalistic psychedelic groups were recruited via snowball sampling. Content analysis was used to identify themes. Results Participants viewed the concept of community as essential to every aspect of psychedelic work, from the motivation to use psychedelics, to the psychedelic dosing experience and the integration of lessons learned during psychedelic experiences into everyday life. Themes and subthemes were identified. Theme 1: The arc of healing through community (Subthemes: Community as intention, the group psychedelic journey experience, community and integration); Theme 2: Naturally occurring psychedelic communities as group therapy (Subthemes [as described in Table 2]: Belonging, authenticity, corrective experience, trust, touch). Significance Results suggest that existing knowledge about therapeutic group processes may be helpful in structuring and optimizing group psychedelic work. More research is needed on how to leverage the benefit of community connection in the therapeutic psychedelic context, including size and composition of groups, selection and dosing of psychedelic substances in group settings, facilitator training, and role of community integration. Psychedelic groups may provide benefits that individual work does not support.

Abstract

Palliative care improves the quality of life for seriously ill patients, but misconceptions and knowledge gaps hinder its implementation in home healthcare (HHC). This study developed and pilot-tested HHC-specific questionnaires to measure palliative care knowledge, attitudes, and confidence (PC-KAC) among clinicians, patients, and caregivers. Using literature reviews, expert input, and cognitive interviews, the questionnaires were refined to ensure clarity, practical relevance, and content validity. Pilot testing revealed widespread confusion about palliative care, with patients and caregivers often conflating it with hospice care and holding misconceptions about opioid use for pain and symptom management. While clinicians demonstrated adequate knowledge, gaps in pain management and confidence in handling emergencies were evident. These findings highlight the need for targeted education and training to integrate palliative care effectively into HHC, improving patient outcomes and supporting interdisciplinary collaboration.</jats:p>

Abstract

Sexual and gender minority (lesbian, gay, bisexual, and transgnder: LGBT) adults experience heightened social discrimination and minority stress throughout their lives because of their minority identities. LGBT older adults are particularly vulnerable to the impact of minority stress as they are more likely to live alone and to be estranged from their families of origin. To cope, many LGBT older adults have developed social networks that include chosen families and non-biological relatives who care for one another as if they are family. The chosen family resilience strategy renegotiates what it means to do family and is worthy of theoretical examination. We apply the convoy model of social relations as an interdisciplinary framework for examining LGBT older adults' social networks and chosen families. We discuss points of convergence between the model and what is known about LGBT social networks, and we extend the model to account for chosen families and online social connections.

Abstract

Introduction: Racial and ethnic minorities experience a disproportionate burden of the type 2 diabetes (T2D) and are at a 2 to 5 times higher risk of developing macrovascular disease. The purpose of the study was to describe the perspectives of Haitian American immigrants’ challenges to effective T2D self-management. Methods: Utilizing a descriptive qualitative approach, purposive sampling was employed to recruit a subgroup of adult Haitian American immigrants from a parent cross-sectional study. Content analysis was used to identify themes describing participant perspectives. Lincoln and Guba’s four criteria to assess the trustworthiness and ensure the rigor of the study were applied. Results: A total of 36 participants were enrolled, with 54% being male, and age ranged from 34 to 63 years. The majority were married, and 77% reported using metformin. Three facilitators and two barriers to their T2D self-management were found. Facilitators included (1) family and social support, (2) optimism and hope, and (3) novel devices. Barriers included (1) psychosocial and (2) environmental factors. Discussion: The facilitators underscore the pivotal role of close familial relationships, communal influence, and the potential utility of innovative devices like continuous glucose monitoring in enhancing T2D management, whereas the barriers delineate the unique challenges posed by discrimination, lack of provider/client decision-making and communication, the compounding effects of COVID-19, concerns about safety, mistrust in healthcare systems, and financial constraints, which collectively exacerbate the complexities of ineffective T2D management. Collaboration between clinicians, clients, and policymakers is imperative to emphasize the urgent necessity for a multifaceted approach in addressing the complex healthcare landscape of Haitian American immigrants managing T2D in the United States.

Abstract

In Brazil, research indicates that primary family members are the main source of support for individuals with chronic conditions such as hypertension (HTN). The burden of caregiving not only hinders effective HTN management but can also cause stress and anxiety, potentially leading to HTN in caregivers. Despite this, few studies have explored the impact of caregiving on these family members. Aims of the study were to: (1) Describe the prevalence of blood pressure (BP) control in family members of individuals with HTN; (2) identify family member perspectives on facilitators and barriers to HTN management; and (3) identify influences that help or interfere with family member functioning (levels of stress, quality of life [QOL], and caregiver burden). This descriptive, cross-sectional study included 213 family members randomly selected from 3 Family Health Strategy units. Family members were largely female (n = 143; 67.1%); the mean age was 60.1 years (SD ± 17.02) and 42.6% (n = 96) had less than a high school education. The three most important facilitators and barriers were related to medication, medical visits, healthy eating, physical activity, and stress. The mean systolic BP was 132.7 (SD ± 21.9) mmHg and a diastolic BP of 85.9 (SD ± 18.1) mmHg with 120 (56.3%) of family members classified as having normal BP. In regard to family member contributions to the self-care of the individual with HTN, family members displayed low levels of self-care maintenance (n = 148; 69.4%) and management (n = 47; 71.2%) support, while a slight majority (n = 114; 53.5%) had adequate levels of self-care confidence in supporting the individual with HTN. Family members (n = 189; 88.8%) showed moderate-to-high levels of perceived stress, but good physical (n = 189; 88.7%) and mental QOL (n = 196; 92%) and low levels of caregiver burden (n = 113; 53.1%). A variety of contextual sociocultural influences were associated with the outcomes under study. Family-based interventions are urgently needed to address the inadequate management of HTN.

Abstract

Background: The rapid spread and severity of COVID-19 brought major health challenges and dealt a heavy blow to key health services and daily life in Africa, including Malawi. Purpose: To explore and examine the impact of the COVID-19 pandemic on cervical cancer (CC) prevention behavior in Malawi through a decolonized lens. Methods: A qualitative descriptive study informed by a decolonized perspective was conducted during the COVID-19 pandemic. A purposive sampling was taken from 17 key informant interviews, including, seven Malawian women living with HIV infection (WLWHIV). Results: Themes explored were that COVID-19 was indiscriminate towards not only health deterioration but also a social crisis and health was no longer an individual problem but a public and global issue across borders. Conclusion: To uproot global health inequities, templates revolved around Western ways of knowing over national and global health need to be reexamined and methods reinvented to be relevant to local ways of knowing.

Abstract

Background: Low awareness and misconceptions surrounding mild cognitive impairment highlight the urgent need for effective health education. Reluctance to seek intervention and poor adherence to management strategies make behavior-oriented health education essential. Objective: To assess the effectiveness and clinical significance of a trans-theoretical model-based health education program on cognitive-behavioral outcomes in older adults with mild cognitive impairment. Design: A two-arm and assessor-blinded randomized controlled trial. Settings and participants: 100 community-dwelling older adults with mild cognitive impairment in Huzhou, China. Methods: Participants were randomly assigned to a trans-theoretical model-based health education program (weekly 45–60 min sessions for 8 weeks, followed by 12 weeks of unsupervised practice) or a wait-list control group receiving standard health education. Disease knowledge, behavioral stage, and adherence to health management behaviors were assessed at baseline, 8-week, and 20-week. Effects were evaluated at the group level via generalized estimating equation and at the individual level using reliable and clinically significant change. Results: The trans-theoretical model-based health education program demonstrated significant effects over the wait-listed control. Generalized estimating equation analyses showed statistically significant effects on behavioral stage (β8-week = 1.04, 95%CI = 0.34–1.75; β20-week = 1.72, 95%CI = 0.95–2.49), disease knowledge (β8-week = 1.14, 95%CI = 0.26–2.02; β20-week = 1.78, 95%CI = 0.87–2.69), and adherence to health management behaviors (β8-week = 6.20, 95%CI = 2.03–10.37; β20-week = 10.74, 95%CI = 6.47–15.01) at both measured intervals. Additionally, global cognitive function (β8-week = 0.60, 95%CI = − 0.18–1.38; β20-week = 2.42, 95%CI = 1.64–3.20), Purdue Pegboard Test Assembly and Bimanual Tasks (β8-week = 0.16/0.38, 95%CI = − 0.21–0.53/− 0.18–0.94; β20-week = 0.96/1.80, 95%CI = 0.57–1.35/1.17–2.43) improved significantly over time. Reliable and clinically significant change analyses at 8 weeks indicated significant improvements in the intervention group: 57 % of participants improved in disease knowledge (22 % clinically significant), 90 % in adherence to health management behaviors (17 % clinically significant), and 61 % in global cognitive function (10 % clinically significant). By 20 weeks, these rates increased to 63 % (29 %), 100 % (25 %), and 78 % (27 %). However, non-significant improvements in depression symptoms and sleep quality were found at individual-level assessment. Conclusions: This study shows that the trans-theoretical model-based health education program effectively enhances cognitive-behavioral health outcomes in older adults with mild cognitive impairment, with benefits persisting for 12 weeks. Future research should further explore the potential mechanisms underlying the cognition and behavior-enhancing effects of this program. Registration number: ChiCTR1900028351.

Abstract

Background: Depression affects 33% of women with type 2 diabetes (T2D) and leads to increased risks of premature mortality. Fluctuation and variation of depressive presentations can hinder clinical identification. Purpose: We aimed to identify and examine subgroups characterized by distinct depressive symptom trajectories among women with T2D. Methods: This retrospective analysis leveraged the Women’s Interagency HIV Study data to identify depressive symptom trajectories based on the Center for Epidemiological Studies Depression scores (2014-2019) among women with and without HIV. Descriptive statistics characterized sample demographics (eg, age, race, income), clinical indices (eg, hemoglobin A1C [HbA1c], BMI, HIV status), and psychosocial experiences (eg, discrimination, social support, anxiety, pain). We used growth mixture modeling to identify groups defined by distinct depressive symptom trajectories and parametric and non-parametric tests to examine demographic, clinical, and psychosocial differences across subgroups. Results: Among the 630 women included, the mean age was 50.4 (SD = 8.3) years, 72.4% identified as Black and non-Hispanic, and 68.2% were living with HIV. Five subgroups were identified and distinguished by severity and symptom type. Participants with lower incomes (P = .01), lower employment (P < .0001), lower social support (P = .0001), and experiences of discrimination (P < .0001) showed greater membership in threshold, moderate, and severe depressive subgroups. Subgroup membership was not associated with metabolic indices (BMI, HbA1c) or HIV status. Anxiety, pain, and loneliness (all P = .0001) were worse in subgroups with higher depressive symptoms. Conclusions: Among women with T2D, depressive symptom trajectories differ across clinical and social contexts. This study advances precision by delineating subgroups within a broad clinical category.

Abstract

Context: Chronic kidney disease (CKD) disproportionately impacts lower socioeconomic groups and is associated with many symptoms and complex decisions. Integration of Kidney Supportive Care (KSC) with CKD care can address these needs. To our knowledge, this approach has not been described in an underserved population. Objectives: We describe our adaptation of an ambulatory integrated KSC and CKD clinic for implementation in a safety net hospital. We report our utilization metrics; characteristics of the population served; and visit activities. Methods: We considered modifications from the perspectives of people with CKD, their providers, and the health system. Modifications were informed by meeting notes with key participants (hospital administrators [n = 5], funders [n = 1], and content experts [n = 2]), as well as literature on palliative care program building, safety net hospitals, and KSC. We extracted utilization data for the first 15 months of the clinic's operations, demographics, clinical characteristics, unmet health related social needs, and symptom burden, measured by the Integrated Palliative Outcome Scale-Renal (total Score, and sub-scores of physical, psychological, and practical impact of CKD) from the electronic health record. Results are reported using descriptive statistics. Results: Adaptions were proactive and done by clinical and administrative leaders. Meetings identified challenges of the safety net setting including people presenting with advanced disease and having several social needs. Modifications to our base model were made in staffing, data collection, and work flow. Show rate was approximately 68%, with a majority of people identifying as Black or Hispanic, and uninsured or on Medicaid. Symptom burden was lower than previous reports, driven by a better psychological sub-score. Conclusions: We describe a feasible ambulatory care model of KSC in a safety net setting that can serve as a framework for the development of other noncancer palliative care ambulatory clinics. Future work will optimize our model.

Abstract

BACKGROUND AND OBJECTIVES: Goal-concordant transition to hospice is an important facet of end-of-life care for people living with dementia. The objective of this integrative review was to appraise existing evidence and gaps focused on interventions and predictors of transition to hospice and end-of-life care for persons living with dementia across healthcare to inform future research.RESEARCH DESIGN AND METHODS: Using integrative review methodology by Whittemore and Knafl, five databases were searched (PubMed, CINAHL, Web of Science, Google Scholar, Cochrane Database for Systematic Reviews) for articles between 2000 and 2023. The search focused on dementia, hospice care, transitions, care management and/or coordination, and intervention studies.RESULTS: Fourteen articles met inclusion criteria after critical appraisal. Most were cross-sectional in design and conducted in nursing homes and hospitals in the U.S. persons living with dementia had multiple chronic conditions including cancer, diabetes, heart disease, and stroke. Interventions included components of hospice decision-making delivered through advance care planning, checklist-based care management for hospice transition, and palliative care for those with severe dementia. Predictors included increasing severity of illness including functional decline, organ failure, intensive care use, and the receipt of palliative care. Other predictors were related to insurance status, race and ethnicity, and caregiver burden. Overall, despite moderate to high-quality evidence, the studies were limited in scope and sample and lacked racial and ethnic diversity.DISCUSSION AND IMPLICATIONS: Prospective, multisite randomized trials and population-based analyses including larger and diverse samples are needed for improved end-of-life dementia illness counseling and hospice care transitions for persons living with dementia and their caregivers.

Abstract

Objectives: Individuals with motoric cognitive risk (MCR) syndrome have a high dementia risk. However, a knowledge gap exists in the measurement procedure for slow gait speed, which is a crucial component of MCR diagnosis. The study aimed to systematically review slow gait speed measurement practices in MCR diagnosis to identify critical constructs in gait speed measurement procedure. Design: Systematic review. Setting and Participants: Included studies were conducted in clinical and community settings, involving participants with MCR receiving gait speed measurement. Methods: A systematic search across PubMed, Medline, Embase, CINHAL (EBSCO), Web of Science, Cochrane Library, and ProQuest Dissertation from inception until January 2024 for articles with detailed MCR diagnosis. Study quality was evaluated with the Joanna Briggs Institute (JBI) Critical Appraisal Checklists and slow gait speed measurement methods were summarized through narrative synthesis. Results: From 27,600 unique entries, 50 relevant studies with 55 cohorts were identified and included in the review. Slow gait speed measurement methods in existing MCR studies showed heterogeneity in measurement tools, start/end protocols and buffer distance, walking test distance, number of tests, calculation methods, and cutoff values. Commonly, manual stopwatches and 4-meter walking test distance with a 2-meter buffer at each end at a usual pace were used, averaging 2 tests for gait speed analysis, with the need for cohort-specific slow gait cutoff values. Conclusions and Implications: The measurement practices of slow gait speed in MCR diagnosis were heterogeneous. A relatively comprehensive gait speed measurement procedure with 7 constructs was initially delineated in this study based on synthesis analysis, with the potential to improve diagnostic accuracy and consistency of MCR, although further validation is still needed.

Abstract

Objective The purpose of study was to explore family caregiver perspectives on work-life balance while caring for adults with Parkinson's disease. Methods The study was performed using a convergent mixed methods design and a revised adaptation of the Work-Life Conflict model. Caregivers completed surveys followed by semistructured interviews (n = 40). Results Work-life balance is bidirectionally influenced by time, stress, and behavior across the working and caregiving role. Caregiver burden was offset by higher decision latitude at work. Supervisor support and coworker support were positively associated with work-life balance. Barriers included physical, emotional, and financial stress, and speech and cognitive changes of the care recipient. Conclusions The results of this study identify the influence of work-life imbalance on caregiver burden and stress, and generate discussion of potential solutions that optimize well-being and health of this working population.

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Ensuring equitable care and health outcomes for all populations is essential in nursing science. However, achieving health equity in nursing science necessitates a multifaceted approach to address the complex factors influencing health disparities. This paper presented the keynote address delivered at the Advanced Methods Conference hosted by the Council for Advancement of Nursing Science in 2023. We identified critical gaps in health equity within nursing science, emphasizing the need for innovative recruitment strategies, comprehensive data analysis, and targeted dissemination efforts. This paper underscores the importance of equity in artificial intelligence research, highlighting issues such as biases in machine learning models and the underrepresentation of minoritized groups. Bridging the current gaps in health equity research within nursing science requires a systematic and forward-thinking approach.

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Editor's note: This is the 25th article in a series on clinical research by nurses coordinated by the Heilbrunn Family Center for Research Nursing at Rockefeller University. The series is designed to be used as a resource for nurses to understand the concepts and principles essential to research. Each column will present the concepts that underpin evidence-based practice - from research design to data interpretation. To see all the articles in the series, go to https://links.lww.com/AJN/A204.

Abstract

Purpose: Fear of recurrence (FoR) is a prevalent and difficult experience among cancer patients. Most research has focused on FoR among breast cancer patients, with less attention paid to characterizing levels and correlates of FoR among oral and oropharyngeal cancer survivors. The purpose was to characterize FoR with a measure assessing both global fears and the nature of specific worries as well as evaluate the role of sociodemographic and clinical factors, survivorship care transition practices, lifestyle factors, and depressive symptoms in FoR. Methods: Three hundred eighty-nine oral and oropharyngeal survivors recruited from two cancer registries completed a survey assessing demographics, cancer treatment, symptoms, alcohol and tobacco use, survivorship care practices, depression, and FoR. Results: Forty percent reported elevated global FoR, with similar percentages for death (46%) and health worries (40.3%). Younger, female survivors and survivors experiencing more physical and depressive symptoms reported more global fears and specific fears about the impact of recurrence on roles, health, and identity, and fears about death. Depression accounted for a large percent of the variance. Lower income was associated with more role and identity/sexuality worries, and financial hardship was associated with more role worries. Conclusions: FoR is a relatively common experience for oral and oropharyngeal cancer survivors. Many of its correlates are modifiable factors that could be addressed with multifocal, tailored survivorship care interventions. Implications for Cancer Survivors: Assessing and addressing depressive symptoms, financial concerns, expected physical symptoms in the first several years of survivorship may impact FoR among oral and oropharyngeal cancer survivors.