Effect of an educational intervention on nurses' competence in activities of daily living support in end-of-life care using a pretest-posttest repeated measures design.

BACKGROUND: Most patients in specialized palliative care units need nursing support to perform activities of daily living (ADL), such as using a toilet or transferring out of a bed or chair. To deliver high-quality ADL support that facilitates patients' movement and protects nurses' musculoskeletal health, nurses need appropriate knowledge and skills. The objective of this study is to investigate the impact of education based on the "Advanced Kinaesthetics in Palliative care (AdKinPal) program" on the competence in Kinaesthetics, self-efficacy regarding ADL support in end-of-life care and musculoskeletal complaints of nurses from specialist palliative care units. METHODS: A pretest-posttest repeated measures design was applied. The study took place in three specialised units for palliative care in Switzerland between June 2018 and April 2020. All the nurses who worked in participating wards (n = 62) and fulfilled the inclusion criteria were asked to participate. The intervention - the AdKinPal program - is an education-based training program conducted for six months. We took measurements using self-administered questionnaires at three points before and after the intervention. Using descriptive statistics, repeated measurement analysis of variance (ANOVA) and independent-samples t-tests, we analysed the participants' demographic characteristics as well as developments over time and relationships between the three outcome variables: Kinaesthetics competence, self-efficacy regarding ADL support in end-of-life care and musculoskeletal complaints. RESULTS: Fifty-nine nurses and one physiotherapist participated, and 38 participants (63%) responded to all three questionnaires. The AdKinPal training improved the nurses' perceived Kinaesthetics competence and self-efficacy regarding ADL support in end-of-life care. Participants who reported lower back, neck or shoulder pain had a significantly lower Kinaesthetics competence. CONCLUSIONS: The AdKinPal program can raise nurses' Kinaesthetics competence. Thereby, patients' autonomy and quality of life could be supported, and symptom management could be enhanced in a holistic manner. Furthermore, the AdKinPal program fosters nurses' self-efficacy in ADL support in end-of-life care. A strong sense of self-efficacy enhances professional well-being in many ways. Additionally, the nursing staff's musculoskeletal health can be promoted by enhancing their Kinaesthetics competence. TRIAL REGISTRATION: DRKS00015908. Registration Date 23.11.2018.

"Loneliness is a monotonous thing": descriptive qualitative research on the loneliness of caring relatives.

BACKGROUND: The phenomenon of loneliness is increasing worldwide. Caring relatives (CRs) are at high risk of suffering from loneliness. Although some studies have already investigated the issue of loneliness among CRs, there is a lack of evidence to help understand the experience of loneliness in depth. The aim of this study is to record and analyse the experience of loneliness among CRs of chronically ill people. Specifically, the aim is to develop a conceptual model based on the concepts of social, emotional, and existential loneliness. METHODOLOGY: A qualitative-descriptive research design with narrative semistructured interviews was chosen. Thirteen CRs-three daughters, six wives and four husbands-participated in the study. The participants were an average of 62.5 years old. The interviews took place from September 2020 to January 2021 and lasted an average of 54 min. The data were analysed inductively using coding. The analysis was carried out in the following three coding phases: initial open coding, axial coding, and selective coding. The central phenomenon was abductively generated from the main categories. RESULTS: A chronic illness gradually changes the participants' normal lives over time. A feeling of social loneliness is experienced, as their quality of social contacts no longer meets their needs. Thoughts about the future and the question of why are omnipresent can create a feeling of existential loneliness. Lack of communication in the partnership or in the family relationship, the changed personality of the ill person as well as the resulting role shift are stressful. Moments of closeness and tenderness become rare, and a change in togetherness takes place. In such moments, there is a strong feeling of emotional loneliness. Personal needs rapidly fade into the background. One's own life comes to a standstill. Accordingly, loneliness is perceived by the participants to be a stagnant life and is experienced as monotonous and painful. Feelings such as helplessness, powerlessness, frustration, anger, and sadness accompany this loneliness. CONCLUSION: The study results show that the feeling of loneliness is present and experienced in a similar way by CRs, regardless of age and relationship to an ill person and that a need for action must derive from this. With the conceptual model, it is possible to offer versatile starting points for nursing practice, such as sensitization, to foster further research into the topic.

"Discussion or silent accompaniment: a grounded theory study about voluntary stopping of eating and drinking in Switzerland".

BACKGROUND: Voluntary stopping of eating and drinking as an option to end life prematurely is gaining international attention, and health care professionals are increasingly confronted with the wish to die through voluntary stopping of eating and drinking by individuals. While to date, there are no guidelines in Switzerland to orient professional support, it is of interest how professionals and other people involved react to the situation. The aim of this qualitative study was to explore how health care professionals in Switzerland accompany individuals during voluntary stopping of eating and drinking and to analyze this decision-making process. METHODS: Charmaz's grounded theory constructivist methodology uses guidelines for systematic, theory-driven data analysis underpinned by a pragmatic philosophical perspective. Data were collected in autumn 2016 as part of a regional palliative care conference on voluntary stopping of eating and drinking. All participants of the expert meeting (N = 50, including nurses, counsellors, ethicists, medical doctors, politicians, volunteers, and relatives) were invited to the focus group interviews, of which N = 47 participated. We conducted five focus group interviews, each lasting one hour. RESULTS: The results showed that the accompaniment of those willing to die during voluntary stopping of eating and drinking was either discussed and cleared with one another or was unspoken and silently accompanied. CONCLUSIONS: The demands of participants for more knowledge must be heeded, and there is also a need for systematic instructions on how to proceed in the case of voluntary stopping of eating and drinking support and what needs to be considered.

Use of digital technologies to combat loneliness and social isolation: a cross-sectional study in Swiss outpatient care during COVID-19 pandemic.

BACKGROUND: There is limited data on the use of digital technologies in outpatient care in Switzerland. Our objectives were therefore to determine which digital technologies are used and whether they had an impact on loneliness and social isolation in the wake of the COVID-19 pandemic. METHODS: A cross-sectional survey design was used with a convenience sample of 1272 outpatient care providers in Switzerland. The questionnaire used is based on an unsystematic literature review and a previous qualitative study with six outpatient caregivers and two caring relatives, based on which the 30 items for this questionnaire were developed. Data were analyzed descriptively, and group comparisons were made using the Kruskal Wallis test. Changes over time were measured using Friedman test with Bonferroni post hoc tests and Wilcoxon test for paired samples. RESULTS: The impact of the COVID-19 pandemic was evident both on the part of the health care system, e.g., inadequate protective equipment; on the part of health care providers, e.g., increasing fatigue in keeping abreast of the virus as the pandemic progressed; and on the part of clients, who reduced services of care, e.g., out of fear of infection. According to the assessment of the outpatient caregivers, loneliness and social isolation of the clients was high in spring 2020 and increased strongly in the following winter. Alternative solutions, such as digital technologies, were hardly used or not used at all by the clients. CONCLUSIONS: The results suggest that the pandemic is dramatically impacting clients. This highlights the urgent need to invest in the development of appropriate digital technologies reducing the impact of social isolation and loneliness and the associated long-term costs to the healthcare system.

Impact on place of death in cancer patients: a causal exploration in southern Switzerland.

BACKGROUND: Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. METHODS: A data mining algorithm and a causal probabilistic model for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. RESULTS: Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family's preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient's preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. CONCLUSION: Concerning death at home, open communication about death and dying is essential. Furthermore, for the patient preference for home care to be respected, the family's decision for the last place of care seems to be key. The early initiation of family-centred palliative care and the provision of specialist palliative home care for patients who wish to die at home are suggested.

Long-term care nurses' attitudes and the incidence of voluntary stopping of eating and drinking: A cross-sectional study.

AIMS: To assess the incidence of voluntary stopping of eating and drinking (VSED) in long-term care and to gain insights into the attitudes of long-term care nurses about the VSED. DESIGN: A cross-sectional study. METHODS: Heads of Swiss nursing homes (535; 34%) answered the Online-Survey between June - October 2017, which was evaluated using descriptive data analysis. RESULTS: The incidence of patients who died in Swiss nursing homes by voluntarily stopping eating and drinking is 1.7% and 67.5% of participants consider this phenomenon highly relevant in their daily work. Most participants (64.2%) rate VSED as a natural death accompanied by health professionals and patients are also granted the right to care (91.9%). This phenomenon is expected by the participants less at a young age and more in old age. CONCLUSION: Participants' overall views on the VSED are very positive, whereas it is assumed that VSED is a phenomenon of old age. Professionals still lack sufficient knowledge about this phenomenon, which could be clarified through training. IMPACT: Voluntary stopping of eating and drinking is much discussed interprofessional, but there is a lack of knowledge on how this is perceived in the context of long-term care and about the incidence of the phenomenon. Voluntary stopping of eating and drinking is rare but noticeable end-of-life practises that is considered by professionals to be mainly dignified and peaceful, although moral concerns make it difficult to accompany. These findings call on long-term care institutions to discuss VSED as an end-of-life practice. Positioning on the issue provides clarity for staff and patients and promotes to develop standardized care. International Registered Report Identifier (IRRID): DERR1-10.2196/10358.

[The dynamic model of care by relatives]. / Das dynamische Modell der Angehörigenpflege und -betreuung.

BACKGROUND: The dynamics of care arrangements depend on a complex interplay of many factors. To explicitly analyze these interrelationships the "dynamic model of care by relatives" was developed. The starting points are two transition phases: role acquisition and relief. Both decisively influence the adequacy of care arrangements from a caregiver's perspective and these interrelationships have not been addressed with sufficient precision in the existing literature. The model is designed to support professionals in considering the intricate interaction between role acquisition and relief in decision making. METHODS: A causal loop diagram was elaborated by means of a group model building process whereby four university departments contributed to the modeling process. Additionally, 50 external organizations were involved, e.g. outpatient care services, nursing homes, medical and social counseling centers. A total of 18 interviews with caregiving relatives provided the basis for reconstructing the dynamics of the model variables. Finally, computer simulations enabled a model analysis and a comparison with the interview results. RESULTS: The model can be depicted as a causal diagram with five elements characterizing the experiences of caregiving relatives, e.g. acquiring the caregiver role, exhaustion, and relief due to support from third persons. An example serves to illustrate how professionals can transfer the model into practice. DISCUSSION: The model offers ideal typical modes of behavior, allowing professionals to individually generate adequate care arrangements, thereby reflecting their heterogeneity.

Kenneth Gergen's concept of multi-being: an application to the nurse-patient relationship.

The nurse-patient relationship is of great significance for both nurses and patients. The purpose of this article is to gain an understanding of how the individual is constituted through a focus on the execution of the patient's and nurse's role in the joint relationship. The article represents a social-constructionist consideration using Kenneth Gergen's concept of multi-being. Gergen's notions of the self as a multi-being focuses on the individual's relational character through former relationships and social interactions. Gergen's concept is applied onto nurses and patients as individuals to gain an understanding of the broader institutional and social context of each role and their interactions within the nurse-patient relationship. The article focuses on the nurse-patient relationship in general with regard to specific challenges in the home care setting. Various demands and experiences from a myriad of past relationships merge as potential actions for nurses and patients during the forming of a relationship. Nurses as multi-beings see themselves confronted with guidelines and legal conditions, their own as well as the patients' expectations and the actual possible forming of a relationship in the light of daily nursing care. Patients as multi-beings experience an extended social environment that comprises the nurse-patient relationship while simultaneously having to cope with illness and increasing care dependency within their own homes. Discrepancies can be observed in the relationship with regard to the inherent human qualities, the demands of forming a relationship, and the actual relationship arising due to framework conditions.

[Chemotherapeutic side effects in colon cancer. A qualitative study from the point of view of those affected]. / Chemotherapeutische Nebenwirkungen bei Kolonkarzinom ­ eine qualitative Studie aus Betroffenensicht.

Chemotherapeutic side effects in colon cancer. A qualitative study from the point of view of those affected Abstract. Background: Colon cancer is a common disease in industrialized countries. The combination of surgery, chemo- and / or target therapies leads to physical, psychological and social changes in everyday life. Those affected are confronted with uncertainty, transience and loss of control. It is not clear which strategies are used by those affected to promote self-management. Objective: To identify coping strategies that individuals with stage III and IV colon cancer develop in dealing with the disease and its symptoms as well as the side effects of chemotherapy. Methods: A qualitative-descriptive design with guideline-based interviews was chosen. Data analysis was performed inductively by means of "initial coding" using four process steps for category development. Results: Eleven people affected report the loss of autonomy and control in everyday life. They experience their own finiteness and personal limits. Those affected develop strategies to compensate for the increasing loss of control and dependency. They look for expertise and try to maintain normality and everyday life. Their experience oscillates between "fear and hope". Conclusions: For people with colon cancer, hope is an important coping strategy. Person-centred counselling throughout the treatment process help people cope with their chronic condition.

Transitions as experienced by persons in palliative care circumstances and their families - a qualitative meta-synthesis.

BACKGROUND: When receiving palliative care, patients and their families experience altered life situations in which they must negotiate challenges in daily life, increased care and new roles. With limited time, they also experience emotional changes that relate to their uncertain future. Transitions experienced in such situations are often studied by focusing on individual aspects, which are synthesized in the following study. The aim was to conduct a qualitative meta-synthesis to explore the experiences patients and their families gain during transitions in palliative care circumstances. METHODS: A qualitative meta-synthesis was conducted following an inductive approach as proposed by Sandelowski and Barroso. Inclusion criteria were studies with adult persons in palliative situations and articles published in English or German. Relevant articles were identified by researching the Pubmed and Cinahl databases, as well as by hand searches in journals and reference lists for the period 2000-2015. The findings of each study were analyzed using initial coding, followed by axial and selective coding in this order. Consequently, a conceptual model was derived from the categories. RESULTS: In total 2225 articles were identified in the literature search. Finally, 14 studies were included after the selection process. The central phenomenon observed among palliative care patients and their families was maintaining normality during transitions. Transitions are initially experienced unconsciously until a crisis occurs and responsive actions are necessary, which encourages patients and families to perceive the situation consciously and develop strategies for its negotiation. Patients remain caught between hopelessness and valuing their remaining time alive. As the illness progresses, informal caregivers reprioritize and balance their roles, and after death, family members inevitably find themselves in changed roles. CONCLUSIONS: In palliative care situations, transitions are experienced differently by patients and their families in a constant phenomenon that oscillates between unconscious and conscious perceptions of transitions. The derived conceptual model offers an additional perspective to existing models and helps to clarify the phenomenon in practical settings. The study promotes a differentiated conceptual view of transitions and emphasizes patients' and families' perspectives.

Voluntary stopping of eating and drinking (VSED) as an unknown challenge in a long-term care institution: an embedded single case study.

BACKGROUND: Chronically ill persons experience conditions of life that can become unbearable, resulting in the wish to end their life prematurely. Relatives confronted with this wish experience ambivalence between loyalty to the person's desire to die and the fear of losing this person. Caring for a person during the premature dying process can be morally challenging for nurses. One way to end one's life prematurely is Voluntary Stopping of Eating and Drinking (VSED). METHODS: This embedded single case study explored the experiences of registered nurses (embedded units of analysis: ward manager, nursing manager, nursing expert) and relatives who accompanied a 49-year-old woman suffering from multiple sclerosis during VSED in a Swiss long-term care institution (main unit of analysis). By means of a within-analysis, we performed an in-depth analysis of every embedded unit of analysis and elaborated a central phenomenon for each unit. Afterwards, we searched for common patterns in a cross-analysis of the embedded units of analysis in order to develop a central model. RESULTS: The following central concept emerged from cross-analysis of the embedded units of analysis: As a way of ending one's life prematurely, VSED represents an unfamiliar challenge to nurses and relatives in the field of tension between one's personal attitude and the agents' concerns, fears and uncertainties. Particularly significant is the personal attitude, influenced on the one hand by one's own experiences, prior knowledge, role and faith, on the other hand by the VSED-performing person's age, disease and deliberate communication of the decision. Depending on the intention of VSED as either suicide or natural dying, an accepting or dismissing attitude evolves on an institutional and personal level. CONCLUSIONS: To deal professionally with VSED in an institution, it is necessary to develop an attitude on the institutional and personal level. Educational measures and quality controls are required to ensure that VSED systematically becomes an option to hasten death. As VSED is a complex phenomenon, it is necessary to include palliative care in practice development early on and comprehensively. There is a high need of further research on this topic. Particularly, qualitative studies and hypothesis-testing approaches are required.

Voluntary stopping of eating and drinking at the end of life - a 'systematic search and review' giving insight into an option of hastening death in capacitated adults at the end of life.

BACKGROUND: The terminally ill person's autonomy and control are important in preserving the quality of life in situations of unbearable suffering. Voluntary stopping of eating and drinking (VSED) at the end of life has been discussed over the past 20 years as one possibility of hastening death. This article presents a 'systematic search and review' of published literature concerned with VSED as an option of hastening death at the end of life by adults with decision-making capacity. METHODS: Electronic databases PubMed, EBSCOhost CINAHL and Ovid PsycINFO were systematically searched. Additionally, Google Scholar was searched and reference lists of included articles were checked. Data of the included studies were extracted, evaluated and summarized in narrative form. RESULTS: Overall, out of 29 eligible articles 16 were included in this review. VSED can be defined as an action by a competent, capacitated person, who voluntarily and deliberately chooses to stop eating and drinking with the primary intention of hastening death because of the persistence of unacceptable suffering. An estimated number of deaths by VSED was only provided by one study from the Netherlands, which revealed a prevalence of 2.1% of deaths/year (on average 2800 deaths/year). Main reasons for patients hastening death by VSED are: readiness to die, life perceived as being pointless, poor quality of life, a desire to die at home, and the wish to control the circumstances of death. The physiological processes occurring during VSED and the supportive care interventions could not be identified through our search. CONCLUSIONS: The included articles provide marginal insight into VSED for hastening death. Research is needed in the field of theory-building and should be based on qualitative studies from different perspectives (patient, family members, and healthcare workers) about physiological processes during VSED, and about the prevalence and magnitude of VSED. Based on these findings supportive care interventions for patients and family members and recommendations for healthcare staff should be developed and tested.

Nurses' experiences with the implementation of the Kinaesthetics movement competence training into elderly nursing care: a qualitative focus group study.

BACKGROUND: Supporting the movement of older people is one among the daily duties of geriatric nurses. Nurses exhibit a high risk of developing musculoskeletal disorders. Nurses should also possess interaction skills to support active participation of older people in their own daily activities. Kinaesthetics movement competence training claims to be a recommendable approach that benefits both nurses and nursing home residents. However, implementing Kinaesthetics into daily practice is a challenging process. AIM: This study aimed to examine nurses' experiences with regard to the implementation of Kinaesthetics movement competence training into a nursing home. DESIGN: Qualitative descriptive design with focus groups' interviews. METHOD: Thirty-two (three men) geriatric nurses from a Swiss nursing home who participated first time in Kinaesthetics training were interviewed in three focus groups (average 79 minutes). Interviews were analysed using inductive coding, categorisation and abstraction. The ethics committees of the cantons Basel-Stadt and Basel-Land (Switzerland) approved the study on 16 September 2010 (reference no. 224/10). FINDINGS: Nurses' experiences with the implementation of Kinaesthetics were divided into two categories: nurses' attitudes with regard to the implementation of Kinaesthetics and nurses experience of Kinaesthetics with regard to integration into daily practice. Even though the participants showed a positive attitude towards the design and structure of the Kinaesthetics training, its implementation into daily practice initially posed a noticeable challenge for the participating nurses. The results indicate that various factors exist that may either promote or impede the implementation of Kinaesthetics in nursing. CONCLUSION: The successful implementation of Kinaesthetics can be promoted by the structural integration of the concept at various levels of nursing home as well as complementary supporting measures. Regular professional support and education after Kinaesthetics training appears to be a necessary approach to sustainably implement the concepts into daily nursing practice.

[Trapped in the body - lived experience and coping of individuals having Parkinson and their relatives with changed movement pattern caused by the disease]. / Im Körper gefangen sein - Das Erleben und die Bewältigung der krankheitsbedingt veränderten Bewegungsmuster von Menschen mit Parkinson und ihren Angehörigen.

People with Parkinson's disease suffer from various symptoms. Changed movement patterns frequently represent the prevailing symptom experience and influence the everyday life of the affected persons and their relatives. This qualitative study explores how persons with Parkinson's disease and their relatives experience the changed movement patterns and how they manage the consequential problems in their daily life. Eight persons with Parkinson's disease and six partners were interviewed. The interviews were analysed by means of content analysis according to Mayring. The qualitative analysis resulted in two main categories: "effects on the changed movement patterns on everyday life" and "coping skills for dealing with changed movement patterns". The experience of the affected person can be characterised by "being trapped in the body" as well as by a constantly slowing down daily life. The coping strategies are diverse, but all respondents seek to maintain mobility. Partners naturally support the affected persons and take over many tasks. This is associated with elevated distress and the feeling of having to be permanently present. Various coping strategies have to be promoted and included in daily care for people with Parkinson's disease. Consideration of the individual experience of the changed movement patterns is very important in the development of strategies and also the support of the affected persons and relatives that they can keep up with their movements.

Understanding Employee Voice Behavior Through the Use of Digital Voice Channel in Long-Term Care: Protocol for an Embedded Multiple-Case Study.

BACKGROUND: Specific challenges in the health care sector, such as hierarchical structures, shortages of nursing staff, and high turnover of nursing staff, can be addressed by a change process of organizational culture into shared governance. Data from business organizations show that the use of digital voice channels provides employee voice. This approach makes concrete the opportunity for employees to raise their voices by answering surveys and making comments in an anonymous forum, which subsequently positively influences staff turnover and sick leave. Since there is no clear understanding of how a digital voice channel can be used in long-term care to address employee voice, a research gap has been identified. OBJECTIVE: The purpose of ADVICE (Understanding Employee Voice Behavior; the acronym for this study) is to understand how the use of a digital voice channel performs in long-term care (residential long-term care and home care facilities). The aim of this study is to understand how the digital voice channel can support staff in making their voices heard and to see what managers need to use the voice channel to change the work environment. METHODS: An embedded multiple-case study will be used to explore the experiences of 2 health care providers who have already implemented a digital voice channel. ADVICE is organized into two main phases: (1) a scoping review and (2) an embedded multiple-case study. For this purpose, focus group interviews with employees, discursive-dialogical interviews with managers, meeting protocols, and data from the digital voice channel will be analyzed. First, all units of analysis from every embedded unit will be separately analyzed and then comprehensively analyzed to obtain a case vignette from every embedded unit (within-analysis). In the second stage, the analyzed data from the embedded units will be compared with each other in a comparative analysis (cross-analysis). RESULTS: The results will provide insight into how digital voice channels can be used in long-term care to address employee voice. We expect to find how the digital voice channel can empower nurses to speak up and, consequently, create a better work environment. Data collection began in August 2023, and from a current perspective, the first results are expected in summer 2024. CONCLUSIONS: In summary, the results may help to better understand the use of a digital voice channel in the health care sector and its transformative potential for leadership. At the organizational level, research can help to improve the attractiveness of the workplace by understanding how to give employees a voice. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/48601.

Self-Assessment Instruments for Supporting Family Caregivers: An Integrative Review.

Family caregivers take on a variety of tasks when caring for relatives in need of care. Depending on the situation and the intensity of care, they may experience multidimensional burdens, such as physical, psychological, social, or financial stress. The aim of the present study was to identify and appraise self-assessment instruments (SAIs) that capture the dimensions of family caregivers' burdens and that support family caregivers in easily identifying their caregiving role, activities, burden, and needs. We performed an integrative review with a broad-based strategy. A literature search was conducted on PubMed, Google Scholar, Google, and mobile app stores in March 2020. After screening the records based on the eligibility criteria, we appraised the tools we found for their usefulness for family care and nursing practice. From a total of 2654 hits, 45 suitable SAIs from 274 records were identified and analyzed in this way. Finally, nine SAIs were identified and analyzed in detail based on further criteria such as their psychometric properties, advantages, and disadvantages. They are presented in multi-page vignettes with additional information for healthcare professionals. These SAIs have proven useful in assessing the dimensions of caregiver burden and can be recommended for application in family care and nursing practice.

[Voluntary Refusal of Food and Fluid in palliative care: a mapping literature review]. / Freiwilliger Verzicht auf Nahrung und Flüssigkeit in der Palliative Care: ein Mapping Review.

Voluntary Refusal of Food and Fluid (VRFF) is one possibility for patients in palliative situations to hasten death and avoid further suffering. By means of a mapping literature review this article describes the medical, nursing, ethical and legal perspective of care for people who wish to hasten death using VRFF. The results show that the wish to die is affected by psychological, social, spiritual and physical factors. VRFF is a little-known, legal and independently viable method to hasten death. Reducing fluid intake to 40 ml daily, the dying process takes one to three weeks. VRFF can be regarded as a natural death, foregoing treatment or as suicide. In contrast to physician assisted suicide or euthanasia, patients dying by VRFF experience a "natural" dying process and the decision is reversible in the first few days. As authority to act lies with the person wishing to die professionals and family caring for the dying are practicing palliative care, as opposed to assisted suicide or euthanasia. Professionals and family involved in the decision-making process are confronted with various ethical problems. Further research concerning VRFF and its implications for practice is necessary.

Integrated care models in Swiss primary care: An embedded multiple case study.

RATIONALE, AIMSAND OBJECTIVES: Healthcare systems are confronted with a rising number of patients with chronic conditions and complex care needs, requiring the development of new models of coordinated, patient-centred care. In this study, we aimed to describe and compare a range of new models of care recently implemented in primary care in Switzerland, as well as to gain insight into the type of coordination or integration implemented, the strengths and weaknesses of each model and the challenges they face. METHOD: We used an embedded multiple case study design to describe in-depth a series of current Swiss initiatives that specifically aim to improve care coordination in primary care. For each model, documents were collected, a questionnaire was administered and semistructured interviews with key actors were conducted. A within-case analysis followed by a cross-case analysis were performed. Based on the Rainbow Model of Integrated Care framework, similarities and differences between the models were highlighted. RESULTS: Eight integrated care initiatives were included in the analysis, representing three types of models: independent multiprofessional GP practices, multiprofessional GP practices/health centres that are part of larger groups and regional integrated delivery systems. Recognized effective activities and tools to improve care coordination, such as multidisciplinary teams, case manager involvement, use of electronic medical records, patient education and use of care plans, were implemented by at least six of the eight initiatives studied. The main obstacles to the implementation of integrated care models were the inadequate Swiss reimbursement policies and payment mechanisms and the desire of some healthcare professionals to protect their territory in a context where new roles are emerging. CONCLUSION: The integrated care models implemented in Switzerland are promising; nevertheless, financial and legal reforms must be introduced to promote integrated care in practice.

Development of a tool for palliative care needs assessment and intervention: mixed methods research at a Swiss tertiary oncology clinic.

BACKGROUND: Palliative care interventions improve quality-of-life for advanced cancer patients and their caregivers. The frequency and quality of service provision could be improved by a clinical tool that helps oncology professionals to assess unmet needs for palliative care interventions and to structure the interventions delivered. This paper aims to answer the following research question: what do oncology professionals and cancer patients view as important elements in a clinical tool for assessing unmet palliative care needs? Based on the feedback from professionals and patients, we developed and refined an intervention-focused clinical tool for use in cancer care. METHODS: This study used a prospective convergent mixed methods design and was carried out at a single tertiary hospital in Switzerland. Healthcare professionals participated in focus groups (n=29) and a Delphi survey (n=73). Patients receiving palliative care were interviewed (n=17). Purposive sampling was used to achieve maximal variation in participant response. Inductive content analysis and descriptive statistics were used to analyze focus group discussions, open-ended survey questions and interview data. Descriptive statistics were used for analyzing quantitative survey items and interviewee characteristics. RESULTS: Focus groups and Delphi surveys showed that seven key palliative care interventions were important to oncology professionals. They also valued a tool that could be used by doctors, nurses, or other professionals. Participants did not agree about the best timepoint for assessment. Two versions of a pilot clinical tool were tested in patient interviews. Interviews highlighted the divergent patient needs that must be accommodated in clinical practice. Patients provided confirmation that a clinical tool would be helpful to them. CONCLUSIONS: This paper reports on research carried out to understand what elements are most important in a tool that helps oncology professionals to identify patients' unmet needs and provide tailored palliative care interventions. This study demonstrated that professionals and patients alike are interested in a clinical tool. Responses from oncology healthcare professionals helped to identify relevant palliative care interventions, and patients provided constructive input used in designing a tool for use in clinical interactions.