Background:
Advance care planning involves considering, discussing and documenting future wishes in case a person is unable to make or communicate decisions. Given people with dementia are at high ...risk of future decisional incapacity, it is critical that advance care planning occurs early in the illness trajectory.
Aim:
To determine (1) the number of intervention studies published between 1997 and July 2017 that aimed to increase advance care planning for persons with dementia, (2) the methodological quality of studies and (3) the effectiveness of interventions in increasing advance care planning for persons with dementia.
Design:
Systematic review.
Data sources:
Medline, Cochrane, EMBASE, PsycINFO and CINAHL were searched for articles published from 1997 to July 2017. Studies were included if they utilised a methodologically robust study design and reported on an intervention designed to increase participation in advance care planning for persons with dementia that was targeted at the person with dementia and/or a carer/family member. Methodological quality was assessed independently by two authors.
Results:
Four studies met the criteria for inclusion. Methodological quality was variable. Two studies did not report analyses comparing advance care planning outcomes for intervention and control participants. A third study found no effect for a nurse-facilitator intervention. The fourth study found that a structured conversation about end-of-life care with a family member increased the likelihood of advance care orders being listed in residents’ records.
Conclusion:
There is little evidence about effective strategies to improve participation in advance care planning for persons with dementia. Methodologically rigorous intervention trials are needed to test interventions that encourage timely participation.
The UK Biobank Exome Sequencing Consortium (UKB-ESC) is a private-public partnership between the UK Biobank (UKB) and eight biopharmaceutical companies that will complete the sequencing of exomes for ...all ~500,000 UKB participants. Here, we describe the early results from ~200,000 UKB participants and the features of this project that enabled its success. The biopharmaceutical industry has increasingly used human genetics to improve success in drug discovery. Recognizing the need for large-scale human genetics data, as well as the unique value of the data access and contribution terms of the UKB, the UKB-ESC was formed. As a result, exome data from 200,643 UKB enrollees are now available. These data include ~10 million exonic variants-a rich resource of rare coding variation that is particularly valuable for drug discovery. The UKB-ESC precompetitive collaboration has further strengthened academic and industry ties and has provided teams with an opportunity to interact with and learn from the wider research community.
Youth with cerebral palsy generally participate in less physical activity than typically developing peers. In adults with physical disabilities, balance confidence is a strong predictor of ...participation and community re-integration. However, balance confidence has not been studied in youth with cerebral palsy.
Qualitative descriptive methodology with interviews of eight youth with cerebral palsy (9-17 years old, three girls) in Gross Motor Function Classification System Levels I-III, and eight parents (five mothers) of youth with cerebral palsy (9-17 years old, two girls) in Levels I-III.
Three themes arose: (1) youth in Gross Motor Function Classification System Levels I-II are more concerned about losing their balance during physical activities than those in Level III; (2) when balance is lost, embarrassment and frustration are more common than fear, especially for those in Levels I-II; and (3) social factors can create a favorable participation environment when balance confidence is low, especially for youth in Levels I-II.
Balance confidence may have greater influence on physical activity participation for youth in Gross Motor Function Classification System Levels I-II than those in Level III. Youth in Levels I-II may draw greater benefit from interventions targeting balance confidence when addressing physical activity goals.
IMPLICATIONS FOR REHABILITATION
Balance confidence may have a greater influence on activity avoidance for youth with cerebral palsy in Gross Motor Function Classification System Levels I and II (who are independently ambulatory without walkers or cane(s)) than for those in Level II (who use walkers or cane(s) to ambulate).
Youth who are independently ambulatory without walkers or cane(s) may benefit more from interventions directed at balance confidence (e.g., enactive mastery and verbal persuasion) to address their physical activity participation goals.
For youth who are independently ambulatory without walkers or cane(s), addressing factors that could reduce the influence of balance confidence on physical activity participation, such as providing a positive and supportive social environment in which to participate, may be beneficial.
Abstract
This paper seeks to better understand how unanticipated disruption influences teacher agency and professionalism. Drawing on a conceptual model of teacher agency the paper examines data from ...teacher focus groups conducted in one Australian K-12 school to understand the lived experience of teachers (n = 50) during an initial COVID-19 lockdown period, particularly how they successfully navigated the transition to online teaching, and subsequent changes in practice and pedagogy. A grounded theory approach to data analysis revealed five conditions shaped teacher experience and a sense of personal achievement during this disruption: (1) an open individual mindset; (2) permission to be flexible and respond in appropriate ways; (3) reduced complexity; (4) effective relationships with leadership, colleagues, students, and parents; and (5) parental support. Temporal and affective dimensions of teacher agency (iterational—past; projective—future, and practical-evaluative—present) were used to explore the relationship between the five conditions and action for change. Findings suggest teacher agency was enhanced by focused school-based support which enabled teachers to deal with rapid change. Such support effectively facilitated reduction in complexity, provided structural and systemic assistance, valued and respected teachers as the professionals best placed to manage the shift to online learning, provided teachers with permission to try and fail, and enabled collegial support through a variety of communities of practice and structural support. Implications and future areas of research presented.
Ticks are the main arthropod vector of pathogens to humans and livestock in the British Isles. Despite their role as a vector of disease, many aspects of tick biology, ecology, and microbial ...association are poorly understood. To address this, we investigated the composition of the microbiome of adult and nymphal Ixodes ricinus ticks. The ticks were collected on a dairy farm in Southwest England and RNA extracted for whole genome sequencing. Sequences were detected from a range of microorganisms, particularly tick-associated viruses, bacteria, and nematodes. A majority of the viruses were attributed to phlebo-like and nairo-like virus groups, demonstrating a high degree of homology with the sequences present in I. ricinus from mainland Europe. A virus sharing a high sequence identity with Chimay rhabdovirus, previously identified in ticks from Belgium, was detected. Further investigations of I. ricinus ticks collected from additional sites in England and Wales also identified Chimay rhabdovirus viral RNA with varying prevalence in all tick populations. This suggests that Chimay rhabdovirus has a wide distribution and highlights the need for an extended exploration of the tick microbiome in the United Kingdom (UK).
Semiconductor heterostructures1 and ultracold neutral atomic lattices2 capture many of the essential properties of one-dimensional electronic systems. However, fully one-dimensional superlattices are ...highly challenging to fabricate in the solid state due to the inherently small length scales involved. Conductive atomic force microscope lithography applied to an oxide interface can create ballistic few-mode electron waveguides with highly quantized conductance and strongly attractive electron–electron interactions3. Here we show that artificial Kronig–Penney-like superlattice potentials can be imposed on such waveguides, introducing a new superlattice spacing that can be made comparable to the mean separation between electrons. The imposed superlattice potential fractures the electronic subbands into a manifold of new subbands with magnetically tunable fractional conductance. The lowest plateau, associated with ballistic transport of spin-singlet electron pairs3, shows enhanced electron pairing, in some cases up to the highest magnetic fields explored. A one-dimensional model of the system suggests that an engineered spin–orbit interaction in the superlattice contributes to the enhanced pairing observed in the devices. These findings are an advance in the ability to design new families of quantum materials with emergent properties and the development of solid-state one-dimensional quantum simulation platforms.The two-dimensional electron gas at an oxide interface is patterned to form a channel with a periodic potential imposed on top. This replicates the textbook Kronig–Penney model and leads to fractionalization of electron bands in the channel.
The COVID-19 pandemic has significantly impacted families across Canada; however, rural low-income mothers and their families have experienced significant challenges due to historical and current ...social, economic, cultural, and health inequities. These inequities complicated mothers' ability to navigate the pandemic. This paper is based on a study that used a grounded theory framework to explore the implications of the COVID-19 pandemic on rural, low-income mothers in Nova Scotia, Canada, while supporting their families' wellbeing during the pandemic. Through 29 interviews with rural low-income mothers, and three focus groups with community organizations serving these mothers, this study found that mothers and their families were deeply impacted by the first and second waves of the COVID-19 pandemic. Factors such as inadequate internet and internet access, limited and unaffordable transportation options, food insecurity, social isolation, and mental health challenges emerged from these interviews. Three focus groups with service providers to low-income rural mothers also informed the final results. The inequities faced by rural mothers created additional barriers to accessing services and resources to support their families' wellbeing during the pandemic. The results of the study connect to the importance of addressing inequities through a holistic social determinants of heath model. As a result, the findings of this study have implications on the actions of service providers, policymakers, and researchers, as little has been written about this demographic in relation to social determinants of health and in the context of the COVID-19 pandemic.
Background
Older adults represent the largest consumers of health care. It is, therefore, important that they receive adequate patient-centered care to empower them to be proactive in managing their ...health.
Aims
This study examined the proportion of older community-dwelling individuals who report receiving patient-centered care during healthcare consultations.
Methods
A cross-sectional study was conducted with 117 clients of an Australian aged care provider. Clients completed a survey examining their perceptions of whether they received patient-centered care (11-items) from healthcare professionals.
Results
The mean number of patient-centered care items reported was 8.7 (±3.1). Speaking to the patient with respect was the item most often reported to be patient-centered (94%). Asking patients about treatment goals or expectations (62%) and how involved they would like to be in treatment (67%) were the items least reported to be patient-centered.
Conclusion
Older adults perceived some important aspects of care were not provided with a patient-centered approach. There is a need to improve healthcare providers' elicitation of older patients' care preferences, enabling patients to determine their level of involvement in their health management.
Multiple clinical studies have treated mesothelin (MSLN)-positive solid tumors by administering MSLN-directed chimeric antigen receptor (CAR) T cells. Although these products are generally safe, ...efficacy is limited. Therefore, we generated and characterized a potent, fully human anti-MSLN CAR. In a phase 1 dose-escalation study of patients with solid tumors, we observed two cases of severe pulmonary toxicity following intravenous infusion of this product in the high-dose cohort (1–3 × 108 T cells per m2). Both patients demonstrated progressive hypoxemia within 48 h of infusion with clinical and laboratory findings consistent with cytokine release syndrome. One patient ultimately progressed to grade 5 respiratory failure. An autopsy revealed acute lung injury, extensive T cell infiltration, and accumulation of CAR T cells in the lungs. RNA and protein detection techniques confirmed low levels of MSLN expression by benign pulmonary epithelial cells in affected lung and lung samples obtained from other inflammatory or fibrotic conditions, indicating that pulmonary pneumocyte and not pleural expression of mesothelin may lead to dose-limiting toxicity. We suggest patient enrollment criteria and dosing regimens of MSLN-directed therapies consider the possibility of dynamic expression of mesothelin in benign lung with a special concern for patients with underlying inflammatory or fibrotic conditions.
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Haas, Albelda, Tanyi, and colleagues observe severe pulmonary toxicity in patients following treatment with high doses of potent CAR T cells engineered to recognize mesothelin. This appears to be due to dynamic upregulation of mesothelin in benign lung, suggesting that lung injury be included as an exclusion criterion.
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