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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
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
The multifunctional roles of vegetated strips around and within agricultural fields : A systematic map protocol.
Background: Agriculture and agricultural intensification can have significant negative impacts on the environment, including nutrient and pesticide leaching, spreading of pathogens, soil erosion and reduction of ecosystem services provided by terrestrial and aquatic biodiversity. The establishment and management of vegetated strips adjacent to farmed fields (including various field margins, buffer strips and hedgerows) are key mitigation measures for these negative environmental impacts and environmental managers and other stakeholders must often make decisions about how best to design and implement vegetated strips for a variety of different outcomes. However, it may be difficult to obtain relevant, accurate and summarised information on the effects of implementation and management of vegetated strips, even though a vast body of evidence exists on multipurpose vegetated strip interventions within and around fields. To improve the situation, we describe a method for assembling a database of relevant research relating to vegetated strips undertaken in boreo-temperate farming systems (arable, pasture, horticulture, orchards and viticulture). Methods: We will search 13 bibliographic databases, 1 search engine and 37 websites for stakeholder organisations using a predefined and tested search string that focuses on a comprehensive list of vegetated strip synonyms. Non-English language searches in Danish, Finnish, German, Spanish, and Swedish will also be undertaken using a web-based search engine. We will screen search results at title, abstract and full text levels, recording the number of studies deemed non-relevant (with reasons at full text). A systematic map database that displays the meta-data (i.e. descriptive summary information about settings and methods) of relevant studies will be produced following full text assessment. The systematic map database will be displayed as a web-based geographical information system (GIS). The nature and extent of the evidence base will be discussed
What is the value of orthodontic treatment?
Orthodontic treatment is as popular as ever. Orthodontists frequently have long lists of people wanting treatment and the cost to the NHS in England was £258m in 2010-2011 (approximately 10% of the NHS annual spend on dentistry). It is important that clinicians and healthcare commissioners constantly question the contribution of interventions towards improving the health of the population. In this article, the authors outline some of the evidence for and against the claims that people with a malocclusion are at a disadvantage compared with those without a malocclusion and that orthodontic treatment has significant health benefits. The authors would like to point out that this is not a comprehensive and systematic review of the entire scientific literature. Rather the evidence is presented in order to stimulate discussion and debate
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
Modeling of negative Poisson’s ratio (auxetic) crystalline cellulose Iβ
Energy minimizations for unstretched and stretched cellulose models using an all-atom empirical force field (Molecular Mechanics) have been performed to investigate the mechanism for auxetic (negative Poisson’s ratio) response in crystalline cellulose Iβ from kraft cooked Norway spruce. An initial investigation to identify an appropriate force field led to a study of the structure and elastic constants from models employing the CVFF force field. Negative values of on-axis Poisson’s ratios nu31 and nu13 in the x1-x3 plane containing the chain direction (x3) were realized in energy minimizations employing a stress perpendicular to the hydrogen-bonded cellobiose sheets to simulate swelling in this direction due to the kraft cooking process. Energy minimizations of structural evolution due to stretching along the x3 chain direction of the ‘swollen’ (kraft cooked) model identified chain rotation about the chain axis combined with inextensible secondary bonds as the most likely mechanism for auxetic response
Postpartum depression in the Occupied Palestinian Territory:a longitudinal study in Bethlehem
BACKGROUND: Postpartum depression (PPD) affects women from different cultures around the world. No previous studies have investigated PPD among women in Palestine. Fertility rates in Palestine are among the highest in the world, hence even low rates of PPD could have considerable national impact. The aim of this study was to determine the prevalence of, and risk factors for, PPD among Palestinian mothers. METHODS: 101 mothers were recruited during the registration of their child’s birth (within 1 week) at the Bethlehem branch of the Ministry of Interior. Participants were assessed via a face to face interview, and were followed up 1 week, 2 weeks, 6 weeks, 3 months, and 6 months later by telephone interview. Interviews included the Arabic Edinburgh Postnatal Depression Scale (EPDS), with PPD indicated by depressive symptoms (EPDS score ≥11) at ≥2 follow-up time points. Pearson’s correlation was calculated between repeated EPDS scores, and multivariable logistic regression was used to investigate risk factors for PPD. RESULTS: The prevalence of depressive symptoms was fairly constant (14–19%) over the follow-up period. Most depressive symptoms developed within 1 month of delivery; mothers with depressive symptoms at 3 months postpartum were highly likely to still have symptoms at 6 months. 27.7% (28/101) of women met our criteria for PPD. High parity (odds ratio (OR) 4.52 (95% CI 0.90, 22.8) parity 3+ versus primiparous), unplanned pregnancy (OR 2.44 (0.99, 6.01)) and sex of child not being the one desired (OR 5.07 (1.12, 22.9)) were associated with PPD, but these associations were attenuated in multivariable analysis. CONCLUSIONS: The prevalence of PPD in Palestine appears to be higher than in high income countries, but similar to the prevalence in other Middle Eastern countries. High parity and unplanned pregnancy were identified as risk factors for PPD, suggesting that fully meeting the need for family planning could reduce the incidence of PPD in the Palestinian population
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
Persistence of viral reservoirs in multiple tissues after antiretroviral therapy suppression in a macaque RT-SHIV model
Although antiretroviral therapy (ART) can suppress HIV-1 replication sufficiently to eliminate measurable plasma viremia, infected cells remain and ensure viral recrudescence after discontinuation of ART. We used a macaque model of HIV-1/AIDS to evaluate the location of infected cells during ART. Twelve macaques were infected with RT-SHIVmne, a SIV containing HIV-1 reverse transcriptase, conferring sensitivity to non-nucleoside reverse transcriptase inhibitors (NNRTIs). Ten to fourteen weeks post-infection, 6 animals were treated with 3 or 4 antiretroviral drugs for 17-20 weeks; 6 control animals remained untreated. Viral DNA (vDNA) and RNA (vRNA) were measured in peripheral blood mononuclear cells (PBMC) and at necropsy in multiple tissues by quantitative PCR and RT-PCR. The majority of virally infected cells were located in lymphoid tissues with variable levels in the gastrointestinal tract of both treated and untreated animals. Tissue viral DNA levels correlated with week 1 plasma viremia, suggesting that tissues that harbor proviral DNA are established within the first week of infection. PBMC vDNA levels did not correlate with plasma viremia or tissue levels of vDNA. vRNA levels were high in lymphoid and gastrointestinal tissues of the untreated animals; animals on ART had little vRNA expressed in tissues and virus could not be cultured from lymph node resting CD4+ cells after 17-20 weeks on ART, indicating little or no ongoing viral replication. Strategies for eradication of HIV-1 will need to target residual virus in ART suppressed individuals, which may not be accurately reflected by frequencies of infected cells in blood. © 2013 Kline et al
Can Non-lytic CD8+T Cells Drive HIV-1 Escape?
The CD8+ T cell effector mechanisms that mediate control of HIV-1 and SIV infections remain poorly understood. Recent work suggests that the mechanism may be primarily non-lytic. This is in apparent conflict with the observation that SIV and HIV-1 variants that escape CD8+ T cell surveillance are frequently selected. Whilst it is clear that a variant that has escaped a lytic response can have a fitness advantage compared to the wild-type, it is less obvious that this holds in the face of non-lytic control where both wild-type and variant infected cells would be affected by soluble factors. In particular, the high motility of T cells in lymphoid tissue would be expected to rapidly destroy local effects making selection of escape variants by non-lytic responses unlikely. The observation of frequent HIV-1 and SIV escape poses a number of questions. Most importantly, is the consistent observation of viral escape proof that HIV-1- and SIV-specific CD8+ T cells lyse infected cells or can this also be the result of non-lytic control? Additionally, the rate at which a variant strain escapes a lytic CD8+ T cell response is related to the strength of the response. Is the same relationship true for a non-lytic response? Finally, the potential anti-viral control mediated by non-lytic mechanisms compared to lytic mechanisms is unknown. These questions cannot be addressed with current experimental techniques nor with the standard mathematical models. Instead we have developed a 3D cellular automaton model of HIV-1 which captures spatial and temporal dynamics. The model reproduces in vivo HIV-1 dynamics at the cellular and population level. Using this model we demonstrate that non-lytic effector mechanisms can select for escape variants but that outgrowth of the variant is slower and less frequent than from a lytic response so that non-lytic responses can potentially offer more durable control
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