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Informal Caregivers' Experiences and Needs When Caring for a Relative With Heart Failure: An Interview Study
Background: Informal caregivers play an important role for persons with heart failure in strengthening medication adherence, encouraging self-care, and identifying deterioration in health status. Caring for a relative with heart failure can affect informal caregivers' well-being and cause caregiver burden.
Objective: The objective of this study was to explore informal caregivers' experiences and needs when caring for a relative with heart failure living in their own home.
Methods: The study has a qualitative design with an inductive approach. Interviews were conducted with 14 informal caregivers. Data were analyzed using qualitative content analysis.
Results: Two themes emerged: "living in a changed existence" and "struggling and sharing with healthcare." The first theme describes informal caregivers' experiences, needs, and ways of moving forward when living in a changed existence with their relative. Informal caregivers were responsible for the functioning of everyday life, which challenged earlier established roles and lifestyle. They experienced an ever-present uncertainty related to the relative's impending sudden deterioration and to lack of knowledge about the condition. Incongruence was expressed between their own and their relative's understanding and acceptance of the heart failure condition. They also expressed being at peace with their relative and managed to restore new strength and motivation to care. The second theme describes informal caregivers' experiences, needs, and ways in which they handled the healthcare. They felt counted upon but not accounted for, as their care was taken for granted while their need to be seen and acknowledged by healthcare professionals was not met. Informal caregivers experienced an ever-present uncertainty regarding their lack of involvement with healthcare. The lack of involvement with healthcare had a negative impact on the relationship between informal caregivers and their relative due to the mutual loss of important information about changes in medication regimens and the relative's symptoms and well-being. Another cause of negative impact was the lack of opportunity to talk with healthcare professionals about the emotional and relational consequences of heart failure. Healthcare professionals had provided them neither with knowledge on heart failure nor with information on support groups in the municipality. Informal caregivers captured their own mandate through acting as deputies for their relative and claiming their rights of involvement in their relative's healthcare. They also felt confident despite difficult circumstances. The direct access to the medical clinic was a source of relief and they appreciated the contacts with the registered nurses specialized in heart failure. Informal caregivers' own initiatives to participate in meetings were positively received by healthcare professionals.
Conclusions: Informal caregivers' daily life involves decisive changes that are experienced as burdensome. They handled their new situations using different strategies to preserve a sense of "self" and of "us." Informal caregivers express a need for more involvement with healthcare professionals, which may facilitate informal caregivers' situation and improve the dyadic congruence in the relation with their relative
Simple elbow dislocations: a systematic review of the literature
Objective: To identify if functional treatment is the best available treatment for simple elbow dislocations. Search strategy: Electronic databases MEDLINE, EMBASE, LILACS, and the Cochrane Central Register of Controlled Trials. Selection criteria: Studies were eligible for inclusion if they were trials comparing different techniques for the treatment of simple elbow dislocations. Data analysis: Results were expressed as relative risk for dichotomous outcomes and weighted mean difference for continuous outcomes with 95% confidence intervals. Main results: This review has included data from two trials and three observational comparative studies. Important data were missing from three observational comparative studies and the results from these studies were extracted for this review. No difference was found between surgical treatment of the collateral ligaments and plaster immobilisation of the elbow joint. Better range of movement, less pain, better functional scores, shorter disability and shorter treatment time were seen after functional treatment versus plaster immobilisation
Guidelines (1988) for training in clinical laboratory management
Trainees in laboratory medicine must develop skills in laboratory
management. Guidelines are detailed for laboratory staff in
training, directors responsible for staff development and professional
bodies wishing to generate material appropriate to their
needs. The syllabus delineates the knowledge base required and
includes laboratory planning and organization, control of operations,
methodology and instrumentation, data management and
statistics, financial management, clinical use of tests, communication,
personnel management and training and research and
development. Methods for achievement of the skills required are
suggested. A bibliography of IFCC publications and other
material is provided to assist in training in laboratory management
Single Cell Analysis of Lymph Node Tissue from HIV-1 Infected Patients Reveals that the Majority of CD4<sup>+</sup> T-cells Contain One HIV-1 DNA Molecule
Genetic recombination contributes to the diversity of human immunodeficiency virus (HIV-1). Productive HIV-1 recombination is, however, dependent on both the number of HIV-1 genomes per infected cell and the genetic relationship between these viral genomes. A detailed analysis of the number of proviruses and their genetic relationship in infected cells isolated from peripheral blood and tissue compartments is therefore important for understanding HIV-1 recombination, genetic diversity and the dynamics of HIV-1 infection. To address these issues, we used a previously developed single-cell sequencing technique to quantify and genetically characterize individual HIV-1 DNA molecules from single cells in lymph node tissue and peripheral blood. Analysis of memory and naïve CD4+ T cells from paired lymph node and peripheral blood samples from five untreated chronically infected patients revealed that the majority of these HIV-1-infected cells (>90%) contain only one copy of HIV-1 DNA, implying a limited potential for productive recombination in virus produced by these cells in these two compartments. Phylogenetic analysis revealed genetic similarity of HIV-1 DNA in memory and naïve CD4+ T-cells from lymph node, peripheral blood and HIV-1 RNA from plasma, implying exchange of virus and/or infected cells between these compartments in untreated chronic infection
Contribution of risk factors to excess mortality in isolated and lonely individuals: an analysis of data from the UK Biobank cohort study
BACKGROUND: The associations of social isolation and loneliness with premature mortality are well known, but the risk factors linking them remain unclear. We sought to identify risk factors that might explain the increased mortality in socially isolated and lonely individuals.
METHODS: We used prospective follow-up data from the UK Biobank cohort study to assess self-reported isolation (a three-item scale) and loneliness (two questions). The main outcomes were all-cause and cause-specific mortality. We calculated the percentage of excess risk mediated by risk factors to assess the extent to which the associations of social isolation and loneliness with mortality were attributable to differences between isolated and lonely individuals and others in biological (body-mass index, systolic and diastolic blood pressure, and handgrip strength), behavioural (smoking, alcohol consumption, and physical activity), socioeconomic (education, neighbourhood deprivation, and household income), and psychological (depressive symptoms and cognitive capacity) risk factors.
FINDINGS: 466 901 men and women (mean age at baseline 56·5 years [SD 8·1]) were included in the analyses, with a mean follow-up of 6·5 years (SD 0·8). The hazard ratio for all-cause mortality for social isolation compared with no social isolation was 1·73 (95% CI 1·65–1·82) after adjustment for age, sex, ethnic origin, and chronic disease (ie, minimally adjusted), and was 1·26 (95% CI 1·20–1·33) after further adjustment for socioeconomic factors, health-related behaviours, depressive symptoms, biological factors, cognitive performance, and self-rated health (ie, fully adjusted). The minimally adjusted hazard ratio for mortality risk related to loneliness was 1·38 (95% CI 1·30–1·47), which reduced to 0·99 (95% CI 0·93–1·06) after full adjustment for baseline risks.
INTERPRETATION: Isolated and lonely people are at increased risk of death. Health policies addressing risk factors such as adverse socioeconomic conditions, unhealthy lifestyle, and lower mental wellbeing might reduce excess mortality among the isolated and the lonely.
FUNDING: Academy of Finland, NordForsk, and the UK Medical Research Counci
Citizen Science and Open Data: a model for Invasive Alien Species in Europe
Invasive Alien Species (IAS) are a growing threat to Europe's biodiversity. The implementation of European Union Regulation on IAS can benefit from the involvement of the public in IAS recording and management through Citizen Science (CS) initiatives. Aiming to tackle issues related with the use of CS projects on IAS topics, a dedicated workshop titled “Citizen Science and Open Data: a model for Invasive Alien Species in Europe” was organized by the Joint Research Centre (JRC) and the European Cooperation in Science and Technology (COST Association). Fifty key stakeholders from all Europe, including two Members of the European Parliament, attended the workshop. With a clear focus on IAS, the workshop aimed at addressing the following issues: a) CS and policy, b) citizen engagement, and c) CS data management. Nine short presentations provided input on CS and IAS issues. Participants discussed specific topics in several round tables (“world café” style) and reported back their conclusions to the audience and full assembly moderated discussions. Overall, the workshop enabled the sharing of ideas, approaches and best practices regarding CS and IAS. Specific opportunities and pitfalls of using CS data in the whole policy cycle for IAS were recognized. Concerning the implementation of the IAS Regulation, CS data could complement official surveillance systems, and contribute to the early warning of the IAS of Union concern after appropriate validation by the Member States’ competent authorities. CS projects can additionally increase awareness and empower citizens. Attendees pointed out the importance for further public engagement in CS projects on IAS that demonstrate specific initiatives and approaches and analyze lessons learned from past experiences. In addition, the workshop noted that the data gathered from different CS projects on IAS are fragmented. It highlighted the need for using an open and accessible platform to upload data originating from CS sources or to mirror validated data into a single, easy-to-use web service, in line with the EU Open Science Strategic Priority. The workshop provided ten key recommendations of best practices for CS projects on IAS, addressed to researchers, policy makers and implementing authorities, indicating future research and policy directions and opportunities
A Classification of Motivation and Behavior Change Techniques Used in Self-Determination Theory-Based Interventions in Health Contexts
While evidence suggests that interventions based on self-determination theory have efficacy in
motivating adoption and maintenance of health-related behaviors, and in promoting adaptive
psychological outcomes, the motivational techniques that comprise the content of these
interventions have not been comprehensively identified or described. The aim of the present
study was to develop a classification system of the techniques that comprise self-determination
theory interventions, with satisfaction of psychological needs as an organizing principle.
Candidate techniques were identified through a comprehensive review of self-determination
theory interventions and nomination by experts. The study team developed a preliminary list of
candidate techniques accompanied by labels, definitions, and function descriptions of each.
Each technique was aligned with the most closely-related psychological need satisfaction
construct (autonomy, competence, or relatedness). Using an iterative expert consensus
procedure, participating experts (N=18) judged each technique on the preliminary list for
redundancy, essentiality, uniqueness, and the proposed link between the technique and basic
psychological need. The procedure produced a final classification of 21 motivation and
behavior change techniques (MBCTs). Redundancies between final MBCTs against techniques
from existing behavior change technique taxonomies were also checked. The classification
system is the first formal attempt to systematize self-determination theory intervention
techniques. The classification is expected to enhance consistency in descriptions of selfdetermination theory-based interventions in health contexts, and assist in facilitating synthesis
of evidence on interventions based on the theory. The classification is also expected to guide
future efforts to identify, describe, and classify the techniques that comprise self-determination
theory-based interventions in multiple domains
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