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.

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.

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.

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.

"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.

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.

Evaluation of a newly developed flipped-classroom course on interprofessional practice in health care for medical students.

Interprofessional education is expected to promote collaborative practice and should therefore be included in health professionals' curricula. Reports on interprofessional curricular development and its evaluation are rare. We therefore undertook a comprehensive quantitative and qualitative evaluation of a new, mandatory course on interprofessional collaboration for medical students during their third year of the Bachelor of Medicine study programme. The newly developed and implemented course spans over six weeks and was designed in a hybrid, flipped-classroom format. It incorporates experience- and case-based learning as well as interactions with other health professionals. Each student completes an eLearning and a clinical workshadowing individually before attending the - due to the pandemic - virtual live lectures. To assess quality and usefulness of teaching-learning formats and course structure to learn about interprofessional collaboration and to develop interprofessional competencies and identity, a quantitative and qualitative evaluation was performed with more than 280 medical students and 26 nurse educators from teaching hospitals using online surveys (open & closed-ended format). Data were analyzed descriptively and using content analysis processes. Students appreciated the flipped-classroom concept, the real-world case-based learning scenarios with interprofessional lecturer teams, and the possibility of an experience-based learning opportunity in the clinical setting including interaction with students and professionals from other health professions. Interprofessional identity did not change during the course. Evaluation data showed that the course is a promising approach for teaching-learning interprofessional competencies to medical students. The evaluation revealed three factors that determined the success of this course, namely, a flipped-classroom concept, the individual workshadowing of medical students with another health professional, mainly nurses, and live sessions with interprofessional teaching-learning teams. The course structure and teaching-learning methods showed potential and could serve as a template for interprofessional course development in other institutions and on other course topics.

A qualitative study on the perception of infection prevention and control measures among healthcare workers without patient contact during the SARS-CoV-2 pandemic.

We conducted a qualitative interview-based study to examine the perception of infection prevention and control (IPC) measures implemented during the COVID-19 pandemic among healthcare workers (HCWs) without patient contact in a tertiary academic care center. We compared these findings to those derived from interviews of HCWs with patient contact from the same institution using the same study design. The following main four themes were identified: (1) As for HCWs with patient contact, transparent communication strongly contributes to employees' sense of security. (2) Information on personal protective equipment (PPE) usage needs to be stratified according to different educational backgrounds and professions. (3) Consistency of IPC measures was positively perceived yet a desire for constant reminders to counteract the fatigue effect played a more significant role for HCWs without patient contact. (4) As compared to HCWs with patient contact, HCWs without patient contact preferred uniform digital training resources rather than more face-to-face training. This study shows that the needs of HCWs with and without patient contact differ and need to be considered in pandemic management.

Psychosocial Impact of Multiple Sclerosis on Couples: Relationship Between Anxiety, Depression, and Stress Communication of Both Partners.

BACKGROUND: Multiple Sclerosis (MS) influences the relationships of affected couples, whereby the disease-related stress can lead to a deterioration of communication. This, in turn, makes it difficult for the couples to cope successfully. To support couples affected by MS for coping with the disease, the first step in developing an intervention is to examine whether this situation also applies in the Swiss context. METHODS: A cross-sectional study was conducted to examine the psychosocial situation of couples where 1 partner has MS, regarding anxiety, depression, and stress communication. The Hospital Anxiety and Depression Scales (HADS-D) were used to assess depression and anxiety in both partners of 462 couples, while their stress communication was assessed using questions formulated according to the corresponding subscales of the Dyadic Coping Inventory (DCI). A comparison of the assessments of both partners was performed using the Mann-Whitney U test. Furthermore, the relationship between their stress communication and the severity of anxiety and depression was calculated using Spearman's rank correlation. RESULTS: Life partners rated the stress communication of their partners with MS significantly higher than the partners with MS themselves. Moreover, life partners could not distinguish whether their partners with MS expressed a sense of burden or a need for support. These findings indicate that the stress communication skills of both partners show potential for optimization. Health status regarding depression and anxiety revealed the following: 34.2% of the persons with MS and 34% of their life partners experienced clinically high levels of anxiety (HADS-D/A ≥ 8.0), and 31.4% of those with MS and 20.2% of the life partners showed clinically high levels of depression (HADS-D/D ≥ 8.0). CONCLUSION: In the Swiss context, psychosocial intervention, which includes communication training for both partners, might be effective in improving the health status regarding depression and anxiety as well as the stress communication.

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.

"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.

A qualitative study on safety perception among healthcare workers of a tertiary academic care center during the SARS-CoV-2 pandemic.

BACKGROUND: Protecting healthcare workers (HCWs) from exposure to SARS-CoV-2 during patient care is central to managing the current pandemic. Higher levels of trust in personal protective equipment (PPE) and infection prevention and control (IPC) strategies have been previously related to lower levels of emotional exhaustion, yet little is known on how to achieve such a perception of safety. We thus sought to identify institutional actions, strategies and policies related to HCWs' safety perception during the early phase of the pandemic at a tertiary care center in Switzerland by interviewing HCWs from different clinics, professions, and positions. METHODS: For this qualitative study, 36 face-to-face semi-structured interviews were performed. Interviews were based on a guide that addressed the perception of institutional strategies and policies during the first phase of the pandemic in March 2020. The participants included doctors (n = 19) and nurses (n = 17) in senior and non-senior positions from eight clinics in the University Hospital Basel, Switzerland, all involved in patient care. All interviews were audio-recorded and transcribed verbatim. Data were analyzed using qualitative content analysis and organized using MAXQDA (VERBI Software GmbH, Berlin). FINDINGS: Five recurring themes were identified to affect HCWs' perception of their safety during the SARS-CoV-2 pandemic: (1) transparency and clarity of information, (2) communication on the availability of PPE (with the provision of information alone increasing the feeling of safety even if supplies of PPE were reported as low), (3) uniformity and consistency of guidelines, (4) digital resources to support face-to-face teaching (although personal information transfer is still being considered superior in terms of strengthening safety perception) and (5) support and appreciation for the work performed. CONCLUSIONS: This study identifies institutional policies and actions influencing HCWs' safety perception during the first wave of the COVID-19 pandemic, the most important of which is the factor of transparent communication. This knowledge reveals potential areas of action critical to improving preparedness and management in hospitals faced with an infectious disease threat.

Family caregivers' advocacy in voluntary stopping of eating and drinking: A holistic multiple case study.

AIM: To gain insight into the experiences of family caregivers who accompanied a loved one during voluntary stopping of eating and drinking and to identify similarities and differences between cases of voluntary stopping of eating and drinking to develop a conceptual model. DESIGN: A qualitative holistic multiple case study. METHODS: We conducted narrative interviews with family caregivers (N = 17). We first analysed them inductively within the cases, followed by a cross-case analysis to merge the experiences into a conceptual model. RESULTS: Family caregivers who could accept their loved one's wish to die stood up for the last will, especially when the cognitive abilities declined. They had to take on the role of an advocate to protect their self-determination from others who tried to interrupt the process. In their advocacy, they found themselves constantly in moral discrepancies. Usually without support, they provided nursing care until death. The subsequent processing phase was characterized by evaluating the dying situation and placing voluntary stopping of eating and drinking in their value scheme.

Professional Care Experiences of Persons With Suicidal Ideation and Behavior: Model Development Based on a Qualitative Meta-Synthesis.

BACKGROUND: Health care professionals (HCPs) are challenged in caring for persons with suicidal ideation or behavior. For affected persons, professional care is essential, and being interviewed about their experiences can be stressful. The experiences of persons ideating or attempting suicide are essential to designing eHealth products to support them in crises and provide continuous care. OBJECTIVE: This study aimed to synthesize published qualitative research about how persons with suicidal thoughts or behavior experience inpatient or outpatient care. A model will be derived from the meta-synthesis to guide HCPs in their work with affected persons and provide a thorough needs assessment for eHealth development. METHODS: A qualitative meta-synthesis was conducted using an inductive approach, as proposed by Sandelowski and Barroso. The inclusion criteria were studies in English and German that dealt with persons who ideated or attempted suicide. Relevant articles were identified by searching the PubMed and Cinahl databases and by hand searching relevant journals and reference lists. The findings of each study were analyzed using initial and axial coding, followed by selective coding. Finally, a conceptual model was derived. RESULTS: In total, 3170 articles were identified in the systematic literature search. Articles were screened independently by 2 researchers based on the eligibility criteria. Finally, 12 studies were included. The central phenomenon observed among persons ideating or attempting suicide is their process from feeling unanchored to feeling anchored in life again. During inpatient and outpatient care, they experience being dependent on the skills and attitudes of HCPs. While helpful skills and attitudes support persons ideating or attempting suicide to reach their feeling of being anchored in life again, adverse interactions are experienced negatively and might lead to prolonging or maintaining the feeling of being unanchored in life. CONCLUSIONS: The study promotes a differentiated view of the experiences of persons ideating or attempting suicide. The derived conceptual model can guide HCPs in their work with affected persons to support affected persons during their recovery. Moreover, the conceptual model is useable as a springboard to develop eHealth solutions for crisis situations and long-term care.

Perspectives of people accompanying a person during voluntary stopping eating and drinking: a convergent mixed methods study.

BACKGROUND: Voluntary stopping eating and drinking (VSED) is an option for people wishing to bring about premature death. In Switzerland, VSED is considered a controversial action at the end of life in the guidelines for "Management of dying and death," which states that the decision to support or oppose VSED must be made individually by health care professionals; so far there are no instructions for action. The aim of this research was to explore the experiences of people who play an important role in VSED accompaniment, and to explain how the people involved in the process deal with VSED. METHODS: This convergent mixed methods study included a national survey (n=1,681) and five focus group interviews (n=47). Data integration was conducted using the four-stage pillar integration process. RESULTS: Given Swiss society interest, VSED has already established itself in the health system without the institutions having addressed the issue, whereupon health professionals make individual decisions when a person willing to die comes to them with a VSED wish. Health professionals are open to VSED, but are also ambivalent and would like to know more about it before being confronted with a VSED case. CONCLUSIONS: In Switzerland, VSED has become a rare but desired option for ending life prematurely. While health professionals are already being confronted with the phenomenon, there is a lack of discussion at the level of health institutions about how to deal with it.

Experiences, Personal Attitudes, and Professional Stances of Swiss Health Care Professionals Toward Voluntary Stopping of Eating and Drinking to Hasten Death: A Cross-Sectional Study.

CONTEXT: Voluntary stopping of eating and drinking (VSED) is the self-determined decision of an individual with the decision-making capacity to cause premature death. During the course of VSED, the person is dependent on the support of relatives and health professionals. To date, little is known of the attitudes of Swiss health professionals on this topic. OBJECTIVES: The objective of this study was to assess the experiences, personal attitudes, and professional stances of Swiss health care professionals toward VSED. METHODS: We conducted a nationwide cross-sectional survey by questioning family physicians and the heads of outpatient care and long-term care (e.g., nursing directors, institute directors, or head nurses) about VSED (n = 1681; response rate 40.1%). Descriptive data analysis and hypothesis testing (occupational group, age, sex, professional years, VSED experience, and regions) were subsequently conducted. RESULTS: Individuals who are willing to die are granted the right to professional accompaniment during VSED (agreement 97.8%), and their death is usually classified as a natural form of dying (63.5%) and only rarely (5.4%) as suicide. Family physicians have significantly more moral concerns during accompaniment compared with the heads of outpatient and long-term care (P < 0.001). CONCLUSION: Swiss health care professionals support the autonomy and self-determination of patients, which is also reflected in their positive attitude toward VSED, even if they have moral reservations when accompanying patients.

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.

Family physicians' perspective on voluntary stopping of eating and drinking: a cross-sectional study.

OBJECTIVE: We aimed to determine how often patients who choose voluntary stopping of eating and drinking (VSED) are accompanied by Swiss family physicians, how physicians classify this process, and physicians' attitudes and professional stance toward VSED. METHODS: We conducted a cross-sectional study between August 2017 and July 2018 among 751 practicing family physicians in Switzerland (response rate 74%; 70.7% men; average age 58 (±9) years). We used a standardized evidence-based questionnaire for the survey. RESULTS: VSED is well-known among family physicians (81.9%), and more than one-third (42.8%) had accompanied at least one patient during VSED. In 2017, 1.1% of all deaths that occurred in Swiss nursing homes or in a private home were owing to VSED. This phenomenon was classified as a natural dying process (59.3%), passive euthanasia (32.0%), or suicide (5.3%). CONCLUSIONS: Although about one in three Swiss family physicians have accompanied a person during VSED, family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process. Further training and development of practice recommendations are needed to achieve more standardized accompaniment of VSED.International Registered Report Identifier: DERR1-10.2196/10358.

Experiences of relatives with outpatient palliative care: a cross-sectional study.

AIM: The authors aimed to evaluate the experiences of the relatives of dying people, both in regard to benefits and special needs, when supported by a mobile palliative care bridging service (MPCBS), which exists to enable dying people to stay at home and to support patients' relatives. DESIGN: A cross-sectional survey. METHODS: A standardised survey was performed, asking 106 relatives of dying people about their experiences with the MPCBS (response rate=47.3%). Descriptive statistics were analysed using SPSS 23. FINDINGS: Many relatives (62.5%) reported that their dying relations when discharged from a facility to stay at home were not symptom-free. The MPCBS helped relatives maintain home care, and this was reported to be helpful. Support provided by the MPCBS made it easier for 77.6% of relatives to adjust care as soon as situations changed, and helped ensure that symptoms could be better controlled, at least for 68.2% of relatives. Younger relatives felt more encouraged by the MPCBS to care for their relatives dying at home.