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How lived experiences of illness trajectories, burdens of treatment, and social inequalities shape service user and caregiver participation in health and social care: a theory-informed qualitative evidence synthesis
Get PDFBackground:
The workload service users and caregivers take on, and their capacity to do this work, when they engage with and participate in different kinds of care is important. It is reflected in policy and practice interventions that identify service users and caregivers as part of a team that consists of informal networks beyond provider organisations and the professionals within them in health and social care.
Aims and objectives:
To synthesise qualitative studies of the lived experience of the work of service user and caregiver engagement in three kinds of conditions: long-term conditions associated with significant disability (Parkinson’s disease, schizophrenia); serious relapsing–remitting disease (inflammatory bowel disease, bipolar disorder); and rapidly progressing acute disease (brain cancer, early-onset dementia).
Design:
Theory-informed qualitative evidence synthesis of primary qualitative studies, qualitative systematic reviews and meta-syntheses. Papers analysed using qualitative attribution analysis, and Event-State Modelling.
Data sources:
Cumulative Index to Nursing and Allied Health Literature, EMBASE, MEDLINE, PsycInfo, Scopus and Social Care Online were searched from January 2010 to April 2021.
Eligibility criteria for selecting studies :
Qualitative primary studies, systematic reviews and meta-syntheses where the participants were service users, or caregivers, aged ≥ 18, with one of six index conditions, and which described their lived experiences of care.
Methods:
Qualitative evidence synthesis to model core components of service user and caregiver work, and to identify common factors across index conditions, disease trajectories and service contexts.
Results:
Searches identified 34,787 records. Following deduplication, 13,234 records were assessed for relevance, and after first-stage screening, 7782 records were excluded at this stage, leaving 5452 for further screening, and 279 of these met inclusion criteria and were included in the evidence synthesis. These showed that patients’ and caregivers’ lived experiences of illness trajectories were shaped by mechanisms of enabling agency (personal capacity, social capital, affective contributions of others), and their degree of existential threat, competence in managing processes of care, and caregiver responses to new responsibilities. Their degree of structural disadvantage was framed in terms of loss of income, employment and housing, and by the presence of stigma, rather than by intersectional position and socioeconomic status.
Conclusions:
This evidence synthesis maps intervention points to support service users and caregivers, and the trajectories of work that frame their effective participation in their care. We identify potential targets for interventions that could support their outward-facing work as they seek to mobilise agency, sustain personal capacity, maintain their social capital and draw on the affective contributions of others.
Limitations:
Our pragmatic search strategies led to a maximum variation sample of studies of lived experiences of index conditions but may have missed relevant studies. No papers with an explicit social care focus were discovered for brain cancer, bipolar disorder and inflammatory bowel disease. Most studies were descriptive, and samples and methods were often poorly described.
Future work:
Future research should explore interactions between personal capacity, social capital and affective contributions, in lived experiences of service users and caregivers.
Study registration
This study is registered as PROSPERO CRD42020224787.
Funding:
This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR130407) and is published in full in Health and Social Care Delivery Research ; Vol. 13, No. 24. See the NIHR Funding and Awards website for further award information
In-Network GOOSE Encryption with eBPF-based Programmable Network Architecture
No full textRetrofitting cybersecurity to digital substations is a costly and challenging effort. Communication encryption and device authentication are two of the most important techniques to ensure confidentiality, integrity and availability. However, most common grid devices do not support modern cryptography due to limited computational capacity of legacy devices. In this paper, we perform detailed performance comparison of several encryption protocols on GOOSE traffic, taking into consideration entire payload encryption, encryption of only critical fields, and CPU performance. We compared the efficiency of five algorithms and their effect on end-to-end latency on resource-constrained single board devices. Finally, we propose an in-network eBPF-based programmable data plane solution which performs encryption and decryption in–network as opposed to grid devices and therefore eliminates the need for replacing the power grid IEDs or buying additional encryption / decryption cards. We implemented the best performing algorithm – Chacha20 in-network and tested the proposed architecture achieving end-to-end latency under 0.5 ms during normal operation and under 1 ms under heavily loaded network and high messages frequency, thus complying with the GOOSE latency limit
Adaptive Learning Feature Quantization for In-network FDI Detection in IEC 61850 Digital Substations
No full texteBPF is getting traction as an offload technology for supporting low-latency networking and security function acceleration, with excellent integration in end-host networking stacks. eBPF offloads the network stack to in–kernel and in–network programs offering fast execution times for tasks such as real–time network monitoring, network traffic manipulation and system profiling. At the same time, in order to bound execution time, it provides a constrained environment with, among others, no support for Floating Point (FP) arithmetic, something that can hinder the development of advanced traffic classification algorithms required for cybersecurity and anomaly detection use-cases. In this work, we use a feature–aware KL–divergence–based quantization methodology to implement a False Data Injection (FDI) detection micro–service over BPFabric, an eBPF–based programmable network dataplane framework, using feature–aware quantization on GOOSE traffic in an IEC 61850 digital substation. When compared to Standard Scaling (SS), FP arithmetic, and conventional quantization methods, the proposed adaptive quantization improves detection accuracy, F1–score, and receiver–operating–characteristics (ROC) by 5.49%, 8.3%, and 7.05%, respectively. In addition, it improves resource utilization by up to 46% and 10% in inference model size compared to conventional SS and quantization methods, respectively. Inference time is also improved by 10−5s compared to a userspace implementation
Tuned inerter viscoelastic liquid column dampers
No full textStructural vibration control remains a major challenge in engineering, particularly for buildings exposed to dynamic excitations. While conventional Tuned Liquid Column Dampers (TLCDs) and inerter-based TLCDs offer passive damping solutions, they are limited in simultaneously optimising inertial and damping effects. This study proposes Tuned Inerter Viscoelastic Liquid Column Dampers (TIVLCDs), a novel class of passive dampers combining inerters with viscoelastic materials to enhance energy dissipation. Closed-form expressions for optimal design parameters are derived using statistical linearisation and H∞ optimisation. Frequency domain analyses show that the V-shaped TIVLCD achieves peak displacement reductions of 96.93% and 96.43%, and acceleration reductions of 78.40% and 81.82%, compared to TLCD and TLCDI, respectively. Time history analyses under real earthquake ground motions reveal displacement reductions of 27.35% and 29.36%, and acceleration reductions of 22.99% and 27.17%, for U-shaped and V-shaped TIVLCDs relative to TLCDI. These improvements are attributed to the enhanced coupling between inertial, viscoelastic, and gravitational effects. The findings demonstrate that TIVLCDs, particularly the V-shaped design, provide significantly better vibration and acceleration mitigation than existing solutions, establishing them as an effective and adaptable tool for passive structural control under seismic loading
Thomas Blank, Religiöse Geheimniskommunikation in der Mittleren und Späten Römischen Republik. Separatheit, gesellschaftliche Öffentlichkeit und zivisches Ordnungshandeln. Potsdamer Altertumswissenschaftliche Beiträge, 82. Stuttgart: Franz Steiner Verlag, 2024. Pp. 648. ISBN 9783515133869
No full textNo abstract available
The spatial heterogeneity of malaria transmission: an entomological investigation in a highly endemic setting of Burkina Faso
Get PDFMalaria hotspots are often observed at multiple spatial scales, shaped by environmental, entomological, and human factors. The dynamics underlying transmission heterogeneity remains poorly understood, limiting the effectiveness of locally tailored control strategies. This study investigates transmission spatial patterns in an ITN-covered Burkina Faso village, exploiting entomological predictors of exposure risk in relation to environmental factors. Pyrethrum spray collections were conducted in 59 houses across the North-West, East, and South areas of Goden village. Anopheles mosquitoes were analysed for species identification, human blood index (HBI), sporozoite rate (SR), and infected human blood meal rate (IHBM). Entomological indices and mosquito abundance were spatially interpolated and then included in GAMLSS models to assess the effects of ecological variables. Anopheles coluzzii was the dominant vector, representing 79% of An. gambiae (s.l.) collected (n = 1492). Blood-meal analysis indicated low anthropophily (HBI = 45%, n = 687), yet SR was high (10%, n = 930), likely sustained by elevated parasite circulation among residents. In fact, the IHBM revealed that 43% of human blood meals contained erythrocytic parasite stages. Statistics highlighted a spatial effect on human-vector contacts and proportionally higher values of HBI, SR, and IHBM clustering in the North-West area. This suggests the presence of a hotspot where inhabitants were more exposed to infectious bites, and vectors had greater chances of acquiring Plasmodium spp. Notably, infective mosquitoes had 1.8-fold higher anthropophily than non-infective ones. Although further investigations are needed, this study unveiled a possible mechanism sustaining local hotspots by linking uneven biting exposure of human reservoir and increased anthropophily of infective mosquitoes
Efficacy and safety of finerenone across the ejection fraction spectrum in heart failure with mildly reduced or preserved ejection fraction: a prespecified analysis of the FINEARTS-HF trial
Get PDFBACKGROUND:
The effects of treatments for heart failure (HF) may vary among patients according to left ventricular ejection fraction (LVEF). In FINEARTS-HF (Finerenone Trial to Investigate Efficacy and Safety Superior to Placebo in Patients With Heart Failure), the nonsteroidal mineralocorticoid receptor antagonist finerenone reduced the risk of cardiovascular death and total worsening HF events in patients with HF with mildly reduced or preserved ejection fraction. We examined the effect of finerenone according to LVEF in FINEARTS-HF.
METHODS:
FINEARTS-HF was a randomized, placebo-controlled trial examining the efficacy and safety of finerenone in patients with HF and LVEF ≥40%. The treatment effect of finerenone was examined in prespecified analyses according to LVEF categories (<50%, ≥50% to <60%, and ≥60%) and with LVEF as a continuous variable. The primary outcome was a composite of total (first and recurrent) worsening HF events and cardiovascular death.
RESULTS:
Baseline LVEF data were available for 5993 of the 6001 participants in FINEARTS-HF. Mean and median LVEF were 53±8% and 53% (interquartile range, 46%–58%), respectively. LVEF was <50% in 2172 (36%), between 50% and <60% in 2674 (45%), and ≥60% in 1147 (19%). Patients with higher LVEF were older, were more commonly female, were less likely to have a history of coronary artery disease, and more frequently had a history of hypertension and chronic kidney disease compared with those with a lower LVEF. Finerenone reduced the risk of cardiovascular death and total HF events consistently across LVEF categories (LVEF <50% rate ratio, 0.84 [95% CI, 0.68–1.03]; LVEF ≥50% to <60% rate ratio, 0.80 [0.66–0.97]; and LVEF ≥60% rate ratio, 0.94 [0.70–1.25]; Pinteraction=0.70). There was no modification of the benefit of finerenone across the range of LVEF when analyzed as a continuous variable (Pinteraction=0.28). There was a similar consistent effect of finerenone on reducing the total number of worsening HF events (continuous Pinteraction=0.26).
CONCLUSIONS:
In patients with HF with mildly reduced or preserved ejection fraction, finerenone reduced the risk of cardiovascular death and worsening HF events, irrespective of LVEF.
REGISTRATION:
URL: https://www.clinicaltrials.gov; Unique identifier: NCT04435626. URL: https://eudract.ema.europa.eu; Unique identifier: 2020-000306-29
Nicholas Radburn, Traders in Men: Merchants and the Transformation of the Transatlantic Slave Trade. New Haven CT and London: Yale University Press (hb US$35/£25 – 978 0 300 25761 8). 2023, 341 pp.
Get PDFNo abstract available
PROS1 released by lung basal cells limits inflammation in epithelial and monocytes during SARS-CoV-2 infection
No full textIntroduction:
Factors regulating the severity of pneumonitis during viral infections remain unresolved. We previously found higher expression of protein S (PROS1) in lung epithelium of mild compared to severe COVID-19 patients. We hypothesised that PROS1 may protect the upper airways by regulating epithelial and myeloid cell responses during SARS-CoV-2 infection.
Methods:
To test this, in vitro air-liquid-interface (ALI) cultures of primary healthy human lung epithelial cells were infected with SARS-CoV-2. This model, validated through immunofluorescent staining, confocal microscopy and single-cell RNA-sequencing, replicated pathogenic changes seen in lungs of COVID-19. Regulation and secretion of PROS1, along with multiple soluble mediators, were quantified in control and infected cultures using ELISAs.
Results:
We found that PROS1 is present in the basal cells of healthy pseudostratified epithelium and is released during SARS-CoV-2 infection through an IFN-mediated process. Transcriptome analysis revealed that PROS1 downregulated the SARS-CoV-2 induced proinflammatory phenotypes of basal cells, transforming pathogenic CXCL10/11high into a regenerative S100A2posKRThigh basal cell phenotype. In parallel, SARS-CoV-2 increased the secretion of M-CSF from epithelial cells, which induced the expression of PROS1 receptor MERTK on monocytes interacting with the lung epithelium. PROS1, in turn, shifted SARS-CoV-2-induced pathogenic monocyte phenotypes towards a phenotype with increased MHC class II.
Conclusion:
These findings highlight the crucial role of PROS1 in protecting against severe lung pathology caused by SARS-CoV-2, by reducing epithelial- and monocyte-derived inflammation, promoting pro-repair epithelial phenotypes, and enhancing antigen presentation in myeloid cells
Data sources:
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