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Native Americans (Indigenous Americans) have high rates of serious illness in the United States. Informal caregivers are heavily relied on in caring for patients in low-resource settings. The needs of caregivers residing on reservations are sorely underreported. Therefore, our objective was to examine relationships between facilitators (communal mastery, cultural identity, and spirituality) and barriers (depression, anxiety, stress, and burden) with supportive care needs among adult informal caregivers in 1 reservation-based community. A cross-sectional survey was distributed in July and August 2022 as part of a larger multimethod, community-based participatory research study. We used descriptive statistics and linear regression models to examine relationships against the primary outcome, the Supportive Care Needs Assessment Tool for Indigenous People. Overall, 127 participants were included; most were female (n = 92, 72.4%), were between 30 and 49 years (n = 57, 44.9%), and had 6 months or less of caregiving experience (n = 41, 32.5%). Higher depression, anxiety, stress, and burden were significantly associated with higher Supportive Care Needs Assessment Tool for Indigenous People scores. Overall, mental health is a significant barrier that may indicate greater supportive care needs among informal caregivers, although further work is needed to differentiate symptoms and their impact on caregiving from a cultural perspective.
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AIM: To explore (1) perspectives and attitudes of Native Americans regarding transitions from serious illness to death, and (2) awareness about hospice and palliative care service models in a Great Plains reservation-based community. DESIGN: Qualitative descriptive study. METHODS: Community members and clinicians were invited to participate in a semi-structured focus group or interview by Tribal Advisory Board members. Analysis involved three phases: (1) qualitative descriptive analysis of preliminary themes using the Addressing Palliative Care Disparities conceptual model; (2) a cultural review of the data; and (3) reflexive thematic analysis to synthesize findings. RESULTS: Twenty-six participants engaged in two focus groups (n = 5-6 participants in each) and interviews (n = 15). Four themes were derived from their stories: (1) family connectedness is always priority; (2) end-of-life support is a community-wide effort; (3) everyone must grieve in their own way to heal; and (4) support needs from outside the community. CONCLUSION: Findings highlight cultural considerations spanning the life course. Clinicians, researchers and traditional wisdom keepers and practitioners, particularly those working in rural and/or reservation-based settings, must provide culturally safe care. This must include acknowledging and prioritizing the needs and preferences of Native American patients and the impact on their families and communities. IMPACT AND IMPLICATIONS FOR THE PROFESSION: Leveraging community assets, such as family and social networks, is key for supporting Native American patients with serious illnesses. Additionally, facilitating greater family and caregiver involvement along a patient's care trajectory may be a pathway for easing health care workers' caseloads in reservation-based areas, where resources are limited. REPORTING METHOD: The Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline was used. PATIENT/PUBLIC CONTRIBUTION: The study was ideated based on community insight. Tribal Advisory Board members oversaw all aspects including recruitment, data acquisition, interpretation of findings and tribal data dissemination.
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Schizophrenia affects approximately 1% of the world population. Genetics, epigenetics, and environmental factors are known to play a role in this psychiatric disorder. While there is a high concordance in monozygotic twins, about half of twin pairs are discordant for schizophrenia. To address the question of how and when concordance in monozygotic twins occur, we have obtained fibroblasts from two pairs of schizophrenia discordant twins (one sibling with schizophrenia while the second one is unaffected by schizophrenia) and three pairs of healthy twins (both of the siblings are healthy). We have prepared iPSC models for these 3 groups of patients with schizophrenia, unaffected co-twins, and the healthy twins. When the study started the co-twins were considered healthy and unaffected but both the co-twins were later diagnosed with a depressive disorder. The reprogrammed iPSCs were differentiated into hippocampal neurons to measure the neurophysiological abnormalities in the patients. We found that the neurons derived from the schizophrenia patients were less arborized, were hypoexcitable with immature spike features, and exhibited a significant reduction in synaptic activity with dysregulation in synapse-related genes. Interestingly, the neurons derived from the co-twin siblings who did not have schizophrenia formed another distinct group that was different from the neurons in the group of the affected twin siblings but also different from the neurons in the group of the control twins. Importantly, their synaptic activity was not affected. Our measurements that were obtained from schizophrenia patients and their monozygotic twin and compared also to control healthy twins point to hippocampal synaptic deficits as a central mechanism in schizophrenia.
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Primary Health Care , State Medicine , Primary Health Care/organization & administration , Primary Health Care/trends , State Medicine/organization & administration , Humans , United Kingdom , Delivery of Health Care, Integrated/organization & administration , Delivery of Health Care, Integrated/trends , ForecastingABSTRACT
Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services.
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BACKGROUND: Current recommendations regarding the utility of diagnostic investigations for pediatric hypertension are based on limited evidence, leading to wide practice variation. The objective of this study was to characterize the cohort of children that may benefit from secondary hypertension workup, and determine the diagnostic yield of investigations. METHODS: This was a single-center, retrospective cohort study of 169 children aged 1-18 years referred between 2000 and 2015, to a tertiary pediatric nephrology center in Canada, for evaluation of hypertension. The number of investigations completed, abnormal findings, and diagnostic findings that helped establish hypertension etiology was determined. RESULTS: 56 children were diagnosed with primary and 72 children with secondary hypertension in the outpatient setting. Secondary hypertension was predominant at all ages except for obese adolescents ≥ 12 years. Half of children with traditional risk factors for primary hypertension, including obesity, were diagnosed with secondary hypertension. Kidney ultrasound had the highest yield of diagnostic results (19.8%), with no difference in yield between age groups (P = 0.19). Lipid profile had a high yield of abnormal results (25.4%) as part of cardiovascular risk assessment but was only abnormal in overweight/obese children. Echocardiogram had a high yield for identification of target-organ effects in hypertensive children (33.3%). CONCLUSION: A simplified secondary hypertension workup should be considered for all hypertensive children and adolescents. High yield investigations include a kidney ultrasound, lipid profile for overweight/obese children, and echocardiograms for assessment of target-organ damage. Further testing could be considered based on results of initial investigations for the most cost-effective management. A higher resolution version of the Graphical abstract is available as Supplementary information.
Subject(s)
Hypertension , Pediatric Obesity , Adolescent , Child , Humans , Overweight/complications , Retrospective Studies , Pediatric Obesity/complications , Pediatric Obesity/diagnosis , Hypertension/diagnosis , Hypertension/etiology , LipidsABSTRACT
Introduction: The Somatic Marker Hypothesis (SMH) posits that in experience-based choice, people develop physiological reactions that mark options as either positive or negative. These somatic markers aid decision making because they differentiate between "good" and "bad" options during pre-choice deliberation. Methods: We examined this proposed role for somatic states in two decision-from-experience tasks (each N = 36) in which participants selected repeatedly with full feedback (i.e., for obtained and forgone outcomes) between two unlabeled options that returned wins or losses, with half receiving an additional summary of past outcomes. The probabilities of good and bad outcomes changed at an unannounced point. Participants completed a 100-trial game with a switch in the optimal option after trial 40 (Study 1) or a 200-trial game with switch points after trial 40 and trial 120 (Study 2). Skin conductance (SC) was measured continuously as an index of emotional intensity, from which we extracted measures of anticipatory SC (pre-choice) and outcome SC (post-choice). Results: Participants reliably selected the optimal option prior to any switches. They also altered their choices appropriately when the payoffs changed, though optimal play following payoff switches was reduced. Losses resulted in a greater outcome SC than wins, but only in Study 1, as did the finding that the outcome SC was greater when the forgone outcome was positive. Anticipatory SC did not reliably predict optimal play in either study. Discussion: These results provide little support for the SMH. Our studies point to the importance of using diverse tasks and measures and very large sample sizes when testing the role of somatic states in decision making.
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BACKGROUND: Hospital-acquired pressure injuries (HAPIs) are a significant problem for hospitals worldwide, negatively affecting patients and organizations by decreasing quality of life and increasing organizational cost of care and workload. A common pressure injury prevention intervention is frequent turning, though compliance can be low. As a newer technology, wearable sensors have emerged as an intervention to increase turn compliance. AIMS: The aim of this integrative review was to determine the clinical outcomes of using wearable sensors as a HAPI prevention intervention. METHODS: This integrative review was appraised by two independent reviewers using the Johns Hopkins Nursing Evidence-Based Practice Research Appraisal Tool. RESULTS: Eleven articles were included. The use of wearable sensors increases compliance with frequent turn protocols while decreasing HAPIs and reducing organizational costs. Despite this, the use of such technology was not found to increase the quality of turns. Although staff who used this technology reported positive feedback, technological training is needed to ensure proper use of the sensors. LINKING ACTION TO PRACTICE: This innovation has the potential to transform how nursing staff prevent pressure injuries, but more research is needed to definitively state whether wearable sensors will be efficacious as a pressure injury prevention intervention.
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Pressure Ulcer , Wearable Electronic Devices , Humans , Pressure Ulcer/prevention & control , Quality of LifeABSTRACT
BACKGROUND AND OBJECTIVES: Despite evidence linking financial challenges to poor health among older adults, effective interventions are lacking. This study examined the experience of living with financial challenges, useful strategies to handle them, and social norms that may constrain options and decision-making. RESEARCH DESIGN AND METHODS: This two-staged qualitative study recruited low-income older adults from the United States Baltimore City area. First, semistructured individual interviews examined older adults' experiences and strategies used to handle financial challenges. Then, vignette-based focus groups examined relevant social norms. Transcripts were coded, and hierarchical themes were described using thematic analysis. RESULTS: Two themes were generated. First, the social norms relevant to financial challenges share a common underlying assumption of personal responsibility. Second, social norms about personal responsibility are inconsistent with the experiences of older adults facing financial challenges, who typically lack control over their situation and face structural barriers to preventing and handling financial challenges. Differences between statements related to norms and personal responsibility were found across six subthemes, including how finances should be handled to prevent financial challenges, the causes of financial challenges, asking for help from community resources, navigating community resources, getting help from family, and cutting back to handle financial challenges. DISCUSSION AND IMPLICATIONS: The disconnect between social norms and the reality of financial challenges among older adults may explain why so many older adults cut back to the point of foregoing necessities. There is an urgent need to strengthen the social safety net and remove normative barriers to services.
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Financial Stress , Social Norms , Humans , Aged , Poverty , Qualitative Research , Focus GroupsABSTRACT
AIM: Nurse leaders influence workplace culture; however, little is known about ethnic cultural influences on nurse leader development. This research aims to identify personal strategies promoting effective leadership by nurse leaders from European small island countries. DESIGN: Descriptive qualitative study. METHODS: In 2017, nineteen semi-structured interviews with nurse leaders from England, Greece, Republic of Ireland and Malta explored leadership journeys, strategies employed to support their growth and development, and how cultural identity played a role. Transcripts were analysed using reflexive thematic analysis. RESULTS: Four main themes and 12 subthemes captured the strategies and approaches of the nurse leaders: (1) Influences, (2) Communication, (3) Process and (4) Relationships. These findings reflect and validate the five transformational leadership practices of the Exemplary Leadership Model. While cultural island identity was discussed, there was a shared cultural identity within the role of "nurse leader" that spanned all islands. PATIENT OR PUBLIC CONTRIBUTIONS: Nineteen nurse leaders contributed to this study.
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Leadership , Humans , Qualitative Research , Europe , Ireland , MaltaABSTRACT
AIM: The aim of the study was to examine the relationship between stress, psychological symptoms and job satisfaction among frontline nursing staff at a military hospital in Saudi Arabia during the COVID-19 pandemic. DESIGN: Descriptive cross-sectional study. METHODS: Data were collected using an online survey. All Registered Nurses (N = 1,225) working at a military hospital between February to April 2021 were contacted, 625 responded (51%). Data were analysed using descriptive and multivariate analysis, Student's t-test for independent samples and one-way analysis of variance followed by Tukey's multiple comparison tests. RESULTS: Stress was experienced more significantly than depression or anxiety. Approximately 29% of the change in scores for psychological symptoms was explained by age group, being a Saudi national and working in emergency departments (F[3,620] = 19.063, p < 0.0001). A 37% change in nursing stress scores was explained by nationality and work department. (F[5,618] = 19.754, p < 0.0001). A 29% change in job satisfaction scores was explained by nationality and work department (F[3,620] = 19.063, p < 0.0001).