Social homecare workers (HCWs) play important roles in supporting people with care and support needs who wish to remain at home when approaching end‐of‐life. Given the difficulties in recruiting and retaining staff within the homecare sector and the challenging nature of end‐of‐life care, it is essential to understand the experiences and needs of this workforce and to recognise the challenges they face and support they require. This paper reports findings in respect of the experiences of HCWs providing end‐of‐life care. The data reported here is part of a study which aimed to inform improvements to the quality and sustainability of homecare at end‐of‐life and to develop training resources. A multiple case study approach was undertaken within three contrasting sites in England, delineated by local authority boundaries and chosen to reflect different demographic characteristics. Semistructured interviews were carried out with 133 participants who included HCWs, managers, clients, carers (families/friends), health and social care practitioners, and service commissioners. Interviews were supported by Pictor, a visual elicitation method used to map networks and relationships. Data were analysed using reflexive thematic and matrix analyses. The findings presented here highlight three themes in respect of HCW experiences when providing care at end‐of‐life: unique privileges and challenges; relational aspects of care important at end‐of‐life; and the multiagency challenges and opportunities experienced. Wider factors such as health and social care policy and the care sector environment, both of which influence HCW experiences, were also considered. The findings are discussed in the context of an adaptation of Bronfenbrenner’s Ecological Systems Theory to explore complexity in end‐of‐life care, and are related to current evidence with suggestions made for policy, practice and future research.
Background: Decision making about antithrombotic therapy (ATT) in patients with advanced cancer near the end of life is fraught with clinical uncertainty and can significantly affect care. Despite its importance and complexity, ATT is often deprioritized or guided by legacy prescribing and monitoring patterns. Management spans multiple specialties, with roles and responsibilities frequently blurred. Clinicians’ perspectives remain largely underexplored, which are crucial to inform improved care models. Objectives: This study explores clinicians’ experiences of current practice of continuing and deprescribing ATT in patients with advanced cancer at the end of life. Methods: Qualitative methodology using semistructured interviews with clinicians involved in ATT management at the end of life, across Denmark, France, Spain, and the United Kingdom. Data were analyzed using Framework Analysis. Results: Eighty clinicians across a range of specialties were interviewed. Two major themes were generated: (1) balancing complexities in ATT management: clinicians reported several challenges, from ambiguity surrounding roles and responsibilities, delicacy around timing, and variance in risk perceptions of ATT, balanced with patient preferences; and (2) culture of continuation: clinicians described a general and ATT-specific culture of continuation and reported a passivity in relation to ATT review. Conclusion: The management of ATT in this context is multifaceted, influenced by many competing factors. These complexities need to be understood and addressed to support decision making related to ATT at the end of life.
Unprofessional behaviours such as bullying, harassment, and microaggressions negatively affect patient safety and staff psychological wellbeing in healthcare systems globally. These behaviours do so by: (i) inhibiting health care professionals’ abilities to speak up to raise safety concerns; (ii) impairing team communication and individuals’ concentration; and (iii) promoting tolerance of bad practice. Unfortunately, there is little consensus in practice or academia about how these behaviours are defined. This can lead to an underestimation of the prevalence of these behaviours, inhibition of speaking up by victims and bystanders, and reduced accountability by those who enact these behaviours. We aimed to map definitions of unprofessional behaviours between staff to understand their similarities and differences and to develop a useful typology for theory-informed interventions. We used a six-step modified best-fit framework synthesis methodology to formulate our new typology, as a part of a wider realist review project. We employed a systematic approach to develop a framework for understanding UB. First, we identified relevant literature through a systematic search of Embase, CINAHL and MEDLINE databases (and more) (n = 146 sources). An initial framework outlining the dimensions of unprofessional behaviours was then constructed based on extracted definitions. Terms from included studies were then coded against this framework, with new dimensions introduced as needed to accommodate terms that did not align with existing categories. The resulting framework was refined iteratively and validated through stakeholder engagement, enhancing its relevance and validity. We identified 37 behaviours drawing on 146 literature sources and found little consensus in how unprofessional behaviours between staff are defined in the academic literature. By collating definitions, we identified five dimensions inherent to unprofessional behaviours between staff namely: visibility; inherent frequency; whether they are highly targeted; if behaviours target protected characteristics (personal attributes that are legally safeguarded against discrimination in the UK and many other countries, such as race, sex or religion); if behaviours are physical; and if hierarchy is required. These dimensions enabled formulation of the typology with increased understanding of the differences between unprofessional behaviour types. We found that poor and inconsistent understanding of unprofessional behaviour could undermine interventions by inhibiting speaking up, enabling instigators to avoid accountability, and inhibiting ability to measure unprofessional behaviour and address it. Our typology provides a useful resource for academics, healthcare organisations, intervention architects, and individuals who are seeking to understand and clarify the range of unprofessional behaviours that may be encountered in healthcare settings.
Identifying studies for inclusion in realist syntheses using title and abstract screening is challenging given the need to unearth explanatory insights to build context-mechanism-outcome configurations. Such insights may only be uncovered through full-text paper reading. To address this issue, a novel approach for identifying studies has been developed called Reverse Chronology Quota Record Screening (RCQRS). Results of database searches are screened in reverse chronology, and in stages, to fill quotas matching the requirements of the review. RCQRS may be beneficial in any of the following circumstances: (a) the timeframe to complete the synthesis is short; (b) the scope of inquiry is not fully defined, (c) the availability of suitable literature is beyond the screening capacity of the reviewers; or (d) the availability of literature is sparse and reviewers seek to extrapolate insights from other areas. In contrast to RCQRS, exhaustive title and abstract screening (i.e., screening entire database results) may hamper study selection due to being overwhelming in volume and time-intensive, resulting in a causally thin cohort of papers for analysis. RCQRS used in stages, and in conjunction with other search strategies (e.g., hand searching, backward citation tracking, and expert solicitation) can support creative, robust analytical insights with causally rich extrapolations. Using the Horizon-EU funded SERENITY study on deprescribing in palliative care as a case example, the benefits and limitations of RCQRS are explored. Finally, a checklist template is offered for teams who wish to reflect on, and transparently report, the use of RCQRS in their realist synthesis.
Introduction Randomised controlled trials (RCTs) are essential to determine intervention effectiveness yet they often fail to capture how and why interventions succeed or fail in different contexts. Embedding a process evaluation alongside a clinical trial allows exploration of implementation processes, intervention fidelity and contextual influences. The CANFit trial is a basket-design RCT evaluating a personalised, remotely delivered exercise intervention for people diagnosed with breast, lung and bowel cancer with increased risk of recurrence. This embedded process evaluation aims to understand how individual, team and organisational factors influence intervention delivery and uptake.Methods and analysis A concurrent, mixed-methods process evaluation will be conducted using a hybrid type 1 design. Data will be collected from multiple sources, including participant and trainer questionnaires, semi-structured interviews, intervention adherence logs, trainer diaries and observations. Five core implementation outcomes, guided by Proctor’s framework—acceptability, appropriateness, fidelity, penetration and sustainability—will structure the evaluation. Quantitative data will be analysed descriptively and qualitative data will undergo framework analysis using both deductive and inductive coding. Data integration will occur through a convergent mixed-methods approach, using context-mechanism-outcome (CMO) configurations to refine programme theory.Ethics and dissemination Ethical approvals were obtained through Hull York Medical School (ID: 23/SS/0060) and the UK NHS Health Research Authority (ID: 327663). All participants will provide informed consent before taking part. Data will be handled according to General Data Protection Regulation and University of Hull data management policies. Findings will be disseminated through peer-reviewed publications, conference presentations, stakeholder reports and lay summaries for participants and the public.Trial registration number ISRCTN97662203.
Background The demand for home-based palliative care is increasing, driven by ageing populations and a rise in multiple long-term conditions. Community health nurses are pivotal to enabling people to be cared for and die at home, yet their contributions to palliative and end-of-life care remain under-recognised and poorly understood. Previous international reviews have focused on specific themes but in-depth synthesis of evidence from one national health system has not been undertaken. Aim This scoping review aimed to identify, map and synthesise evidence within a single national health system on the community health nursing workforce in palliative and end-of-life care provision for adults living at home (including their role and responsibilities, and identifying challenges and potential solutions). Method This scoping review followed the Joanna Briggs Institute methodology and the PRISMA-Scoping Review checklist statement. We systematically searched thirteen electronic databases and grey literature sources, from 2009 to 2025. UK-evidence reporting on community health nurses’ provision of palliative and end-of-life care to adults living at home was included. Data were charted using a structured data extraction form and grouped thematically to understand the nature of their roles and responsibilities, the challenges faced in providing such care, and potential solutions to mitigate these challenges. Results A total of 250 items/reports reflecting 239 included items/reports (11 merged as same project) were included. The main challenges community health nurses are facing in palliative and end-of-life care provision are driven by the rising demand and increasing complexity of the needs of persons dying at home. This requires rapid role evolvement, expertise, and effective integration with multiple providers and services, and impacts on staff wellbeing and morale. To mitigate these challenges, requires recognition of and training to support their rapidly evolving roles in palliative and end-of-life care and to meet the increasingly complex needs of persons dying at home and their families. There is limited understanding of safe caseloads and data to demonstrate the extent of palliative and end-of-life care provided by community health nurses. Conclusions Community health nurses are essential to the delivery of palliative and end-of-life care at home. Addressing workforce capacity, role clarity, and training gaps is critical to meeting future demand and ensuring equitable, high-quality care. This review highlights the urgent need for these challenges in community health nursing to be addressed to support sustainable palliative and end-of-life care delivery.
Background:Chronic breathlessness is common and disabling in chronic medical conditions. There is good rationale to use opioids from neuroscience and exercise laboratory studies. Objectives:We assessed the 56-day effectiveness, cost-consequences and safety of long-acting oral morphine for breathlessness in people with cardio-respiratory diseases or cancer. Methods:We conducted a parallel-group, randomised, placebo-controlled trial in 11 UK outpatient services, comparing 10-20 mg daily oral morphine with placebo (and blinded laxative) in people with moderate to severe breathlessness, with embedded health economic evaluation. The primary outcome was worst breathlessness/24 hours (0-10 numerical rating scale) at day 28. Secondary outcomes included: physical activity levels; worst cough numerical rating scale/24 hours; Short Form questionnaire-12 items; EuroQol-5 Dimensions, five-level version; morphine-related toxicities; caregiver burden. Analyses were by modified intention-to-treat (modified intention-to-treat; ≥ 1 dose of study drug). Primary analysis used repeated measures of covariance adjusted for baseline worst breathlessness and stratification variables. The planned sample size (90% power, 20% withdrawal) was 158. We undertook two exploratory substudies, a process theory-informed evaluation and an open-label follow-on study. Results:Between 18 March 2021 and 26 October 2023, 143 were randomised (75 morphine, 68 placebo); 140 formed the modified intention-to-treat population [90% power; males 66%; mean age 70.5 (standard deviation 9.4)]. By day 28, 60/73 (82%) morphine versus 56/67 (84%) placebo participants had ≥ 90% adherence. At day 28, we found no evidence of a primary outcome difference [adjusted mean difference; 0.09 (95% confidence interval -0.57 to 0.75), p = 0.78], or any secondary measure except improved cough seen at day 56 [adjusted mean difference; -1.41 (-2.18 to -0.64)]. Increased moderate/vigorous physical activity was seen at day 28 [adjusted mean difference; 9.51 minutes/day (0.54 to 18.48)], but this was not significant after multiple measures correction. There were 413 adverse events: 251 versus 162 events in 63/73 (86%) morphine versus 51/67 (76%) placebo participants; 18 serious adverse events in 15 participants (morphine, 3/15 related; placebo, 0/3 related); no treatment-related deaths. Morphine participants used more inpatient and fewer outpatient services. In the 56-day base-case analysis, morphine was associated with similar mean per-patient costs and quality-adjusted life-years: an increase of £24 (95% confidence interval -£395 to £552) and 0.002 (95% confidence interval -0.004 to 0.008) quality-adjusted life-years. Limitations:Interpretation is cautious, but findings are plausible and consistent with other evidence. We infer improved exercise endurance. Most participants had chronic lung disease and minoritised ethnic communities are under-represented. Conclusion:We found no evidence that morphine improved worst breathlessness intensity. The pattern of improved physical activity and cough, without increased sleepiness, sedation or cognitive impairment, with good adherence provides rationale for future research. A therapeutic trial of morphine should be evaluated using an exertional task. Future work:Further research is needed to understand if there is any role of morphine in chronic breathlessness, but our findings do not support its use in this setting. Future studies should consider physical activity levels (actigraphy), exercise endurance (isotime/isoload breathlessness measures) or cough as the primary outcome. We need better representation from minoritised ethnic communities and people with heart failure. Funding:This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number 17/34/01.
Digital health interventions offer promise for addressing unmet needs in individuals living with and beyond lung cancer (LWBLC). ExerciseGuideUK, a personalised, web-based exercise platform, was developed for those LWBLC. This study aimed to evaluate ExerciseGuideUK. Participants were recruited from Hull University Teaching Hospital and used ExerciseGuideUK over eight weeks. Feasibility and acceptability were assessed using quantitative measures, including the System Usability Scale, structured questionnaires, and qualitative interviews (guided by the Theoretical Framework of Acceptability). A novel mixed-methods integration approach called the Pillar Integration process (PIP) was used to integrate quantitative and qualitative findings on feasibility, engagement, barriers, and adaptation potential. Eighteen participants (mean age 65 ± 14.42y) enrolled. Recruitment and retention rates were 30.5
People with dementia often report a lack of post-diagnostic support, and much of the current dementia training available is for staff or carers, not for the person diagnosed. The Good Life with Dementia course was designed with and for people with a diagnosis of dementia and is co-delivered by peer-tutors living with dementia, supported by a trained facilitator. This study used realist-informed methods, underpinned by a co-productive ethos which values all sources of expertise equally, to better understand the core constructs underpinning the Good Life approach and how these operate to produce outcomes. The resultant, evidence-based programme theory suggests that - in a context characterised by shared experience, equality and positive expectations - three key mechanisms can trigger: sharing of experiences and resources; peer-led learning and responding; and the taking on of meaningful roles. Qualitative evidence indicates that these mechanisms are likely to lead to four interconnected outcomes: enjoyment; feeling valued (personhood); (re)building social confidence and connections; and positive reframing of life with dementia, meaning participants felt more prepared to face the challenges ahead. Not everyone diagnosed with dementia will want to take part in a peer-led course, but interventions like a Good Life with Dementia could be part of a suite of post-diagnostic options available to help people with dementia to live as well as possible. The next step will be to establish whether the approach can be manualised, delivered with different communities and evaluated in trial conditions. This will be assessed via an inclusive feasibility study already underway and due to conclude in August 2027.
Background: Malignant bowel obstruction is a life-threatening condition associated with advanced cancer that causes severe pain, nausea and vomiting. Decision-making requires input from multiple specialities, outcomes are uncertain and clinical communication is challenging. Better understanding of the mechanics of shared decision-making would improve the management of this condition. Aims: To investigate behavioural and structural influences on decisional deliberation during the management of malignant bowel obstruction and develop strategies for improved communication. Design: A realist review following RAMESES guidelines; protocol registered in PROSPERO (CRD42022308251). Data sources: Iterative literature searches were conducted from December 2021 to January 2023, with an update search conducted in January 2024. All relevant data sources relating to shared decision-making in the management of malignant bowel obstruction were included. Results: Seventy-one papers were included. Realist synthesis led to the development of context-mechanism-outcome configurations in four conceptual areas to explain influences on practitioner, patient and caregiver engagement in shared decision-making: (1) implicit misunderstandings, (2) the nature of the decision, (3) interpersonal dynamics and (4) a fragmented ethos of care. Implicit social mechanisms can affect the transparency of shared decision-making and the value individual decision-makers assign to the process, and motivation to participate is likely to vary as circumstances change. Conclusions: Communication around patients with advanced cancer and malignant bowel obstruction is characterised by ambiguity, unrealistic expectations and a lack of interdisciplinary coordination. Crucial features of effective decisional deliberations include alignment of goals of care, unambiguous explanation of treatment limitations and iterative communication to facilitate the formation of realistic expectations.
Social homecare workers (personal aides/assistants) are crucial for people wishing to receive end-of-life care at home. To determine current UK social care policy priorities and gaps regarding end-of-life care provision by homecare workers, including support and training for this workforce. Policy document review and content analysis; eligible documents were current UK policy documents informing homecare worker practice/service delivery, identified by team expertise, networks, study partners and bibliography review of included documents. We quantified (existence, frequency) predetermined codes of interest in relation to end-of-life/palliative/care of the dying/bereavement, homecare workforce, and support and training. Where homecare worker codes were contextually situated, we extracted and tabulated the surrounding text and examined for reference to training and support. We subjected extracted text content to framework analysis through the lens of Bronfenbrenner’s Adapted Ecological Systems Theory. One thousand, four hundred and sixty-four homecare worker codes were identified in the 36 included documents, but only 72 times/17 documents in the context of end-of-life care. In the context of end-of-life care and homecare workers, education and training codes were present 3 and 35 times respectively. The need for end-of-life education and training was recognised, but in general, little detail about delivery and implementation was given (e.g., whose responsibility; funding; minimum standard and content). The homecare worker role in end-of-life care is poorly recognised in national policy. Little guidance is provided regarding minimum training standards or delivery. Given an ageing population globally and expected increased demand for end-of-life homecare, national and international policy guidance should include this workforce. What was already known? • Social homecare workers (variously known as personal assistants/aides or helps) play a significant role in providing end-of-life care for individuals in their own homes. • The demand for homecare is increasing due to an ageing population globally and access to good quality provision of end-of-life care is a priority to support community-based care. What are the new findings? • There is a policy gap regarding homecare workers in the context of end-of-life care, with little progress since 2010. • Few policy documents recognise the role of homecare workers in providing end-of-life homecare and there is little evidence that previous highly relevant policy recommendations (2010) have been incorporated in more recent current policy or enacted in practice. • The need for homecare workers education and training in the context of end-of-life care is recognised, but few details about minimum content and standards, or delivery are given. What is their significance? • Although this is a UK-based study, given the ageing population internationally with likely increased need for care at the end-of-life, training, role definitions, and support to enable the homecare worker workforce to provide end-of-life care has relevance as a clinical and social care practice priority around the world. • Policy guidance around end-of-life care should i) include the social homecare workforce; stipulate minimum training requirements in relation to end-of-life care, and ii) integrate this support and training into routine job descriptions, and as part of the working day. • Improved training and support is an important step to increase the quality of end-of-life care provision.
Introduction Language and communication difficulties are common across a range of dementias including primary progressive aphasia (PPA). Better Conversations with PPA (BCPPA) is a co-designed communication partner training intervention that aims to improve the experience of conversations for a person with communication difficulties. An NHS-based pilot study of face-to-face BCPPA demonstrated positive outcomes but also raised questions about when and where this intervention should be delivered (at diagnosis or later; face to face and/or remotely), how to best measure the effectiveness of the intervention in line with participant’s priorities and whether BCPPA might be acceptable and useful to people with a range of dementia types. We also had questions about the possible economic implications of BCPPA. In preparation for a future full effectiveness study, the present study will address the following questions: Implementation What is the optimal schedule and dosage of BCPPA versus treatment as usual? Feasibility What are the eligibility criteria for the BCPPA intervention? Is remote delivery of BCPPA acceptable to people with PPA and other dementias? Can the BCPPA be delivered remotely as intended? Do planned outcome measures show sensitivity to change pre-/post-/3 months post BCPPA? What are the barriers and facilitators to implementation of BCPPA in an NHS setting? What is the most appropriate perspective of analysis and way of measuring costs and outcomes in a future cost-effectiveness analysis of BCPPA versus usual care? Methods and analysis In line with Medical Research Council guidance on development and management of complex interventions, Skivington et al , 2021 this protocol paper describes a phase II mixed-methods process evaluation and health economic study. This protocol for a randomised controlled pilot feasibility study compares the BCPPA communication partner training intervention with a deferred entry group for people with PPA and other rare dementias and their communication partners. Participants will be recruited at diagnosis and review appointments from two NHS trusts. Participants who have completed a repeated baseline measure will be randomised to either the BCPPA intervention or a deferred entry group. The intervention will be delivered remotely, via teletherapy, over 4–6 weeks depending on goal achievement. The deferred entry group will receive the intervention after a 6-week waiting period, and all participants will be assessed immediately post intervention and again at 3 months post intervention. Outcome measures have been selected in line with the current recommendations for a core outcome set for PPA and to address questions of implementation and health economic evaluation. Qualitative and quantitative analysis methods will be used to explore the data. Ethics and dissemination Ethical approval for this study was granted by the Health Research Authority for England and Wales IRAS (Project ID: 341322 REC REF 24-NI-0123). Results from this study will be published in peer-reviewed journal articles and shared with participants and patient and public involvement advisors in accessible formats. Trial registration number ISRCTN16268666 .
Delirium affects up to two-thirds of palliative care unit (PCU) inpatients, causing distress for patients, families, and staff, and contributing to complex care needs and increased healthcare resource use. Although evidence-based guidelines exist, their consistent implementation in PCUs is limited, and implementation strategies to support guideline-adherent care have not been rigorously evaluated in this setting. Creating Learning Environments for Compassionate Care-Palliative Delirium (CLECC-Pal Delirium) is a co-designed multi-component implementation strategy to help embed guideline-adherent delirium care within routine PCU practice. This cluster randomised controlled trial (cRCT) evaluates the effectiveness and cost-effectiveness of the implementation strategy using an implementation-to-target design, with embedded economic and process evaluations. Adaptive implementation-to-target, Type III hybrid effectiveness-implementation parallel group cRCT across 20 PCUs (10 per arm, 50 patient records per cluster at each timepoint) in the UK, randomised 1:1 to CLECC-Pal Delirium or usual care. Randomisation is stratified by unit size, education provision, and provider type (NHS/Charity). Sites will receive tailored support to achieve predefined implementation-readiness criteria prior to data collection. The primary outcome is the proportion of each admission’s inpatient days affected by delirium (delirium days), measured retrospectively using a validated chart-based method adapted for palliative care. Secondary outcomes include adherence to delirium care guidelines, patient symptom burden, functional status, and incremental cost-effectiveness. The sample size (1200 admission episodes with delirium) provides 92.3
Introduction:Breathlessness action plans guide people to self-manage acute-on-chronic breathlessness episodes using non-pharmacological strategies to help breathing and overcome panic. We aimed to identify plans available for people with chronic obstructive pulmonary disease (COPD) and describe their development, content, quality, use, and evidence for benefit. Methods:Two descriptive methodologies were used, overseen by a team of people with COPD and carers/support persons, clinicians and researchers: 1) A scoping review (academic databases, internet) identified English-language plans and research; 2) An online survey of plan-users and clinicians about their plan-related experience and perceived benefits. Each plan underwent appraisal by a person with COPD/support person and clinician/researcher using the Patient Education Materials Assessment Tool (PEMAT), content analysis and reading grade assessment. Results:Of 69 plans identified, 88% (n=61/69) included breathing techniques, 78% (n=54/69) positioning, 65% (n=45/69) airflow, 36% (n=25/69) relaxation/distraction, 30% (n=21/69) stopping/slowing, 22% (n=15/69) remaining calm, 13% (n=13/69) reassurance, 7% (n=5/69) support from others and 4% (n=3/69) loosening clothing. The 48 plans that could be PEMAT-analysed scored an average of 64% for understandability and 68% for actionability. Their median reading grade was 8.2 (inter-quartile range 2.2). We identified efficacy support from only one pre/post study and feasibility/acceptability from qualitative data in two feasibility trials, each focusing on a different plan. In the survey, 67% (n=31/46) of plan-users self-reported avoiding calling an ambulance over the past year by using their plan. 93% (n=94/101) of clinicians perceived patient benefit in the form of increased confidence/reduced anxiety, 60% (n=61/101) reduced frequency of episodes, 53% (54/101) reduced need for ambulance/emergency department, and 41% (41/101) increased activities of daily living, while 4% (4/101) were unsure of any benefit. Discussion:Despite multiple plans being available, few studies have assessed acceptability or efficacy. Further research is needed to evaluate net effects on self-management, breathlessness-related outcomes and healthcare usage.
INTRODUCTION:To develop a European shared decision-support tool (SDST), a two-round Delphi process was used to achieve consensus on aspects relating to the antithrombotic therapy (ATT) deprescribing discussions and process in end-of-life cancer patients. METHODS:Conducted between September 2024 and March 2025, the Delphi survey was developed by a multidisciplinary 24-member steering committee (SC), including medical specialists in oncology, hematology, palliative care, primary care, geriatrics, and vascular medicine. The survey involved 188 experts from these specialties across eight European countries. Consensus was defined with pooled items as ≥70 % agreement with a final decision by the SC. Themes covered deprescribing timing, stakeholders, reassessment and clinical drivers of patients with ATT, SDST, and choice of outcomes for a randomized controlled trial (RCT) to evaluate the SDST. RESULTS:Round 1 reached consensus for seven pooled questions (37 %), especially the reassessment of ATT deprescribing. Considering these results, the SC reformulated round 2 to reduce ambiguity and move toward consensus. The SC made the final decision. Three medical specialties should be involved in ATT deprescribing: palliative care specialists, oncologists, and general practitioners after a triggering circumstance such as clinical triggers or at 3-month prognosis. For the SDST design, the findings confirmed that this tool would be meaningful to clinicians. Eleven predefined outcomes were selected for a future RCT. CONCLUSION:These results succeeded in shaping the content of the future SDST and mapping its useability in palliative care clinical pathways across Europe, with the perspective to support informed decision-making, reduce complications, and improve quality of life in this population.
BACKGROUND:The importance of palliative care for Intensive Care Unit (ICU) patients/families is known. Little is known about implementing this care in practice, and how to support healthcare professionals in this implementation. This study uses survey methodology informed by Normalisation Process Theory to assess implementation processes for providing palliative care in the ICU. METHODS:A descriptive cross-sectional survey was conducted with UK healthcare professionals involved in providing or organising palliative care in the ICU. Implementation processes were assessed using the validated 23-item Normalisation MeAsure Development (NoMAD) instrument. Absolute (n) and relative frequencies, median and interquartile ranges were reported. Mann-Whitney U Test assessed differences between specialist palliative care and ICU respondents. One open-ended item captured free-text responses, analysed using NPT-guided framework analysis. RESULTS:From 153 completed surveys, 69% of respondents were ICU professionals, 31% were specialist palliative care professionals. There was no statistically significant difference between responses from ICU and specialist palliative care professionals. Likert responses showed that respondents felt familiar with palliative care in the ICU and felt it was part of their normal work. Positive tendency was found toward implementation of palliative care in the ICU with coherence (sense-making work), cognitive participation (relational work) and reflexive monitoring (appraisal work). Rating of collective action (operational work) showed a more neutral tendency, highlighting this as a potential target for improvement. Free-text responses were categorised into themes within Normalisation Process Theory constructs: Coherence-recognising and stratifying need, and nuances within palliative care in the ICU; Cognitive participation-interdisciplinary interfaces and building capacity; Collective action-procedures for provision, pressures on provision, and perceived capability; Reflexive monitoring-perceived value. CONCLUSION:This novel study uses NPT to assess professional processes relating to implementation of palliative care in the ICU. Findings suggest important perceived implementation gaps may lie within operational work such as tailoring utilisation of existing resources, ensuring leadership support, and building skill sets. Dedicated qualitative research is needed to explain how these issues operate in context and to examine potential patient- and family-related influences.
Introduction Evidence suggests a 38% risk reduction in breast and bowel cancer-specific mortality with higher levels of exercise, however, most of this evidence is observational. More clinical trials are needed to build strong evidence for exercise’s impact on recurrence and survival. This study aims to assess the feasibility, acceptability and potential efficacy of a remote, tailored exercise programme on disease-free survival in patients recently completing curative treatment for early-stage, high-risk lung, breast or bowel cancer.Methods and analysis This UK-based, multicentre randomised controlled basket feasibility trial compares a personalised, remote-delivered exercise programme supported by exercise professionals against usual care. Potential participants are approached if they are: aged 18 or over, diagnosed with high-risk, early-stage breast, bowel or lung cancer, and within 24 weeks of completing primary curative treatments. Participants complete objective measures of physical function (submaximal cardiovascular fitness, endurance, muscle strength and balance), body composition (bioelectrical impedance) and self-reported outcomes (total physical activity, sleep quality, general quality of life (QoL), cancer-related QoL and exercise confidence/motivation). Clinical case note review provides disease-free survival outcomes at 6, 12 and 24 months. The 12-week programme is delivered remotely (via phone, email and/or video conference) with trainer contact tapering off over the subsequent 12 weeks (24 weeks total). Recruitment is ongoing with a 660-participant goal. Descriptive measures (quantitative and qualitative) will be reported for feasibility outcomes: recruitment, adherence, retention rates, data collection quality, adverse events, intervention acceptability and fidelity. A process evaluation is being conducted concurrently and is reported separately. Kaplan-Meier curves will be plotted and median disease-free survival calculated for each arm. To determine intervention impact, a log-rank test (unadjusted) will compare 2-year disease-free survival between groups within and among cancer types. Secondary outcomes (physical function status, general/cancer-specific QoL and determinants of meeting activity guidelines) will be reported at each time point.Ethics and dissemination Ethical approvals were obtained through Hull York Medical School (ID: 23/SS/0060) and UK NHS Health Research Authority (ID: 327663). Findings will be submitted for publication in high-impact journals, presentation at national and international conferences, press releases where appropriate, and dissemination activities to be decided on with the Patient Advisory Group.Trial registration number ISRCTN97662203.
Breathlessness is highly prevalent in low and middle-income countries (LMICs). Low-cost, non-drug, breathlessness self-management interventions are effective in high-income countries. However, health beliefs influence acceptability and have not been explored in LMIC settings. Review with stakeholder engagement to co-develop explanatory programme theories for whom, if, and how breathlessness self-management might work in community settings in India. Iterative and systematic searches identified peer-reviewed articles, policy and media, and expert-identified sources. Data were extracted in terms of contribution to theory (high, medium, low), and theories developed with stakeholder groups (doctors, nurses and allied professionals, people with lived experiences, lay health workers) and an International Steering Group (RAMESES guidelines (PROSPERO42022375768)). One hundred and four data sources and 11 stakeholder workshops produced 8 initial programme theories and 3 consolidated programme theories. (1) Context: breathlessness is common due to illness, environment, and lifestyle. Cultural beliefs shape misunderstandings about breathlessness; hereditary, part of aging, linked to asthma. It is stigmatised and poorly understood as a treatable issue. People often use rest, incense, or tea, while avoiding physical activity due to fear of worsening breathlessness. Trusted voices, such as healthcare workers and community members, can help address misconceptions with clear, simple messages. (2) Breathlessness intervention applicability: nonpharmacological interventions can work across different contexts when they address unhelpful beliefs and behaviours. Introducing concepts like “too much rest leads to deconditioning” aligns with cultural norms while promoting beneficial behavioural changes, such as gradual physical activity. Acknowledging breathlessness as a medical issue is key to improving patient and family well-being. (3) Implementation: community-based healthcare workers are trusted but need simple, low-cost resources/skills integrated into existing training. Education should focus on managing acute episodes and daily breathlessness, reducing fear, and encouraging behavioural change. Evidence-based tools are vital to gain support from policymakers and expand implementation. Breathlessness management in India must integrate symptom management alongside public health and disease treatment strategies. Self-management interventions can be implemented in an LMIC setting. However, our novel methods indicate that understanding the context for implementation is essential so that unhelpful health beliefs can be addressed at the point of intervention delivery.