Contextual determinants of guideline-based family support during end-of-life cancer care and subsequent bereavement care: A cross-sectional survey of registered nurses.

PURPOSE: In end-of-life cancer care, 10-20% of bereaved family members experience adverse mental health effects, including prolonged grief disorder. Despite great efforts, evidence-based recommendations to support their grieving process and well-being are often not successfully adopted into routine clinical care. This study identified facilitators and barriers using implementation science methodology. METHODS: 81 registered nurses working in cancer care from four hospitals and three home care services in Switzerland assessed their current family support practices in end-of-life care and bereavement care. They then assessed organisational attributes of their institution and their own individual characteristics and skills regarding literature-based factors of potential relevance. Facilitators and barriers to guideline-based family support were determined using fractional logistic regression. RESULTS: Service specialisation in palliative care, a culture that supports change, the availability of family support guidelines, billing/reimbursement of bereavement support services, and individual knowledge of family support and skill were systematically associated with higher adoption of guideline-based family support practices. Lack of privacy with families and insufficient training acted as significant barriers. CONCLUSIONS: While several potentially relevant factors have emerged in the literature, certain organisational and individual determinants actually empirically predict guideline-based family support according to nurses in end-of-life cancer care, with some determinants having much stronger implications than others. This provides crucial guidance for focussing quality improvement and implementation efforts through tailored strategies, especially with scarce resources. Furthermore, adoption is lower in bereavement care than in end-of-life care, suggesting a particular need for supportive organisational cultures including specific training and billing/reimbursement options.

End-of-life and bereavement support to families in cancer care: a cross-sectional survey with bereaved family members.

BACKGROUND: Losing a close other to cancer is an incisive experience that occurs after a long course of illness and intense family caregiving. Despite an evident need for family engagement and support and guidance on this, patients and family members may not receive the attention and support they need when a family unit is experiencing a disruption by death. A clear understanding of the quality of care that is currently provided and its ability to address family needs is necessary to improve end-of-life and bereavement support to families affected by cancer. The purpose of this study is to investigate the quality of support of end-of-life and bereavement care to families, their (un)met needs, grief experiences, and self-perceived health outcomes. METHODS: A multi-center, cross-sectional observational survey study with family members (n = 35) whose close other died of cancer in a health institution or their own home in German-speaking Switzerland. RESULTS: Bereaved family members were mostly satisfied with end-of-life care. Information on the grief process and services, and acknowledgment of their grief was experienced as helpful. Most coped with their grief drawing on family resources and exhibited resilience, but they reported unmet needs in relation to family togetherness and caregiving. CONCLUSION: This study with a small number of family members indicates that support provided to families across settings and illness trajectories is perceived as helpful, with specific needs related to family support. The findings suggest that improvements should focus on ensuring care that addresses the family as a unit and enables togetherness, mutual reflection, meaningful relationships, preparedness for death, resilience, and benefit-finding. PROTOCOL REGISTRATION: https://osf.io/j4kfh .

Adoption of evidence-based end-of-life and bereavement support to families in cancer care: A contextual analysis study with health professionals.

AIMS: To investigate the level of adoption of evidence-based family engagement and support during end-of-life cancer care and subsequent bereavement and its contextual facilitators and barriers from health professionals' perspectives, and to explore differences between professional groups. DESIGN: Contextual analysis using an online cross-sectional survey. METHODS: This study was conducted in four Swiss hospitals and three home care oncology and palliative care services. Non-parametric testing was used to investigate the level of adoption and differences between nurses, physicians, occupational- and physiotherapists and psychosocial professionals (chaplains, onco-psychologists and social workers). The STROBE checklist for cross-sectional studies was followed. RESULTS: The majority of the 111 participating health professionals were nurses. Adoption was statistically significantly higher during end-of-life care than bereavement, with nurses and physicians reporting higher levels than the other professional groups. Guidance on end-of-life family care was available in about half of the cases, in contrast to a quarter for bereavement care. Self-perceived knowledge, skills and attitudes were moderate to high, with nurses and physicians reporting higher levels than others, except for general skills in working with families. Organisational structures were experienced as rather supportive, with the psychosocial group appraising the organisational context as significantly less conducive to fully implementing end-of-life and bereavement care than others, particularly during the end-of-life phase. CONCLUSION: Evidence-based family engagement and support were better adopted during end-of-life care than bereavement. Overall, nurses and physicians felt better enabled to care for families compared to other professional groups. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. PROTOCOL REGISTRATION: https://osf.io/j4kfh. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation and quality improvement efforts should focus particularly on the bereavement phase and be tailored to professional groups. IMPACT: The findings show that evidence-based family engagement and support practices during end-of-life were rather well adopted in contrast to subsequent bereavement care, with nurses and physicians better enabled than other professionals to provide care. A better understanding of health professionals' contributions and roles in family care is important to build interprofessional capacity for evidence-based end-of-life and bereavement support. REPORTING METHOD: The STROBE checklist for reports of cross-sectional studies was followed (von Elm et al., 2007).

Implementation of a multicomponent family support intervention in adult intensive care units: study protocol for an embedded mixed-methods multiple case study (FICUS implementation study).

BACKGROUND: The implementation of complex interventions is considered challenging, particularly in multi-site clinical trials and dynamic clinical settings. This study protocol is part of the family intensive care units (FICUS) hybrid effectiveness-implementation study. It aims to understand the integration of a multicomponent family support intervention in the real-world context of adult intensive care units (ICUs). Specifically, the study will assess implementation processes and outcomes of the study intervention, including fidelity, and will enable explanation of the clinical effectiveness outcomes of the trial. METHODS AND ANALYSIS: This mixed-methods multiple case study is guided by two implementation theories, the Normalisation Process Theory and the Consolidated Framework for Implementation Research. Participants are key clinical partners and healthcare professionals of eight ICUs allocated to the intervention group of the FICUS trial in the German-speaking part of Switzerland. Data will be collected at four timepoints over the 18-month active implementation and delivery phase using qualitative (small group interviews, observation, focus group interviews) and quantitative data collection methods (surveys, logs). Descriptive statistics and parametric and non-parametric tests will be used according to data distribution to analyse within and between cluster differences, similarities and factors associated with fidelity and the level of integration over time. Qualitative data will be analysed using a pragmatic rapid analysis approach and content analysis. ETHICS AND DISSEMINATION: Ethics approval was obtained from the Cantonal Ethics Committee of Zurich BASEC ID 2021-02300 (8 February 2022). Study findings will provide insights into implementation and its contribution to intervention outcomes, enabling understanding of the usefulness of applied implementation strategies and highlighting main barriers that need to be addressed for scaling the intervention to other healthcare contexts. Findings will be disseminated in peer-reviewed journals and conferences. PROTOCOL REGISTRATION NUMBER: Open science framework (OSF) https://osf.io/8t2ud Registered on 21 December 2022.

[Civilian Service to Support Informal/Family Caregivers at Home: Acceptance and Need in Switzerland]. / Zivildienstleistende zur Unterstützung pflegender Angehöriger zu Hause ­ Akzeptanz und Bedarf in der Schweiz.

BACKGROUND: There is an unmet and increasing need for informal/family care for older adults, the sick, and those with disabilities living in private households. Alternative civilian services provided by so-called "zivis" could make an important contribution to supporting informal caregivers. However, its acceptance and the actual demand by informal caregivers and care recipients are not well understood. METHOD: A total of 314 informal caregivers and 78 care recipients were surveyed about their potential demand for a zivi and their preferences regarding qualifications of zivis, kind of service expected, working time, service duration, as well as willingness to pay. We used descriptive and inferential statistical methods for the analysis. RESULTS: Informal caregivers (87%) and care recipients (90%) deemed zivis beneficial in private households, and acceptance increased with the general need for care. For most respondents, the qualifications of the zivis were not their first priority, but rather a "pleasant personality". Help with household chores and transportation assistance were a important for the vast majority of respondents, help with personal hygiene for 40% (caregivers) and 35% (care recipients), respectively. CONCLUSION: Zivis could serve as an important pool of carers for persons in private households with impaired ability to carry on with activities of daily life caused by ill health, especially cognitive and physical decline. They can offer help in many areas of living, but continued and reliable assistance is important.

A multicomponent family support intervention in intensive care units: study protocol for a multicenter cluster-randomized trial (FICUS Trial).

BACKGROUND: Family members of critically ill patients face considerable uncertainty and distress during their close others' intensive care unit (ICU) stay. About 20-60% of family members experience adverse mental health outcomes post-ICU, such as symptoms of anxiety, depression, and posttraumatic stress. Guidelines recommend structured family inclusion, communication, and support, but the existing evidence base around protocolized family support interventions is modest and requires substantiation. METHODS: To test the clinical effectiveness and explore the implementation of a multicomponent, nurse-led family support intervention in ICUs, we will undertake a parallel, cluster-randomized, controlled, multicenter superiority hybrid-type 1 trial. It will include eight clusters (ICUs) per study arm, with a projected total sample size of 896 family members of adult, critically ill patients treated in the German-speaking part of Switzerland. The trial targets family members of critically ill patients with an expected ICU stay of 48 h or longer. Families in the intervention arm will receive a family support intervention in addition to usual care. The intervention consists of specialist nurse support that is mapped to the patient pathway with follow-up care and includes psycho-educational and relationship-focused family interventions, and structured, interprofessional communication, and shared decision-making with families. Families in the control arm will receive usual care. The primary study endpoint is quality of family care, operationalized as family members' satisfaction with ICU care at discharge. Secondary endpoints include quality of communication and nurse support, family management of critical illness (functioning, resilience), and family members' mental health (well-being, psychological distress) measured at admission, discharge, and after 3, 6, and 12 months. Data of all participants, regardless of protocol adherence, will be analyzed using linear mixed-effects models, with the individual participant as the unit of inference. DISCUSSION: This trial will examine the effectiveness of the family support intervention and generate knowledge of its implementability. Both types of evidence are necessary to determine whether the intervention works as intended in clinical practice and could be scaled up to other ICUs. The study findings will make a significant contribution to the current body of knowledge on effective ICU care that promotes family participation and well-being. TRIAL REGISTRATION: ClinicalTrials.gov NCT05280691 . Prospectively registered on 20 February 2022.

[Alternative civilian service as a "helping hand" in private households - potentials for reconciling work and informal care]. / Zivildienstleistende als "helfende Hände" im Privathaushalt.

Alternative civilian service as a "helping hand" in private households - potentials for reconciling work and informal care Abstract. Background: Informal caregivers (or family caregivers) are considered as the backbone of unpaid care in private households. As they are increasingly often employed, new sources of aid in domestic long-term care settings are needed. The Swiss Federal Council therefore mandated the Swiss Federal Office of Civilian Service to commission a study of how civil servants would be accepted as aids by informal caregivers and which services the latter would use. Aim: The results contribute to the development of alternative civilian services in Switzerland based on empirical evidence from informal caregivers who are employed at the same time. Methods: 158 informal caregivers from three language regions of Switzerland who were employed at the time answered a standardized quantitative survey. Their data was analyzed by descriptive and inferential statistical methods (hypothesis testing, regression). Results: Situations in which the cared-for person had cognitive limitations (29 %) constituted for the majority of the working time of civil servants as desired by informal caregivers (56 %) and were associated with increased willingness to pay. Support with caregiving tasks of personal hygiene and transport services were frequently desired, and the underlying settings required above-average intensity of support. Conclusions: There is a need for aid along the entire span of informal caregivers' working life. Reconcilability of employment and informal long-term care is dependent on a well-functioning, flexible network, which cannot be ensured by the labor market alone.

Lessons From the First Wave of COVID-19: Work-Related Consequences, Clinical Knowledge, Emotional Distress, and Safety-Conscious Behavior in Healthcare Workers in Switzerland.

The coronavirus disease (COVID-19) imposes an unusual risk to the physical and mental health of healthcare workers and thereby to the functioning of healthcare systems during the crisis. This study investigates the clinical knowledge of healthcare workers about COVID-19, their ways of acquiring information, their emotional distress and risk perception, their adherence to preventive guidelines, their changed work situation due to the pandemic, and their perception of how the healthcare system has coped with the pandemic. It is based on a quantitative cross-sectional survey of 185 Swiss healthcare workers directly attending to patients during the pandemic, with 22% (n = 40) of them being assigned to COVID-19-infected patients. The participants answered between 16th June and 15th July 2020, shortly after the first wave of COVID-19 had been overcome and the national government had relaxed its preventive regulations to a great extent. The questionnaire incorporated parts of the "Standard questionnaire on risk perception of an infectious disease outbreak" (version 2015), which were adapted to the case of COVID-19. Clinical knowledge was lowest regarding the effectiveness of standard hygiene (p < 0.05). Knowledge of infectiousness, incubation time, and life-threatening disease progression was higher, however still significantly lower than regarding asymptomatic cases and transmission without physical contact (p < 0.001). 70% (95%-confidence interval: 64-77%) of the healthcare workers reported considerable emotional distress on at least one of the measured dimensions. They worried significantly more strongly about patients, elderly people, and family members, than about their own health (p < 0.001). Adherence to (not legally binding) preventive guidelines by the government displayed patterns such that not all guidelines were followed equally. Most of the participants were faced with a lack of protective materials, personnel, structures, processes, and contingency plans. An increase in stress level was the most prevalent among the diverse effects the pandemic had on their work situation. Better medical equipment (including drugs), better protection for their own mental and physical health, more (assigned) personnel, more comprehensive information about the symptoms of the disease, and a system of earlier warning were the primary lessons to be learned in view of upcoming waves of the pandemic.

How much does the treatment of each major disease cost? A decomposition of Swiss National Health Accounts.

In most countries, surprisingly little is known on how national healthcare spending is distributed across diseases. Single-disease cost-of-illness studies cover only a few of the diseases affecting a population and in some cases lead to untenably large estimates. The objective of this study was to decompose healthcare spending in 2011, according to Swiss National Health Accounts, into 21 collectively exhaustive and mutually exclusive major disease categories. Diseases were classified following the Global Burden of Disease Study. We first assigned the expenditures directly mapping from National Health Accounts to the 21 diseases. The remaining expenditures were assigned based on diagnostic codes and clues contained in a variety of microdata sources. Expenditures were dominated by non-communicable diseases with a share of 79.4%. Cardiovascular diseases stood out with 15.6% of total spending, followed by musculoskeletal disorders (13.4%), and mental and substance use disorders (10.6%). Neoplasms (6.0% of the total) ranked only sixth, although they are the leading cause of premature death in Switzerland. These results may be useful for the design of health policies, as they illustrate how healthcare spending is influenced by the epidemiological transition and increasing life expectancy. They also provide a plausibility check for single cost-of-illness studies. Our study may serve as a starting point for further research on the drivers of the constant growth of healthcare spending.

Drug Pricing Evolution in Hepatitis C.

OBJECTIVE: We aimed to determine the association between the stepwise increase in the sustained viral response (SVR) and Swiss and United States (US) market prices of drug regimens for treatment-naive, genotype 1 chronic hepatitis C virus (HCV) infection in the last 25 years. We identified the following five steps in the development of HCV treatment regimens: 1) interferon (IFN)-α monotherapy in the early '90s, 2) IFN-α in combination with ribavirin (RBV), 3) pegylated (peg) IFN-α in combination with RBV, 4) the first direct acting antivirals (DAAs) (telaprevir and boceprevir) in combination with pegIFN-α and RBV, and 5) newer DAA-based regimens, such as sofosbuvir (which is or is not combined with ledipasvir) and fixed-dose combination of ritonavir-boosted paritaprevir and ombitasvir in combination with dasabuvir. DESIGN: We performed a linear regression and mean cost analysis to test for an association between SVRs and HCV regimen prices. We conducted a sensitivity analysis using US prices at the time of US drug licensing. We selected randomized clinical trials of drugs approved for use in Switzerland from 1997 to July 2015 including treatment-naïve patients with HCV genotype 1 infection. RESULTS: We identified a statistically significant positive relationship between the proportion of patients achieving SVRs and the costs of HCV regimens in Switzerland (with a bivariate ordinary least square regression yielding an R2 measure of 0.96) and the US (R2 = 0.95). The incremental cost per additional percentage of SVR was 597.14 USD in Switzerland and 1,063.81 USD in the US. CONCLUSION: The pricing of drugs for HCV regimens follows a value-based model, which has a stable ratio of costs per achieved SVR over 25 years. Health care systems are struggling with the high resource use of these new agents despite their obvious long-term advantages for the overall health of the population. Therefore, the pharmaceutical industry, health care payers and other stakeholders are challenged with finding new drug pricing schemes to treat the entire population infected with HCV.

Impact evaluation of Swiss Medical Board reports on routine care in Switzerland: a case study of PSA screening and treatment for rupture of anterior cruciate ligament.

QUESTIONS UNDER STUDY: Evidence-based recommendations play an important role in medical decision-making, but barriers to adherence are common. In Switzerland, the Swiss Medical Board (SMB) publishes evidence reports that conclude with recommendations. We assessed the impact of two SMB reports on service provision (2009: Recommendation of conservative treatment as first option for rupture of the anterior cruciate ligament of the knee; 2011: Recommendation against PSA screening for prostate cancer). METHODS: We performed an observational study and assessed quantitative data over time via interrupted times series analyses. The primary outcome was the quarterly number of performed prostate-specific antigen (PSA) tests and the annual rates of surgical ACL repair in patients with ACL rupture. Data were adjusted for time trends and relevant confounders. RESULTS: We analysed PSA tests in 662,874 outpatients from 2005-2013 and treatment data in 101,737 patients with knee injury from 1990-2011. For the number of PSA tests, the secular trend before the intervention showed a continuous but diminishing increase over time. A statistically significant reduction in tests was estimated immediately after the intervention, but a later return to the trend before the intervention cannot be ruled out. The rate of surgical ACL repair had already declined after the late 1990s to about 55% in 2009. No relevant additional change emerged in this secular trend after the intervention. CONCLUSIONS: Despite some evidence of a possible change, we did not find a sustained and significant impact of SMB recommendations in our case study. Further monitoring is needed to confirm or refute these findings.