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Background: Advance care planning discussions are crucial in the management and support of individuals with life-limiting or life-threatening conditions. Few studies have examined best practices for advance care planning with adolescents and young adults. Aim: To identify core components of current guidelines, frameworks and tools for advance care planning discussions with adolescents and young adults with life-limiting or life-threatening conditions and their families. Design: A scoping review of the literature was conducted followed by a thematic analysis of the included papers. The scoping review was reported according to the Joanna Briggs Institute approach to the conduct of scoping reviews. Data sources: Five databases [Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, PsycInfo, PubMed and Scopus] were searched for English-language papers published between inception until January 2023. Results: The search yielded 2976 papers, of which 9 met the inclusion criteria. Five main themes were identified: (i) utilisation of standardised documents and protocols; (ii) shared decision-making between the adolescents and young adults, their families and the healthcare team; (iii) the importance of open and honest communication with adolescents and young adults during advance care planning discussions; (iv) individualisation and flexibility in the advance care planning process and (v) timing of advance care planning initiation. Conclusions: Results highlight the importance of engaging adolescents and young adults in advance care planning and considering their unique needs when initiating and framing these discussions. Our findings can be used by healthcare professionals to inform advance care planning in this group. [ABSTRACT FROM AUTHOR]

Background/purpose: Curative technologies improve patient's survival and/or quality of life but increase financial burdens. Effective prevention benefits all three. We summarize estimation methods and provide examples of how much money is spent per quality-adjusted life year (QALY) or life year (LY) on treating a catastrophic illness under a lifetime horizon and how many QALYs/LYs and lifetime medical costs (LMC) could be potentially saved by prevention., Methods: We established cohorts by interlinkages of Taiwan's nation-wide databases including National Health Insurance. We developed methods to estimate lifetime survival functions, which were multiplied with the medical costs and/or quality of life and summed up to estimate LMC, quality-adjusted life expectancy (QALE) and lifetime average cost per QALY/LY for catastrophic illnesses. By comparing with the age-, sex-, and calendar year-matched referents simulated from vital statistics, we obtained the loss-of-QALE and loss-of-life expectancy (LE)., Results: The lifetime cost-effectiveness ratios of ventilator-dependent comatose patients, dialysis, spinal cord injury, major trauma, and cancers were US$ 96,800, 16,200-20,000, 5500-5,900, 3400-3,600, and 2900-11,900 per QALY or LY, respectively. The successful prevention of lung, liver, oral, esophagus, stomach, nasopharynx, or ovary cancer would potentially save US$ 28,000-97,000 and > 10 QALYs; whereas those for end-stage kidney disease, stroke, spinal injury, or major trauma would be US$ 55,000-300,000 and 10-14 QALYs. Loss-of-QALE and loss-of-LE were less confounded indicators for comparing the lifetime health benefits of different technologies estimated from real-world data., Conclusions: Integration of prevention with treatment for resources allocation seems feasible and would improve equity and efficiency., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Jung-Der Wang reports was provided by National Science and Technology Council. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Formosan Medical Association. Published by Elsevier B.V. All rights reserved.)

Catastrophic out-of-pocket health expenditure (CHE) remain high in Sub-Saharan Africa and may not conform to the sporadic random pattern of acute illnesses that shapes insurance arrangements intended to avoid the risk of financial loss. The persistency of CHE remains a largely unexplored issue due to the lack of relevant methods and scarcity of panel data. This paper addresses the first shortcoming by presenting three different approaches to incorporating the timeframes into the analysis, considering dynamics between two periods, average over time and the recurrence of CHE incidence. Through the application of the complementary approaches, we identify (i) those at risk of persistent CHE in the short-term; (ii) those facing transient versus persistent CHE in the long-term; and (iii) those facing multiple CHE spells. The methods are applied to different definitions of CHE using panel data from three sub-Saharan countries: Malawi (3 waves: 2010, 2013, and 2016) with 4983 observations; Tanzania (3 waves: 2008, 2010, and 2012) with 8715 observations; and Uganda (5 waves: 2009, 2010, 2011, 2013, and 2015) with 6475 observations. All datasets are balanced panels. Additionally, we employ empirical strategies to identify the underlying factors contributing to these persistent and relatively high OOP. Across the three countries, we find that at least 27% of the people facing CHE in one period, because they spent more than 5% of their household budget on health out-of-pocket, will face it again in the next period. The lower-bound risk for those spending more than 10% of their household budget is 9% and for those spending more than 25% of their household capacity to pay is 13%. Between 11% and 45% of the population incurred CHE at least twice during the observation period when using the 5% budget definition of CHE. The double recurrence rate ranges between 7% and 13% when using the 25% capacity-to-pay definition and between 3% and 20% when using the 10% budgetshare definition. Between 22% and 32% of the population experienced chronic CHE at the 5% of the budgetshare definition (6%-10% at the 10% of the budgetshare definition of CHE; 2%-11% at 25% of capacity-to-pay). Our panel regression analysis consistently highlights the susceptibility of certain groups to face persistence CHE, notably those residing in rural areas, individuals with lower levels of education, the elderly, and those who have undergone hospitalizations., (Copyright © 2024. Published by Elsevier Ltd.)

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Delirium is an acute, global cognitive disorder syndrome, also known as acute brain syndrome, characterized by disturbance of attention and awareness and fluctuation of symptoms. Its incidence is high among critically ill patients. Once patients develop delirium, it increases the risk of unplanned extubation, prolongs hospital stay, increases the risk of nosocomial infection, postintensive care syndrome-cognitive impairment, and even death. Therefore, it is of great importance to understand how delirium occurs and to reduce the incidence of delirium in critically ill patients. This paper reviews the potential pathophysiological mechanisms of delirium in critically ill patients, with the aim of better understanding its pathophysiological processes, guiding the formulation of effective prevention and treatment strategies, providing a basis for clinical medication. [ABSTRACT FROM AUTHOR]

Background: Compassionate communities have been put forward as a promising model for community-based support for people facing serious illness, caregiving, dying, and loss. In particular, educational institutions are increasingly acknowledged as potential settings to function as compassionate schools and compassionate workplaces, cultivating acceptance and validation of these experiences beyond the university setting. Objectives: This paper investigates the activities and outcomes of a compassionate community initiative—the Compassionate University program at the Vrije Universiteit Brussel in Belgium. Design: Ripple Effects Mapping was used to guide the focus group and individual interviews conducted with core team members responsible for the development and implementation of the Compassionate University program. Methods: During the focus group and individual interviews, the core team members reflected on the program contributions, with their narratives visually depicted via a hand-drawn mind map. Qualitative data derived from this mind map were entered into XMIND mapping software and fine-tuned based on the focus group and individual interview transcripts and additional project records. Results: Thematic analysis identified four outcome areas that encapsulate the key contributions of the Compassionate University program: (i) increased acceptance and integration of topics such as serious illness, death, and bereavement into existing practices; (ii) broader support for and formalization of compassionate procedures and policies; (iii) emergence of informal networks and internal collaboration on the topics; and (iv) diffusion of compassionate ideas beyond the university. Conclusion: The Compassionate University program facilitates a cultural shift within the university environment, fostering greater acceptance of integrating topics such as serious illness, death, and bereavement into existing practices. Additionally, compassionate procedures and policies for students and staff have been formalized, and core team members are increasingly called upon to provide support on these matters. Notably, Compassionate University stands out as one of the pioneering initiatives in Europe, attracting different educational institutions seeking guidance on cultivating a more compassionate environment. [ABSTRACT FROM AUTHOR]

WHO recommends integrating rehabilitation into palliative care when providing services for people with life-threatening conditions. Recently, there has been increasing interest in exploring how rehabilitation and palliative care approaches could be combined. The aim of this study was to map and discuss the goals of intervention programmes that combine rehabilitation and palliative care. A scoping review was performed. The electronic databases MEDLINE, EMBASE, and CINAHL were searched for papers published between January 2014 and September 2022. Papers were considered eligible if the participants in question had a life-threatening disease and if interventions included both rehabilitation and palliative care. All study types were included. Ten papers describing five interventions were included. Qualitative goals were narratively described, and quantitative goals were analysed according to the International Classification of Functioning, Disability and Health, and the Total Pain framework. Findings showed an overall focus on functioning and quality of life. Further analysis indicated an emphasis on physical and psychological dimensions. Social participation, and the social and spiritual dimensions were rarely evaluated. This review indicates that goals relative to social participation, the social and spiritual dimensions, and the patient's own goals may well be overlooked as points of orientation for interventions. There is an increasing interest in combining palliative care and rehabilitation approaches in clinical work. When rehabilitation and palliative care are combined, goals may be overlooked, and the patient's own goals can be used as a point of orientation for interventions. Future practice should pay special attention to subjective goals, social participation, and the social and spiritual dimensions when combining rehabilitation and palliative care. [ABSTRACT FROM AUTHOR]

Background: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care. Methods: A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values. Results: We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values. Conclusion: Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide. [ABSTRACT FROM AUTHOR]

Background: Fewer than 1 in 20 people on the African continent in need of palliative care receive it. Malawi is a low-income country in sub-Saharan Africa that has yet to achieve advanced palliative care integration accompanied by unrestricted access to pain and symptom relieving palliative medicines. This paper studied the impact of Malawi's Waterloo Coalition Initiative (WCI) – a local project promoting palliative care integration through service development, staff training, and increased service access. Methods: Interdisciplinary health professionals at 13 hospitals in southern Malawi were provided robust palliative care training over a 10-month period. We used a cross-sectional evaluation to measure palliative care integration based on 11 consensus-based indicators over a one-year period. Results: 92% of hospitals made significant progress in all 11 indicators. Specifically, there was a 69% increase in the number of dedicated palliative care rooms/clinics, a total of 253 staff trained across all hospitals (a 220% increase in the region), substantive increases in the number of patients receiving or assessed for palliative care, and the number of hospitals that maintained access to morphine or other opioid analgesics while increasing the proportion of referrals to hospice or other palliative care programs. Conclusion: Palliative care is a component of universal health coverage and Sustainable Development Goal 3. The WCI has made tremendous strides in establishing and integrating palliative care services in Malawi with notable progress across 11 project indicators, demonstrating that increased palliative care access is possible in severely resource-constrained settings through sustained models of partnership at the local level. [ABSTRACT FROM AUTHOR]

Background: Parental involvement in the decision-making processes about medical treatment for children with life-limiting conditions is recognised as good practice. Previous research highlighted factors affecting the decision-making process, but little is known about how parents experience their participation. Aim: To explore how parents experience their participation in the process of decision-making about treatment and future care for their children with life-limiting conditions. Design: A systematically constructed review using narrative synthesis. The PRISMA guidelines were followed to report the findings. Databases Medline, EMBASE, SCOPUS, CINAHL and PsycINFO were searched up to December 2023. The study protocol was registered at PROSPERO (RN CRD42021215863). Results: From the initial 2512 citations identified, 28 papers met the inclusion criteria and were included in the review. A wide range of medical decisions was identified; stopping general or life-sustaining treatment was most frequent. Narrative synthesis revealed six themes: (1) Temporal aspects affecting the experience with decision-making; (2) Losing control of the situation; (3) Transferring the power to decide to doctors; (4) To be a 'good' parent and protect the child; (5) The emotional state of parents and (6) Sources of support to alleviate the parental experience. Conclusions: Parental experiences with decision-making are complex and multifactorial. Parents' ability to effectively participate in the process is limited, as they are not empowered to do so and the circumstances in which the decisions are taking place are challenging. Healthcare professionals need to support parental involvement in an effective way instead of just formally asking them to participate. [ABSTRACT FROM AUTHOR]

Social theory plays an important role in the nursing discipline and nursing inquiry as it helps conceptually embed nursing in the larger picture of the social world. For example, a broad category of critical theory provides a unique lens for uncovering social conditions of inequity and oppression. Among the sociological theories, actor‐network theory (ANT) is an approach to research and analysis that has recently gained interest among nurse philosophers and researchers. Studies guided by ANT seek to understand phenomena of interest as constituted within the relationships between human and nonhuman actors to understand how care practices are co‐created/enacted and how they can be made more humane. In this paper, we describe the benefits of ANT for examining healthcare access for incarcerated individuals with life‐limiting illnesses accessing palliative care and for people using illicit drugs. We argue that attention to the materiality of care practices can contribute to efforts of advancing health equity for these groups. [ABSTRACT FROM AUTHOR]

Background: Delirium is a serious complication of critical care that can have lasting effects on the patient’s life. Much of the work to date about delirium has been focused on identifying delirium risk factors, developing tools for screening and recognizing delirium, and testing interventions to treat those diagnosed with delirium. Despite evidence, implementing known delirium prevention and management strategies remains abysmal. This review aimed to identify and summarize literature reporting on the barriers and facilitators of implementing delirium prevention and management practices in adult critical care. Methods: A rapid scoping review of the literature was conducted. The databases CINAHL and Ovid Medline were searched, and forward and backward reference checking was completed. Data abstraction and analysis were performed by one reviewer and verified by a second reviewer. Results: After review of 74 full-text papers, 32 articles were included in the review. The articles were published between 2008 and 2022, with the majority conducted in the United States (53%). The barriers and facilitators of delirium prevention and management practices described in the reviewed articles were categorized as patient-level, clinician-level, and organizational-level factors. Conclusion: The review found consistency among the published results. However, opportunities to continue to grow research in this area remain; specifically in examining the opportunity to understand better the decision-making process surrounding how care is prioritized when taking into consideration the present barriers and facilitators and the opportunity to use implementation science to create and sustain change in the practice of delirium prevention and management strategies. [ABSTRACT FROM AUTHOR]

Background: Paediatric palliative care (PPC) has evolved in response to the increased prevalence of children who have been diagnosed with life-limiting conditions. Nursing care is a fundamental aspect of PPC and understanding nurses' experiences is imperative to the provision and development of quality holistic child-centred services. Aim: To review nurses' experiences of providing palliative care for children with life-limiting conditions. Method: A systematic database search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) Complete, Ovid Medline and Scopus was undertaken. Key words consisted of 'palliative care' or 'terminal care' or 'dying' or 'end-of-life care' and children* or paediatric* or pediatric* and 'nurs* experience*' or 'nurs* view*' or 'nurs* perspective*' or 'nurs* feeling*'. Inclusion criteria included peer-reviewed studies published between 2016–2023 in the English language. Findings: A thematic approach was adopted with the 11 papers selected for the review and each study critically analysed to identify three recurring themes. The themes included: 'a broken wreck', 'makes a life worth living' and 'challenges in doing 100%'. Findings point to mixed feelings among nurses in providing PPC and suggest that nurses experience emotional distress when caring for dying children. With appropriate supports and inspiration from their paediatric patients, nurses are determined to provide a 'good death' for the children in their care. Nevertheless, the perceived lack of knowledge and experience, communication struggles and personal dilemmas can be predisposing factors in triggering negative experiences among nurses when providing palliative care for children with life-limiting conditions. Recommendations: Education and policy development is required to meet the practice needs and support the emotional needs of nurses engaged in PPC. Further research is required to generate PPC evidence-based nursing interventions. In doing so, high quality PPC practice will be promoted, thereby ensuring high quality PPC for the children and their families. [ABSTRACT FROM AUTHOR]

Objective: Given limited critical care resources and an aging population, early interventions to prevent critical illness are vital. In this work, we measured post-implementation outcomes after introducing a novel electronic scoring system (Elders Risk Assessment—ERA) and a risk-factor checklist, Checklist for Early Recognition and Treatment of Acute Illness (CERTAIN), to detect older patients at high risk of critical illness in a primary care setting. Methods: The study was conducted at a family medicine clinic in Kasson, MN. The ADAPT-ITT framework was used to modify the CERTAIN checklist for primary care during 2 co-design workshops involving interdisciplinary clinicians, held in April 2023. The ERA score and modified CERTAIN checklist were implemented between May and July 2023 and identify and assess all patients age ≥60 years at risk of critical illness during their primary care visits. Implementation outcomes were evaluated at the end of the study via an anonymous survey and EHR data extraction. Results: Fourteen clinicians participated in 2 co-design workshops. A total of 19 clinicians participated in a post-pilot survey. All survey items were rated on a 5-point Likert type scale. Mean acceptability of the ERA score and checklist was rated 3.35 (SD = 0.75) and 3.09 (SD = 0.64), respectively. Appropriateness had a mean rating of 3.38 (SD = 0.82) for the ERA score and 3.19 (SD = 0.59) for the checklist. Mean feasibility was rated 3.38(SD = 0.85) and 2.92 (SD = 0.76) for the ERA score and checklist, respectively. The adoption rate was 50% (19/38) among clinicians, but the reach was low at 17% (49/289) of eligible patients. Conclusions: This pilot study evaluated the implementation of an intervention that introduced the ERA score and CERTAIN checklist into a primary care practice. Results indicate moderate acceptability, appropriateness, and feasibility of the ERA score, and similar ratings for the checklist, with slightly lower feasibility. While checklist adoption was moderate, reach was limited, indicating inconsistent use. Recommendations: We plan to use the open-ended resurvey responses to further modify the CERTAIN-FM checklist and implementation process. The ADAPT-ITT framework is a useful model for adapting the checklist to meet the primary care clinician needs. [ABSTRACT FROM AUTHOR]

This paper attempts to examine how malaria eradication in Taiwan during the 1950s, which successfully wiped out malaria within a short period, affected long-term health. Relying on three data sets covering the entire population of Taiwan, we construct diverse measures of health, including health-care utilization, functional abilities, chronic diseases, and catastrophic illnesses. Our results indicate that people who experienced larger reductions in early-life malaria exposure tend to have better health status as adults, especially women. Our results suggest a sizable cost saving from the eradication program that improves early-life environment and helps to avoid costly diseases at a later point. [ABSTRACT FROM AUTHOR]

Background: The introduction of Emergency Medicine in Rwanda in 2015 has been associated with a mortality reduction in patients presenting to Kigali University Teaching Hospital (KUTH). In the context of increasing numbers of critically ill patients presenting to Emergency Departments (ED) globally, the aim of this study was to describe the characteristics of critically ill patients, the critical care interventions performed, and the outcomes of critically ill patients presenting to the KUTH ED with the goal of informing future research into the root causes of mortality of critically ill ED patients and of identifying high yield topics for didactic and procedural training. Methods: A descriptive observational prospective cohort pilot study analyzed all patients ≥15 years who presented to KUTH between April and June 2022 with modified South African Triage Scores of Red with alarm, Red without alarm, and Orange. Results: Of 320 patients, 66.9% were male and median age was 40 years. Patients were triaged as Orange (65.3%), Red without alarm (22.8%), and Red with alarm (11.9%). Presentations were categorized as: medical emergencies (48.0%), traumatic injury (44.5%), and surgical emergencies (7.6%). Median length of stay was 31 h (IQR 28, 56) and boarding was 23 h (IQR 8, 48). Overall mortality was 12.2% and highest among medical emergencies (16.5%, p = 0.048) and increased significantly with triage color: Red with alarm (47.4%), Red without alarm (16.4%), and Orange (4.3%, p < 0.0001). Cardiopulmonary resuscitation (CPR) (10.3%), endotracheal intubation (8.8%), and vasopressor administration (3.1%) were the most frequent critical interventions performed. Survival after cardiac arrest was 9.1% and 32.1% after intubation. Mortality was associated with the following interventions: CPR, intubation, and use of vasopressors (p < 0.05). Conclusions: This pilot study identified the most common critical care interventions performed and a high mortality among patients who required these interventions in the ED of a tertiary teaching hospital in Rwanda. These findings will inform didactics and procedural training for emergency care providers. Future research should focus on the root causes of mortality in these specific patient populations and identify areas of system strengthening to reduce mortality. [ABSTRACT FROM AUTHOR]

Background: Reduced muscle mass upon admission and development of muscle wasting are frequent in critically ill patients, and linked to unfavorable outcomes. Muscle ultrasound is a promising instrument for evaluating muscle mass. We summarized the findings of lower limb muscle ultrasound values and investigated how the muscle ultrasound parameters of the examination or the patient characteristics influence the results. Methods: Systematic review and meta-analysis of studies of lower limb ultrasound critically ill adults. PubMed, CINAHL, Embase, PEDro and Web of Science were searched. PRISMA guidelines were followed, and studies evaluated with the appropriate NIH quality assessment tool. A meta-analysis was conducted to compare the values at admission, short and long follow-up during ICU stay, and the association between baseline values and patient characteristics or ultrasound parameters was investigated with a meta-regression. Results: Sixty-six studies (3839 patients) were included. The main muscles investigated were rectus femoris cross-sectional area (RF-CSA, n = 33/66), quadriceps muscle layer thickness (n = 32/66), and rectus femoris thickness (n = 19/66). Significant differences were found in the anatomical landmark and ultrasound settings. At ICU admission, RF-CSA ranged from 1.1 [0.73–1.47] to 6.36 [5.45–7.27] cm2 (pooled average 2.83 [2.29–3.37] cm2) with high heterogeneity among studies (I2 = 98.43%). Higher age, higher BMI, more distal landmark and the use of probe compression were associated with lower baseline muscle mass. Conclusions: Measurements of muscle mass using ultrasound varied with reference to patient characteristics, patient position, anatomical landmarks used for measurement, and the level of compression applied by the probe; this constrains the external validity of the results and highlights the need for standardization. Study registration: PROSPERO CRD42023420376. [ABSTRACT FROM AUTHOR]

Background: Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit. Aim: Appraise the evidence to identify factors influencing referral and access to children's palliative care, and interventions to reduce barriers and improve referrals. Design: Scoping review following the six stages of the Arksey and O'Malley framework. Data were charted using an adapted version of the socioecological framework. Data sources: CINAHL, MEDLINE, PsycINFO, EMBASE, Cochrane Library were searched for primary studies of any design and literature/systematic reviews. Studies reporting barriers/facilitators and interventions in relation to referral of children with a life-limiting condition to palliative care, in any setting, were included. Results: One hundred ninety five articles (primary qualitative and quantitative studies, reviews) were retained (153 reporting barriers/facilitators; 40 interventions; 2 both). Multiple factors were identified as barriers/facilitators: Individual level: underlying diagnosis, prognostic uncertainty, parental attitudes, staff understanding/beliefs; Interpersonal level: family support, patient-provider relationships, interdisciplinary communication; Organisational level: referral protocols, workforce, leadership; Community level: cultural norms, community resources, geography; Society level: policies and legislation, national education, economic environment, medication availability. Most of these factors were bi-directional in terms of influence. Interventions (n = 42) were mainly at the organisational level for example, educational programmes, screening tools/guidelines, workplace champions and new/enhanced services; one-third of these were evaluated. Conclusion: Barriers/facilitators to paediatric palliative care referral are well described. Interventions are less well described and often unevaluated. Multi-modal approaches incorporating stakeholders from all levels of the socioecological framework are required to improve paediatric palliative care referral and access. [ABSTRACT FROM AUTHOR]

Background: Most employees will experience serious illness, caregiving, dying and loss (End-of-Life (EoL) experiences) at multiple points throughout their working lives. These experiences impact affected employees but also their colleagues in terms of health and wellbeing, and the workplace as a whole in terms of workplace safety, productivity and labour relations. The impact of EoL experiences on employees means that workplaces are called to play a more active role in providing support for EoL experiences. Aim: To describe how the EU-CoWork (2024–2028) project addresses its main aims to (1) create Compassionate Workplace cultures, practices and policies and improve health and wellbeing for employees dealing with EoL experiences in different national work contexts in Europe; (2) describe and evaluate the process of co-creation and implementation of Compassionate Workplace Programs (CWPs) and how these influence the programs' outcomes. Design: EU-CoWork employs a facilitated and co-creative Developmental Evaluation approach to the development of 12 tailored CWPs across four European countries (Belgium, Austria, Sweden and Greece). Methods: To evaluate the outcomes and processes leading to these outcomes, a mixed-methods Realist Evaluation methodology is applied, formulating and testing Context-Mechanism-Outcomes configurations and combining longitudinal quantitative and qualitative data collections. Results: EU-CoWork will generate evidence to support an expanded model of occupational health and safety risk factors sensitive to the specific challenges related to employees' EoL experiences. In doing so, several challenges will have to be navigated: involving employees with EoL experiences while avoiding overburdening them, avoiding tokenistic engagement, managing power differentials, balancing the need for scientific rigour with the flexibility required in co-creation, reconciling different epistemologies and disciplinary traditions and organisational resistance to change. Conclusion: There are potential long-lasting broader societal impacts through the stimulation of open discourse on EoL topics, the reconciliation of work and care, and changes in gendered work and care patterns. [ABSTRACT FROM AUTHOR]

Background: The role of the geriatric nutritional risk index (GNRI) as a prognostic factor in intensive care unit (ICU) patients with acute kidney injury (AKI) remains uncertain. Objectives: The aim of this study was to investigate the impact of the GNRI on mortality outcomes in critically ill patients with AKI. Methods: For this retrospective study, we included 12,058 patients who were diagnosed with AKI based on ICD-9 codes from the eICU Collaborative Research Database. Based on the values of GNRI, nutrition-related risks were categorized into four groups: major risk (GNRI < 82), moderate risk (82 ≤ GNRI < 92), low risk (92 ≤ GNRI < 98), and no risk (GNRI ≥ 98). Multivariate analysis was used to evaluate the relationship between GNRI and outcomes. Results: Patients with higher nutrition-related risk tended to be older, female, had lower blood pressure, lower body mass index, and more comorbidities. Multivariate analysis showed GNRI scores were associated with in-hospital mortality. (Major risk vs. No risk: OR, 95% CI: 1.90, 1.54–2.33, P < 0.001, P for trend < 0.001). Moreover, increased nutrition-related risk was negatively associated with the length of hospital stay (Coefficient: -0.033; P < 0.001) and the length of ICU stay (Coefficient: -0.108; P < 0.001). The association between GNRI scores and the risks of in-hospital mortality was consistent in all subgroups. Conclusions: GNRI serves as a significant nutrition assessment tool that is pivotal to predicting the prognosis of critically ill patients with AKI. [ABSTRACT FROM AUTHOR]

The article discusses the evolution of primary palliative care and its essential role in ensuring accessibility for individuals facing life-threatening illnesses. Topics discussed include models of integrating palliative care in various settings, the significance of education and training for primary care providers, and the importance of continuity and patient-centered care in improving palliative care delivery.

Background Pre-admission frailty has been associated with higher hospital mortality in patients with critical illness. We aimed to measure the prevalence of frailty and its associated outcomes in patients with COVID-19 critical illness. Methods A historical cohort study of all adults admitted to ICU with a pneumonia diagnosis in Alberta, Canada between May 1, 2020, and October 31, 2020. At ICU admission patients were routinely assessed for frailty using the Clinical Frailty Scale (CFS). Frailty was defined as a CFS score ≥5. Primary outcomes were pre-admission frailty prevalence and hospital mortality. Results The cohort (n=521) prevalence of frailty was 34.2% (n=178), mean (SD) age was 58.8 (14.9) years, APACHE II 22.8 (8.0), and 39.5% (n=206) were female. COVID-19 pneumonia was diagnosed in (19.0%; n=99) admissions; pre-admission frailty was present in 20.2% (n=20) vs. 79.8% (n=79) non-frail (p<.001). Among ICU patients admitted with COVID-19, hospital mortality in frail patients was 35.4% (n=63) vs. 14.0% (n=48) in non-frail (p<.001). Conclusion Pre-admission frailty was present in 20.2% of COVID-19 ICU admissions and was associated with higher risk of hospital mortality. Frailty assessment may yield valuable prognostic information when considering COVID-19 ICU admission; however, further study is needed to identify effect on patientcentred outcomes in this heterogeneous population. [ABSTRACT FROM AUTHOR]

Comprehending the significance of legacy in end-of-life (EoL) situations helps palliative care professionals enhance person-centered outcomes for those with a life-threatening illness and their families. Our purpose was to conduct a concept analysis of legacy in EoL care. By employing Walker and Avant's approach, we identified the concept's defining characteristics. Subsequently, we established the antecedents, consequences, and empirical referents. After conducting a thorough review of titles and abstracts, a total of 30 publications were analyzed. These articles were sourced from three databases (CINAHL, Medline via PubMed, and Scopus) from 2002 to 2023. Our analysis identified several core attributes of legacy: (a) leave behind something of value that transcends death; (b) determine how people want to be remembered; (c) build and bestow across generations; (d) integrate advance care planning through EoL conversations and shared decision-making; and (e) develop strategies of dignity-conserving care. The consequences are related to improvements in spiritual and subjective well-being; coping with inevitable EoL existential issues; decreases in EoL suffering; engendering self-awareness, hope, gratitude, and peace; achieving and maintaining dignity; creating good memories; promoting mutually constructive and transformative relationships; and fostering the adjustment of bereaved people. Nevertheless, further effort is required to implement the key attributes of legacy that form the basis for creating legacy-oriented interventions near the EoL. [ABSTRACT FROM AUTHOR]

This qualitative study explores the perceptions of impact associated with engaging in a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Interviews were completed with 12 parents who had participated in a three-camp cycle of the program over 12-month period, including a subgroup who had also attended a reunion camp. Interviews were also conducted with program staff. Thematic analysis generated key themes relating to the perceived impact which suggest that those engaged in this program perceived positive contributions associated with participation, including perceptions of positive impact on coping with bereavement, access to support and implications for family functioning. This study highlights the areas of impact associated with engagement in a therapeutic recreation-based bereavement intervention, and the potential contribution of wider access to these programs for families whose child has died from serious illness. [ABSTRACT FROM AUTHOR]

Background: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses. Methods: We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia. Results: Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare. Conclusions: This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings. [ABSTRACT FROM AUTHOR]

Objective: To estimate the catastrophic health expenditure and distress financing of breast cancer treatment in India. Methods: The unit data from a longitudinal survey that followed 500 breast cancer patients treated at Tata Memorial Centre (TMC), Mumbai from June 2019 to March 2022 were used. The catastrophic health expenditure (CHE) was estimated using households' capacity to pay and distress financing as selling assets or borrowing loans to meet cost of treatment. Bivariate and logistic regression models were used for analysis. Findings: The CHE of breast cancer was estimated at 84.2% (95% CI: 80.8,87.9%) and distress financing at 72.4% (95% CI: 67.8,76.6%). Higher prevalence of CHE and distress financing was found among rural, poor, agriculture dependent households and among patients from outside of Maharashtra. About 75% of breast cancer patients had some form of reimbursement but it reduced the incidence of catastrophic health expenditure by only 14%. Nearly 80% of the patients utilised multiple financing sources to meet the cost of treatment. The significant predictors of distress financing were catastrophic health expenditure, type of patient, educational attainment, main income source, health insurance, and state of residence. Conclusion: In India, the CHE and distress financing of breast cancer treatment is very high. Most of the patients who had CHE were more likely to incur distress financing. Inclusion of direct non-medical cost such as accommodation, food and travel of patients and accompanying person in the ambit of reimbursement of breast cancer treatment can reduce the CHE. We suggest that city specific cancer care centre need to be strengthened under the aegis of PM-JAY to cater quality cancer care in their own states of residence. Trial Registration: CTRI/2019/07/020142 on 10/07/2019. [ABSTRACT FROM AUTHOR]

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Background: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. Aim: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. Design: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. Setting/participants: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. Results: Four generated themes included: 1. ' Why haven't you read what's wrong with me? '; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having ' a say in matters ': control and responsibility; 4. Enabling patient and carer control of their records: ' custodianship is key '. Conclusions: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems. [ABSTRACT FROM AUTHOR]

Objectives: The 2017 Lancet Commission reports 'Serious Health-related Suffering' (SHS) as an abyss in healthcare services. It lists 20 common health conditions and 15 symptoms as commonly associated with SHS. In 2015, 80% of SHS prevalence, an estimated 61 million, was noted as from low-middle-income countries. Acknowledging the high prevalence of SHS in cancer patients and aligning with global efforts to address and alleviate the suffering, the National Cancer Grid of India developed and evaluated the SHS screening tool (SHS-tool). The SHS tool was developed during phase 1 of the study through a systematic consensus-building methodology. During phase 2, the validity and feasibility study of the SHS tool was completed through a multicentric field test, which is described here. Materials and Methods: The SHS tool developed during phase 1 was field-tested across nine tertiary cancer care centres (TCC sites) selected from different healthcare sectors and regions of India. The study utilised a purposive sample of 254 cancer patients to evaluate the validity of the SHS screening tool at selected sites and additionally recorded the feasibility, relevance, acceptability and feedback comments from patients (n = 121), research associates (n = 11) and principal investigators (PIs) (n = 9). A documented interview of the patient within the same timeframe by experienced personnel selected by the PI served as the standard. Results: The field-test TCC-sites represented government academic institutions, non-government and private sectors. The sites used patient waiting areas and inpatient/daycare wards for conducting field tests. The Cronbach's alpha of the SHS-tool questionnaire showed an internal consistency of 0.728. The tool detected SHS in 137/254 patients, compared to 116/254 through the interview method. The outcomes concurred with that of the interview in 64.17% of instances. The tool exhibited a sensitivity of 70% and specificity of 59%. 66.67% of patients might not have reached the interviewers if not for the field test processes. The feasibility questionnaire responses from patients (n = 121) indicated ease of understanding (91.74%), ease of use (92.56%) and relevance (89.26%). The selected settings were found suitable by 96.69%. Feedback responses from research associates indicated ease of administration (10/11) and relevance (8/11) and found no reasons preventing its use (8/11). The feedback comments from the stakeholders were thematically grouped for insights. Conclusion: The SHS tool is validated for screening SHS where none exists. It has been found to be a feasible, relevant and acceptable tool for use in adult cancer patients attending TCCs across India. Insights from analysing the feedback comments from the stakeholders have been integrated as 'instruction for use' for refined implementation of the SHS tool. The SHS tool may be utilised to recognise and trigger an in-depth evaluation and expedited access to essential palliative care packages towards alleviating it, as recommended by the Lancet Commission. Future studies using the SHS tool in other disease conditions with a high burden of SHS can assess its wider applicability. [ABSTRACT FROM AUTHOR]

Antibiotic, analgesic sedative, and antiseizure medications are among the most commonly used medications in preterm/sick neonates, who are at high risk of nosocomial infections, central nervous system complications, and are exposed to numerous painful/stressful procedures. These severe and potentially life-threatening complications may have serious short- and long-term consequences and should be prevented and/or promptly treated. The reported variability in the medications used in neonates indicates the lack of adequate neonatal studies regarding their effectiveness and safety. Important obstacles contributing to inadequate studies in preterm/sick infants include difficulties in obtaining parental consent, physicians' unwillingness to recruit preterm infants, the off-label use of many medications in neonates, and other scientific and ethical concerns. This review is an update on the use of antimicrobials (antifungals), analgesics (sedatives), and antiseizure medications in neonates, focusing on current evidence or knowledge gaps regarding their pharmacokinetics, indications, safety, dosage, and evidence-based guidelines for their optimal use in neonates. We also address the effects of early antibiotic use on the intestinal microbiome and its association with long-term immune-related diseases, obesity, and neurodevelopment (ND). Recommendations for empirical treatment and the emergence of pathogen resistance to antimicrobials and antifungals are also presented. Finally, future perspectives on the prevention, modification, or reversal of antibiotic resistance are discussed. [ABSTRACT FROM AUTHOR]

Background. Growing evidence is describing the long-term morbidity experienced by critical illness survivors, a major contributing factor being impaired physical function. Consensus is yet to be reached on which physical function measures should be included in this population. This review aimed to describe physical functioning measurement instruments used in longitudinal studies of critical illness survivors, based on the International Classification of Function (ICF). Methods. An electronic database search of EbscoHost, Web of Science and Scopus was conducted from inception to November 2023. Two reviewers independently applied the inclusion and exclusion criteria to titles, abstracts and full text-studies. Extracted data included year of publication; country; participant age; follow-up timeframes and physical measurement instruments used. Instruments were classified according to ICF domains. Results. Eighty studies published between 1995 and November 2023 were included. Forty-four different outcome measures were identified. Most studies (68) included multiple followed-up points and were completed within a year, and few studies (12) follow-up beyond a year. Based on the ICF, 11 (25%) instruments measured impairments and 33 (75%) activity limitations. Muscle power functions were the most frequently measured impairment (65%), utilising manual muscle testing (37.3%). The six-minute walk test (6MWT) was the most frequently used instrument in the activity/participation domain (31.6%). Only one instrument addressed all five the physical activity/participation domains, while the majority focused on mobility domain. Conclusions. Multiple tools are used to report on physical deficits experienced by ICU survivors, either measuring impairments or activity/ participation limitations. Most studies report on physical function within the first year of survival. The heterogeneity and inconsistency over time of instruments used prevents synthesis of data to determine intervention efficacy. The validity, predictive value and sensitivity of the reported measures within ICU survivors needs to be established, only then can intervention studies be designed to measure effectiveness. [ABSTRACT FROM AUTHOR]

Intra-abdominal infections (IAIs) are an important cause of morbidity and mortality in hospital settings worldwide. The cornerstones of IAI management include rapid, accurate diagnostics; timely, adequate source control; appropriate, short-duration antimicrobial therapy administered according to the principles of pharmacokinetics/pharmacodynamics and antimicrobial stewardship; and hemodynamic and organ functional support with intravenous fluid and adjunctive vasopressor agents for critical illness (sepsis/organ dysfunction or septic shock after correction of hypovolemia). In patients with IAIs, a personalized approach is crucial to optimize outcomes and should be based on multiple aspects that require careful clinical assessment. The anatomic extent of infection, the presumed pathogens involved and risk factors for antimicrobial resistance, the origin and extent of the infection, the patient's clinical condition, and the host's immune status should be assessed continuously to optimize the management of patients with complicated IAIs. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. Aim: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. Design: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. Setting/participants: Children 5–⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. Results: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. Conclusion: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice. [ABSTRACT FROM AUTHOR]

Background: Resilience is an increasingly used term in medicine and subject to various definitions, often not easy to grasp. There are established core concepts for patients receiving palliative care, for example, meaning in life, that have already been researched a lot. Resilience, relative to these concepts, is a new object of research in palliative care, where it has so far been used predominantly with regard to the well-being of teams. Aim: To explore how experts in palliative care define the concept of resilience and its suitability for patients, significant others, and professionals. Design: Qualitative study using summarizing content analysis according to Mayring. Setting/participants: Twenty-one health and social care professionals with expertise caring for persons with life-threatening/limiting illnesses and their relatives were interviewed in three individual interviews and four focus groups. All conversations were recorded, transcribed, coded via MAXQDA, and validated by another researcher. Results: Resilience has been described as something procedural, dynamic, individual, and flexible. In connection with well-known concepts such as posttraumatic growth or terms from the field of mindfulness, social environment or personal factors have also been linked to resilience. Resources such as spirituality can contribute to resilience, and resilience itself can function as a resource, for example, by contributing to quality of life. An active use of the term in practical work with patients or relatives is rare, but it is used in education or team measures. Limited lifespan can pose a challenge to an active use of the concept of resilience. Conclusion: Resilience as a very individual approach provides added value to other core concepts of palliative care. Within the palliative context, the normative dimension of resilience must be well reflected. A broader definition of resilience is recommended, leaving room for everyone to find their own form of resilience. The concept of resilience in palliative care includes opportunities as well as risks and should, therefore, be implemented carefully, requiring specific training. Plain language summary: What experts think about resilience in palliative care Why was this study done? Resilience is described as a process of coping with stress or adversity while remaining physically and mentally functional. Resilience is subject to a range of definitions. In the context of palliative care, where many other concepts, such as meaning in life, are already used, the definition of resilience also represents a challenge. We wanted to learn how people working in palliative care, defined by us as experts, understand and use the concept of resilience. In addition, there are three different target groups for resilience: patients, significant others and professionals. We wanted to learn about the differences in the application of resilience to these groups. What did the researchers do? We conducted interviews with a total of 21 experts in individual and group settings (so-called focus groups). All interviews and focus groups were audiotaped and transcribed verbatim to analyse them precisely using qualitative methods. What did the researchers find? This study shows how resilience is understood in the work field of the participants: namely as something procedural, dynamic, individual and flexible but normative at the same time. Factors such as the social environment, the number and intensity of crises already experienced (known as the idea of posttraumatic growth), aspects from the field of mindfulness or spirituality can contribute to developing resilience, which is why we call these things resources for resilience. Experts use the term resilience less in their daily work with patients or significant others, but more in education. What do the findings mean? The concept of resilience in palliative care involves both risks and opportunities. Practical work with the concept has to be well reflected and must be applied sensitively. Therefore, it is essential that professional as well as informal caregivers receive specific training that also includes respect for each individual's personal concept of resilience. [ABSTRACT FROM AUTHOR]

Background: In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. Aim: The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. Methods: In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. Results: From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. Conclusions: Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages. Key message: What is already known on this topic? • The SPICT™ was developed to assist clinicians to screen patients for palliative care needs. What this review found. • The SPICT™ assists conversations about advance care planning and facilitates changes in documented goals of care. • The SPICT™ is available in at least eight languages (and used in many countries. How the findings of this review may affect practice and research. • Evidence suggests that formalising screening for palliative care needs using the SPICT™ is advantageous for advance care planning; clinicians should consider using the SPICT™ to initiate discussions with people with life limiting conditions. • Further research is required to validate the tool in different languages and extend its use in acute care settings and with other patient cohorts. [ABSTRACT FROM AUTHOR]

Uterine rupture is a rare and life-threatening condition. It usually occurs in patients with uterine scars (most commonly for a previous myomectomy or caesarean section), but it can also affect an unharmed uterus. This complication is more frequent in the third trimester and during delivery. There is not yet a recognised method of prediction of uterine rupture and the ultrasound features still need a consensus. In this article, we have reported a case of uterine dehiscence diagnosed by a pelvic ultrasound and magnetic resonance (MRI) at 24 weeks of gestation. The finding was confirmed intraoperatively at the caesarean section at 29 weeks of gestation. The 40-year-old patient has had a previous pregnancy complicated by uterine rupture at 22 weeks of gestation, following six previous abdominal surgeries for stage IV endometriosis, diffuse and nodular adenomyosis, and pelvic adhesion syndrome. The early detection of uterine dehiscence allowed us to prolong the pregnancy and perform a subsequent fertility-sparing surgery, reducing maternal and neonatal morbidity and mortality. Our case report proves that women with severe endometriosis/adenomyosis are at a high risk of uterine rupture and scar dehiscence. The antenatal ultrasound can describe a uterine dehiscence (even in asymptomatic patients) and prevent complications. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of our meta-analysis was to look at the impact of modified nutrition risk in the critically ill (mNUTRIC) on mortality in patients with critical illness. Materials and methods: Literature relevant to this meta-analysis was searched in PubMed, Web of Science, and Cochrane Library till 26 August 2023. Prospective or retrospective studies, patients >18 years of age, studies that reported on mortality and mNUTRIC (mNUTRIC cut-off score) were included. The QUIPS tool was used to evaluate the risk for bias in prognostic factors. Results: A total of 31 studies on mNUTRIC score, involving 13,271 patients were included. The summary area under the curve (sAUC) of 0.80 (95% CI: 0.76-0.83) illustrates the mNUTRIC score's strong discrimination. The pooled sensitivity was 0.79 (95% CI: 0.74-0.84) and pooled specificity was 0.68 (95% CI: 0.63-0.73). We found no discernible variation in the mNUTRIC's prediction accuracy among cut-off values of <5 and >5 in our subgroup analysis and sAUC values were 0.82 (95% CI: 0.78-0.85) and 0.78 (95% CI: 0.74-0.81), respectively. Conclusion: We observed that mNUTRIC can discriminate between critically ill individuals and predict their mortality. [ABSTRACT FROM AUTHOR]

Background and aim: While intensive care unit (ICU) mortality rates in India are higher when compared to countries with more resources, fewer patients with clinically futile conditions are subjected to limitation of life-sustaining treatments or given access to palliative care. Although a few surveys and audits have been conducted exploring this phenomenon, the qualitative perspectives of ICU physicians regarding end-of-life care (EOLC) and the quality of dying are yet to be explored. Methods: There are 22 eligible consultant-level ICU physicians working in multidisciplinary ICUs were purposively recruited and interviewed. The study data was analyzed using reflexive thematic analysis (RTA) with a critical realist perspective, and the study findings were interpreted using the lens of the semiotic theory that facilitated the development of themes. Results: About four themes were generated. Intensive care unit physicians perceived the quality of dying as respecting patients' and families' choices, fulfilling their needs, providing continued care beyond death, and ensuring family satisfaction. To achieve this, the EOLC process must encompass timely decision-making, communication, treatment guidelines, visitation rights, and trust-building. The contextual challenges were legal concerns, decision-making complexities, cost-related issues, and managing expectations. To improve care, ICU physicians suggested amplifying patient and family voices, building therapeutic relationships, mitigating conflicts, enhancing palliative care services, and training ICU providers in EOLC. Conclusion: Effective management of critically ill patients with life-limiting illnesses in ICUs requires a holistic approach that considers the complex interplay between the EOLC process, its desired outcome, the quality of dying, care context, and the process of meaning-making by ICU physicians. [ABSTRACT FROM AUTHOR]

Background: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition. Methods: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data. Results: The findings describe four themes related to parents' QoL: living a normal life, giving my child a good life, having time to fulfill siblings' needs, and feeling heard and respected in the health and social care system. Conclusions: The complexity of elements shaping parents' QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL. [ABSTRACT FROM AUTHOR]

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services. Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation. [ABSTRACT FROM AUTHOR]

Background: In children's palliative care, the term "respite" refers to a temporary break offered to primary caregivers of a child with a life-limiting illness. The aim of this study was to assess the perceptions of parents who have benefited from respite care services in the Lumina Association, Bacău hospice unit and the benefits it can bring in improving their psycho-emotional state. Methods: The study consisted of quantitative research involving 34 parents/caregivers who responded to a questionnaire with 26 questions, and qualitative research which involved the organization of a focus group with 12 parents who benefited from respite services. Results: The use of respite services was associated with a significant reduction of psycho-emotional distress on the part of primary caregivers; 91% of respondents said that this type of service reduces the level of psycho-emotional stress. Conclusions: All participants in the study confirmed that the most important benefit of respite is the time gained to care for family and health. The development of respite services could reduce the risk of emotional exhaustion and mental health problems. [ABSTRACT FROM AUTHOR]

Aim: To explore clinician-perceived barriers to and facilitators for the provision of actionable processes of care important for patients with persistent or chronic critical illness. Design: Qualitative descriptive interview study. Methods: Secondary analysis of semi-structured telephone interviews (December 2018 – February 2019) with professionally diverse clinicians working with adults experiencing persistent or chronic critical illness in Canadian intensive care units. We used deductive content analysis informed by the Social-Ecological Model. Results: We recruited 31 participants from intensive care units across nine Canadian provinces. Reported intrapersonal level barriers to the provision of actionable processes of care included lack of training, negative emotions and challenges prioritizing these patients. Facilitators included establishment of positive relations and trust with patients and family. Interpersonal barriers included communication difficulties, limited access to physicians and conflict. Facilitators included communication support, time spent with the patient/family and conflict management. Institutional barriers comprised inappropriate care processes, inadequate resources and disruptive environmental conditions. Facilitators were regular team rounds, appropriate staffing and employment of a primary care (nurse and/or physician) model. Communitylevel barriers included inappropriate care location and insufficient transition support. Facilitators were accessed to alternate care sites/teams and to formalized transition support. Public policy-level barriers included inadequacy of formal education programs for the care of these patients; knowledge implementation for patient management was identified as a facilitator. Conclusion: Our results highlighted multilevel barriers and facilitators to the delivery of actionable processes important for quality care for patient/family experiencing persistent or chronic critical illness. Impact: Using the Social-Ecological Model, the results of this study provide intra and interpersonal, institutional, community and policy-level barriers to address and facilitators to harness to improve the care of patients/family experiencing persistent or chronic critical illness. Reporting Method: Consolidated criteria for reporting qualitative studies. [ABSTRACT FROM AUTHOR]

Introduction: The Fundamental Critical Care Support Course (FCCS) is a standardized multidisciplinary program designed to educate participants on the basics of identification and management of patients with critical illness. Our objective was to evaluate the effect of FCCS participation on confidence in the assessment and management of critically ill patients and attitudes towards multidisciplinary education and interprofessional care in a multidisciplinary group of participants. Methods: Participants enrolled in the FCCS course from May 2018 to November 2019 were solicited to participate in a series of surveys evaluating their course experience and confidence in critical care. Attitudes towards multidisciplinary education and interprofessional care were evaluated using the Student Perceptions of Interprofessional Clinical Education-Revised Instrument version 2 (SPICE-R2) tool. A prospective pre- and post-design with a self-report survey including retrospective pre-training assessment and a 3-month follow-up was conducted. Statistical analysis was performed using descriptive statics and non-parametric methods. Results: 321 (97.9%) of the course participants enrolled in the study and completed the confidence survey and SPICE-R2 tool pre-course. Nurses (113, 35.4%) and physicians (110, 34.4%) made up the largest groups of participants, although physician assistants and paramedics were also well represented. Confidence in recognition and management of critical illness significantly improved across all studied domains after course completion, with the mean total confidence score improving from 32.96 pre-course to 41.10 post-course, P < 0.001. Attitudes towards multidisciplinary education and interprofessional care also improved (mean score 41.37 pre-course vs 42.71 post-course, P < 0.001), although pre-course numbers were higher than expected which limited the significance to only certain domains. Discussion: In a multidisciplinary group, completion of FCCS training led to increased confidence in all aspects of critical illness measured. A modest increase in attitudes regarding multidisciplinary education and interprofessional care was also demonstrated. Further study is needed to assess whether this increased confidence translates to improvements in patient care and outcomes. [ABSTRACT FROM AUTHOR]

Simple Summary: Bronchopleural fistula after lobectomy for lung cancer is a rare and life-threatening complication. Recognizing and managing this complication in time is often very complex for the clinicians and surgeons. Several surgical and endoscopic therapeutic approaches were described for the management of broncho-pleural fistula during the time period under study; however, the various instituted treatments depend much more on the experiences of individual centers than on a codified algorithm. Indeed, at present, there are no codified guidelines in the literature for its treatment. On the basis of our 25 years of experience, we tried to outline a diagnostic and therapeutic algorithm to help clinicians in the management of this feared complication Backgrounds: Our goal is to evaluate the correct management of broncho-pleural fistula (BPF) after lobectomy for lung cancer. Methods: We retrospectively reviewed our 25-years' experience and reported our strategies and our diagnostic algorithm for the management of post-lobectomy broncho-pleural fistula. Results: Five thousand one hundred and fifty (5150) patients underwent lobectomy for lung cancer in the period between 1998 and 2023. A total of 44 (0.85%) out of 5150 developed post-operative BPF. In 11 cases, BPF was solved by non-invasive treatment. In nine cases, direct surgical repair of the bronchial stump allowed BPF resolution. In 14 cases, a completion intervention was performed. In six cases, we performed open window thoracostomy (OWT) after lobectomy; in two cases, the BPF was closed by percutaneous injection of an n-butyl cyanoacrylate glue mixture. In two cases, no surgical procedure was performed because of the clinical status of the patient at the time of fistula developing. Thirty-day and ninety-day mortality from fistula onset was, respectively, 18.2% (eight patients) and 22.7% (ten patients). Thirty-day and ninety-day mortality after completion pneumonectomy (12 patients) was, respectively, 8.3% (one patient) and 16.6% (two patients). Conclusions: The correct management of BPF depends on various factors: timing of onset, size of the fistula, anatomic localization, and the general condition of the patient. In the case of failure of various initial therapeutic approaches, completion intervention or OWT could be considered. [ABSTRACT FROM AUTHOR]

Critical illness-related corticosteroid insufficiency or CIRCI is characterized by acute and life-threatening disfunction of hypothalamic–pituitary–adrenal (HPA) axis observed among intensive care unit- staying patients. It is associated with increased circulating levels of biological markers of inflammation and coagulation, morbidity, length of ICU stay, and mortality. Several mechanisms are involved in CIRCI pathogenesis: reduced CRH-stimulated ACTH release, peripheral resistance to glucocorticoids, altered cortisol synthesis, impaired cortisol-free fraction and bioavailability. Diagnostic and therapeutic management of this condition in children is still debated, probably because of the lack of agreement among intensive care specialists and endocrinologists regarding diagnostic criteria and prevalence of CIRCI in paediatric age. In the present narrative review, we focused on definition of CIRCI in paediatric age and we advise on how to diagnose and treat this poorly understood condition, based on current literature data. [ABSTRACT FROM AUTHOR]

Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. Design: Positioned within a s ocial constructivist paradigm, a secondary discourse analysis of s emi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. Setting/participants: A total of 26 children and young people aged 5–17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. Results: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities. [ABSTRACT FROM AUTHOR]

Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions. Aim: To explore adult siblings' perspectives on the experience of having a sister/brother with a childhood life-limiting condition and to identify their perceived needs and preferences for support. Design: A qualitative exploratory study design with data generated by semi-structured interviews and analysed using reflexive thematic analysis, underpinned by interpretivism. Setting/participants: Twenty-two siblings (17–42 years old) were recruited via a children's hospice in England. Results: The experience of having a sibling with a life-limiting condition changes over time in response to how understandings of the meaning of a life-limiting condition develop and changing roles/relationships with parents and siblings. These experiences have an enduring impact on adult sibling's mental health which is compounded by their unmet (and sometimes unrecognised) support needs in adolescence and adulthood. Siblings described the importance of support continuing into adulthood with a focus on the provision of psychotherapy and peer support. Conclusions: Having a sister/brother with a childhood life-limiting condition appeared to have a significant and ongoing impact on adult siblings but their support needs, particularly for psychotherapy and peer support, are overlooked. The findings highlight the importance of ensuring siblings are included in family assessments and that family-based interventions are developed to promote sibling-parent relationships. [ABSTRACT FROM AUTHOR]

Background At the end of life, individuals may experience physical symptoms such as pain, and guidelines recommend medications to manage these symptoms. Yet, little is known about the symptom management long-term care (LTC) residents receive at the end of life. Our research team developed a metric--whether residents receive one or more prescriptions for an end-of-life symptom management medication in their last two weeks--to explore end-of-life care for LTC residents. This qualitative study aimed to inform the refinement of the end-of-life prescribing metric, including the acceptability and applicability to assess the quality of a resident's symptom management at end-of-life. Methods We conducted 14 semi-structured interviews with Ontario health-care providers (physicians and nurses) who work in LTC homes and family caregivers of residents who died in LTC. Interviews were conducted virtually between February 2021 and December 2022, and were analyzed using thematic analysis. Results We identified three major themes relating to perceptions of the metric: 1) appropriateness, 2) health-care provider applicability, and 3) caregiver applicability. Participants noted that the metric may be appropriate to assess end-of-life care, but noted important nuances. Regarding applicability, health-care providers found value in the metric and that it could inform their practice. Conversely, caregivers found limited value in the metric. Conclusion The proposed metric captures a very specific aspect of end-of- life care--whether end-of-life medications were prescribed or not. Participants deemed that the metric may reflect whether LTC homes have processes to manage a resident's end-of-life symptoms with medication. However, participants thought the metric could not provide a complete picture of end-of-life care and its quality. [ABSTRACT FROM AUTHOR]

Background: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). Methods: Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. Results: A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. Conclusions: Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. Systematic review pre-registration: PROSPERO [CRD42021244859]. [ABSTRACT FROM AUTHOR]