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‘Someone must do it’: multiple views on family’s role in end-of-life care – an international qualitative study.
Get PDFBackground:
Family is a crucial social institution in end-of-life care. Family caregivers are
encouraged to take on more responsibility at different times during the illness, providing
personal and medical care. Unpaid work can be overburdening, with women often spending
more time in care work than men.
Objectives:
This study explored multiple views on the family’s role in end-of-life care from
a critical perspective and a relational autonomy lens, considering gender in a socio-cultural
context and applying a relational autonomy framework. It explored patients, relatives and
healthcare providers’ points of view.
Design:
This qualitative study was part of the iLIVE project, involving patients with incurable
diseases, their relatives and health carers from hospital and non-hospital sites.
Methods:
Individual interviews of at least five patients, five relatives and five healthcare
providers in each of the 10 participating countries using a semi-structured interview guide
based on Giger–Davidhizar–Haff’s model for cultural assessment in end-of-life care. Thematic
analysis was performed initially within each country and across the complete dataset. Data
sources, including researchers’ field notes, were translated into English for international
collaborative analysis.
Results:
We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers).
After collaborative analysis, five themes were identified across the countries: family as a finite
care resource, families’ active role in decision-making, open communication with the family,
care burden and socio-cultural mandates. Families were crucial for providing informal care
during severe illness, often acting as the only resource. Patients acknowledged the strain
on carers, leading to a conceptual model highlighting socio-cultural influences, relational
autonomy, care burden and feminisation of care.
Conclusion:
Society, health teams and family systems still need to better support the role
of family caregivers described across countries. The model implies that family roles in
end-of-life care balance relational autonomy with socio-cultural values. Real-world endof-
life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an
interpersonal setting. Gender is often prominent, but normative ideas influence the decisions
and actions of all involved
Evaluation of candidate data-based welfare indicators for veal calves in Switzerland.
Get PDFWelfare assessment protocols have been developed for dairy cows and veal calves during the past decades. One practical use of such protocols may be conducting welfare assessments by using routinely collected digital data (i.e., data-based assessment). This approach can allow for continuous monitoring of animal welfare in a large number of farms. It recognises changes in the animal welfare status over time and enables comparison between farms. Since no comprehensive data-based assessment for veal calves is currently available, the purposes of this review are (i) to provide an overview of single existing data-based indicators for veal calves and (ii) to work out the necessary requirements for data-based indicators to be used in a comprehensive welfare assessment for veal calves in Switzerland. We used the Welfare Quality Protocol® (WQ) for veal calves and the Terrestrial Animal Health Code from the World Organisation of Animal Health for guidance throughout this process. Subsequently, routinely collected data were evaluated as data sources for welfare assessment in Swiss veal operations. The four WQ principles reflecting animal welfare, i.e., 'good feeding', 'good housing', 'good health' and 'appropriate behaviour' were scarcely reflected in routinely available data. Animal health, as one element of animal welfare, could be partially assessed using data-based indicators through evaluation of mortality, treatments, and carcass traits. No data-based indicators reflecting feeding, housing and animal behaviour were available. Thus, it is not possible to assess welfare in its multidimensionality using routinely collected digital data in Swiss veal calves to date. A major underlying difficulty is to differentiate between veal calves and other youngstock using routine data, since an identifying category for veal calves is missing in official Swiss databases. In order to infer animal welfare from routine data, adaptations of data collection strategies and animal identification are required. Data-based welfare assessment could then be used to complement on-farm assessments efficiently and, e.g., to attribute financial incentives for specifically high welfare standards accordingly
European survey on follow-up strategies for unruptured intracranial aneurysms.
Get PDFINTRODUCTION
The increasing detection rates of unruptured intracranial aneurysms (UIA) pose a challenge for both neurovascular centers, tasked with managing a growing pool of patients requiring regular monitoring with imaging, and the healthcare system that must bear the costs of such surveillance. While there is consensus on the need for follow-up of UIA, uncertainties persist regarding the optimal cessation of surveillance, especially when considering diverse patient risk factors and, notably, in cases of treated aneurysms with stable rest perfusion. Detailed guidelines on UIA follow-up are currently lacking, exacerbating these challenges.
RESEARCH QUESTION
We sought to investigate European strategies for follow-up of untreated, microsurgically and endovascularly treated UIA.
MATERIAL AND METHODS
An online survey consisting of 15 questions about follow-up management of UIA was sent out to the cerebrovascular section of the European Association of Neurosurgical Societies (EANS).
RESULTS
The survey response rate was 27.3% (68/249). There was consenus upon the necessity for long-term follow-up of UIA (100% [n = 68]). The recommendation to perform follow-up was inversely correlated with patient age and more prevalent among endovascularly compared to microsurgically treated patients (92.6% [n = 63] vs. 70.6% [n = 48]). A majority recommended continued follow-up of treated aneurysms with stable rest perfusion, with lifelong surveillance in patients under 60 years and continuation for 5-10 years in patients aged 61-80, irrespective of whether they underwent microsurgical (38.3% [n = 23]; 33.3% [n = 20]) or endovascular (41.9% [n = 26]; 30.6% [n = 19]) treatment.
DISCUSSION AND CONCLUSION
This survey confirmed a European consensus on the necessity of long-term follow-up for untreated UIA. However, significant variations in follow-up strategies, especially for treated UIA and post-treatment rest perfusion, were noted. Despite limited evidence suggesting low risk from aneurysm remnants, respondents favored long-term follow-up, highlighting uncertainty in management. This underscores the need for collaborative research on aneurysm remnants and standardized follow-up protocols for UIA in Europe
crossnma: An R package to synthesize cross-design evidence and cross-format data using network meta-analysis and network meta-regression.
Get PDFBACKGROUND
Although aggregate data (AD) from randomised clinical trials (RCTs) are used in the majority of network meta-analyses (NMAs), other study designs (e.g., cohort studies and other non-randomised studies, NRS) can be informative about relative treatment effects. The individual participant data (IPD) of the study, when available, are preferred to AD for adjusting for important participant characteristics and to better handle heterogeneity and inconsistency in the network.
RESULTS
We developed the R package crossnma to perform cross-format (IPD and AD) and cross-design (RCT and NRS) NMA and network meta-regression (NMR). The models are implemented as Bayesian three-level hierarchical models using Just Another Gibbs Sampler (JAGS) software within the R environment. The R package crossnma includes functions to automatically create the JAGS model, reformat the data (based on user input), assess convergence and summarize the results. We demonstrate the workflow within crossnma by using a network of six trials comparing four treatments.
CONCLUSIONS
The R package crossnma enables the user to perform NMA and NMR with different data types in a Bayesian framework and facilitates the inclusion of all types of evidence recognising differences in risk of bias
Chemotherapy increases CDA expression and sensitizes malignant pleural mesothelioma cells to capecitabine treatment.
Get PDFThe combination of cisplatin and pemetrexed remains the gold standard chemotherapy for malignant pleural mesothelioma (MPM), although resistance and poor response pose a significant challenge. Cytidine deaminase (CDA) is a key enzyme in the nucleotide salvage pathway and is involved in the adaptive stress response to chemotherapy. The cytidine analog capecitabine and its metabolite 5'-deoxy-5-fluorocytidine (5'-DFCR) are converted via CDA to 5-fluorouracil, which affects DNA and RNA metabolism. This study investigated a schedule-dependent treatment strategy, proposing that initial chemotherapy induces CDA expression, sensitizing cells to subsequent capecitabine treatment. Basal CDA protein expression was low in different mesothelioma cell lines but increased in the corresponding xenografts. Standard chemotherapy increased CDA protein levels in MPM cells in vitro and in vivo in a schedule-dependent manner. This was associated with epithelial-to-mesenchymal transition and with HIF-1alpha expression at the transcriptional level. In addition, pretreatment with cisplatin and pemetrexed in combination sensitized MPM xenografts to capecitabine. Analysis of a tissue microarray (TMA) consisting of samples from 98 human MPM patients revealed that most human MPM samples had negative CDA expression. While survival curves based on CDA expression in matched samples clearly separated, significance was not reached due to the limited sample size. In non-matched samples, CDA expression before but not after neoadjuvant therapy was significantly associated with worse overall survival. In conclusion, chemotherapy increases CDA expression in xenografts, which is consistent with our in vitro results in MPM and lung cancer. A subset of matched patient samples showed increased CDA expression after therapy, suggesting that a schedule-dependent treatment strategy based on chemotherapy and capecitabine may benefit a selected MPM patient population
Working with the non-observable: audio-visual modes of doing and undoing knowledge [Visual Anthropology Network (VANEASA) Panel]
No full textConsidering that the term and concept of ‘theory’ derive from the Greek word theorein, meaning ‘to look at,’ to ‘contemplate,’ to ‘speculate,’ this panel asks how non-observable realities can be grasped and theorised through audio-visual means. As theorein combines theion (the divine) and orao (I see) - 'I contemplate the divine' - engaging in theory and analytical practices implies experiencing something through cognition that cannot be directly observed. Audio-visual and multimodal anthropology has frequently grappled with the non-observable and the abstract, not only in terms of making it visible but, more importantly, in terms of making it known. We invite anthropologists to investigate the intersection of audio-visual and multimodal approaches with the abstract, the unexpected, and the non-observable domains of social life by participating in a different form of panel presentation.
We will leverage the lightning panel format, using the dynamism of Pecha Kucha presentation, to disrupt the solidification of knowledge communication and reveal the openness and vulnerability of abstract arguments. We anticipate that the constraints of the Pecha Kucha format (a 6-minute and 40-second presentation with 20 slides, each displayed for 20 seconds) will prompt innovative approaches and stimulate diverse discussions on how to engage with the non-observable. We invite presentations on a diverse range of themes, and welcome a variety of audio-visual and multimodal approaches, from photos, moving images, soundscapes, AI, and different art forms that engage with different ways of doing anthropology
The Efficacy of Web-Based Cognitive Behavioral Therapy With a Shame-Specific Intervention for Social Anxiety Disorder: Randomized Controlled Trial.
No full textBACKGROUND
Social anxiety disorder (SAD) is one of the most prevalent psychological disorders and generally co-occurs with elevated shame levels. Previous shame-specific interventions could significantly improve outcomes in social anxiety treatments. Recent review suggests that integrating a more direct shame intervention could potentially increase the effectiveness of cognitive behavioral therapy. Web-based cognitive behavioral therapy (WCBT) has proven efficacy, sustaining benefits for 6 months to 4 years. Previous evidence indicated that shame predicted the reduction of social anxiety and mediated between engagements in exposure and changes in social anxiety during WCBT.
OBJECTIVE
This study aimed to design a shame intervention component through a longitudinal study and conduct a randomized controlled trial to investigate the effectiveness of a shame intervention component in reducing social anxiety symptoms and shame experience in a clinical sample of people with SAD.
METHODS
The development of a shame intervention component was informed by cognitive behavioral principles and insights from longitudinal data that measured the Experience of Shame Scale (ESS), the Coping Styles Questionnaire, and the Social Interaction Anxiety Scale (SIAS) in 153 participants. The psychoeducation, cognitive construct, and exposure sections were tailored to focus more on shame-related problem-solving and self-blame. A total of 1220 participants were recruited to complete questionnaires, including the ESS, the SIAS, the Social Phobia Scale (SPS), and diagnostic interviews. Following a 2-round screening process, 201 participants with SAD were randomly assigned into a shame WCBT group, a normal WCBT group, and a waiting group. After the 8-week WCBT intervention, the participants were asked to complete posttest evaluations, including the ESS, SIAS and SPS.
RESULTS
Participants in the shame WCBT group experienced significant reductions in shame levels after the intervention (ESS: P<.001; ηp2=0.22), and the reduction was greater in the shame intervention group compared to normal WCBT (P<.001; mean deviation -12.50). Participants in both the shame WCBT and normal WCBT groups experienced significant reductions in social anxiety symptoms (SIAS: P<.001; ηp2=0.32; SPS: P<.001; ηp2=0.19) compared to the waiting group after intervention. Furthermore, in the experience of social interaction anxiety (SIAS), the shame WCBT group showed a higher reduction compared to the normal WCBT group (P<.001; mean deviation -9.58). Problem-solving (SE 0.049, 95% CI 0.025-0.217) and self-blame (SE 0.082, 95% CI 0.024-0.339) mediated the effect between ESS and SIAS.
CONCLUSIONS
This is the first study to design and incorporate a shame intervention component in WCBT and to validate its efficacy via a randomized controlled trial. The shame WCBT group showed a significant reduction in both shame and social anxiety after treatment compared to the normal WCBT and waiting groups. Problem-solving and self-blame mediated the effect of shame on social anxiety. In conclusion, this study supports previous findings that a direct shame-specific intervention component could enhance the efficacy of WCBT
KCNQ1 suppression-replacement gene therapy in transgenic rabbits with type 1 long QT syndrome.
Get PDFBACKGROUND AND AIMS
Type 1 long QT syndrome (LQT1) is caused by pathogenic variants in the KCNQ1-encoded Kv7.1 potassium channels, which pathologically prolong ventricular action potential duration (APD). Herein, the pathologic phenotype in transgenic LQT1 rabbits is rescued using a novel KCNQ1 suppression-replacement (SupRep) gene therapy.
METHODS
KCNQ1-SupRep gene therapy was developed by combining into a single construct a KCNQ1 shRNA (suppression) and an shRNA-immune KCNQ1 cDNA (replacement), packaged into adeno-associated virus serotype 9, and delivered in vivo via an intra-aortic root injection (1E10 vg/kg). To ascertain the efficacy of SupRep, 12-lead electrocardiograms were assessed in adult LQT1 and wild-type (WT) rabbits and patch-clamp experiments were performed on isolated ventricular cardiomyocytes.
RESULTS
KCNQ1-SupRep treatment of LQT1 rabbits resulted in significant shortening of the pathologically prolonged QT index (QTi) towards WT levels. Ventricular cardiomyocytes isolated from treated LQT1 rabbits demonstrated pronounced shortening of APD compared to LQT1 controls, leading to levels similar to WT (LQT1-UT vs. LQT1-SupRep, P < .0001, LQT1-SupRep vs. WT, P = ns). Under β-adrenergic stimulation with isoproterenol, SupRep-treated rabbits demonstrated a WT-like physiological QTi and APD90 behaviour.
CONCLUSIONS
This study provides the first animal-model, proof-of-concept gene therapy for correction of LQT1. In LQT1 rabbits, treatment with KCNQ1-SupRep gene therapy normalized the clinical QTi and cellular APD90 to near WT levels both at baseline and after isoproterenol. If similar QT/APD correction can be achieved with intravenous administration of KCNQ1-SupRep gene therapy in LQT1 rabbits, these encouraging data should compel continued development of this gene therapy for patients with LQT1
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