Background: The demography of the world is changing as the population is ageing. Because of this change to a higher proportion of older people, the WHO has called for improved palliative care for older persons. A large number of all deaths in the industrialised world occur while older people are living in nursing homes and therefore a key question becomes how the principles of palliative care can be implemented in that context. The aims of this study are: a) to describe a model of an educational intervention with the goal of implementing knowledge-based palliative care in nursing homes, and b) to describe the design of the evaluation of the effectiveness regarding the implementation of knowledge-based palliative care. Methods/design: A complex intervention is evaluated by means of a cross-over design. An educational intervention concerning palliative care consisting of five seminars during 6 months for staff and managers has been developed and conducted in 20 nursing homes in two counties. Before the intervention started, the feasibility was tested in a pilot study conducted in nursing homes not included in the main study. The intervention is evaluated through a non-randomized experimental design with intervention and control groups and pre- and post-assessments. The evaluation includes older persons living in nursing homes, next-of-kin, staff and managers. Data collection consists of quantitative methods such as questionnaires and register data and qualitative methods in the form of individual interviews, focus-group interviews and participant observations. Discussion: The research will contribute to new knowledge about how to implement knowledge-based palliative care in a nursing home setting. A strength of this project is that the Medical Research Council framework of complex intervention is applied. The four recommended stages, Development, Feasibility and piloting, Evaluation and Implementation, are combined for the educational intervention, which functions as a strategy to achieve knowledge-based palliative care in the nursing homes. Implementation is always a question of change and a good theoretical understanding is needed for drawing valid conclusions about the causal mechanisms of change. The topic is highly relevant considering the world's ageing population. The data collection is completed and the analysis is ongoing.

Nursing homes are often places where older persons come to die. Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses' experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents' reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents' contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized.

Objective: To translate and adapt the Serious Illness Conversation Guide for use within the Swedish healthcare setting and examine the validity and acceptability of the Swedish Serious Illness Conversation Guide. Methods: Three rounds of cognitive interviews were conducted (T1-3); patients (T1 n = 11; T2 n = 10; T3 n = 8), family members (T1 n = 5; T2 n = 2; T3 n = 2), and healthcare professionals (T1 n = 6; T2 n = 6; T3 n = 5). The guide was iteratively adapted based on interview feedback, clinical experience, and the literature. The guide was tested on training days with physicians and nurses. Results: The Swedish Serious Illness Conversation Guide was found to be useful in supporting serious illness conversations. Clinicians reported that some questions were emotionally challenging. Explicit questions about prognosis and timing were excluded. Instead, the dual approach of "hoping for the best and preparing for the worst" was used to explore patients' thoughts about the future. Conclusions: Patients, family members, and healthcare professionals found the Swedish Serious Illness Conversation Guide to be appropriate, sensitive, and responsive to their needs. The Swedish Serious Illness Conversation Guide may facilitate a more health-promoting approach to serious illness conversations. Further research is needed to understand the impact of these conversations on person-centered and goal-concordant care.

The Palliative Care Self-Efficacy Scale (PCSE) is a valid instrument in English for assessing healthcare professionals’ self-efficacy in providing palliative care; it has not been translated into Swedish. The aim of this study was to describe the translation, cultural adaptation, and content-validation process of the PCSE scale. In this study, forward and backward translations, pretesting including an expert panel (n = 7), and cognitive interviewing with possible healthcare professionals (physicians, nurses, and assistant nurses) (n = 10) were performed. Experts in palliative care rated items on a Likert scale based on their understandability, clarity, sensitivity, and relevance. The item-level content validity index (I-CVI) and modified kappa statistics were calculated. Healthcare professionals were interviewed using the think-aloud method. The translation and validation process resulted in the final version of the PCSE scale. The average I-CVI for sensitivity was evaluated and approved. Most of the items were approved for clarity, some items lacked understandability, but a majority of the items were considered relevant. The healthcare professionals agreed that the items in the questionnaire evoked emotions, but were relevant for healthcare professionals. Thus, the Palliative Care Self-Efficacy scale is relevant for assessing healthcare professionals’ self-efficacy in palliative care in a Swedish care context. Further research using psychometric tests is required.

Background The Serious Illness Care Program (SICP) is a model developed for structured communication, identifying patients, and training physicians to use a structured guide for conversations with patients and family members. However, there is a lack of knowledge regarding the sustainable implementation of this conversation model. Therefore, the aim of this study was to identify barriers and enablers during the implementation of the SICP in hospital settings. Methods The SICP was implemented at 20 units in two hospitals in Sweden. During the implementation process, seven individual interviews and two group interviews were conducted with seven facilitators (five physicians, one behavioral therapist, and one administrator). Data were analyzed using qualitative content analysis, first inductively, and then deductively using the organizational readiness for change as a theoretical framework. Result The analysis resulted in three factors acting as enablers and eight factors acting as enablers and/or barriers during the implementation of the SICP. The three factors considered as enablers were preliminaries, identifying patients, and facilitator's role. The eight factors considered as enablers and/or barriers were broad implementation, leadership, time, confidence, building foundation, motivation to work change, motivation for training in serious illness conversations, and attitudes. Conclusion This study indicates limited readiness to implement the SICP in hospital settings due to considerable variation in organizational contextual factors, change efficacy, and change commitment. The identified enablers and barriers for implementation of the SICP could guide and support future implementations to be sustainable over time.

Serious illness conversations aim to align medical care and treatment with patients' values, goals, priorities, and preferences. Timely and accurate identification of patients for serious illness conversations is essential; however, existent methods for patient identification in different settings and population groups have not been compared and contrasted. This study aimed to examine the current literature regarding patient identification for serious illness conversations within the context of the Serious Illness Care Program and/or the Serious Illness Conversation Guide. A scoping review was conducted using the Joanna Briggs Institute guidelines. A comprehensive search was undertaken in four databases for literature published between January 2014 and September 2021. In total, 39 articles met the criteria for inclusion. This review found that patients were primarily identified for serious illness conversations using clinical/diagnostic triggers, the 'surprise question', or a combination of methods. A diverse assortment of clinicians and non-clinical resources were described in the identification process, including physicians, nurses, allied health staff, administrative staff, and automated algorithms. Facilitators and barriers to patient identification are elucidated. Future research should test the efficacy of adapted identification methods and explore how clinicians inform judgements surrounding patient identification.

BackgroundAriadne Labs' Serious Illness Care Program (SICP), inclusive of the Serious Illness Conversation Guide (SICG), has been adapted for use in a variety of settings and among diverse population groups. Explicating the core elements of serious illness conversations could support the inclusion or exclusion of certain components in future iterations of the programme and the guide. AimThis integrative systematic review aimed to identify and describe core elements of serious illness conversations in relation to the SICP and/or SICG. DesignLiterature published between 1 January 2014 and 20 March 2023 was searched in MEDLINE, PsycINFO, CINAHL and PubMed. All articles were evaluated using the Joanna Briggs Institute Critical Appraisal Guidelines. Data were analysed with thematic synthesis. ResultsA total of 64 articles met the inclusion criteria. Three themes were revealed: (1) serious illness conversations serve different functions that are reflected in how they are conveyed; (2) serious illness conversations endeavour to discover what matters to patients and (3) serious illness conversations seek to align what patients want in their life and care. ConclusionsCore elements of serious illness conversations included explicating the intention, framing, expectations and directions for the conversation. This encompassed discussing current and possible trajectories with a view towards uncovering matters of importance to the patient as a person. Preferences and priorities could be used to inform future preparation and recommendations. Serious illness conversation elements could be adapted and altered depending on the intended purpose of the conversation.

Background The Serious Illness Care Programme was developed to promote more, better and earlier serious illness conversations. Conversations about goals and values are associated with improved experiences and outcomes for seriously ill patients. Clinicians' attitudes and beliefs are thought to influence the uptake and performance of serious illness conversations, yet little is known about how clinicians perceive the impact of these conversations on patients. This study aimed to explore physicians' perceptions regarding the impact of serious illness conversations for patients.Methods The Serious Illness Care Programme was implemented as a quality improvement project in two hospitals in Southern Sweden. Focus group evaluation discussions were conducted with 14 physicians and inductive thematic analysis was undertaken.Results The results revealed that physicians considered potential perils and optimised potential payoffs for patients when engaging in serious illness conversations. Potential perils encompassed inappropriate timing, damaging emotions and shattering hopes. Potential payoffs included reflection time, secure space, and united understandings.Conclusions Physicians depicted a balance in evaluating the perils and payoffs of serious illness conversations for patients and recognised the interrelation of these possibilities through continual assessment and adjustment.

People with psychotic disorders experience to a great extent avoidable physical illnesses and early mortality. The aim of the study was to investigate the potential effects for this group of participating in a lifestyle intervention. A multi-component nurse-led lifestyle intervention using quasi-experimental design was performed. Changes in biomedical and clinical measurements, self-reported health, symptoms of illness and health behavior were investigated. Multilevel modeling was used to statistically test differences in changes over time. Statistically significant changes were found in physical activity, HbA1c and waist circumference. A lifestyle intervention for people with severe mental illness can be beneficial for increasing physical activity.

Life expectancy is greatly reduced in patients with schizophrenia, and cardiovascular diseases are a leading cause of mortality. The aim of this cross-sectional study was to investigate the prevalence of overweight, obesity, and cardiovascular disease (CVD) risk and to investigate the relationships between self-rated health, sense of coherence, CVD risk, and body mass index (BMI) among people with severe mental illness (SMI) in psychiatric outpatient settings. Nearly 50% of the participants were exposed to moderate/high risk of CVD and over 50% were obese. The results showed no statistically relationships between the subjective and objective measures (Bayes factor <1) of health. The integration of physical health into clinical psychiatric nursing practice is vital.

People with psychotic disorders have a significantly increased risk of physical diseases and excessive mortality rates. The aim of the study was to investigate relationships between changes in physical activity, levels of salutogenic health, and glycated hemoglobin among people with psychotic disorders after participation in an individualized lifestyle intervention. The results from analyses showed that self-reported increased physical activity was positively associated with the level of salutogenic health and negatively associated with the level of HbA1c on an individual level. The results indicate that coordinated, individualized, holistic and health-promoting nursing care is crucial to enabling enhanced lifestyle within this vulnerable target group.

It is well known that people with severe mental illness have a reduced life expectancy and a greater risk of being affected by preventable physical illnesses such as metabolic syndrome, cardiovascular disease and type 2 diabetes. There are still, however, only a few published studies focusing on what enables healthy living for this group. This study thus aimed to describe what enables healthy living among people with severe mental illness in psychiatric outpatient services. The data were collected in qualitative interviews (n=16) and content analysis was used to analyze the data. The interviews resulted in an overall theme Being regarded as a whole human being by self and others, which showed the multidimensional nature of health and the issues that enable healthy living among people with severe mental illness. Three categories emerged: (i) everyday structure (ii), motivating life events and (iii) support from significant others. The results indicate that a person with severe mental illness needs to be encountered as a whole person if healthy living is to be enabled. Attaining healthy living requires collaboration between the providers of care, help and support. Health care organizations need to work together to develop and provide interventions to enable healthy living and to reduce poor physical health among people with severe mental illness.

The aim of this study was to develop a classic grounded theory about people who have psychiatric disabilities and live in ordinary housing with housing support. Interviews and observations during the interviews were analyzed, and secondary analyses of data from previous studies were performed. The impossible mission in everyday life emerged as the main concern and mastering everyday life as the pattern of behavior through which they deal with this concern. Mastering everyday life can be seen as a process, which involves identifying, organizing, tackling, challenging and boosting. Before the process is started, avoiding is used to deal with the main concern. The community support worker, providing housing support, constitutes an important facilitator during the process, and the continuity of housing support is a prerequisite for the process to succeed. If the process mastering everyday life is interrupted by, for example, changes in housing support, the strategy of avoiding is used.

The aim of this study was to develop a grounded theory about people with psychiatric disabilities, living in supported housing. Interviews as well as observations during the interviews were analyzed together with secondary analyses of quantitative and qualitative material from previous studies. Being deprived of self-determination emerged as the main concern for residents in supported housing and striving for meaning emerged as the pattern of behavior through which this group resolves their main concern. Striving for meaning involves living in the present, striving for self-determination, strengthening self-esteem, emotional processing and resting from the present. The strategies facilitate each other and are used singly, together simultaneously, or alternately. If they are successful, a meaning in the present is perceived. If all the strategies fail repeatedly, escaping from the present is used in order to deal with being deprived of self-determination. The implications of the findings suggest prioritizing a reduction of the institutional nature of the social and physical environment, and to support the residents' self-determination.

The major aim of the present study was to explore what people with psychiatric disabilities, living in two different types of housing, consider to be the best and the worst in their housing situation. A secondary aim was to explore to what extent additional questions to a questionnaire with a free-response format can provide complementary information to the previous knowledge in the field. The content analysis revealed that the physical attributes were of great significance for the residents in ordinary housing, while both psychosocial aspects and physical attributes were important for those living in supported housing. When providing good housing solutions for people with psychiatric disabilities, attention needs to be given to these aspects by politicians, policymakers as well as by nursing staff.

Weight-loss surgery requires lifelong lifestyle modifications for the maintenance of weight loss and health effects, and can affect both the individual and family. Earlier research indicates that the quality of social relationships has positive and negative influences on wellbeing and health. There is little research on family-life after a member has undergone gastric bypass (GBP) against obesity. Thus, this study aimed to develop a classic grounded theory about families with a member treated with GBP against obesity. The study design used classic grounded theory and included data from 16 interviews. Families’ shared a main concern of unexpected changes after GBP, resulting in the theory Stabilizing family life, explained as a social process to decrease uncertainty and find stability and well-being in family interactions. The social process develops differently which entail families: attaining unity, returning to old patterns, or disconnecting to find stability, depending on the discrepancy in expectations and knowledge. This is affected by the overall life situation, life-stage and relationship quality. The theory highlights unexpected change as a potential challenge for the family, as well as how they resolve this. Hence, the theory can be applied in care strategies for families. Identification of families needing support to stabilize family life after GBP requires further research.

BACKGROUND: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored.

AIMS: To describe patients' perspectives of what constitutes a dignified life within a palliative care context.

METHODS: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis.

RESULTS: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'.

CONCLUSION: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial.

Guided imagery (GI) is a nonpharmacological intervention that is increasingly implemented in different clinical contexts. However, there have been no studies on the effect of GI on the comfort of inpatients of palliative care (PC) units. Therefore, the aim of this study was to evaluate the effects of GI on the comfort of patients in PC. A 1-group, pretest-posttest, pre-experimental design was used to measure differences in heart rate, respiratory rate, pain, and comfort in patients (n = 26) before and after a 2-session GI program. The intervention featuring GI increased comfort, measured by an Abbreviated Holistic Comfort Scale and the visual analog comfort scale (P < .001), and decreased heart rate (P < .001), respiratory rate (P < .001), and pain, as measured by the (numerical) visual analog pain scale (P < .001). This study demonstrates that the use of an intervention featuring GI increases the comfort of oncology patients admitted to a PC unit. The use of GI by nurses is inexpensive, straightforward to implement, and readily available and may result in the provision of comfort care.

Background: Living with a chronic disease such as atrial fibrillation (AF) not only affects the patient but also has implications for the partner. There is a lack of research on couples living with AF and, in particular, how they experience and deal with the disease.

Objective: The aim of this study was to explore couples’ main concerns when one of the spouses is afflicted with AF and how they continually handle it within their partner relationship.

Methods: Classical grounded theory was used throughout the study for data collection and analysis. Interviews were conducted with 12 couples (patient and partner together). There were follow-up interviews with 2 patients and 2 partners separately.

Results: Couples living with AF experience uncertainty as a common main concern. This uncertainty was fundamentally rooted in not knowing the cause of AF and apprehension about AF episodes. Couples managed this uncertainty by either explicitly sharing concerns related to AF or through implicitly sharing their concerns. Explicit sharing incorporated strategies of mutual collaboration and finding resemblance, whereas implicit sharing incorporated strategies of keeping distance and tacit understanding. Time since diagnosis and time being symptom-free were factors influencing afflicted couples’ shifting between implicit and explicit sharing.

Conclusions: Atrial fibrillation affects the partner relationship by bringing uncertainty into couples’ daily lives. Even though this study shares similarities with previous studies on couples living with chronic disease, it contributes to the existing knowledge by presenting a set of strategies used by couples in managing uncertainty when living with AF.

Individual behavior affects and is affected by other people. The aim of this study was to examine if emotional distress in patients with atrial fibrillation (AF) and their spouses was associated with their own and their partner’s perceived health. Participants included 91 dyads of patients and their spouses. Emotional distress was measured using the Hospital Anxiety and Depression Scale and perceived health was measured with the Short Form 36 Health Survey. The Actor–Partner Interdependence Model was used for dyad-level analyses of associations, using structural equation modeling. Higher levels of anxiety and depression were associated with lower levels of perceived health in patients and spouses. Higher levels of depression in patients were associated with lower levels of vitality in spouses and vice versa. As AF patients and their spouses influence each other, health-care interventions should consider the dyad to address dyadic dynamics. This may benefit the health of the individual patient and of the couple.

Aims and objectives. To explore illness beliefs in couples where one spouse has atrial fibrillation.& para;& para;Background. Beliefs are the lenses through which we view the world, guiding our behaviour and constructing our lives. Couples evolve an ecology of beliefs from their interaction whereby their actions and choices arise from their beliefs. Atrial fibrillation is a common cardiac arrhythmia that has implications for both patients and partners. A couple's illness beliefs play an important role in convalescence and illness management, and no previous studies have explored illness beliefs in couples living with atrial fibrillation.& para;& para;Design. A qualitative hermeneutic design.& para;& para;Methods. Data collection constituted in-depth interviews with nine couples (patient and partner together). Hermeneutic philosophy as described by Gadamer was used to interpret and to understand illness beliefs in couples living with atrial fibrillation.& para;& para;Results. The findings revealed both core illness beliefs and secondary illness beliefs. From the core illness belief 'The heart is a representation of life', two secondary illness beliefs were derived: atrial fibrillation is a threat to life and atrial fibrillation can and must be explained. From the core illness belief 'Change is an integral part of life', two secondary illness beliefs were derived: atrial fibrillation is a disruption in our lives and atrial fibrillation will not interfere with our lives. Finally, from the core illness belief 'Adaptation is fundamental in life', two secondary illness beliefs were derived: atrial fibrillation entails adjustment in daily life and atrial fibrillation entails confidence in and adherence to professional care.& para;& para;Conclusion. Couples' interaction has developed mutual illness beliefs regarding atrial fibrillation that guide them in their daily lives and influence their decisions. The adoption of a family-centred perspective in cardiovascular care settings is warranted.

Background

One challenge for healthcare professionals when delivering palliative care can be their lack of confidence. The Self-efficacy in Palliative Care Scale (SEPC) is considered a valid and reliable assessment scale to evaluate confidence when delivering palliative care. Currently, there is not a reliable instrument aimed to measure healthcare professionals’ confidence in palliative care in Swedish. Therefore, this study aimed to translate, culturally adapt, and validate the SEPC-scale for use in a Swedish healthcare context.

Methods

This study applied the World Health Organization’s (WHO) guidelines for translating and adapting instruments, using forward and back-translation, an expert panel, and cognitive interviews. Swedish experts in palliative care (n = 6) assessed the Swedish version of the SEPC-scale based on its relevance, understandability, clarity, and sensitivity on a Likert scale. Methods involved calculation of content validity index (CVI) with modified kappa statistics and cognitive interviewing with healthcare professionals (n = 10) according to the “think-aloud” method.

Results

Calculation of I-CVI (Item-CVI) showed that the Swedish SEPC-scale was considered relevant but needed some modifications to improve its understandability and clarity. The experts recognized an absence of precision in some items that affected clarity and understanding. Likewise, the healthcare professionals highlighted some challenges with understandability and clarity. They indicated that the scale was relevant, but a few items needed adjustment to fit a broader range of healthcare professionals. Items that referred to death and dying could be sensitive but were considered relevant.

Conclusions

The SEPC-scale is considered valid for use in Swedish healthcare practice, for a broad range of healthcare professionals, and for diagnoses other than cancer. This study shows that cultural adaptation is necessary for establishing relevance and enabling acceptance to various healthcare professionals and contexts in the target country.

Background: Previous research found that healthcare professionals had low preparedness for palliative care. Thus, it is necessary to explore healthcare professionals' self-efficacy. The Swedish Self-Efficacy in Palliative Care Scale (SEPC-SE) evaluates readiness in communication, patient management and multidisciplinary teamwork; however, it should be tested on a larger population. Furthermore, the constructs of the SEPC-SE should be compared to that of the original SEPC.

Aim: This study aimed to evaluate the consensus between the construct validity and reliability of the SEPC and the translated and adapted SEPC-SE. Furthermore, it aimed to describe and compare the self-efficacy of nurses and physicians in hospitals and explore the associated factors.

Methods: The nurses (n = 288) and physicians (n = 104) completed the SEPC-SE. Factor analysis with Cronbach's alpha evaluated validity and reliability, and an analysis using the Mann-Whitney U test compared self-efficacy and multiple linear regression-associated factors.

Results: The SEPC-SE revealed three factors with high reliability. Education or experience in specialised palliative care was minor, especially for nurses. Self-efficacy was highest in patient management (nurses, median [md] = 74.57, physicians md = 81.71, p = 0.010) and communication (nurses md = 69.88, physicians md = 77.00, p = 0.141) and lowest in multidisciplinary teamwork (nurses md = 52.44, physicians md = 62.88, p = 0.001). The strongest associations with self-efficacy were education at work and advanced homecare experiences. In addition, there were significant associations between years in the profession, male sex, physicians and university education.

Conclusion: The SEPC-SE is valid and reliable for measuring self-efficacy. Nurses had lower self-efficacy than physicians. Physicians were associated with higher self-efficacy and had more education and experience in palliative care settings, which may explain their levels of self-efficacy.

When children are seriously ill, being able to be cared for at home with the family is valuable, but community nurses are often not trained to care for children. The aim of this study was therefore to describe community nurses´perceptions of caring for serioulsy ill children at home. A content analysis was conducted of 11 semi-structed interviews with nurses. One theme, obligation to care, was found, followed by three categories: making an impact, feeling confident, and emotional processing. In conclusion, we found collaboration with paediatric staff in the hospital is important for community nurses in order to gain confidence, which would optimise care at home for seriously ill children and their families.

Living with a life-limiting cancer illness can entail a turmoil of feelings such as constant fear of loss, suffering and dying. Because patients live longer with life-limiting illness, there is a need for enhanced understanding of how people make sense of and cope with the complicated aspects that this life situation brings on. In this article, we explore how bloggers with advanced cancer use metaphors as ways of making sense of their experiences. Our study is theoretically grounded in Conceptual Metaphor Theory, where metaphors are seen as a powerful phenomenon that both reflects and affects our thinking. The data consist of a corpus of blogs written in Swedish by individuals with advanced cancer, and the findings from our linguistic metaphor analysis are consistently interpreted against the backdrop of literature on coping. Our study thus highlights the intersection of linguistic metaphor analysis and psychological theories of coping by illustrating the many and complex functions metaphors can have as part of sense-making processes. Our hermeneutic approach enables us to show some differences among the three most pervasive metaphor domains in our material, battle, journey and imprisonment: the journey and imprisonment domains are more flexible than the battle domain in terms of the different kinds of coping strategies that are actualised by the bloggers’ use of metaphors. One particular finding from our analysis is the way in which the bloggers make use of metaphors to compartmentalise experiences and emotions. Our contention is that careful attention to the metaphors used by patients can improve communication in healthcare and enhance understanding of the complex role language use plays in coping processes more generally. By highlighting the relation between metaphor use and coping, our analysis also provides a way to discuss coping strategies based on the patient’s own use of language.

Mealtimes are important events in care homes for physical and social well-being. However, residents usually have little input concerning meal timings, what food is offered, and how it is served. This integrative review explored mealtime interventions and their outcomes in care homes related to the Five Aspects Meal Model (FAMM). Research articles published 2010–2021 were searched for in ASSIA, CINAHL, PsycINFO, PubMed, and SveMed+ and resulted in 13 articles focusing on interventions. The analysis was based on the aspects of FAMM: room, meeting, product, management control system, and atmosphere. The result shows that even though interventions specifically focused on one aspect, they often evaluated outcomes related to several aspects. Different aspects can work together to foster effective mealtimes. FAMM eased to visualise the usefulness of mealtime interventions from a broad perspective and can be a useful tool for assessing and improving mealtime situations in clinical practice.

BackgroundIn 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci. MethodsA literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'. ResultsA total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18years of age. ConclusionsThe trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.

Background: To further advance the use of a heart-failure-specific question prompt list (HF-QPL) for communication about prognosis and end-of-life care, knowledge about such communication and the perceptions and experiences of professionals is needed. Objectives: 1. to describe health care professionals' perceptions of communication about prognosis and end-of-life in heart failure (HF) care, and 2. to describe their experiences of using a HF-QPL. Design: A qualitative design that analyzed material from written assignments of nurses and physicians who were using a HF-QPL while participating in a communication course. Methods: Fifteen health care professionals from different regions in the south of Sweden were included. The data were collected from course assignments on 1. their reflection on the suitable timepoint for talking about prognosis for the first time, 2. their reflection on the HF-QPL, and 3. their experiences of using the HF-QPL in clinical practice. Data were analyzed using thematic analysis. Results: Five overarching themes were identified. The first theme was awareness of professional role responsibilities that described the recognition of different responsibilities in these conversations within the HF team. The second theme described the importance of being optimally prepared, and the third that confidence and skills are required to use the HF-QPL. The fourth theme described the HF-QPL as a bridge in the communication between professionals, patients, and family members. The fifth theme identified challenges using the HF-QPL in HF care. Conclusions: Using a HF-QPL in HF care has the potential to start conversation and facilitate discussion about the HF trajectory.

Aim and objectives

To describe patients’ experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis.

Background

Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs.

Methods

An inductive and exploratory design was used. A total of 24 patients (75% men, 52–87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data.

Findings

Two overarching themes, “The message sent” and “Hoping for the best or preparing for the worst”, each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences.

Conclusion

This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.

Background: The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention. Methods: Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy. Results: Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members. Conclusions: In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.

Background The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals. Methods Data were collected in a two-round Delphi survey and a cross-sectional survey, including patients with heart failure, their family members, and health care professionals working in heart failure care in Sweden and the Netherlands. Acceptability for and demand of the Question Prompt List were assessed. Results A total of 96 patients, 63 family members and 26 health care professionals participated in the study. Regarding acceptability, most of the original questions were found to be relevant by the participants for inclusion in the Question Prompt List but some cultural differences exist, which resulted in two versions of the list: a Swedish version including 33 questions and a Dutch version including 38 questions. Concerning demand, participants reported that they were interested in discussing the questions in the revised Question Prompt List with a physician or a nurse. Few patients and family members reported that they were worried by the questions in the Question Prompt List and hence did not want to discuss the questions. Conclusions This Question Prompt List has successfully been adapted into a Swedish version and a Dutch version and includes questions about the HF trajectory which patients, their families, and health care professionals perceived to be relevant for discussion in clinical practice. Overall, patients and family members were not worried about the content in the Question Prompt List and if used in accordance with patients' and family members' preferences, the Question Prompt List can help to improve communication about the heart failure trajectory.

Metaforer är våra språkliga ”redskap” när vi talar om okända eller känsliga ämnen. Att reflektera över hur dessa används kan ge vårdpersonal ökad förståelse för hur patienter och närstående ser på och hanterar sin situation.

Good communication is of utmost importance in all forms of cancer care and especially so in the palliative context. To render the ungraspable graspable, metaphors are frequently used drawing on their capacity to capture the intangible in terms of more familiar experiences. For instance, to die from cancer can be described as ’coming to the end of a life journey’ or ’losing a battle’. Metaphors are largely language and culture specific. Today’s increasingly multicultural societies require particular awareness in order to achieve dignified, individualized palliative cancer care. This project aims to strengthen the scientific foundation for the use of metaphors in Swedish palliative cancer care. A secondary aim is to compare the use of metaphors in Sweden and the UK in order to reveal differences and similarities. Textual data are collected from

1. a) internet-based blogs, where patients write about their illness-related emotions and experiences while being in palliative care, and from

2. b) interviews with patients, family and health care professionals, where the focus is to investigate what it means to live a dignified life in palliative care.

The two sets of data are analyzed using both qualitative and quantitative linguistic methods. First, the Pragglejaz procedure, a well-established linguistic method for metaphor identification, is used in order to manually identify metaphorical expressions in the material, develop analytic categories adapted to the Swedish language data and ensure inter-rater reliability. Second, the material is approached by means of corpus linguistic methods. The combination of research methods is inspired by the UK-based MELC project. The data are currently being processed and the first results will be presented at the conference. The project is funded by The Kamprad Family Foundation, Sweden.

Background: The significance of metaphors for the experience of cancer has been the topic of extensive previous research, with “Battle” and “Journey” metaphors standing out as key. Adaptation to the patient’s use of metaphor is generally believed to be an important aspect of person-centered care, especially in palliative care. The aim of this study was to investigate the use of metaphors in blogs written in Swedish by people living with advanced cancer and explore possible patterns associated with individuals, age and gender.

Methods: The study is based on a dataset totaling 2 602 479 words produced some time during the period 2007–2016 by 27 individuals diagnosed with advanced cancer. Both qualitative and quantitative procedures were used, and the findings are represented as raw frequencies as well as normalized frequencies per 10 000 words. Our general approach was exploratory and descriptive. The Mann-Whitney U test was used to analyze statistical significance.

Results: Our results confirm the strong foothold of “Journey” and “Battle” metaphors. “Imprisonment” and “Burden” metaphors were also used by the majority of the individuals. The propensity to use metaphors when describing the cancer experience was found to differ extensively across the individuals. However, individuals were not found to opt for one conceptualization over the other but tended to draw on several different metaphor domains when conceptualizing their experience. Socio-demographic factors such as age or gender were not found to be strong predictors of metaphor choice in this limited study.

Conclusions: Using a range of different metaphors allows individuals with advanced cancer to highlight different aspects of their experience. The presence of metaphors associated with “Journey”, “Battle”, “Imprisonment” and “Burden” across individuals could be explained by the fact that the bloggers are part of a culturally consistent cohort, despite variations in age, sex and cancer form. Awareness of metaphors commonly used by patients can enhance health professionals’ capacity to identify metaphorical patterns and develop a common language grounded in the patients’ own metaphor use, which is an important requisite for person-centered palliative care.

Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field. image

Aims: To continuing the quest of the concept of transition in nursing research and toexplore how the concept of transition is used in occupational therapy, oral health andsocial work as well as in interdisciplinary studies in health and welfare, between2003–2013.Design: An integrative literature review.Methods: PubMed, CINAHL, PsycINFO, DOSS, SocIndex, Social Science Citation Indexand AMED databases from 2003–2013 were used. Identification of 350 articles includingthe concept of transition in relation to disciplines included. Assessment of articlesare in accordance to Meleis’ typologies of transition by experts in each discipline.Chosen key factors were entered into Statistical Package for the Social Sciences (SPSS).Results: Meleis’ four typologies were found in all studied disciplines, except developmentin oral health. The health‐illness type was the most commonly explored,whereas in social work and in occupation therapy, situational transitions dominated.

Objectives

The aim was to explore the tactical officers’ (TOs) main concerns when leading licensed medical personnel (LMP) in combat zones and how they resolved them.

Methods

A classic grounded theory was chosen in order to develop a theory, which explained and conceptualized the TOs behaviors. Ten individual interviews and five informal conversations were conducted with TOs with various ranks, experienced in leading LMPs on military operations in Afghanistan, Mali and/or Aden (outside the coast of Somalia).

Results

The theory unifying loyalty explains how TOs handle the challenges when leading LMP. To create loyalty TOs use four strategies: executing orders, clearing out roles, marking limits and clarifying rules and laws. These strategies can be used by two leadership styles, hierarchical and democratic.

Conclusions

In order to fulfill the military duties it is essential to unify LMP in the unit, which is a challenge since LMP experience dual loyalty. The main goal for TOs is to ensure and maintain stability and do the military duties when being in combat zones and that requires using both leadership styles, depending on what the conditions in combat zones requires.

Patients with chronic diseases, such as those with pacemakers, have shown that they have a worsened well-being, which means an increased interest in investigating how relatives of patients with pacemakers experience their situations and how the disease affects their life situations. The aim of this study was to explore the main concerns for the relatives of patients with a pacemaker and how they resolve these issues. A classic grounded theory was used throughout the study for data collection and analysis. Interviews were conducted with ten participants. Striving for normalcy emerged as the main concern for relatives of patients with a pacemaker and was handled through a process of regaining normalcy where the relatives strive to find a way to live as normal as possible. Regaining normalcy is done through developing trust, dwindling and finally life stabilizing, in which they are either holding back or new normalizing. Distinguishing signs are constantly done during the process to quickly notice possible symptoms of the patient. Increased knowledge and understanding of how the relatives of patients with a pacemaker regain normalcy can be used as a guide in order to support and inform the patient as well as their relatives in conjunction with implantation occasions but also in connection with recurring and lifelong follow-up occasions.

Background: The Serious Illness Care Programme enables patients to receive care that is in accordance with their priorities. However, despite clarity about palliative care needs, many barriers to and difficulties in identifying patients for serious illness conversations remain. Aim: To explore healthcare professionals' perceptions about factors influencing the process of identifying patients for serious illness conversations. Design: Qualitative design. A thematic analysis of observations and semi-structured interviews was used. Setting/participants: Twelve observations at team meetings in which physicians and nurses discussed the process of identifying the patients for serious illness conversations were conducted at eight different clinics in two hospitals. Semi-structured interviews were conducted with three physicians and two nurses from five clinics. Results: Identifying the right patient and doing so at the right time were key to identifying patients for serious illness conversations. The continuity of relations and continuity over time could facilitate the identification process, while attitudes towards death and its relation to hope could hinder the process. Conclusions: The process of identifying patients for serious illness conversations is complex and may not be captured only by generic tools such as the surprise question. It is crucial to address existential and ethical obstacles that can hinder the identification of patients for serious illness conversations.

The increase in the use of medical devices in palliative home care requires that patients and next-of-kin feel secure. Therefore, the aim was to describe medical technology's impact on the sense of security for patients, next-of-kin and district nurses. Deductive content analysis was conducted on data from three previous studies, using the theoretical framework 'palliative home care as a secure base'. The use of medical technology was shown to have an impact on the sense of security for all involved. A sense of control was promoted by trust in staff and their competence in managing the technology, which was linked to continuity. Inner peace and being in comfort implied effective symptom relief facilitated by pain pumps and being relieved of responsibility. Health care professionals need to have practical knowledge about medical technology, but at the same time have an awareness of how to create and maintain a sense of security.

Aims and objectives.  Describe next-of-kin’s conceptions of medical technology in palliative homecare.

Background.  Next-of-kin to palliative patients are in an exposed position with increasing responsibility. The more involved they are in the care, the greater caregiver burden they describe. Medical technology has become increasingly common in palliative homecare, and previous research suggests that the devices transform the homes to a hospital ward, thus shifting responsibility from the personnel to the next-of-kin.

Design.  An explorative descriptive design with a phenomenographic approach was chosen to describe qualitatively different conceptions of the phenomenon medical technology.

Method.  Interviews with 15 next-of-kin to patients in palliative homecare were analysed in a seven-step process where 10 conceptions emerged in five description categories.

Results.  Medical technology in palliative homecare required next-of-kin’s responsibility in monitoring or providing practical help. It also implied uncertainty among the next-of-kin because of worries about its safety or because of an improper handling. The technology trespassed on daily life because it restricted and affected the private sphere. Medical technology enabled comfort as it implied security and was a prerequisite for the patient to be cared for at home. It also required an adjustment to comprehend and manage the medical technology.

Conclusions.  Medical technology resulted in an increased caregiver burden and uncertainty among the next-of-kin. Although it meant restrictions and affected their social life, they had great confidence in its possibilities.

Relevance to clinical practice.  It is important to limit the amount of personnel and materials in the home to avoid trespassing on the family’s daily life. Medical personnel also have to be sensitive to what next-of-kin have the strength to do and not use them as informal caregivers.

Healthcare reforms and reductions in the number of hospital beds are leading to an increasing amount of medical technology moving from hospitals into home care, affecting the daily lives of patients. The aim of this study was therefore to describe the ways patients understand medical technology in palliative home care. With use of a phenomenographic approach, 15 patients with medical technology were interviewed, and data were analyzed in a 7-step process. Three ways of understanding the phenomenon emerged: a masterful patient, an adjustable patient, and a restricted patient. Masterful patients took control over the medical technology and were mostly independent of assistance from personnel. Adjustable patients accepted and adapted their lives to the medical technology and were satisfied with assistance from the personnel. Restricted patients were reminded daily of the medical technology and dependent on assistance from personnel. Depending on the patients' health conditions, the support from the personnel, and the impact of medical technology, a transfer between the different ways of understanding occurred with a simultaneous movement between independence and dependence. The patient exhibited various ways of understanding, although one way of understanding was more dominant.

The aim of this population-based registry study was to explore how cancer influences the health of partners, by examining the onset of new diagnoses for partners, health care use and health care costs among partners living with patients with cancer. The sample consisted of partners of patients with cancer (N = 10 353) and partners of age- and sex-matched controls who did not have cancer (N = 74 592). Diagnoses, health care use and health care costs were studied for a continuous period starting 1 year before the date of cancer diagnosis and continued for 3 years. One year after cancer diagnosis, partners of patients with cancer had significantly more mood disorders, reactions to severe stress and ischaemic heart disease than they exhibited in the year before the diagnosis. Among partners of patients with cancer, the type of cancer was associated with the extent and form of increased health care use and costs; both health care use and costs increased among partners of patients with liver cancer, lung cancer, colon cancer and miscellaneous other cancers. The risk of poorer health varied according to the type of cancer diagnosed, and appeared related to the severity and prognosis of that diagnosis.

This study aimed to illuminate aspects of familial interactions when 1 member is in the palliative phase of his/her cancer course. An individual cancer diagnosis influences the entire family, often requiring daily life changes for all members. Current research has examined individual family member perspectives; family system nursing studies are warranted. Narrative family interviews were conducted on 13 families living with cancer. The interviews were transcribed and analyzed according to a hermeneutic method. Analyses revealed the following: Family interaction patterns were adjusted in response to changes in family life, which encompassed 3 different, but interrelated, patterns: (1) power dynamics in the family, (2) the "secret game" in the family, and (3) multifaceted closeness and distance in the family. It is crucial to adopt a family perspective during palliative care to meet each unique family's needs. Health care facilitators should be aware of the complex dynamics and challenges that these families encounter. This will help obtain a greater understanding of factors underlying effective palliative care.