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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.

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.

BackgroundThe Covid-19 pandemic has had unprecedented effects on individual lives and livelihoods as well as on social, health, economic and political systems and structures across the world. This article derives from a unique collaboration between researchers and museums using rapid response crowdsourcing to document contemporary life among the general public during the pandemic crisis in Sweden.Methods and findingsWe use qualitative analysis to explore the narrative crowdsourced submissions of the same 88 individuals at two timepoints, during the 1stand 2ndpandemic waves, about what they most fear in relation to the Covid-19 pandemic, and how their descriptions changed over time. In this self-selected group, we found that aspects they most feared generally concerned responses to the pandemic on a societal level, rather than to the Covid-19 disease itself or other health-related issues. The most salient fears included a broad array of societal issues, including general societal collapse and fears about effects on social and political interactions among people with resulting impact on political order. Notably strong support for the Swedish pandemic response was expressed, despite both national and international criticism.ConclusionsThis analysis fills a notable gap in research literature that lacks subjective and detailed investigation of experiences of the general public, despite recognition of the widespread effects of Covid-19 and its’ management strategies. Findings address controversy about the role of experts in formulating and communicating strategy, as well as implications of human responses to existential threats. Based on this analysis, we call for broader focus on societal issues related to this existential threat and the responses to it.

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.

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.

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 Variation in post-operative mortality rates has been associated with differences in registered nurse staffing levels. When nurse staffing levels are lower there is also a higher incidence of necessary but missed nursing care. Missed nursing care may be a significant predictor of patient mortality following surgery. Aim Examine if missed nursing care mediates the observed association between nurse staffing levels and mortality. Method Data from the RN4CAST study (2009-2011) combined routinely collected data on 422,730 surgical patients from 300 general acute hospitals in 9 countries, with survey data from 26,516 registered nurses, to examine associations between nurses’ staffing, missed care and 30-day in-patient mortality. Staffing and missed care measures were derived from the nurse survey. A generalized estimation approach was used to examine the relationship between first staffing, and then missed care, on mortality. Bayesian methods were used to test for mediation. Results Nurse staffing and missed nursing care were significantly associated with 30-day case-mix adjusted mortality. An increase in a nurse’s workload by one patient and a 10% increase in the percent of missed nursing care were associated with a 7% (OR 1.068, 95% CI 1.031-1.106) and 16% (OR 1·159 95% CI 1·039-1·294) increase in the odds of a patient dying within 30 days of admission respectively. Mediation analysis shows an association between nurse staffing and missed care and a subsequent association between missed care and mortality. Conclusion Missed nursing care, which is highly related to nurse staffing, is associated with increased odds of patients dying in hospital following common surgical procedures. The analyses support the hypothesis that missed nursing care mediates the relationship between registered nurse staffing and risk of patient mortality. Measuring missed care may provide an ‘early warning’ indicator of higher risk for poor patient outcomes.

Taste and smell alterations have been recognized as common symptoms in relation to various cancers. However, previous research suggests that patients do not receive sufficient support in managing taste and smell alterations. Therefore, the objective of this study is to investigate how persons with experience from lung cancer-related taste and smell alterations reason about resources and strategies offered and used to manage these symptoms. Data from semi-structured individual interviews with 13 women and four men were analyzed with qualitative content analysis. We used Kleinman’s now classic medical anthropological model of local health care systems, consisting of the personal, professional, and folk sector, to interpret and understand how people respond to sickness experiences in their daily lives. By presenting the findings using this model, we demonstrate that most strategies for dealing with taste and smell alterations were undertaken in the personal sector, i.e. in participants’ daily lives, on an individual level and in interaction with family, social networks and communities. Taste and smell alterations implied two overarching challenges: 1) adjusting to no longer being able to trust information provided by one’s own senses of taste and/or smell, and 2) coming to terms with taste and smell alterations as a part of having lung cancer. Health care professionals’ involvement was described as limited, but appeared to fulfil most participants’ expectations. However, through provision of normalizing information, practical advice, and to some extent, emotional support, health care professionals had potential to influence strategies and resources used for dealing with taste and smell alterations. With this study, we further the understanding of how people deal with lung cancer-related taste and smell alterations and discuss the role of health care professionals for this process.

Background: Malignant melanoma (MM) is increasing rapidly in Northern Europe. To reduce incidence and mortality through earlier diagnosis, public awareness of MM is important. Thus, we aim to examine awareness of risk factors and a symptom of MM, and how awareness varies by country and socio-demographic factors in Denmark, Northern Ireland (NI), Norway and Sweden. Methods: Population-based telephone interviews using the ‘Awareness and Beliefs about Cancer’ measure were conducted in 2011 among 8355 adults ≥50 years as part of the International Cancer Benchmarking Partnership Module 2. Prevalence ratios (PRs) with 95% confidence intervals were calculated. Results: In these four countries, lowest awareness was found for ‘sunburn in childhood’ (63%), whereas awareness was high for ‘use of sunbeds’ (91%) and ‘mole change’ (97%). Lack of awareness of ‘sunburn in childhood’ was more prevalent among respondents from Norway [PR = 1.38 (1.28–1.48)] but less prevalent among respondents from Northern Ireland (NI) [PR = 0.78 (0.72–0.85)] and Sweden [PR = 0.86 (0.79–0.93)] compared with respondents from Denmark. Lack of awareness of ‘use of sunbeds’ was more prevalent among respondents from Norway [PR = 2.99 (2.39–3.74)], Sweden [PR = 1.57 (1.22–2.00)], and NI [PR = 1.65 (1.30–2.10)] compared with respondents form Denmark. Being a man, age ≥70, living alone, and having lower education, were each independently associated with lack of MM-awareness. Conclusions: The results indicate relatively low awareness of ‘sunburn in childhood’ as a risk factor for MM, and important disparities in MM-awareness across countries and socio-demographic groups. Improved and more directed initiatives to enhance public MM-awareness, particularly about ‘sunburn in childhood’, are needed.

Purpose – The purpose of this paper is to contribute to increased understanding of the concept agile and its potential for hospital managers to optimize design of organizational structures and processes to combine internal efficiency and external effectiveness. Design/methodology/approach – An integrative review was conducted using the reSEARCH database. Articles met the following criteria: first, a definition of agility; second, descriptions of enablers of becoming an agile organization; and finally, discussions of agile on multiple organizational levels. In total, 60 articles qualified for the final analysis. Findings – Organizational agility rests on the assumption that the environment is uncertain, ranging from frequently changing to highly unpredictable. Proactive, reactive or embracive coping strategies were described as possible ways to handle such uncertain environments. Five organizational capacities were derived as necessary for hospitals to use the strategies optimally: transparent and transient inter-organizational links; market sensitivity and customer focus; management by support for self-organizing employees; organic structures that are elastic and responsive; flexible human and resource capacity for timely delivery. Agile is portrayed as either the “new paradigm” following lean, the needed development on top of a lean base, or as complementary to lean in distinct hybrid strategies. Practical implications – Environmental uncertainty needs to be matched with coping strategies and organizational capacities to design processes responsive to real needs of health care. This implies that lean and agile can be combined to optimize the design of hospitals, to meet different variations in demand and create good patient management. Originality/value – While considerable value has been paid to strategies to improve the internal efficiency within hospitals, this review raise the attention to the value of strategies of external effectiveness.

Background: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. Aim: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients’ symptom distress and well-being during the last days of life, in residential care homes. Design: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient’s death, using the Edmonton Symptom Assessment System and Views of Informal Carers – Evaluation of Services. Settings/participants: Patients who died at all 19 residential care homes in one municipality in Sweden. Results: Shortness of breath (estimate = −2.46; 95% confidence interval = −4.43 to −0.49) and nausea (estimate = −1.83; 95% confidence interval = −3.12 to −0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers – Evaluation of Services item (estimate = −0.47; 95% confidence interval = −0.85 to −0.08). Conclusion: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.

Background: Cancer survival in the UK and Denmark are lower when compared to similar countries with late diagnosis a possible cause. We aimed to study the relationship between barriers to attending a primary care physician (GP) and anticipated time to help seeking (ATHS) with four cancer symptoms in six countries. Method: A population-based survey measuring cancer awareness and beliefs conducted within the International Cancer Benchmarking Partnership in Australia, Canada, Denmark, Norway, Sweden and UK. Data were collected on perceived barriers to GP consultation (including embarrassment, worry about wasting the doctors time, fear about what the doctor might find and being too busy) and ATHS for persistent cough, abdominal swelling, rectal bleeding and breast changes. Relationships between perceived barriers and ATHS were investigated using multivariable analysis. Results: Among 19,079 respondents, higher perceived barrier scores were associated with longer ATHS intervals for all symptoms studied (p10.84) had between two and three times the odds of longer ATHS. ATHS was low in Australia for all symptoms and highest in Denmark for abdominal bloating. Conclusion: Perceived barriers to help-seeking have a role in delaying GP presentation. Early diagnosis campaigns should address emotional and practical barriers that reduce early presentation with potential cancer symptoms.

OBJECTIVES: To determine the association of hospital nursing skill mix with patient mortality, patient ratings of their care and indicators of quality of care. DESIGN: Cross-sectional patient discharge data, hospital characteristics and nurse and patient survey data were merged and analysed using generalised estimating equations (GEE) and logistic regression models. SETTING: Adult acute care hospitals in Belgium, England, Finland, Ireland, Spain and Switzerland. PARTICIPANTS: Survey data were collected from 13 077 nurses in 243 hospitals, and 18 828 patients in 182 of the same hospitals in the six countries. Discharge data were obtained for 275 519 surgical patients in 188 of these hospitals. MAIN OUTCOME MEASURES: Patient mortality, patient ratings of care, care quality, patient safety, adverse events and nurse burnout and job dissatisfaction. RESULTS: Richer nurse skill mix (eg, every 10-point increase in the percentage of professional nurses among all nursing personnel) was associated with lower odds of mortality (OR=0.89), lower odds of low hospital ratings from patients (OR=0.90) and lower odds of reports of poor quality (OR=0.89), poor safety grades (OR=0.85) and other poor outcomes (0.80

Background The present shortage of registered nurses (RNs) in many European countries is expected to continue and worsen, which poses a substantial threat to the maintenance of healthcare in this region. Work–family conflict is a known risk factor for turnover and sickness absence. Objective This paper empirically examines whether the nurse practice environment is associated with experienced work–family conflict. Design A multilevel model was fit with the individual RN at the 1st, and the hospital department at the 2nd level using cross-sectional RN survey data from the Swedish part of RN4CAST, an EU 7th framework project. The data analyzed here is based on a national sample of 8356 female and 592 male RNs from 369 hospital departments. Results We found that 6% of the variability in work–family conflict experienced by RNs was at the department level. Organizational level factors significantly accounted for most of the variability at this level with two of the work practice environment factors examined, staffing adequacy and nurse involvement in hospital affairs, significantly related to work–family conflict. Due to the design of the study, factors on ward and work group levels could not be analyzed, but are likely to account for additional variance which in the present analysis appears to be on the individual level, with private life factors likely explaining another major part. Conclusion These results suggest that higher level organizational factors in health care have a significant impact on the risk of work–family conflict among RNs through their impact on the nurse practice environment. Lower level organizational factors should be investigated in future studies using hierarchical multilevel sampling.

This study of patients under investigation for lung cancer (LC) aims to: 1) examine the prevalence of self-reported taste and smell alterations (TSAs) and their relationships with demographic and clinical characteristics; and 2) explore nutritional importance of TSAs by examining their associations with patient-reported weight loss, symptoms interfering with food intake, and changes in food intake. Methods. Patients were recruited consecutively during investigation for LC from one university hospital in Sweden. Patient-reported information on TSAs, demographics, six-month weight history, symptoms interfering with food intake, and changes in food intake was obtained. Relationships between TSAs and other variables were examined using twotailed signifi cance tests. In addition, putative explanatory factors for weight loss were explored in those patients diagnosed with LC, since a relationship between TSAs and weight loss was found in this group. Results. The fi nal sample consisted of 215 patients, of which 117 were diagnosed with primary LC within four months of study inclusion and 98 did not receive a cancer diagnosis. The 38% prevalence of TSAs was identical in both groups, and were generally reported as mild and not interfering with food intake. However, a statistically signifi cant relationship between TSAs and weight loss was found among patients with LC, with a median weight change of � 5.5% and a higher frequency of weight loss � 10%. Patients with LC and weight loss � 10%, had higher frequency of reporting TSAs, of decreased food intake and of � 1 symptom interfering with food intake compared with those with less weight loss. Conclusion. TSAs, although relatively mild, were present in 38% of patients with and without LC. Relationships between TSAs and weight loss were found among patients with LC, but not fully explained by decreased food intake. This highlights the complexity of cancer-related weight loss.

Objectives. In view of declining screening uptake in young women, this review aims to summarise the available evidence relating to interventions designed to increase cervical screening uptake amongst women aged ≤ 35 years. Methods. Electronic databases were searched and further articles located by manual searches. Study designs employing a valid comparison group and including women aged ≤ 35 years published through 2012 were considered. Data was extracted on the uptake from either screening programme statistics or as reported by the study subjects. A narrative synthesis was undertaken for each category of interventions identified. Results. Ninety-two records were screened with 36 articles retrieved for further assessment. Four studies met the inclusion criteria, two of which evaluated more than one intervention. One of the studies evaluated the use of a modified invitation letter and reported no significant increase in uptake compared to a standard invitation. Three studies investigated the use of a reminder letter, with two reporting a positive effect on screening uptake in women aged 24–34. Three studies were included which supported the use of physician and telephone reminders. One study on HPV self-sampling reported a positive effect when compared with a reminder letter. Conclusions. There is a lack of randomised controlled trials designed to specifically address falling cervical screening uptake in amongst young women. Cervical screening programmes need to look beyond the use of invitation/reminders letters in this group of women to develop interventions which attempt to overcome as many barriers to uptake as possible.

Introduction Although registered nurses (RNs) are central in patient care, we have not found prior research that specifically addresses how RNs assess the safety of patient care at their workplace and how factors in RNs’ work environment are related to their assessments. This study aims to address these issues. Methods 9236 RNs working with inpatient care in 79 acute-care hospitals in Sweden completed a national population-based survey, including Practice Environment Scale of the Nursing Work Index—Revised and items from Agency for Healthcare Research and Quality's Hospital Survey on Patient Safety Culture. Correlation coefficients (Pearson and Spearman) and proportional odds regression were used for analysis. Results Nursing work environment factors were strongly related to RNs’ assessments of patient safety. RNs’ perception of having adequate staffing and resources improved their assessment of patient safety by at least two and a half times (OR 2.74 CI 2.52 to 2.97). RNs with a higher level of involvement in direct patient care gave a better patient safety grade than RNs with a more supervisory role. Most, but not all, patient safety culture items were related to RNs’ assessed patient safety grade. We found that work experience seemed to have no influence on RNs’ patient safety assessment. Conclusions While previous research emphasises patient-to-nurse ratios in strengthening patient safety practices, this study complements this by emphasising RNs’ own perception of having enough staff and resources to provide quality nursing care, as well as having good collegial nurse–physician relations and the presence of visible and competent nursing leadership—all factors highly related to RNs’ assessment of the safety of patient care at their workplace.

The majority of dying patients do not have access to necessary drugs to alleviate their most common symptoms, despite evidence of drug efficacy. Our aim was to explore the degree of consensus about appropriate pharmacological treatment for common symptoms in the last days of life for patients with cancer, among physicians working in specialist palliative care.Within OPCARE9, a European Union seventh framework project aiming to optimize end-of-life cancer care, we conducted a Delphi survey among 135 palliative care clinicians in nine countries. Physicians were initially asked about first and second choice of drugs to alleviate anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), as well as terminal restlessness.Based on a list of 35 drugs mentioned at least twice in the first round (n=93), a second Delphi round was performed to determine ≤ 5 essential drugs for symptom alleviation in the last 48 hours of life that should be available even outside specialist palliative care. There was ≥ 80% consensus among the participants (n=90) regarding morphine, midazolam, and haloperidol as essential drugs. For RTS, there was consensus about use of an antimuscarinic drug, with 9%-27% of the physicians each choosing one of four different drugs.Based on this consensus opinion and other literature, we suggest four drugs that should be made available in all settings caring for dying patients with cancer, to decrease the gap between knowledge and practice: morphine (i.e., an opioid), midazolam (a benzodiazepine), haloperidol (a neuroleptic), and an antimuscarinic.

Aims: To determine factors associated with variation in ‘care left undone’ (also referred to as “missed care”) by registered nurses in acute hospital wards in Sweden. Background: ‘Care left undone’ has been examined as a factor mediating the relationship between nurse staffing and patient outcomes. The context has not previously been explored to determine what other factors are associated with variation in ‘care left undone’ by registered nurses. Design: Cross-sectional survey to explore the association of registered nurse staffing and contextual factors such as time of shift, nursing role and patient acuity / dependency on ‘care left undone’ was examined using multi-level logistic regression. Methods: A survey of 10,174 registered nurse working on general medical and surgical wards in 79 acute care hospitals in Sweden (Jan-March 2010). Results: 74% of nurses reported some care was left undone on their last shift. The time of shift, patient mix, nurses’ role, practice environment, and staffing have a significant relationship with care left undone. The odds of care being left undone is halved on shifts where registered nurse care for 6 patients or fewer compared with shifts where they care for 10 or more. Conclusion: The previously observed relationship between registered nurse staffing and care left undone is confirmed. Reports of care left undone is influenced by registered nurse roles. Support worker staffing has little effect. Research is needed to identify how these factors relate to one another and whether care left undone is a predictor of adverse patient outcomes.

The web of relationships between wellbeing and the environments in which people live has long been recognized. However, relatively little research has been conducted about end-of-life surroundings from the perspective of the dying person. In this study, we investigate which aspects of their surroundings are particularly meaningful for the people inhabiting them in the last phases of life, based on participant-produced photographs with follow-up interviews. Twenty-three people were purposefully recruited via specialized in-patient palliative care/hospice units, specialized palliative care home care teams, and residential care facilities for the elderly. Participants were given a digital camera, and asked to take pictures of that which was meaningful for them in their surroundings. The interviewer later viewed the photographs with the participant, asking: "what is this picture of?" and "why is it meaningful to you?" The database consists of 76 photographs with follow-up interviews, which were analyzed qualitatively in an iterative process. These empirical data demonstrate how a sense of being valued, and of being able to maintain contacts with one's daily life and sense of identity appear supported or hindered by features of the care surroundings. These features include a positive aesthetic experience incorporating both sensory stimulation using one's body as well as general ambiance; support appropriate for maintaining a sense of functional independence; and connections with one's past, present and future as a person within a wider world. Corporeality appears crucial for understanding, negotiating and interacting in one's surroundings, while maintaining both physical and social function. This data collection approach was found to offer alternative forms of expression as verbal ability decreases and symptom burden increases, making it useful in end-of-life research and practice development. Special Issue: SI

PURPOSE OF REVIEW: Awareness of palliative care, including knowledge and skills regarding symptom alleviation via pharmacological and non-pharmacological interventions, is limited in many settings. Lists have been published of recommended drugs for palliative care that include medications for different disease stages, using different modes of administration.RECENT FINDINGS: Recent studies confirm that many of the most common symptoms in dying patients, for example pain, dyspnoea, anxiety, nausea, and delirium, are similar regardless of diagnosis. The classes of drugs most commonly recommended for alleviation of these symptoms are opioids, neuroleptics, benzodiazepines, and antimuscarinic drugs. Other recommendations have the character of emergency kits of standard drugs for common symptoms, to be used when needed in caring for dying patients at home or in hospitals.SUMMARY: Recommendations for the most appropriate drugs which should be available for the care of dying patients in all settings is suggested to have potential to improve quality of care through increasing the confidence of physicians and nurses, being costeffective, decreasing the need for hospital admissions, and most of all - reducing suffering. Education and training at all levels, as well as further policy work through expert recommendations, care pathways, and media attention, are needed.

Outcomes for many cancer forms are associated with socioeconomic status (SES).We investigated if SES was associated with management and mortality in men with high risk prostate cancer.A nation-wide population-based cohort in Prostate Cancer Data Base Sweden (PCBaSe), a merged database including data on incident prostate cancer identified in the National Prostate Cancer Register (NPCR) between 1997 and 2006. High risk PCa was defined as T3 tumour, and/or Gleason score 8-10 and/or PSA 20-50 ng/mL. Use of bone scan, curative treatment, and mortality in relation to SES was assessed by logistic, Cox, and competing risk regression with hazard ratios (HR), sub-distributed HR and 95% confidence intervals (CI) adjusted for co-morbidity, age, calendar period and clinical subgroups.Amongst 17,522 high risk prostate cancer patients, a bone scan was more often performed in higher white-collar than in blue-collar workers (OR 1.30; 95% CI 1.21-1.40). Amongst men without metastases, the likelihood of intention to treat was higher in higher white-collar workers (OR 1.43; 95% CI 1.28-1.57). In men who received curative treatment, the likelihood was higher to undergo radical prostatectomy for higher white-collar patients (OR 1.29; 95% CI 1.10-1.47). In men without metastases, not only overall mortality was lower amongst higher white-collar workers (HR, 0.76; 95% CI 0.60-0.97), but also prostate cancer-specific mortality (sHR 0.70; 95% CI, 0.49-0.99).We conclude that socioeconomic disparities in the management and mortality in men with high risk prostate cancer exist also within the setting of a National Health Care System aiming to provide care on equal terms to all residents.

AIMS AND OBJECTIVES: To explore potential differences within dyads of patients' with lung cancer and family members' judgment of different aspects of quality of care and relationships between quali ...

We examined associations among comorbidity, treatment decisions and mortality in patients with prostate cancer.A total of 77,536 men diagnosed with prostate cancer between 1997 and 2006 were identified in PCBaSe Sweden from the National Prostate Cancer Register of Sweden. Logistic, Cox and competing risk regression were used to assess associations among Charlson comorbidity index, treatment and mortality. The Charlson comorbidity index was categorized into no (0), mild (1) and severe comorbidity (2+).In men with low risk prostate cancer 5,975 of the 13,245 (45.1%) patients without comorbidity underwent radical prostatectomy compared to 256 of the 1,399 (18.9%) men with severe comorbidity. Following adjustment for age and period of diagnosis, radical prostatectomy was less likely to be offered to men with severe comorbidity (OR 0.48, 95% CI 0.41-0.55). In men with high risk prostate cancer, radiotherapy was more common (range 7.7% to 21.3%) than radical prostatectomy (range 3.0% to 11.2%) regardless of comorbidity burden. All cause and competing cause but not prostate cancer specific mortality were increased in men with severe comorbidity (all cause HR 1.99, 95% CI 1.93-2.05; competing cause sHR 2.66, 95% CI 2.56-2.78; prostate cancer specific sHR 0.98, 95% CI 0.93-1.03). The cumulative probability of prostate cancer death given no death from competing causes was significantly higher in men with severe comorbidity in all risk groups (p0.01).Comorbidity affects treatment choices, and is associated with all cause, competing cause and conditional prostate cancer specific mortality. An increased conditional prostate cancer specific mortality in men with severe comorbidity may reflect less aggressive treatment, impaired tumor defense, lifestyle factors and poor general health behavior.

Summary What is known and Objective: Biologically based therapies (BBTs) such as herbal medicines represent the most commonly used type of complementary and alternative medicine by cancer patients. There is a paucity of data regarding individuals’ motives for starting and continuing use of BBTs in cancer. Our objective is to explore lay perspectives on use of BBTs in cancer. Our hope is that the data generated will support pharmacists and other professionals in improving their communication about BBTs with patients. Methods: Interviews with 12 individuals with cancer who used BBTs were analyzed with interpretive description and framework analysis, to build on previous literature and gain new knowledge of clinical relevance. Results: The findings suggest that users are motivated to continue to use BBTs when they experience these as both effective and harmless. Perceived effects of BBTs include a wide range of responses such as improved physical and psychological well-being, and cancer-related benefits. These experiences go beyond the legal health and medical claims for these products. The findings indicate that users’ views of side-effects, ascribed to BBT use, are situation-dependent with the potential to either facilitate or hinder continued BBT use. What is new and Conclusion: Our results indicate the importance of acknowledging users’ own views of BBTs to improve patient–provider communication. This should aid the design of more effective BBT surveillance systems and hence increase patient safety and satisfaction.

Providing healthcare for women having undergone female genital cutting can present challenges. The women might require special obstetric care, including an anterior episiotomy (defibulation) for infibulated women. This paper explores how Swedish doctors caring for these women describe, explain and reason about their care and relevant policies in a Swedish context. A qualitative study was carried out with 13 chief/senior obstetricians and seven senior house officers. There was little consensus among the interviewed doctors on what constitutes good obstetric care for women with FGC or how care should be provided. Major problems include: inconsistent policy and praxis; uncoordinated care trajectories; diffuse professional role responsibilities; difficulties in monitoring labour and fetal status; and inhibited communication. The data highlight the need for increased awareness and reflective praxis both on the part of individual practitioners, and on an organisational level, which takes account of the special needs of different users.

Purpose Standardized questionnaires for patient-reported outcomes are generally composed of specified predetermined items, although other areas may also cause patients distress. We therefore studied reports of what was most distressing for 343 patients with inoperable lung cancer (LC) at six time points during the first year postdiagnosis and how these concerns were assessed by three quality-of-life and symptom questionnaires. Patients and Methods Qualitative analysis of patients' responses to the question “What do you find most distressing at present?” generated 20 categories, with 17 under the dimensions of “bodily distress,” “life situation with LC,” and “iatrogenic distress.” Descriptive and inferential statistical analyses were conducted. Results The majority of statements reported as most distressing related to somatic and psychosocial problems, with 26% of patients reporting an overarching form of distress instead of specific problems at some time point. Twenty-seven percent reported some facet of their contact with the health care system as causing them most distress. While 55% to 59% of concerns reported as most distressing were clearly assessed by the European Organisation for Research and Treatment for Cancer Quality of Life Questionnaire Core-30 and Lung Cancer Module instruments, the Memorial Symptom Assessment Scale, and the modified Distress Screening Tool, iatrogenic distress is not specifically targeted by any of the three instruments examined. Conclusion Using this approach, several distressing issues were found to be commonly reported by this patient group but were not assessed by standardized questionnaires. This highlights the need to carefully consider choice of instrument in relation to study objectives and characteristics of the sample investigated and to consider complementary means of assessment in clinical practice.

Purpose/objectives To explore occurrence of symptoms and relationships between them as perceived by patients with lymphoma before, during, and 14 months after the beginning of treatment. Research approach Qualitative and longitudinal. Setting A major oncology center in the United Kingdom. Participants 10 adult patients with lymphoma (3 women and 7 men) were recruited at treatment initiation. Methodologic approach Semistructured audiotaped interviews were conducted with participants in median 15 days, 4 months, and 14 months after diagnosis. Analysis of the verbatim transcripts was inspired by interpretive description, which is a grounded approach articulating patterns emerging in relation to clinical phenomena. Main research variables Symptoms. Findings Symptoms commonly reported by patients in this sample were lack of energy, lymphadenopathy, weight loss, itching, pain, sadness, night sweats, sleeping difficulties, and hair loss. Co-occurring prediagnosis symptoms seem to have led patients to seek medical attention; co-occurring symptoms during treatment seem to have a cumulatively distressing effect. Several of the symptoms were described as interrelated, with one symptom leading to one or more other symptoms. Conclusions The data confirm a complex symptomatology in patients with lymphoma. In addition, the findings support that co-occurring symptoms may have a synergistic effect on patients' health outcomes and add new knowledge about relationships between symptoms from patients' perspectives. Interpretation Illustrating symptoms and interrelationships between symptoms using diagrams may be useful to support communication as well as in identifying targets for symptom management.

Public health and health promotion approaches to end-of-life (EoL) research and care are still rare in Sweden. People remain generally ill-prepared for encounters with death and unable to advocate for quality EoL care; this may be reflected in Sweden's low scores for community engagement in the 2015 Quality of Death index. We have consolidated our endeavours into a cohesive national transdisciplinary research program, DoBra (a pun meaning both 'dying well' and 'awesome' in Swedish). In DoBra, we investigate how culture, the environment and conversation can promote constructive change and support better quality of life and death among the general population, in specific subgroups and in interventions directed to staff caring for dying individuals, their friends and families. DoBra uses ideas from new public health and the Ottawa Charter as umbrella theoretical frameworks and participatory action research as an overarching methodological approach. In DoBra we aim to achieve change in communities in a broad sense. In this interactive workshop, we therefore focus on the particular challenges we encounter in conducting stringent research when trying to catalyse, rather than control, change processes. We will share our ideas, experiences, reflections, tools and approaches as well as results, related to using a variety of strategies to bring together a broad range of stakeholders to co-create experience-based evidence through innovative approaches. We begin by linking theory, research and practice through discussion of the overarching ideas and individual projects, with the second part of the session based on audience engagement with various tools used in DoBra.

In this broad overview for the Conference: "State of the Science in Cancer Care", we review a conceptual framework of physician-patient communication and use the framework to inform the application of theory regarding communication and patient preferences in clinical practice. Using a selection of research, we illustrate how problematic issues in communication can be represented by the framework. We further illustrate how interventions designed to improve communication or to elicit patients' preferences in a medical encounter may have their desired effect, or may be optimally evaluated.

In this study, patients’ views and experiences of using home artificial nutrition, and factors associated with use of home parenteral nutrition (HPN) were investigated. Structured telephone interviews with 620 cancer patients enrolled in 21 palliative home care services were analysed. HPN was more common (11%) than home enteral tube feeding (HETF, 3%). Home artificial nutrition (including HPN and HETF) was usually introduced more than four months before death. Three of four HPN recipients also had oral food intake. HPN use was associated with eating difficulties, nausea/vomiting, and fatigue rather than gastrointestinal problems per se. HETF was generally used for patients with problems related to oesophagus and head and neck tumours. In conclusion the results suggest that, contrary to existing guidelines, HPN is used to supplement oral intake, and not only for patients with a non-functioning gastrointestinal tract.

Taste and smell changes (TSCs) are known side effects of chemotherapy, but smell changes (SCs) in the absence of taste changes are understudied. This study aims to explore SCs occurring without taste changes during chemotherapy, to better understand the characteristics of such changes, and how these experiences affect patients in their daily lives. Data derives from a qualitative interview study and a cross-sectional survey of 518 patients, with all patients receiving out-patient cancer chemotherapy in Sweden. Case studies of three patients with SCs and the 8% of survey participants with SCs only are in focus. All 43 participants with exclusively SCs reported increased sensitivity to one or several odors, with no participants reporting decreased sensitivity. Those reporting SCs significantly more often reported weight gain than those reporting TSCs, with oral problems and appetite loss significantly less common in the SC group. There were no differences in reported nausea between SC and TSC groups, but nausea was more common in the SC group than in those without TSCs. The case study reports were linked to and discussed in relation to possible explanatory models for increased olfactory sensitivity. SCs increase during chemotherapy, were often unpredictable and led to emotional consequences. The participants all reported heightened sensitivity to one or several odors which could not fully be explained by the potential explanatory models of anticipatory nausea and vomiting, pseudohallucinations, or increased chemical sensitivity.

The aim of this study was to investigate the nutritional risk status and use of nutritional support among cancer patients enrolled in palliative home care services. Differences in the use of nutritional support in relation to nutritional, social and clinical factors, as well as survival were also investigated.Structured telephone interviews were conducted with cancer patients enrolled in all 21 palliative home care services in the Stockholm region. An interview guide was designed to investigate topics related to the patient's nutritional situation.Interviews with 621 patients were analysed. Sixty-eight percent of the patients were scored as at nutritional risk according on a modified version of NRS-2002. Nutritional support was used by 55% of the patients, with oral nutritional supplements most common and 14% using artificial nutrition. Use of nutritional support was related to low BMI and severe weight loss and was more common in patients with shorter survival times.These findings demonstrate that nutritional support is used to treat already malnourished patients with shorter survival time, rather than to prevent malnutrition. A more structured approach to nutritional issues for patients in palliative phases, which considers life expectancy and psycho-social aspects of nutritional issues, could help identify potential candidates for nutritional support.

Nursing today faces numerous challenges. Societal changes lead to reorganization of health care, changing workloads with sicker patients in hospital and home care, and limited economic resources. The increasing and changing nature of knowledge needed for expert care provision challenges nurses to continually update their competencies. These are issues demanding proactive and dynamic changes in the way nurses conceive their mandates and practice. The aim of the action-research project presented here was to foster improved quality of care for patients with advanced cancer through collaborative endeavours integrating cancer nursing clinical practice, research and education in a knowledge exchange programme. The programme was based on input about caregiving needs from multi-professional staff caring for patients with advanced cancer in a variety of healthcare settings. Undergraduate baccalaureate nursing students were then engaged in literature studies to help address these needs. Results of the studies were communicated back to the involved clinicians in a variety of ways. In this paper, we discuss what we have experienced as opportunities and obstacles in conducting the project, based on our reflections and external evaluations. This is linked to a broader discussion of ways of integrating cancer nursing research, education and practice.

The aim of this study is to compare the prevalence and intensity of symptoms and problems with functioning between women and men with inoperable lung cancer (LC) during 3 months post-diagnosis. One hundred and fifty-nine patients completed the EORTC QLQ C-30 + LC13 at three time points: close to diagnosis and prior to treatment, and one, and 3 months later. Descriptive cross-sectional analyses and longitudinal analyses using repeated measure ANOVA were conducted. These patients reported many and intense symptoms and problems with functioning. The most salient finding from the cross-sectional analysis was that women reported both more, and more intense problems with emotional functioning close to diagnosis. Statistically significant improvements over time were found in both men and women with regard to emotional functioning, dyspnea, insomnia, cough, pain in arm/shoulder, while physical functioning, fatigue, constipation, dysphagia, peripheral neuropathy and alopecia deteriorated significantly over time. The longitudinal analyses suggest that, with the exception of emotional functioning, gender differences were not only related to biological sex alone, but were also found to be related to other components of the patients' life situation, such as education, age, civil status and type of LC. Sensitivity to different symptom experiences and responses to those experiences between and within women and men is also necessary in the management of symptoms in patients with inoperable LC. © 2007 Elsevier Ireland Ltd. All rights reserved.

Most research on cervical cancer screening from the perspective of the involved women tends to focus on issues specifically related to screening participation, knowledge and information needs or experiences. Our previous research in this area indicated a need to investigate women's perspectives on cancer screening within a broader framework. Therefore, in this study, we aim to understand better, how women reason about health, ill health, health maintenance and disease prevention, in relation to cancer prevention and screening. We conducted twelve focus group discussions in Sweden with 49 women between the ages of 21 and 74 years. The findings indicate that women's reasoning about different aspects of "control"* physical, physiological, emotional and social*was central in understanding their view on cancer prevention and screening. The desire for and burden of maintaining control appeared to affect their decisions and attitudes toward cervical cancer screening, with health maintenance described as having a "high price". Whereas some women motivated their screening attendance as a means of maintaining control, others described abstaining from screening which appeared to threaten their sense of control. It was also found that women reason differently about mammography and cervical cancer screening, which is contrary to assumptions guiding research in this area. Key words: Women's health, cervical cancer screening, vaginal smears, mammography, psychosocial oncology, focus group

Purpose To examine symptom prevalence, intensity, and association with distress in patients with inoperable lung cancer (LC), using time to death as point of reference. Patients and Methods A consecutive sample of 400 patients completed the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 plus a 13-item LC-specific scale and the Thurstone Scale of Symptom Distress–Lung Cancer at six time points during the first year after diagnosis. Patients were divided into subgroups, using data from the time point closest to death (< 1; 1 to 2; > 2 to 3; > 3 to 6; > 6 to 12; and > 12 months before death) for analysis. Results More than 50% of patients in all subgroups reported problems related to physical, role, and emotional functioning; fatigue; dyspnea; and cough. In general, functional levels were lower and symptoms higher in subgroups closer to death. Notably, clinically relevant differences were also found in role and social functioning and appetite loss between the two groups furthest from death. A consistent pattern was found among the six subgroups, with breathing, pain, and fatigue rated as the symptoms most associated with distress. Conclusion High prevalence of symptoms was found in all subgroups, with higher intensity in subgroups closer to death, indicating a need for prophylactic and proactive symptom management. Less concordance was found among symptom prevalence, intensity, and association with distress in subgroups further from death. Future studies should investigate longitudinal associations between symptoms with low intensity and high distress, and examine their clinical implications.

Few studies explore patients' experiences of smell and taste changes during cytotoxic chemotherapy. Issues, such as how such changes impact daily life, their consequences, and how patients respond to chemotherapy-induced chemosensory changes, have not previously been systematically addressed. The aim of this study was to examine these questions by exploring experiences of chemotherapy-induced chemosensory changes. In this qualitative longitudinal study, semistructured interviews were conducted with 14 women and 7 men with a variety of cancer diagnoses, who were known to have smell and taste changes. The participants were chosen for heterogeneity in regard to factors that might impact on experiences of chemotherapy. Participants were followed monthly until chemosensory changes ceased. There was great individual variation in patterns, intensity and impact of smell and/or taste changes, with changes reported to have ceased in all participants within 3.5 months after treatment ended. While not all participants found reported changes "bothersome," those who did reported predominantly emotional and social consequences. Smell and taste changes were said to be influenced by, or to influence, other symptoms, for example, appetite loss, early satiation, nausea, and oral problems. Although participants said they lacked ways to manage chemosensory changes, coping strategies described included frequent oral hygiene, searching for tolerable food, relying on smell and taste memory, and acceptance of changes. Although chemosensory changes resolved in all participants within several months after completed chemotherapy, the reported variation in experiences of taste and smell changes makes these side effects especially challenging to assess and alleviate.

Objective: To investigate the meanings that people with advanced cancer ascribe to engaging in creative activity in palliative occupational therapy.Methods: Sixteen interviews were conducted with eight participants over a period of 8–12 months. Participants were asked to narrate about their engagement in creative activities at a palliative intervention program. Transcribed interviews were analyzed with a phenomenological method.Results: Engagement in creative activities was found to ease life in proximity to death for persons with advanced cancer and limited survival time. For the participants, creativity meant that some of the consequences of incurable cancer could be confronted and alternative potentials could be explored and acknowledged. This occurred in an ongoing process of creating alternative ways to deal with life.Significance of results: Creative activity is a means for participants to develop ways to adapt and cope with declining physical abilities and existential concerns through working with their hands and bodies. This complements the often negative focus in palliative phases of cancer with an understanding of how enriching aspects of life can be maintained. The results highlight how people in palliative care experience their engagement in creative activity in the form of crafts, and how such engagements may be a significant tool for finding alternative ways to handle challenges in ongoing life.

Comparisons of symptom ratings and health-related quality of life between significant others and patients have been the focus of numerous studies during the past decades. Additional studies are needed to assess the discrepancies identified in this work. In the present cross-sectional exploratory study, focus has been on evaluating the accuracy of significant other proxy ratings and on investigating factors that influence agreement between lung cancer patients and significant others based on dyadic assessments from 52 patients and 54 significant others. Results indicate that the levels of agreement are fair to good, but that significant others consistently rate the patients' symptoms higher and functioning lower than the patients do themselves. Factors found to influence agreement in various dimensions of symptoms and functioning were gender, patient age, and significant others' self-reported lack of family support, health problems, and caregiver esteem.

Most patients are diagnosed with advanced lung cancer despite the presence of many and intense symptoms at diagnosis. This qualitative study aims to explore how people with inoperable lung cancer frame and conceptualize the onset of their sickness, to obtain knowledge which might facilitate earlier health care contact for people with potential lung cancer. Patients with inoperable lung cancer were recruited through a larger longitudinal study of 400 patients recruited consecutively from two university hospitals. The narrative analysis presented here is based on 91 narrative segments derived from audio-taped and transcribed qualitative interviews with 37 patients who survived the first year post diagnosis, complemented with data from previous interviews with the same people. Findings indicate a wide array of bodily experiences leading to diagnosis, including symptoms seen as related to other disorders, systemic complaints not conceptualized as symptoms or indications of a serious problem, and more rarely, symptoms triggering immediate action. In addition to the 'biographical disruption' often associated with chronic illness, this analysis indicates an alternative or parallel process involving 'biographical continuity', allowing for integration of past and present aspects of patients' lives.

Just as pain medications aim to relieve physical suffering, supportive surrounding for death and dying may facilitate well-being and comfort. However, little has been written of the experience of or preferences for the surroundings in which death and dying take place. In this study, we aim to complement our research from perspectives of patients, family members and staff, with perspectives from an international sample of the general public. Data derives from a project teaming artists and craftspeople together to create prototypes of space for difficult conversations in end-of-life (EoL) settings. These prototypes were presented in a museum exhibition, "Room for Death", in Stockholm in 2012. As project consultants, palliative care researchers contributed a question to the public viewing the exhibition, to explore their reflections: "How would you like it to be around you when you are dying?" Five-hundred and twelve responses were obtained from visitors from 46 countries. While preliminary analysis pointed to many similarities in responses across countries, continued analysis with a phenomenographic approach allowed us to distinguish different foci related to how preferences for surroundings for EoL were conceptualized. Responses were categorized in the following inductively-derived categories: The familiar death, The 'larger-than life' death, The lone death, The mediated death, The calm and peaceful death, The sensuous death, The 'green' death, and The distanced death. The responses could relate to a single category or be composites uniting different categories in individual combinations, and provide insight into different facets of contemporary reflections about death and dying. Despite the selective sample, these data give reason to consider how underlying assumptions and care provision in established forms for end-of-life care may differ from people's preferences. This project can be seen as an example of innovative endeavors to promote public awareness of issues related to death and dying, within the framework of health-promoting palliative care.