Search

Objectives Death literacy is a recent conceptualization representing both individual and community competence, for example, a set of knowledge and skills for engaging in end-of-life-related situations. Little is yet known about which factors are associated with death literacy. A cross-sectional survey using the Swedish version of the Death Literacy Index, the DLI-S, was therefore conducted to explore associations between death literacy and sociodemographic, health, and experience variables. Methods A quota sample of 503 adults (mean age 49.95 ± 17.92), recruited from an online Swedish survey panel, completed a survey comprising the DLI-S and background questions. Results A hierarchical regression model with 3 blocks explained 40.5% of the variance in death literacy, F(22, 477) = 14.75. The sociodemographic factors age, gender, education, widowhood, and religious/spiritual belief accounted for 13.7% of the variance. Adding professional care factors contributed to an additional 15.8% of variance, with working in health care being significantly associated with death literacy. Including experiential factors explained another 11.0% of the variance, of which experiences of caring for and supporting dying and grieving people, both in a work, volunteer, or personal context, were positively associated with death literacy. Significance of results This study contributes a tentative explanatory model of the influence of different factors on death literacy, outlining both direct and indirect associations. Our findings also support the hypothesized experiential basis for death literacy development in the Swedish context. The moderate degree of overall variance explained suggests there may be additional factors to consider to better understand the death literacy construct and how its development may be supported.

Conversations about values for the end-of-life (EoL) between residents, relatives, and staff may allow EoL preparation and enable value-concordant care, but remain rare in residential care home (RCH) practice. In this article, longitudinal qualitative analysis was used to explore changes in staff discussions about EoL conversations throughout workshop series based on reflection and knowledge exchange to promote EoL communication in RCHs. We identified three overall continuums of change: EoL conversations became perceived as more feasible and valuable; conceptualizations of quality EoL care shifted from being generalizable to acknowledging individual variation; and staff’s role in facilitating EoL communication as a prerequisite for care decision-making was emphasized. Two mechanisms influenced changes: cognitively and emotionally approaching one’s own mortality and shifting perspectives of EoL care. This study adds nuance and details about changes in staff reasoning, and the mechanisms that underlie them, which are important aspects to consider in future EoL competence-building initiatives.

In this article, we explore the perspectives of 13–15-year-olds living in Sweden about the first wave of the Covid-19 pandemic, through inductive analysis of 187 of their drawings. Through reconstructive serial picture analysis, three types of meaning were derived: (1) A new normal in dystopian scenery points to the disruption of daily life and development of new praxis and meaning in a context of threat and restriction; (2) Disrupted relationships refers to these adolescents’ self-portrayal as solitary, without adult guidance or friends prominent; and (3) Negative emotions and compliant behaviors addresses a range of negative emotions and expressions of loss with few proactive strategies illustrated. General existential distress appears in these drawings, seemingly compounded by both developmental stage and other factors in addition to the pandemic context. Drawings suggest a restricted repertoire of ways of dealing with challenges confronting these adolescents, who seemed to feel left to their own resources.

Intoduction Research with Indigenous peoples internationally indicates the importance of socio-cultural contexts for end-of-life (EoL) preferences. However, knowledge about values and preferences for future EoL care among the Indigenous Sámi is limited. Aim We investigated if and how a Swedish adaptation of the English-language GoWish cards, DöBra cards, supports reflection and discussion of values and preferences for future EoL care among the Sámi. Methods This qualitative study is based on interviews with 31 self-defined Sámi adults who used DöBra cards at four events targeting the Sámi population, between August 2019 and February 2020. Using directed content analysis, we examined aspects of interviews addressing Sámi-specific and Sámi-relevant motivations for choices. Data about individuals’ card rankings were collated and compiled on group level to examine variation in card choices. Findings All 37 pre-formulated card statements were ranked as a top 10 priority by at least one person. The cards most frequently ranked in the top 10 were a wild card used to formulate an individual preference and thus not representing the same statement, and the pre-formulated card ‘to have those I am close to around me’. Reactions to interviews varied, with some participants commenting on the taboo-laden nature of discussing EoL issues, although many commented positively about EoL conversations in general, and the benefit of using the DöBra cards in particular. We categorised reasoning about Sámi-specific and Sámi-relevant values and preferences under the themes: Attributes of contemporary Sámi culture, Spirituality, Setting for death, Maintaining identity, Preferences related to death, Dying and EoL care and After death. Conclusions The DöBra cards were found to be easy-to-use, understandable and a flexible tool for initiating and supporting conversations about EoL values and preferences. The open formulations of cards, with wild cards, enable discussions about individual values and preferences, with potential to reflect life as a Sámi in Sweden. Validerad;2022;Nivå 2;2022-05-24 (joosat)

Background: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. Design, setting, participants: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) ( n = 50), Sweden ( n = 129) and the UK ( n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. Results: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%–90%) compared to Belgian (31%–71%) and Swedish services (19%–38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services’ dependency on charitable donations was strongly associated with increased engagement with the general public. Conclusion: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities.

Despite growing interest in Indigenous health, the lack of end-of-life (EOL) research about the Sámi people led us to explore experience-based knowledge about EoL issues among the Sámi. We aim here to describe Sámi death systems and the extent to which Kastenbaum’s conceptualisation of death systems is appropriate to Sámi culture. Transcribed conversational interviews with 15 individuals, chosen for their varied experiences with EoL issues among Sámi, were first inductively analysed. Kastenbaum’s model of death systems, with functions along a time trajectory from prevention to social consolidation after death, and the components of people, times, places, and symbols/objects, was applied thereafter in an effort to understand the data. The model provides a framework for understanding aspects of the death system that were Sámi-specific, Sámi-relevant as well as what has changed over time. Whereas Kastenbaum differentiated among the components of the death system, our analysis indicated these were often so interrelated as to be nearly inseparable among the Sámi. Seasonal changes and relationships to nature instead of calendar time dominated death systems, linking people, places and times. The extended family’s role in enculturation across generations and EoL support was salient. Numerous markers of Sámi culture, both death-specific and those recruited into the death system, strengthened community identity in the EoL.

Sweden has no systematic advance care planning (ACP), nor legal recognition of end-of-life proxies. We describe our experiences and reflections from a participatory action research process, aiming at developing and initially using a conversation-based, structured ACP approach among community-dwelling, older adults in Sweden. Eco-mapping and DoBra cards were used with 65 people to catalyze discussions on preferences for the end-of-life. We found great individual variation in both Eco-map depictions of social networks and prioritization of the 37 DoBra card items. The DoBra cards were concluded to be a viable tool for stimulating person-centered conversations on preferences for future end-of-life care.

A health promotion approach to end-of-life (EoL) care is gaining traction internationally. However, there is a lack of evaluations of the impact of this approach, particularly regarding community-based initiatives. Conceptualizations of impact in participatory action research (PAR) may contribute to understanding ways in which impact can be investigated in community-based health promotion approaches to EoL issues. We aim to investigate impact and the process of impact development in our community-based PAR project, Studio DöBra, a Swedish health promotion initiative to engage communities in EoL issues.We do this through a qualitative framework analysis expanding on BanksWe present a model of impact development consisting of impact on individual and group development, action-oriented impact, and strategy-oriented impact; ways they relate to and evolve from one another; and how they may be affected by contextual influences.Besides contributing to conceptualizations of impact in PAR, findings contribute a community perspective to the limited literature investigating the impact of health promotion initiatives related to EoL issues.

Background: If EOL care is to be person-centred and value-concordant, proactive conversations about individual preferences between residents, relatives, and staff are required. Nevertheless, the prevalence of conversations about preferences for EOL care is still low in residential care homes (RCHs), often relating to staff’s perceived lack of skills and confidence. Conversation tools may be useful to support staff in facilitating EOL conversations, but often focus more on documenting treatment priorities than on exploring underlying values and reasoning for preferences. In this study, we use the DöBra cards, the Swedish version of the GoWish cards, to support discussions about EOL care values and preferences in RCHs, and explore staff perspectives on use, usability, and impact. Methods: This qualitative study was based on data generated from two participatory action research processes in which RCH staff tested and evaluated use of DöBra cards in EOL conversations. Data comprise 6 interviews and 8 group meetings with a total of 13 participants from 7 elder care facilities. Qualitative content analysis was performed to identify key concepts in relation to use, usability, and impact of the DöBra cards with residents and/or relatives.Results: Based on participants’ experiences of using the DöBra cards as an EOL conversation tool in RCHs, we identified three main categories in relation to its usefulness. Outcomes of using the cards (1) included the outlining of content of conversations and supporting connection and development of rapport. Perceived impact (2) related to enabling openings for future communication and aligning care goals between stakeholders. Use and usability of the cards (3) were influenced by supporting and limiting factors on the personal and contextual level.Conclusions: This study demonstrates how the DöBra cards was found to be useful by staff for facilitating conversations about EOL values, influencing both the content of discussion and interactions between those present. The tool encouraged reflection and interaction, which staff perceived as potentially helpful in building preparedness for future care-decision making. The combination of providing a shared framework and being adaptable in use appeared to be key features for the DöBra cards usability in the RCH setting.

Background End-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults’ prioritizations and reasoning about values and preferences for future end-of-life care change over time. Methods Using a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5–12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants’ reasoning about card choices were explored with longitudinal qualitative analysis. Results Stability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants’ health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning. Conclusions Longitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals’ end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone.

There is limited empirical data about both health and end-of-life (EoL) issues among the Indigenous Sámi of Fennoscandia. We therefore aimed to investigate experiences of EoL care and support among the Sámi, both from the Sámi community itself as well as from more formalized health and social care services in Sweden. Our primary data source is from focus group discussions (FGDs) held at a Sámi event in 2017 with 24 people, complemented with analysis of previously collected data from 15 individual interviews with both Sámi and non-Sámi informants familiar with dying, death and bereavement among Sámi, “go-along” discussions with 12 Sámi, and individual interviews with 31 Sámi about advance care planning. After initial framework analysis, we applied a salutogenic model for interpretation, focusing on a sense of community coherence. We found a range of generalized resistance resources in relation to the Sámi community, which appeared to support EoL care situations, i.e., Social Organization, Familiarity with EoL Care, Collective Cultural Heritage, Expressions of Spirituality, Support from Majority Care Systems, and Brokerage. These positive features appear to support key components of a sense of community coherence, i.e., comprehensibility, meaningfulness and manageability. We also found relatively few, but notable deficits that may diminish the sense of community coherence, i.e., lack of communication in one’s own language, orientation, familiarity and/or agreement in contacts with formal health and social care systems, and/or support from extended family. The results suggest that there is a robust basis among Sámi for well-functioning EoL care, a challenge is in developing supportive interactions with the majority health and social care systems that support and complement these structures, for partnership in developing care that is meaningful, comprehensible and manageable even in potentially difficult EoL situations.

In this narrative study, we investigate salient Sami-specific aspects of a death system, inspired by Kastenbaum's model. We explore traditional Sami knowledge derived through storytelling in go-along group discussions to gravesites at the tree-line with cultural and historical significance for the Indigenous Sami peoples. Analysis illustrates how important material and immaterial cultural values are transferred across generations through their connection to people, place, and time—nature-bound as opposed to calendar-bound— objects, and symbols in relation to end-of-life issues. We found that the environment both shaped storytelling and became part of the stories themselves.

Background: Medical Assistance in Dying, also known as euthanasia or assisted suicide, is expanding internationally. Canada is the first country to permit Nurse Practitioners to provide euthanasia. These developments highlight the need for nurses to reflect upon the moral and ethical issues that euthanasia presents for nursing practice. Purpose: The purpose of this article is to provide a narrative review of the ethical arguments surrounding euthanasia in relationship to nursing practice. Methods: Systematic search and narrative review. Nine electronic databases were searched using vocabulary developed from a stage 1 search of Medline and CINAHL. Articles that analysed a focused ethical question related to euthanasia in the context of nursing practice were included. Articles were synthesized to provide an overview of the literature of nursing ethics and euthanasia. Ethical Considerations: This review was conducted as per established scientific guidelines. We have tried to be fair and respectful to the authors discussed. Findings: Forty-three articles were identified and arranged inductively into four themes: arguments from the nature of nursing; arguments from ethical principles, concepts and theories; arguments for moral consistency; and arguments from the nature of the social good. Key considerations included nursing’s moral ontology, the nurse–patient relationship, potential impact on the profession, ethical principles and theories, moral culpability for acts versus omissions, the role of intention and the nature of the society in which euthanasia would be enacted. In many cases, the same assumptions, values, principles and theories were used to argue both for and against euthanasia. Discussion: The review identified a relative paucity of literature in light of the expansion of euthanasia internationally. However, the literature provided a fulsome range of positions for nurses to consider as they reflect on their own participation in euthanasia. Many of the arguments reviewed were not nursing-specific, but rather are relevant across healthcare disciplines. Arguments explicitly grounded within the nature of nursing and nurse–patient relationships warrant further exploration.

Studio DoBra is a community-based initiative in which children (9 y/o) and older adults (mostly 80+) engaged with topics related to dying, death and loss through shared arts activities (e.g. collage, sculpture, games). In an ageing society, Sweden's end-of-life (EoL) care is increasingly professionalised and specialised, but there is little community involvement. One goal of Studio DoBra was therefore to support community engagement with EoL-related topics. Another goal was to create opportunities for interaction between children and older adults as there are few intergenerational meeting places. Two iterations of Studio DoBra were developed (2016, 2018) in different Swedish cities, utilising a community-based participatory research approach. Project groups comprised first author MK and representatives of community organisations such as meeting places for older adults, after-school centres and artistic organisations. Each iteration engaged eight children and eight older adults in a series of five workshops. This article investigates how children and older adults motivate their participation, their experiences of participating and ways in which they were affected by participation. We also investigate how parents reflect on their child's participation in Studio DoBra. Older adults, children and their parents were interviewed after each Studio DoBra. An inductive qualitative process guided by interpretive description was used to analyse the transcripts. Findings indicate that participants acted as individuals with agency in connecting across generations and in creating spaces for engaging with EoL-topics, not only in Studio DoBra but also in their social networks. Participants reflected on a changing sense of community through new intergenerational connections and social activities, and expressed a desire to maintain these. However, participants indicated sustainability challenges related to lacking agency in maintaining these spaces and sense of intergenerational community, as they rely on support from community organisations.

Hospital organizational features related to registered nurses' (RNs') practice environment are often studied using quantitative measures. These are however unable to capture nuances of experiences of the practice environment from the perspective of individual RNs. The aim of this study is therefore to investigate individual RNs' experiences of their work situation in cancer care in Swedish acute care hospitals.This study is based on a qualitative framework analysis of data derived from an open-ended question by 200 RNs working in specialized or general cancer care hospital units, who responded to the Swedish RN4CAST survey on nurse work environment. Antonovsky's salutogenic concepts "meaningfulness", "comprehensibility", and "manageability" were applied post-analysis to support interpretation of results.RNs describe a tension between expectations to uphold safe, high quality care, and working in an environment where they are unable to influence conditions for care delivery. A lacking sense of agency, on individual and collective levels, points to organizational factors impeding RNs' use of their competence in clinical decision-making and in governing practice within their professional scope.RNs in this study appear to experience work situations which, while often described as meaningful, generally appear neither comprehensible nor manageable. The lack of an individual and collective sense of agency found here could potentially erode RNs' sense of meaningfulness and readiness to invest in their work.

Background and Objectives There is a substantial body of research on advance care planning (ACP), often originating from English-speaking countries and focused on health care settings. However, studies of content of ACP conversations in community settings remain scarce. We therefore explore community-dwelling, older adults’ reasoning about end-of-life (EoL) values and preferences in ACP conversations. Research Design and Methods In this participatory action research project, planned and conducted in collaboration with national community-based organizations, we interviewed 65 older adults without known EoL care needs, about their values and preferences for future EoL care. Conversations were stimulated by sorting and ranking statements in a Swedish version of GoWish cards, called the DöBra cards, and verbatim transcripts were analyzed inductively. Results While participants shared some common preferences about EoL care, there was great variation among individuals in how they reasoned. Although EoL preferences and prioritizations could be identical, different individuals explained these choices very differently. We exemplify this variation using data from four participants who discussed their respective EoL preferences by focusing on either physical, social, existential, or practical implications. Discussion and Implications A previously undocumented benefit of the GoWish/DöBra cards is how the flexibility of the card statements support substantial discussion of an individual’s EoL preferences and underlying values. Such in-depth descriptions of participants’ reasoning and considerations are important for understanding the very individual nature of prioritizing EoL preferences. We suggest future users of the DöBra/GoWish cards consider the underlying reasoning of individuals’ prioritizations to strengthen person-centeredness in EoL conversations and care provision.

Objective: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. Design: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. Subjects: The study utilized a population sample of 7684 persons aged 18–66, of which 2020 responded, stratified by gender, age and region. Results: Most participants reported ‘no’ ( n = 827, 41%) or ‘some’ ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as ‘care before death’, ‘pain relief’, ‘dignity’ and a ‘peaceful death’. The preferred place of care and death was one’s own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term ‘palliative care’ was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. Conclusions: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.

The aim of this study was to identify a combination of early predictive symptoms/sensations attributable to primary lung cancer (LC). An interactive e-questionnaire comprised of pre-diagnostic descriptors of first symptoms/sensations was administered to patients referred for suspected LC. Respondents were included in the present analysis only if they later received a primary LC diagnosis or had no cancer; and inclusion of each descriptor required ≥4 observations. Fully-completed data from 506/670 individuals later diagnosed with primary LC (n = 311) or no cancer (n = 195) were modelled with orthogonal projections to latent structures (OPLS). After analysing 145/285 descriptors, meeting inclusion criteria, through randomised seven-fold cross-validation (six-fold training set: n = 433; test set: n = 73), 63 provided best LC prediction. The most-significant LC-positive descriptors included a cough that varied over the day, back pain/aches/discomfort, early satiety, appetite loss, and having less strength. Upon combining the descriptors with the background variables current smoking, a cold/flu or pneumonia within the past two years, female sex, older age, a history of COPD (positive LC-association); antibiotics within the past two years, and a history of pneumonia (negative LC-association); the resulting 70-variable model had accurate cross-validated test set performance: area under the ROC curve = 0.767 (descriptors only: 0.736/background predictors only: 0.652), sensitivity = 84.8% (73.9/76.1%, respectively), specificity = 55.6% (66.7/51.9%, respectively). In conclusion, accurate prediction of LC was found through 63 early symptoms/sensations and seven background factors. Further research and precision in this model may lead to a tool for referral and LC diagnostic decision-making.

This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person.We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings.The interpretive description analysis process resulted in three constructed themes-Aesthetic and un-aesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times.The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.

Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden. Using the bodily sensations they most commonly spoke about (tiredness, breathlessness, pain, and cough), we constructed four sensation-based cases to understand the pre-diagnostic processes of reasoning and practice triggered by these key indicators of LC. We thereafter critically applied Hay’s model of sensations to symptoms transformation, examining its central concepts of duration, disability and vulnerability, to support understanding of these processes. We found that while duration and disability are clearly relevant, vulnerability is more implicitly expressed in relation to perceived threat. Tiredness, even when of long duration and causing disability, was often related to normal aging, rather than a health threat. Regardless of duration, breathlessness was disturbing and threatening enough to lead to care-seeking. Pain varied by location, duration and degree of disability, and thus also varied in degree of threat perceived. Preconceived, but unmet expectations of what LC-related cough and pain would entail could cause delays by misleading participants; if cough lasted long enough, it could trigger health care contact. Duration, disability, and sense of threat, rather than vulnerability, were found to be relevant concepts for understanding the trajectory to diagnosis for LC among these participants. The process by which an individual, their family and health care providers legitimize sensations, allowing them to be seen as potential symptoms of disease, is also an essential, but varying part of the diagnostic processes described here.

BackgroundNursing turnover is a major issue for health care managers, notably during the global nursing workforce shortage. Despite the often hierarchical structure of the data used in nursing studies, few studies have investigated the impact of the work environment on intention to leave using multilevel techniques. Also, differences between intentions to leave the current workplace or to leave the profession entirely have rarely been studied.ObjectiveThe aim of the current study was to investigate how aspects of the nurse practice environment and satisfaction with work schedule flexibility measured at different organisational levels influenced the intention to leave the profession or the workplace due to dissatisfaction.DesignMultilevel models were fitted using survey data from the RN4CAST project, which has a multi-country, multilevel, cross-sectional design. The data analysed here are based on a sample of 23,076 registered nurses from 2020 units in 384 hospitals in 10 European countries (overall response rate: 59.4%). Four levels were available for analyses: country, hospital, unit, and individual registered nurse. Practice environment and satisfaction with schedule flexibility were aggregated and studied at the unit level. Gender, experience as registered nurse, full vs. part-time work, as well as individual deviance from unit mean in practice environment and satisfaction with work schedule flexibility, were included at the individual level. Both intention to leave the profession and the hospital due to dissatisfaction were studied.ResultsRegarding intention to leave current workplace, there is variability at both country (6.9%) and unit (6.9%) level. However, for intention to leave the profession we found less variability at the country (4.6%) and unit level (3.9%). Intention to leave the workplace was strongly related to unit level variables. Additionally, individual characteristics and deviance from unit mean regarding practice environment and satisfaction with schedule flexibility were related to both outcomes. Major limitations of the study are its cross-sectional design and the fact that only turnover intention due to dissatisfaction was studied.ConclusionsWe conclude that measures aiming to improve the practice environment and schedule flexibility would be a promising approach towards increased retention of registered nurses in both their current workplaces and the nursing profession as a whole and thus a way to counteract the nursing shortage across European countries.

Purpose Taste and smell alterations (TSAs) are common symptoms in patients with cancer that may interfere with nutritional intake and quality of life. In this study, we explore and describe how characteristics of self-reported TSAs change in individuals with lung cancer over time using a multiple case study approach to present longitudinal data from individuals. Methods Patients under investigation for lung cancer were recruited from one university hospital in Sweden. The 52 patients providing data eligible for the analyses presented here were those treated for primary lung cancer with three measurement time-points, of which one was prior to treatment and two after treatment start. Four self-report instruments were used for data collection. These included the Taste and Smell Survey, used to characterize TSAs for each individual at the three time-points and instruments measuring nutritional status, symptom burden and well-being. Three patient cases are described in detail to illustrate variation in individual experiences of TSAs. Results The characteristics of the TSAs experienced changed over time for many of the individuals in this study, including those undergoing surgery or stereotactic radiotherapy. The case descriptions show how the individual experiences of TSAs and the impact on daily life of these symptoms not only depend on TSA characteristics, but may be influenced by contextual factors, e.g. other symptoms and life situation. Conclusions Our results suggest that healthcare professionals need to consider the variation in characteristics of TSAs among and within patients over time, and be attentive to individual experiences of TSAs.

Sverige har en bedre overlevelse end Danmark for en lang række kræftsygdomme, herunder bryst-, tarm- og lungekræft. Årsagssammenhængene er ikke klarlagt, men variationer i kendskabet til kræftsymptomer og længden af patientintervallet kan måske delvist forklare nogle af forskellene i kræftoverlevelsen mellem de to lande. Denne eksplorative undersøgelse opstiller den hypotese, at den svenske population har et større kendskab til symptomer, som er relateret til bryst-, tarm- og lungekræft, og en kortere forventet lægesøgningsperiode for symptomer vedrørende disse tre kræftformer. Studiet bygger på telefoninterviews med henholdsvis 3.000 tilfældigt udvalgte danskere og 3.070 svenskere ≥ 30 år, der har besvaret den danske eller svenske version af spørgeskemaet ”Awareness and Beliefs about Cancer”. De danske respondenter synes at rapportere bedre kendskab til to ud af tre symptomer (en uforklarlig knude eller hævelse og længerevarende hoste eller hæshed) og kortere forventet patientinterval for to ud af tre symptomer (forandringer i brystet og blødning fra endetarmen). Resultaterne tyder således på, at forskelle i kendskabet til symptomer og forventet patientinterval ikke kan forklare forskellene i kræftoverlevelsen mellem de to lande. Background Recent epidemiologic data show that Denmark has considerably poorer survival from common cancers than Sweden. This may be related to a lower awareness of cancer symptoms and longer patient intervals in Denmark than in Sweden. The aims of this study were to: 1) compare population awareness of three possible symptoms of cancer (unexplained lump or swelling, unexplained bleeding and persistent cough or hoarseness); 2) compare anticipated patient interval when noticing any breast changes, rectal bleeding and persistent cough; and 3) examine whether potential differences were noticeable in particular age groups or at particular levels of education in a Danish and Swedish population sample. Method Data were derived from Module 2 of the International Cancer Benchmarking Partnership. Telephone interviews using the Awareness and Beliefs about Cancer measure were conducted in 2011 among 3000 adults in Denmark and 3070 adults in Sweden. Results Danish respondents reported a higher awareness of two of three symptoms (i.e. unexplained lump or swelling and persistent cough or hoarseness) and a shorter anticipated patient interval for two of three symptoms studied (i.e. any breast changes and rectal bleeding) than Swedish respondents. Differences in symptom awareness and anticipated patient interval between these countries were most pronounced in highly educated respondents. Conclusion Somewhat paradoxically, the highest awareness of symptoms of cancer and the shortest anticipated patient intervals were found in Denmark, where cancer survival is lower than in Sweden. Thus, it appears that these differences in symptom awareness and anticipated patient interval do not help explain the cancer survival disparity between Denmark and Sweden.

Introduction: Public health approaches offer the opportunity to move beyond clinical and health services approaches to end-of-life (EoL) care, to focus on whole populations, individuals and communi ...

PurposeTo examine associations between perceived leadership and intention to leave the workplace due to job dissatisfaction among registered nurses (RNs) who care for patients with cancer. We also examine intention to leave in relation to proportion of cancer patients, length of time in practice, perceived adequacy of cancer care education, and burnout.Methods and sampleThe data originated from the Swedish component of RN4CAST, based on a survey of RNs working with in-patient care in all acute care hospitals in Sweden. The 7412 RNs reporting ≥10% patients with cancer on their unit were included in this analysis. Data were collected on perceptions of work environment, burnout, future employment intentions, and demographic characteristics. Additional questions related to cancer care.Key resultsAbout 1/3 of all RNs intended to leave their workplace within the next year. Intention to leave was more prevalent among RNs reporting less favourable perceptions of leadership, who had worked ≤ two years as RN, who reported having inadequate cancer care education, and with higher burnout scores. Associations between leadership and intention to leave were stronger among RNs in the profession > two years, who reported having adequate cancer care education, and with lower burnout scores.ConclusionsPerception of leadership is strongly associated with intention to leave among RNs in both specialized and general cancer care. This suggests a crucial area for improvement in order to reduce turnover rates.

Background The thentest design aims to detect and control for recalibration response shift. This design assumes (1) more consistency in the content of the cognitive processes underlying patients’ quality of life (QoL) between posttest and thentest assessments than between posttest and pretest assessments; and (2) consistency in the time frame and description of functioning referenced at pretest and thentest. Our objective is to utilize cognitive interviewing to qualitatively examine both assumptions. Methods We conducted think-aloud interviews with 24 patients with cancer prior to and after radiotherapy to elicit cognitive processes underlying their assessment of seven EORTC QLQ-C30 items at pretest, posttest and thentest. We used an analytic scheme based on the cognitive process models of Tourangeau et al. and Rapkin and Schwartz that yielded five cognitive processes. We subsequently used this input for quantitative analysis of count data. Results Contrary to expectation, the number of dissimilar cognitive processes between posttest and thentest was generally larger than between pretest and posttest across patients. Further, patients considered a range of time frames when answering the thentest questions. Moreover, patients’ description at the thentest of their pretest functioning was often not similar to that which was noted at pretest. Items referring to trouble taking a short walk, overall health and QoL were most often violating the assumptions. Conclusions Both assumptions underlying the thentest design appear not to be supported by the patients’ cognitive processes. Replacing the conventional pretest–posttest design with the thentest design may simply be replacing one set of biases with another. Electronic supplementary material The online version of this article (doi:10.1007/s11136-015-1175-4) contains supplementary material, which is available to authorized users.

Nurses play a central role in Medical Assistance in Dying (MAiD) in Canada. However, we know little about nurses’ experiences with this new end-of-life option. The purpose of this study was to explore how nurses construct good nursing practice in the context of MAiD. This was a qualitative interview study using Interpretive Description. Fifty-nine nurses participated in semi-structured telephone interviews. Data were analyzed inductively. The findings illustrated the ways in which nurses constructed artful practice to humanize what was otherwise a medicalized event. Registered nurses and nurse practitioners described creating a person-centered MAiD process that included establishing relationship, planning meticulously, orchestrating the MAiD death, and supporting the family. Nurses in this study illustrated how a nursing gaze focused on relationality crosses the moral divides that characterize MAiD. These findings provide an in-depth look at what constitutes good nursing practice in MAiD that can support the development of best practices.

While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.