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Background: Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care. Aim: To provide expert recommendations on outcome measurement in palliative care in clinical practice and research. Methods: Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper. Results: In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients’ needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed. Conclusion: The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics. [ABSTRACT FROM AUTHOR]

The article presents a study that defines the optimal palliative care in dementia. The study provides a brief overview about the disease. The study invited 89 experts from 27 countries to evaluate a two-round online survey with feedback. It also suggests the availability of immediate and full consensus on the eight domains, including the recommendations person-centered care, communication and shared decision-making and optimal treatment of symptoms.

People with dementia from culturally and linguistically diverse backgrounds often face poor health and social outcomes such as stigma, depression, and reduced help seeking behaviours. Dementia friendly communities have been shown to reduce stigma, and the gap in health and social outcomes for people impacted by dementia. Despite the large presence of established dementia friendly communities, their functioning in multicultural communities remains underexplored. The aim of this review was to identify the barriers and facilitators of cultural inclusivity to inform the development of a multicultural dementia friendly community. We systematically searched for academic and grey literature regarding existing and prospective age or dementia-friendly communities that engaged with culturally and linguistically diverse communities. Using the matrix method, data on the barriers and facilitators to engagement were extracted. Papers were analysed for common themes and findings were integrated in a narrative format. A total of 3,164 papers were identified, 11 of which met inclusion criteria. There were 6 dementia friendly communities in North America, 3 in Europe, 1 in Australia and 1 in Asia. Analyses revealed that barriers to cultural inclusivity were centered around the accessibility of services, sociocultural factors, and the environment, including issues such as low awareness of dementia and stigma, language barriers, isolation, and the inaccessibility of transport and buildings. Leveraging existing cultural leaders and social structures to target culturally and linguistically diverse populations and develop tailored dementia friendly initiatives were key facilitators. To foster cultural inclusivity in dementia friendly communities, a culturally specific lens that addresses these barriers and utilises facilitators must be applied from the design stage through to implementation and evaluation. [ABSTRACT FROM AUTHOR]

Most people who experience trauma want to thrive and often find paths to well-being and healthy functioning. This scoping review explores the existing evidence on adversity and resilience in southeastern European countries, focusing on Kosovo. There is a lack of research on trauma and resilience in cultures outside the US and Western Europe. The paper provides a brief cultural and historical overview of this region and the collectivist cultures found there. We draw from a range of interdisciplinary literatures to identify key strengths that have the potential to improve health outcomes for trauma victims in this region. Overall, 42 papers from PsycInfo and PubMed were identified, using keywords such as "resilience" or "health" and "Kosovo," "Balkans," and "Southeastern Europe." Findings from this scoping review show that different cultural values, norms, and societal ecologies impact resilience within these societies. Some strengths, such as social support and sense of purpose, echoed similar research in the US and Western Europe. There was also evidence that factors such as dignity, family solidarity, social activism, and nationwide meaning-making are strengths associated with resilience for these collectivist societies of southeastern Europe. We also consider the implications of the results for other post-conflict societies. Finally, findings from this review call for culturally sensitive strength-based perspectives in promoting health and well-being after the high dosages of trauma common in this region. [ABSTRACT FROM AUTHOR]

The first European Union Survey on Violence against Women (EU-VAW) released in 2014 revealed the unexpected result indicating that the world's most egalitarian countries have relatively high rates of Intimate Partner Violence Against Women (IPVAW). This phenomenon, referred to as the "Nordic Paradox," revived a heated, intermittently ongoing discussion dating back four decades where several competing hypotheses about the relationship between gender inequality and IPVAW have been proposed, but no consensus has been reached. The main aim of this paper is to revisit the most important of such hypotheses proposed in the last four decades, while proposing a new one that could potentially throw some light on understanding the "Nordic Paradox." Multilevel linear regression models are estimated using data from the EU-VAW survey conducted in 2012, and an alternative operationalization of the Gender Equality Index (GEI) (our measure of gender equality). We did not find any significant effect of gender equality on IPVAW repetition. However, we found that higher country-level status of women and men go together with less IPVAW, with a larger effect of women's status in economic domains compared to the impact of men's economic status, and a larger effect of men's overall status. These findings support the Marxist feminist hypothesis, stating that women's absolute status in the economic and labor domain is critical in lessening IPVAW, as women's real and potential access to resources is key for leaving a violent relationship. At the same time, our results support the "male privilege protection" hypothesis, which states that gains in women's status in certain domains—such as in the economic sphere considering our results for the European Union—would not suppose a threat to men, allowing ameliorative effects. In contrast, if the overall status of men is threatened, backlash effects would be triggered. [ABSTRACT FROM AUTHOR]

Background: The concept of stigma has been widely used to understand patterns of discrimination and negative ideas surrounding people with mental health problems, yet we know little of the specific nuances of how this might operate beyond the 'Global North'. Aim: This paper aims to explore the notion of stigma in an Indian context by considering the lived experience of patients, carers and community members. Methods: A sample of 204 participants, representing mental health patients, informal carers and community members was recruited from urban and rural areas in Kerala, India. Participants took part in interviews where they were encouraged to talk about their experiences of mental ill health, attitudes towards these problems, barriers encountered and sources of support. Results: Experiences akin to the experience of stigma in Europe and the United States were elicited but there were important local dimensions specific to the Indian context. The difficulties faced by people with diagnoses of mental disorders in finding marriage partners was seen as an important problem, leading to marriage proposals being refused in some cases, and secrecy on the part of those with mental health problems. Rather than the 'self-stigma' identified in the US, participants were more likely to see this as a collective problem in that it could reflect badly on the family group as a whole rather than just the sufferer. Conclusions: In the Indian context, the idioms of stigma emphasised impairments in marriage eligibility and the implications for the family group rather than just the self. [ABSTRACT FROM AUTHOR]

The role of children's caregiving has received substantial attention in studies on care in old age. Previous research shows that children's care provision is strongly intertwined with both their individual and siblings' situation regarding employment and geographic parent-child distance. This study uses data from six waves of the Survey of Health, Ageing and Retirement in Europe (SHARE), taking a within-family approach, to examine how caregiving is (re-)distributed between siblings over time. The provision of continuous parent care is observed more frequent and volatile in European countries with a family-based care system. The results from family fixed-effects regression models demonstrate that children working less than siblings persist in caregiving more. Living closest to parents facilitates children to keep up care efforts, while changing to living closest enhances the start of parent care. This study suggests that geographic distance is vital in the long-term organization of parent care between siblings. [ABSTRACT FROM AUTHOR]

Studies have shown that retired older adults are more likely to volunteer than their working counterparts. However, whether the transition to retirement is associated with increased volunteering frequency and whether this varies according to material and time resources of participants is unclear. We used four waves of data from the longitudinal Survey of Health, Ageing and Retirement in Europe, collected between 2011–2018 across 19 countries (n = 12,400 person-observations from 6200 individuals over 50). Within-person (or panel fixed-effect) regression analyses revealed that transition to retirement was associated with an increased volunteering frequency over time. This association was stronger among individuals with better health, higher education, improved financial situation and in countries with higher gross domestic product per capita. Overall, transition to retirement tends to open new ways of organizing everyday life and is associated with increased frequency of volunteering. [ABSTRACT FROM AUTHOR]

Background: Premenstrual dysphoric disorder is a depressive disorder affecting 5%–8% of people with menstrual cycles. Despite evidence that facial emotion detection is altered in depressive disorders, with enhanced detection of negative emotions (negativity bias), minimal research exists on premenstrual dysphoric disorder. Objectives: The goal of this study was to investigate the effect of premenstrual dysphoric disorder symptoms and the premenstrual phase on accuracy and intensity at detection of facial emotions. Design: Cross-sectional quasi-experimental design. Method: The Facial Emotion Detection Task was administered to 72 individuals assigned female at birth with no premenstrual dysphoric disorder (n = 30), and provisional PMDD (n = 42), based on a retrospective Diagnostic and Statistical Manual of Mental Disorders—Fifth Edition -based measure of premenstrual dysphoric disorder. Facial emotion detection was examined both irrespective of menstrual cycle phase, and as a function of premenstrual phase (yes, no). The task used neutral-to-emotional facial expression morphs (15 images/morph). Participants indicated the emotion detected for each image within the progressive intensity morph. For all six basic emotions (sad, angry, fearful, happy, disgust, and surprise), two scores were calculated: accuracy of responses and the intensity within the morph at which the correct emotion was first detected (image number). Results: Individuals reporting moderate/severe symptoms of premenstrual dysphoric disorder had more accurate and earlier detection of disgust, regardless of cycle phase. In addition, those with provisional premenstrual dysphoric disorder detected sad emotions earlier. A premenstrual dysphoric disorder group × cycle phase interaction also emerged: individuals reporting premenstrual dysphoric disorder symptoms were more accurate at detecting facial emotions during the premenstrual phase compared to the rest of the cycle, with a large effect size for sad emotions. Conclusion: The findings suggest enhanced facial emotion processing in individuals reporting symptoms of premenstrual dysphoric disorder, particularly for sadness and disgust. However, replication is required with larger samples and prospective designs. This premenstrual dysphoric disorder premenstrual emotion detection advantage suggests an adaptive cognitive mechanism in premenstrual syndrome/premenstrual dysphoric disorder, and challenges stigma surrounding premenstrual experiences. Plain Language Summary: Women with Severe Premenstrual Syndrome or Probable Premenstrual Dysphoric Disorder are Better at Identifying Emotional Expressions on People's Faces, Especially During the Premenstrual Phase Premenstrual dysphoric disorder is a depressive disorder affecting women where they experience emotional and physical symptoms during the premenstrual phase (i.e. the week before one's period). It is a severe form of premenstrual syndrome. Research indicates that depression can affect facial emotion recognition. Accurately recognizing other people's emotions is an important skill that helps us develop social connections and keep ourselves and others safe. Quick recognition of facial emotions allows us to understand and support others, and quickly identify dangerous situations by recognizing other people's emotional responses. The goal of this study was to examine how premenstrual dysphoric disorder symptoms and the premenstrual phase may affect the ability of women to recognize and identify emotions on other people's faces. A total of 72 women (42 with premenstrual dysphoric disorder, 30 without premenstrual dysphoric disorder) completed the Facial Emotion Detection Task. This task measured how accurate and early the women were able to detect happiness, sadness, anger, fear, surprise, and disgust in faces. Women with moderate/severe symptoms of premenstrual dysphoric disorder had more accurate and earlier detection of disgust, regardless of where they were in their menstrual cycle. Women with premenstrual dysphoric disorder detected sad emotions earlier. Furthermore, women with premenstrual dysphoric disorder were more accurate at detecting facial emotions when they were tested in the premenstrual phase, and were especially more accurate in detecting sad emotions. The findings suggest that women with premenstrual dysphoric disorder are better at detecting facial emotions and show a premenstrual dysphoric disorder premenstrual emotion detection advantage. This tendency for women with premenstrual dysphoric disorder to better detect emotions in others, particularly when they are in the premenstrual cycle phase, would have benefits. As one of the first reports of a potentially beneficial effect of premenstrual syndrome for women, the findings may help decrease stigma associated with premenstrual dysphoric disorder and premenstrual syndrome. Further research is needed to replicate and extend these findings. [ABSTRACT FROM AUTHOR]

Background: Minimal research has been done to determine how well European nursing students understand the core principles of academic integrity and how often they deviate from good academic practice. Aim: The aim of this study was to find out what educational needs nursing students have in terms of academic integrity. Research design: A quantitative cross-sectional study in the form of a survey of nursing students was conducted via questionnaire in the fall of 2020. Participants: The sample was composed of 79 students in the BScN and MScN programs at Zürich University of Applied Sciences. Ethical considerations: An application for a non-competence clearance was approved by the Ethics Committee in Zurich (BASEC No. Req-2020-00868). The survey was anonymous, and informed consent was obtained prior to participation. Results: The participants had a high level of confidence in their own knowledge but were in many cases unable to correctly identify clear-cut examples of misconduct and to differentiate them from questionable practices. About 13% of the participants admitted that during their university education they had copied shorter passages from other sources into their own text without marking them as quotes. Conclusions: The study documents extensive knowledge gaps among nursing students regarding both academic misconduct and questionable practices and indicates a need for improved academic integrity training. [ABSTRACT FROM AUTHOR]

Autistic individuals experience higher rates of externalising and internalising symptoms that may vary with environmental factors. However, there is limited research on variation across settings that may highlight common factors with globally generalisable effects. Data were taken from two cohorts: a multinational European sample (n = 764; 453 autistic; 311 non-autistic; 6–30 years), and a South African sample (n = 100 non-autistic; 3–11 years). An exploratory factor analysis aggregated clinical (Verbal Comprehension and Perceptual Index), adaptive traits (Vineland Adaptive Behaviour Scale) and socio-economic variables (parental employment and education, home and family characteristics) in each cohort separately. With regression, we investigated the effect of these factors and autistic traits on internalising and externalising scores (measured with the Strengths and Difficulties Questionnaire). Cohorts showed similar four-factor structures (Person Characteristics, Family System, Parental and Material Resources). The 'Family System' factor captured family size and maternal factors and was associated with lower internalising and externalising symptoms in both cohorts. In the European cohort, high autistic traits reduced this effect; the opposite was found in the South Africa cohort. Our exploratory findings from two separate analyses represent consistent evidence that Family System is associated with internalising and externalising symptoms, with a context-specific impact in persons with high autism traits. Autistic individuals are more likely than non-autistic individuals to experience a mental health condition in their lifetime, and this includes externalising and internalising symptoms. We know very little about how different environments and family conditions impact these symptoms for autistic individuals. Improving our understanding of these relationships is important so that we can identify individuals who may be in greater need of support. In this article, we seek to improve our understanding of how environmental and family conditions impact externalising and internalising symptoms in autistic and non-autistic people. To do this, we conducted analyses with two cohorts in very different settings – in Europe and South Africa – to ensure our findings are globally representative. We used advanced statistical methods to establish environmental and family conditions that were similar to each other, and which could be combined into specific 'factors'. We found that four similar 'factors' could be identified in the two cohorts. These were distinguished by personal characteristics and environmental conditions of individuals, and were named Person Characteristics, Family System, Parental and Material Resources. Interestingly, just 'Family System' was associated with internalising and externalising symptoms, and this was the same in both cohorts. We also found that having high traits of autism impacted this relationship between Family System and mental health conditions with opposite directions in the two settings. These results show that characteristics in the Family System are associated with internalising and externalising symptoms, and autistic persons are particularly impacted, reinforcing the notion that family stressors are important to consider when implementing policy and practice related to improving the mental health of autistic people. [ABSTRACT FROM AUTHOR]

A large body of literature shows the link between inadequate housing conditions and poor physical and mental health. The aim of this paper is to summarize the research on the impact of local housing policies on health inequalities, focusing on the issues of access to housing and fuel poverty as studied in the SOPHIE project. Our case studies in Spain showed that people facing housing insecurity, experienced intense levels of mental distress. We found that access to secure and adequate housing can improve the health of these populations, therefore, public policies that address housing instability and their consequences are urgently needed. Housing conditions related to fuel poverty are associated with poorer health and are unevenly distributed across Europe. We found possible positive effects of façade insulation interventions on cold-related mortality in women living in social housing; but not in men. Policies on housing energy efficiency can reduce the health consequences of fuel poverty, but need to be free to users, target the most vulnerable groups and be adaptable to their needs. [ABSTRACT FROM AUTHOR]

Background: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. Aim: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. Design: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. Setting: European. Participants: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. Results: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. Conclusions: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals. [ABSTRACT FROM AUTHOR]

Blood donors are indispensable for enabling a myriad of medical procedures and treatments. We examined how public trust in the healthcare system and healthcare quality relate to individuals' likelihood of donating blood, using survey data from representative samples of 28 European countries (N = 27,868). Our preregistered analyses revealed that country-level public trust, but not healthcare quality, predicted individual propensity to donate blood. Notably, public trust decreased over time in many countries, while healthcare quality increased. Our results highlight the role of subjective perceptions of the healthcare system, rather than the objective state of healthcare, for blood donation behavior in Europe. [ABSTRACT FROM AUTHOR]

Background: The evolution of the provision of palliative care specialised services is important for planning and evaluation. Aim: To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region – home care teams, hospital support teams and inpatient palliative care services. Design and setting: Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Results: Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005–2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Conclusion: Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population. [ABSTRACT FROM AUTHOR]

Aims: Labour force activity and marriage share some pathways through which they potentially influence health. In this paper, we examine whether marriage and labour force participation interact in the way they influence mortality in the USA and six European countries. Methods: We used data from the US National Health Interview Survey linked to the National Death Index, and national mortality registry data for Austria, England/Wales, Finland, Hungary, Norway and Spain (specifically, the Basque country) during 1999–2007, for men and women aged 30–59 years at baseline. We used Poisson regression to estimate both the additive (relative excess risk due to interaction) and multiplicative interactions between marriage and labour force activity on mortality. Results: Labour force inactivity was associated with higher mortality, but this association was stronger for unmarried, rather than married, individuals. Likewise, being unmarried was associated with higher mortality, but this association was stronger for inactive than for active individuals. To illustrate, among US women out of the labour force, being unmarried was associated with a 3.98 times (95%CI 3.28–4.82) higher risk of dying than being married; whereas the relative risk (RR) was 2.49 (95%CI 2.10–2.94), for women who were active in the labour market. Although this interaction between marriage and labour force activity was only significant for women on a multiplicative scale, there was a significant additive interaction for both men and women. The pattern was similar across all countries. Conclusions: Marriage attenuated the increased mortality risk associated with labour force inactivity; while labour force activity attenuated the mortality risk associated with being unmarried. Our study emphasizes the importance of public health and social policies that improve the health and well-being of unmarried and inactive men and women. [ABSTRACT FROM AUTHOR]

We identify and analyse practices and management regimes around burial and handling of ashes across eight case study towns within six Northern European countries. We analyse management of cemeteries and crematoria gardens, majority practices and provision for minority communities, including various burial types, cremated remains, the re-use of graves, and costs for interments. Comparative data is drawn from analysis of national and local regulations, interviews with stakeholders, and observations at cemeteries and crematoria gardens. The findings show significant variation in national and local regulations and practices for burial and cremation particularly around the re-use of graves, handling of ashes and costs for grave space and cremation. We identify the opportunities and constraints of these variations in terms of accessibility, diversity and equality; and argue for national directions to avoid unequal treatment within nations. Furthermore, we stress the importance of a liberal and inclusive management of European cemeteries and crematoria gardens. [ABSTRACT FROM AUTHOR]

Background: While evidence shows that occupational therapists can play a key role in the care of people with palliative care needs, more knowledge about effective occupational therapy interventions for this group is needed. Aim: To identify, organise and prioritise intervention components considered to be effective within occupational therapy for people with palliative care needs from the perspective of occupational therapy clinicians, managers and researchers. Design: Group Concept Mapping utilising a mixed methods participatory approach. Using a focus prompt, participants brainstormed, sorted, labelled and rated generated statements about effective occupational therapy intervention components. Multidimensional scaling analysis and cluster analysis were conducted. Setting/Participants: Snowball recruitment was used to recruit participants. Participants included occupational therapists worldwide who were able to read and write in English and were working as clinicians, managers and/or researchers with occupational therapy interventions for people with palliative care needs. Results: Seventy-two occupational therapists from 15 countries participated in the study representing Asia (n = 3, 20%), Europe (n = 8, 53%), Oceania (n = 2, 13%) and North America (n = 2, 13%). A total of 117 statements were identified and organised into five clusters: (1) being client-centred, (2) promoting occupational engagement to optimise quality of life, (3) involving the social and relational environment, (4) enabling occupations and (5) facilitating occupational adaptation. Conclusions: Five clusters of core occupational therapy intervention components were considered to be effective when supporting people with palliative care needs. Research should use this knowledge to inform future occupational therapy interventions for this group of people. [ABSTRACT FROM AUTHOR]

Studies examining the application of information technology to the delivery of health-care services often highlight the anticipated benefits. In consequence, the benefits of health-care information technology adoption, often referred to as 'e-health', are widely reported yet there is limited empirical evidence as to how such benefits can be realized. Design and implementation guidelines have been considered from a socio-technical perspective and there is support for the successful application of these principles. There are also some global surveys on the topic, but these often report only statistical data and lack richness of content. This study draws on existing literature to examine whether the principles of health-care information technology adoption are currently applied in practice. The paper presents a timely international analysis of the drivers, critical enablers and successful deployment strategies for e-health from the perspective of leading practitioners. The study considers the adoption of e-health in 15 countries. A qualitative research design was used and semistructured interviews were conducted with 38 thought leaders with expertise in health-care information systems and technology. The study presents a comparative analysis of the lessons learned from implementing, integrating and embedding e-health in practice, and presents a four-phase approach from the perspective of practitioners for the accelerated deployment of e-health systems: (i) develop a strategic approach, (ii) engage the workforce, (iii) capitalize on information technology and (iv) partner with the patient/citizen. [ABSTRACT FROM AUTHOR]

Objective:Measuring quality of care through performance indicators and subsequently using these to compare, learn, and improve (benchmarking) has become a central component of health care policy. This paper aims to identify the main themes of health services research in this area and focuses on opportunities for improving the evidence underpinning performance indicators. Methods: A literature survey was carried out to identify research activities and main research themes in Europe in the years 2000-09. Identified literature was categorized into sub-topics and for each topic the main methodological issues were identified and discussed. Experts validated the findings and explored the potential for related further European research. Results: The distribution of research on performance and benchmarking across EU member states varies in time, scope and settings with a large amount of studies focusing on hospitals. Eight specific fields of research were identified (research on concepts and performance frameworks; performance indicators and benchmarking using mortality data; performance indicators and benchmarking related to cancer care; performance indicators and benchmarking on care delivered in hospitals; patient safety indicators; performance indicators in primary care; patient experience; research on the practice of benchmarking and performance improvement). Expert discussions confirmed that research on performance indicators and benchmarking should focus on the development of indicators, as well as their use. The research should involve the potential users and incorporate scientific approaches from biomedicine and epidemiology as well as the social sciences. Further progress is hampered by data availability. Issues which need to be addressed include the use of unique patient identifiers (UPIs) to facilitate linkages between separate databases; standardized measurement of the experiences of patients and others; and deepening collaboration between Eurostat, the World Health Organization (WHO), and the Organization for Economic Co-operation and Development (OECD) to facilitate the availability of internationally comparable performance information. Conclusions: This study suggests a number of themes for future research. These include testing and improving: the validity and reliability of performance indicators, especially related to avoidable mortality and other outcome indicators; the effectiveness and efficiency of embedding performance indicators in the various governance, monitoring and management models, and their effect on health systems, services and professionals; and the effectiveness and efficiency of linking performance indicators to other national and international strategies and policies such as accreditation and certification, practice guidelines, audits, quality systems, patient safety strategies, national standards on volume and/or quality, public reporting, pay-for-performance and patient/consumer involvement. The field would benefit from strengthening the clearinghouse function for research findings, training of researchers and appropriate scientific publication media. Results should be systematically shared with policy-makers and managers, and networking stimulated between the growing number of regional and national institutes involved in quality measurement and reporting. [ABSTRACT FROM AUTHOR]

Objectives: Examine trends in limitations among young (15–39), middle-aged (40–64) and older age-groups (>=65) and their socioeconomic differences. Methods: Population-based European Social Survey data (N = 396,853) were used, covering 30 mostly European countries and spanning the time-period 2002–2018. Limitations were measured using a global activity limitations indicator. Results: Age-differential trends in limitations were found. Activity limitations generally decreased in older adults, whereas trends varied among younger and middle-aged participants, with decreasing limitations in some countries but increasing limitations in others. These age-differential trends were replicated across limitation severity and socioeconomic groups; however, stronger limitation increases occurred regarding less-severe limitations. Discussion: Functional health has improved in older adults. Contrarily, the increasing limitations in younger and middle-aged individuals seem concerning, which were mostly observed in Western and Northern European countries. Given its public health importance, future studies should investigate the reasons for this declining functional health in the young and middle-aged. [ABSTRACT FROM AUTHOR]

Objectives: To identify social network profiles using Latent Profile Analysis (LPA), to study the relationships of these profiles with health markers, mental health, quality of life, and cognitive functioning, and to compare profiles across European regions. Methods: 27,272 participants from the Wave 8 of the SHARE project, aged 65 or older (M = 74.95, SD = 7.17) from Europe. Statistical analyses included LPAs followed by MANOVAs to compare the profiles and the health markers. Results: Five profiles were identified: family, friends, spouse, diverse, and others. A no network group was also added. The prevalence of the specific profiles differed across European regions. Individuals with no network and those categorized into the others profile presented the worst health outcomes. Discussion: The "friends" network is more protective toward cognitive functioning and physical health and the "spouse" and "family" ones are more protective toward mental health. The variability according to European regions is discussed. [ABSTRACT FROM AUTHOR]

Precarious employment as a determinant of health remains on the rise in Europe, in contrast to the European Pillar of Social Rights. Research in epidemiology, public health, and occupational health research has debated the health impacts of precarious employment. A number of studies have concluded that precarious employment contributes to poor health. More recent research has focused on the contextual influences of the association between precarious employment and health. Accordingly, we argue that the welfare state and the specific institutional arrangements on the national level determine and mediate the extent of the association between precarious employment and health. This research synthesis: (a) debates explanations for the rise of precarious employment in Europe, (b) illustrates how precarious employment has risen in Europe since the 1980s, (c) indicates empirical findings of the association between precarious employment and health in Europe, (d) discusses how research explains between-country differences of the association between precarious employment and health, and (e) presents empirical findings on the contextual determinants of the association between precarious employment and health in Europe. [ABSTRACT FROM AUTHOR]

Background Hospital waiting times are established instruments to ration healthcare when resources are scarce. However, higher educated patients may be better able to influence access to, and exit from, hospital care when waiting times are long. Methods Based on a representative sample of 11 European countries from the Survey of Health, Ageing and Retirement in Europe (SHARE) collected in 2004/2005, this paper investigates whether the relationship between individual educational background and hospital utilization depends on the prevalent hospital waiting times in a country. Logistic regression with interaction effects between individual education and average waiting times per country are conducted. Results Primary education is significantly associated with a lower probability of visiting a hospital overnight (OR = 0.88) compared to secondary and tertiary education. Patients in countries with long waiting times had shorter stays (OR = 0.92), and the significant interaction effect indicates that lower educated patients have longer hospital stays than higher educated patients in countries where waiting times tend to be long (OR = 1.06). Conclusions While the findings imply that educational differences exist with regard to hospital care, future research should investigate potential underlying mechanisms, i.e. patients' perceived access barriers and the perceived quality of hospital treatment. [ABSTRACT FROM AUTHOR]

Objective: For cost-effectiveness comparison of child vision and hearing screening programmes, methods and data should be available. We assessed the current state of data collection and its availability in Europe. Methods: The EUSCREEN Questionnaire, conducted in 2017–2018, assessed paediatric vision and hearing screening programmes in 45 countries in Europe. For the current study, its items on data collection, monitoring and evaluation, and six of eleven items essential for cost-effectiveness analysis: prevalence, sensitivity, specificity, coverage, attendance and loss to follow-up, were reappraised with an additional questionnaire. Results: The practice of data collection in vision screening was reported in 36% (N = 42) of countries and in hearing screening in 81% (N = 43); collected data were published in 12% and 35%, respectively. Procedures for quality assurance in vision screening were reported in 19% and in hearing screening in 26%, research of screening effectiveness in 43% and 47%, whereas cost-effectiveness analysis was performed in 12% for both. Data on prevalence of amblyopia were reported in 40% and of hearing loss in 77%, on sensitivity of screening tests in 17% and 14%, on their specificity in 19% and 21%, on coverage of screening in 40% and 84%, on attendance in 21% and 37%, and on loss to follow-up in 12% and 40%, respectively. Conclusions: Data collection is insufficient in hearing screening and even more so in vision screening: data essential for cost-effectiveness comparison could not be reported from most countries. When collection takes place, this is mostly at a local level for quality assurance or accountability, and data are often not accessible. The resulting inability to compare cost-effectiveness among screening programmes perpetuates their diversity and inefficiency. [ABSTRACT FROM AUTHOR]

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established. [ABSTRACT FROM AUTHOR]

Aims: This study aimed to compare the self-rated health status of the Roma and of the general population by gender and educational level in six Central and Eastern European countries. Methods: We analysed the United Nations Development Program Regional Roma Survey and EUROSTAT's European Union Statistics on Income and Living Conditions surveys from 2011 for Bulgaria, Croatia, Czechia, Hungary, Romania and Slovakia. Using logistic regression, predicted probabilities of good or very good self-rated health were estimated for the Roma (n =11,401), Roma neighbours (n =5857) and the general population (n =101,579) stratified by gender, and adjusted by age, country and educational level. Results: There was a distinctive social gradient in self-rated health between the groups among both men and women, and a gap between primary versus secondary or tertiary education among all three groups, but Roma (men) and their neighbours with secondary or higher education had significantly worse predicted self-rated health compared to the general population with similar qualifications. Conclusions: These results strongly suggest that ethnicity and gender should be considered as fundamental causes that explain structural health inequalities. Consequently, future research and policy initiatives to reduce health inequities should acknowledge the impact of ethnic minorities and how these fundamental causes extend the general population's social gradient in health. Study designs enabling direct comparisons between ethnic groups and the general population should be applied. More and better data about ethnic minorities are needed to document and monitor existing health inequalities. [ABSTRACT FROM AUTHOR]

Using data from a cross-national survey conducted on representative samples of populations from 10 European countries (n = 10,766), the present study is the first one to empirically measure the validity of Christie's influential ideal victim model. We use a range of scenarios built around common types of anti-LGBT violence to verify the extent to which the public's empathy for victims is contingent on the victim's identity and the circumstances of the crime. The results provide strong evidence that, when applied to this group of victims, the rules of the ideal victim work, adequately moderating the public's emotional reactions. We found that all victims receive relatively high levels of empathy, but the further the victim is from the ideal, the less support they can count on. Thus, even though no victim is "rejected," a clear hierarchy of victimization emerges. As a group, LGBT people suffer from an empathy deficit, but there also are considerable variations within this group, with a lesbian attacked by extremists receiving the most, and a drunk transgender person receiving the least empathy from the public. The study contributes to the development of theory by embedding the ideal victim model in a broader sociological paradigm of dramaturgical analysis. Since our research shows that the victim's LGBT status decreases the levels of empathy (being seen as a type of stigma), we call for more attention to be paid to the actor's identity in Goffman's framework. Implications for practice and further research are offered. [ABSTRACT FROM AUTHOR]

The impact of grandparenting on the grandparents' health has been relatively under-studied. This study examined country differences in the effects of grandchild care provision on the grandparents' depression in Italy, Spain, China, Denmark and Sweden using the longitudinal Harmonised CHARLS and SHARE data collected between 2010–2015. Controlling for the grandparents' depression in 2011, grandmothers providing non-intensive grandparental care in Sweden in 2013 reported lower depression score in 2015 compared to those who did not provide any care in 2013. Chinese grandfathers, Italian and Swedish grandmothers who provided intensive grandchild care reported lower depression score compared to their counterparts who did not provide any grandchild care. This study indicates that the Structural Ambivalence Theory can only partially explain the findings, suggesting further theoretical development in this area. Future research can focus on identifying the causal pathways between grandparenting and wellbeing, and the implications of such pathways for older persons' wellbeing worldwide. [ABSTRACT FROM AUTHOR]

As future employers, nurse managers are in a key position to assess the correspondence between the competence of graduating nursing students and work life demands. The aim of the present study was to assess the competence of graduating nursing students from the perspective of managers, and analyze the factors linked to it. Among European managers in six countries, a cross-sectional survey design with a convenience sample was applied. Data were collected using the Nurse Competence Scale. The study was reported using the STROBE guidelines. Managers (n =538, 65.8%) assessed the level of competence of graduating nursing students as good, but there were statistically significant differences between countries. In a multivariable analysis, managers who had a Doctoral/Master’s degree and were dissatisfied with the nursing program in their country assessed the level of competence as lower. Overall, graduating nursing students seem to meet the competence demands of current work life rather well. Further research is needed to confirm the connection between the managers’ competence assessment and their individual background factors. [ABSTRACT FROM AUTHOR]

Culture change is common in healthcare organisations worldwide today, and change agents are key persons in the process of change. It is therefore of vital importance to deepen the knowledge about change agents’ experiences. The aim of the study was to illuminate meanings of being a change agent to improve home care services. Ten change agents were interviewed individually using open-ended questions. The interviews were analysed with phenomenological hermeneutics. The design of the study followed the COREQ guidelines. Three themes were revealed in the analysis: ‘Being confirmed by the opportunity to make quality improvements’; ‘Pushing oneself to transfer the message’; and ‘Being strengthened by achievements but wishing for better conditions’. In order to prepare co-workers, change agents need training before their mission begins and during the change process. [ABSTRACT FROM AUTHOR]

Introduction: Post-stroke fatigue (PSF) is common and debilitating. However, while its effective management is a priority for clinicians and stroke survivors, there remains little evidence to provide guidance or underpin practice. Our aim, therefore, was to gain insights into the experiences of clinicians who routinely manage patients with fatigue. Method: Qualitative interview study. The target was to recruit a purposeful sample of approximately 20 participants with expertise in managing PSF and fatigue arising from other conditions. Maximum variation sampling was used to ensure a balance of participants across different settings. Data were analysed using a framework approach, iteratively developed and refined by including emergent themes. Results: We recruited 20 participants: nine occupational therapists (OTs), five physiotherapists, three nurses and three psychologists, which included three 'fatigue experts' from Europe and Australia. Analysis generated core themes around management and strategies used; these were similar regardless of professional background, clinical or geographical setting or condition treated. OTs felt a particular responsibility for fatigue management, although multidisciplinary teamwork was stressed by all. Conclusion: There are clear similarities in clinicians' experiences of managing PSF and fatigue across different conditions and also across professional groups. Clinicians rely predominantly on their own clinical knowledge for guidance. [ABSTRACT FROM AUTHOR]

Whether dietary fiber intake could reduce the risk of breast cancer (BC) is still controversial. The articles related to breast cancer and dietary fiber were retrieved through PubMed and Web of Science database. Summary relative risk (RR) and attributable risk percentage (ARP) for dietary fiber intake on the development of breast cancer were calculated. Dose-response meta-analysis modeled the relationship between dietary fiber intake and breast cancer risk. A total of 10 studies were included in this study. Meta-analysis showed that dietary fiber intake was negatively associated with breast cancer (RR = 0.83). In dose-response analysis, the risk of breast cancer showed a statistically significant linear trend with increasing dietary fiber dose: when adding 10 g per day, the risk decreased by 4.7% (RR = 0.95). The ARP results demonstrated that the breast cancer dietary fiber–attributed percentage was 33.33% in Asia, which was higher than 16.28% in North America and 9.89% in Europe. In conclusion, dietary fiber intake may have a positive effect on reducing breast cancer risk, especially in high doses. [ABSTRACT FROM AUTHOR]

Objectives To assess the impact of population-based mammographic screening on breast cancer mortality in Europe, considering different methodologies and limitations of the data. Methods We conducted a systematic literature review of European trend studies (n = 17), incidence-based mortality (IBM) studies (n = 20) and case-control (CC) studies (n = 8). Estimates of the reduction in breast cancer mortality for women invited versus not invited and/or for women screened versus not screened were obtained. The results of IBM studies and CC studies were each pooled using a random effects meta-analysis. Results Twelve of the 17 trend studies quantified the impact of population-based screening on breast cancer mortality. The estimated breast cancer mortality reductions ranged from 1% to 9% per year in studies reporting an annual percentage change, and from 28% to 36% in those comparing post- and prescreening periods. In the IBM studies, the pooled mortality reduction was 25% (relative risk [RR] 0.75, 95% confidence interval [CI] 0.69-0.81) among invited women and 38% (RR 0.62, 95% CI 0.56-0.69) among those actually screened. The corresponding pooled estimates from the CC studies were 31% (odds ratio [OR] 0.69, 95% CI 0.57-0.83), and 48% (OR 0.52, 95% CI 0.42-0.65) adjusted for self-selection. Conclusions Valid observational designs are those where sufficient longitudinal individual data are available, directly linking a woman's screening history to her cause of death. From such studies, the best 'European' estimate of breast cancer mortality reduction is 25-31% for women invited for screening, and 38-48% for women actually screened. Much of the current controversy on breast cancer screening is due to the use of inappropriate methodological approaches that are unable to capture the true effect of mammographic screening. [ABSTRACT FROM AUTHOR]

Brought to fame by a 1994 World Bank report, the idea of pension pillarization has become part of the orthodoxy of pension reform. Yet scholars have neglected both the national origins and the pre-1994 diffusion of the ‘three-pillar doctrine’. This article presents a critical history of the transnational diffusion process that led to the adoption of this concept at the World Bank. My analysis retrieves the Swiss roots of the doctrine during the late 1960s, as well as its gradual adoption and mainstreaming during the 1970s and early 1980s by a transnational epistemic community of life insurers and pension consultants. By 1990, the doctrine was widely used without reference to its national origins: a Swiss trademark had become a generic reform idea that framed controversies on the future shape of old-age provision. [ABSTRACT FROM PUBLISHER]

The safeguards and measures to prevent child trafficking mentioned in the 1993 Hague Convention on Intercountry Adoption have proven insufficient in curbing the so-called irregular adoptions. An analysis of how Spanish central authorities and intermediary agencies managed the flow of adoption dossiers between 2003 and 2013 presents their inability to react swiftly to the imbalance between adoption demand and supply. The 2015 reforms in the Spanish law introduced measures to bring demand in line with real needs. However, imaginaries that portray adopters and children from the Global South as victims of meaningless bureaucracy continue to hold true even today. [ABSTRACT FROM AUTHOR]

Background: Moral courage is defined as courage to act according to one's own ethical values and principles even at the risk of negative consequences for the individual. In a complex nursing practice, ethical considerations are integral. Moral courage is needed throughout nurses' career. Aim: To analyse graduating nursing students' moral courage and the factors associated with it in six European countries. Research design: A cross-sectional design, using a structured questionnaire, as part of a larger international ProCompNurse study. In the questionnaire, moral courage was assessed with a single question (visual analogue scale 0–100), the questionnaire also covered several background variables. Participants and research context: The sample comprised graduating nursing students (n = 1796) from all participating countries. To get a comprehensive view about graduating nursing students' moral courage, the views of nurse managers (n = 538) and patients (n = 1327) from the same units in which the graduating nursing students practised were also explored, with parallel questionnaires. Ethical considerations: Ethical approvals and research permissions were obtained according to national standards in every country and all participants gave their informed consent. Results: The mean of graduating nursing students' self-assessed moral courage was 77.8 (standard deviation 17.0; on a 0–100 scale), with statistically significant differences between countries. Higher moral courage was associated with many factors, especially the level of professional competence. The managers assessed the graduating nursing students' moral courage lower (66.5; standard deviation 18.4) and the patients slightly higher (80.6; standard deviation 19.4) than the graduating nursing students themselves. Discussion and conclusions: In all countries, the graduating nursing students' moral courage was assessed as rather high, with differences between countries and populations. These differences and associations between moral courage and ethics education require further research. [ABSTRACT FROM AUTHOR]

In this work, attention is paid to 2 explanatory factors of successful aging. The first is material deprivation. There is growing evidence that poverty is associated with the onset of physical and mental disorders and, broadly, with aspects such as life satisfaction and happiness. The second factor is social deprivation. Social exclusion affects health due to lack of emotional and concrete support; moreover, participation in social activities among older people is associated with greater longevity and a lower risk of disability. The study describes the effect of material and social deprivation on depression (measured through the EURO-D scale) and quality of life (through CASP-12 scale), for individuals aged 50 and older in 14 European countries. Data is derived from Wave 5 of the SHARE project. To estimate the effect of material and social deprivation on outcomes and to determine whether it is moderated by the country in which people live, we apply 2 multi-group path models, respectively, for people aged 65 or younger and for those aged 66 years or older. Findings indicate that higher material and social deprivation is associated with greater levels of stress and worse quality of life. The effect of social deprivation would be stronger than that of material deprivation, and this result seems to be valid in all countries considered, although their intensity varies significantly between them. [ABSTRACT FROM AUTHOR]

Research shows how racism can negatively affect access to health care and treatment. However, limited theoretical research exists on conceptualizing racism in health care. In this article, we use structural violence as a theoretical tool to understand how racism as an institutionalized social structure is enacted in subtle ways and how the "violence" built into forms of social organization is rendered invisible through repetition and routinization. We draw on interviews with health care users from three European countries, namely, Sweden, Germany, and Portugal to demonstrate how two interrelated processes of unequal access to resources and inequalities in power can lead to the silencing of suffering and erosion of dignity, respectively. The strength of this article lies in illuminating the mechanisms of subtle racism that damages individuals and leads to loss of trust in health care. It is imperative to address these issues to ensure a responsive and equal health care for all users. [ABSTRACT FROM AUTHOR]

The economic, social, and health costs of mental distress are increasingly burdening individuals and societies in Europe. Yet, overmedicalization of mild symptoms is also well documented. This accumulates in more pressures and demands on health care systems. In this article, I explore how the process of help seeking in mental distress might be shaped by health system design and functioning in one of the South European societies—Spain. Employing Bourdieu's theoretical lens, in-depth interviews with health care providers and users of services are analyzed. I reveal how the logic of the mental health care field, which is reinforced by the market, the state, and the media, may result in medicalization of mild distress while severe mental illness remains undertreated. I also show how mental help-seeking practices could gradually influence the functioning of the treatment system. Nevertheless, points of resistance to medicalization can also be identified. [ABSTRACT FROM AUTHOR]

In this study, we aim to contribute to the field of critical health communication research by examining how notions of mental health and illness are discursively constructed in newspapers and magazines in six European countries and how these constructions relate to specific understandings of mental health literacy. Using the method of cluster-agon analysis, we identified four terminological clusters in our data, in which mental health/illness is conceptualized as "dangerous," "a matter of lifestyle," "a unique story and experience," and "socially situated." We furthermore found that we cannot unambiguously assume that biopsychiatric discourses or discourses aimed at empathy and understanding are either exclusively stigmatizing or exclusively empowering and normalizing. We consequently call for a critical conception of mental health literacy arguing that all mental health news socializes its audience in specific understandings of and attitudes toward mental health (knowledge) and that discourses on mental health/illness can work differently in varying contexts. [ABSTRACT FROM AUTHOR]

New technology has made pornography increasingly accessible to young people, and a growing evidence base has identified a relationship between viewing pornography and violent or abusive behavior in young men. This article reports findings from a large survey of 4,564 young people aged 14 to 17 in five European countries which illuminate the relationship between regular viewing of online pornography, sexual coercion and abuse and the sending and receiving of sexual images and messages, known as “sexting.” In addition to the survey, which was completed in schools, 91 interviews were undertaken with young people who had direct experience of interpersonal violence and abuse in their own relationships. Rates for regularly viewing online pornography were very much higher among boys and most had chosen to watch pornography. Boys’ perpetration of sexual coercion and abuse was significantly associated with regular viewing of online pornography. Viewing online pornography was also associated with a significantly increased probability of having sent sexual images/messages for boys in nearly all countries. In addition, boys who regularly watched online pornography were significantly more likely to hold negative gender attitudes. The qualitative interviews illustrated that, although sexting is normalized and perceived positively by most young people, it has the potential to reproduce sexist features of pornography such as control and humiliation. Sex and relationships education should aim to promote a critical understanding of pornography among young people that recognizes its abusive and gendered values. [ABSTRACT FROM AUTHOR]

This article outlines a novel application of meta-ethnographic synthesis in the analysis of multiple ethnographic case studies of youth activism emanating from a large transnational European research project. Although meta-ethnography is used increasingly as an alternative to systematic review for the synthesis of published qualitative studies, it is not widely applied to the synthesis of primary data. This article suggests such a use is not precluded epistemologically and potentially addresses a growing need as ethnography itself becomes increasingly ‘multi-sited’. The article outlines the practical process of adapting meta-ethnography to primary data analysis drawing on the synthesis of 44 ethnographic cases of youth activism and provides a worked example of the translation of cases and resulting ‘line of argument’. It discusses the challenges and limitations of the approach in particular the danger that, in extracting the general from the specific, the key quality of qualitative data – individual differentiation – is diminished. [ABSTRACT FROM AUTHOR]

Background: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. Aims: To explore hospital volunteers’ end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. Design: Qualitative focus groups. Setting/participants: Volunteers from a large teaching hospital were purposively sampled. Results: Five focus groups were conducted with 25 hospital volunteers (aged 19–80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to ‘refresh’ training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. Conclusion: Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals. [ABSTRACT FROM AUTHOR]

Several studies have recognized the health disadvantage of residents in socioeconomically deprived neighborhoods, independent of the influence of individual socioeconomic conditions. The effect of neighborhood socioeconomic deprivation on general mortality has appeared heterogeneous among the cities analyzed: the underlying mechanisms have been less empirically explored, and explanations for this heterogeneous health effect remain unclear. The present study aimed to: (1) analyze the distribution of socioeconomically disadvantaged persons in neighborhoods of 4 European cities--Turin, Barcelona, Stockholm and Helsinki--trying to measure segregation of residents according to their socioeconomic conditions. Two measuring approaches were used, respectively, through dissimilarity index and clustering estimated from Bayesian models. (2) Analyze the distribution of mortality in the above mentioned cities, trying to disentangle the independent effects of both neighborhood socioeconomic deprivation and neighborhood segregation of residents according to their socioeconomic conditions, using multilevel models. A significantly higher risk of death was observed among residents in more deprived neighborhoods in all 4 cities considered, slightly heterogeneous across them. Poverty segregation appeared to be slightly associated with increasing mortality in Turin and, among females and only according to dissimilarity, in Barcelona. Few studies have explored the health effects of social clustering, and results could inform urban policy design with regard to social mix. [ABSTRACT FROM AUTHOR]

Assurance of transcript accuracy and quality in interview-based qualitative research is foundational for data accuracy and study validity. Based on our experience in a cross-cultural ethnographic study of women’s pelvic organ prolapse, we provide practical guidance to set up step-by-step interview transcription and translation protocols for team-based research on sensitive topics. Beginning with team decisions about level of detail in transcription, completeness, and accuracy, we operationalize the process of securing vendors to deliver the required quality of transcription and translation. We also share rubrics for assessing transcript quality and the team protocol for managing transcripts (assuring consistency of format, insertion of metadata, anonymization, and file labeling conventions) and procuring an acceptable initial translation of Spanish-language interviews. Accurate, complete, and systematically constructed transcripts in both source and target languages respond to the call for more transparency and reproducibility of scientific methods. [ABSTRACT FROM AUTHOR]

Although in vitro fertilization (IVF) has offered hope to those struggling with infertility, it has also had some unintended consequences, including the fate of embryos that may be “surplus” to requirement following IVF treatment. The number of embryos in storage across the world is high, creating a dilemma for patients who need to make disposal decisions, as well as presenting an administrative and practical dilemma for clinics. Research has suggested that patients’ views of the status of their embryo/s may affect their disposal decisions, and yet the nature of the links between views of the embryo and decisions to either donate or discard remain unclear. In this article, we engage in a discursive analysis of literature on disposal decisions. We discuss the range of ways in which embryos may be constructed, and demonstrate how these discourses make available or constrain particular action possibilities, and offer particular subject positions for patients. The analysis highlights the complexity of the relationship between embryo status and decision making, and may assist clinicians in supporting and guiding patients’ decisions. [ABSTRACT FROM AUTHOR]

Background: To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed. Aim: To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries. Design: This is a cross-sectional study using death certificate data. Setting/participants: All adults (≽18 years) who died in 2008 in Belgium, Czech Republic, France, Hungary, Italy, Spain (Andalusia, 2010), Sweden, Canada, the United States (2007), Korea, Mexico, and New Zealand (N = 4,908,114). Underlying causes of death were used to apply three estimation methods developed by Rosenwax et al., the French National Observatory on End-of-Life Care, and Murtagh et al., respectively. Results: The proportion of individuals who died from diseases that indicate palliative care needs at the end of life ranged from 38% to 74%. We found important cross-country variation: the population potentially in need of palliative care was lower in Mexico (24%-58%) than in the United States (41%-76%) and varied from 31%-83% in Hungary to 42%-79% in Spain. Irrespective of the estimation methods, female sex and higher age were independently associated with the likelihood of being in need of palliative care near the end of life. Home and nursing home were the two places of deaths with the highest prevalence of palliative care needs. Conclusion: These estimations of the size of the population potentially in need of palliative care provide robust indications of the challenge countries are facing if they want to seriously address palliative care needs at the population level. [ABSTRACT FROM AUTHOR]

How do public opinion signals affect political representatives' opinion formation? To date, we have only limited knowledge about this essential representative process. In this article, we theorize and examine the signaling strength of one type of societal signal: protest. We do so by means of an innovative experiment conducted among Belgian national and regional politicians. Elected officials were exposed to manipulated television news items covering a protest demonstration. Following Tilly's previously untested WUNC claim, four features of the event were manipulated: the demonstrators' worthiness, unity, numerical strength, and commitment. We argue that these protest features present elected officials with useful cues about what (a segment of) the public wants. We find that these cues affect elected officials' beliefs. The salience they attach to the protest issue, the position they take, and their intended actions all change as a consequence of exposure. The size of a protest event (numbers) and whether the protesters agree among themselves (unity) are the most persuasive protest factors. The effects of the protest signals come on top of strong receiver effects. We find no evidence that elected officials' predispositions moderate the effects of the protest features. [ABSTRACT FROM AUTHOR]

Background: Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in palliative care research and health technology assessment requires development. Stakeholder involvement adds value throughout research (from prioritising topics to disseminating findings). Philosophies and understandings about the best ways to involve stakeholders in research differ internationally. Stakeholder involvement took place in seven countries (England, Germany, Italy, Lithuania, the Netherlands, Norway and Poland). Findings informed a project that developed concepts and methods for health technology assessment and applied these to evaluate models of palliative care service delivery. Aims: To report on stakeholder involvement in the INTEGRATE-HTA project and how issues identified informed project development. Design: Using stakeholder consultation or a qualitative research design, as appropriate locally, stakeholders in seven countries acted as 'advisors' to aid researchers' decision making. Thematic analysis was used to identify key issues across countries. Setting/participants: A total of 132 stakeholders (82 professionals and 50 'lay' people) aged ≥18 participated in individual face-to-face or telephone interviews, consultation meetings or focus groups. Results: Different stakeholder involvement methods were used successfully to identify key issues in palliative care. A total of 23 issues common to three or more countries informed decisions about the intervention and comparator of interest, sub questions and specific assessments within the health technology assessment. Conclusion: Stakeholders, including patients and families undergoing palliative care, can inform project decision making using various involvement methods according to the local context. Researchers should consider local understandings about stakeholder involvement as views of appropriate and feasible methods vary. Methods for stakeholder involvement, especially consultation, need further development. [ABSTRACT FROM AUTHOR]