Search

Abstract Background A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. Method Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. Results A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. Conclusion The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.

Background Cardiovascular disease is the most common cause of death worldwide, highlighting the need for studies to determine options for palliative care within the management of patients with heart failure. Although there are promising examples of integrated palliative care and heart failure interventions, there is heterogeneity in terms of countries, healthcare settings, multidisciplinary team delivery, modes of delivery and intervention components. Hence, this review is vital to identify what works, for whom and in what circumstances when integrating palliative care and heart failure. Objectives To (1) develop a programme theory of why, for whom and in what contexts desired outcomes occur; and (2) use the programme theory to co-produce with stakeholders key implications to inform best practice and future research. Design A realist review of the literature underpinned by the Realist and Meta-narrative Evidence Syntheses: Evolving Standards quality and reporting standards. Data sources Searches of bibliographic databases were conducted in November 2021 using the following databases: EMBASE, MEDLINE, PsycInfo, AMED, HMIC and CINAHL. Further relevant documents were identified via alerts and the stakeholder group. Review methods Realist review is a theory-orientated and explanatory approach to the synthesis of evidence. A realist synthesis was used to synthesise the evidence as successful implementation of integrated palliative care and heart failure depends on the context and people involved. The realist synthesis followed Pawson’s five iterative stages: (1) locating existing theories; (2) searching for evidence; (3) document selection; (4) extracting and organising data; and (5) synthesising the evidence and drawing conclusions. We recruited an international stakeholder group (n = 32), including National Health Service management, healthcare professionals involved in the delivery of palliative care and heart failure, policy and community groups, plus members of the public and patients, to advise and give us feedback throughout the project, along with Health Education England to disseminate findings. Results In total, 1768 documents were identified, of which 1076 met the inclusion criteria. This was narrowed down to 130 included documents based on the programme theory and discussions with stakeholders. Our realist analysis developed and refined 6 overarching context–mechanism–outcome configurations and 30 sub context–mechanism–outcome configurations. The realist synthesis of the literature and stakeholder feedback helped uncover key intervention strategies most likely to support integration of palliative care into heart failure management. These included protected time for evidence-based palliative care education and choice of educational setting (e.g. online, face to face or hybrid), and the importance of increased awareness of the benefits of palliative care as key intervention strategies, the emotive and intellectual need for integrating palliative care and heart failure via credible champions, seeing direct patient benefit, and prioritising palliative care and heart failure guidelines in practice. The implications of our findings are further outlined in the capability, opportunity, motivation, behaviour model. Limitations The realist approach to analysis means that findings are based on our interpretation of the data. Future work Future work should use the implications to initiate and optimise palliative care in heart failure management. Conclusion Ongoing refinement of the programme theory at each stakeholder meeting allowed us to co-produce implications. These implications outline the required steps to ensure the core components and determinants of behaviour are in place so that all key players have the capacity, opportunity and motivation to integrate palliative care into heart failure management. Study registration This study is registered as PROSPERO CRD42021240185. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR131800) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 34. See the NIHR Funding and Awards website for further award information. Plain language summary People with heart failure can frequently become unwell with poor quality of life despite advanced medical therapies. Palliative care can do much to alleviate suffering for people with heart failure as it focuses on adding to patient care by treating the whole person – their physical, psychosocial and spiritual needs, which improves quality of life for both the patient and their loved ones. However, poor integration of palliative care into the management of heart failure is an ongoing problem. To understand why this is, we have undertaken a particular method of literature review called realist synthesis that looks at all types of literature to identify what works, for whom and in what circumstances. We have worked closely with our stakeholder group (including healthcare providers and patients who have heart failure and their carers) to advise and give us feedback throughout this review. We found the following: A review of education for health and social care professionals is needed to make sure that palliative care for patients with non-cancer conditions such as heart failure is adequately covered. Education is also needed for patients and those who care for them to help them understand what palliative care is (holistic care delivered alongside active heart failure management based on patient need) and what it is not (only for cancer patients and end-of-life care). All health and social care staff should work closely together when managing patients with heart failure to learn from each other. Policy, practice and service user champions must be identified and supported to share the benefits of integrated care. Visible guidelines should prioritise integrated palliative care and heart failure so they become part of everyday practice. Scientific summary Background Cardiovascular disease is the most common cause of death worldwide and the most frequent cause of hospitalisation among individuals aged > 65 years. In 2012, heart failure (HF) was estimated to account for £22.5B of health expenditure globally; between 2012 and 2030 it is estimated that total costs will increase by 127%. Integrating palliative care (PC) with routine management of HF has been shown to significantly reduce healthcare costs overall compared to usual care (without PC) and significantly reduces the number of hospital visits and duration of inpatient stays. There is evidence of improved patient and informal caregiver outcomes when PC is integrated in HF management. Integrated palliative and HF care aims to achieve continuity of care by integrating administrative, organisational, and clinical services that make up the patients care network. However, two decades have passed since the first publication on the benefits of PC for patients with HF. The scarcity of effective integration of PC into HF management can be explained by a number of factors, including uncertainty around the HF disease trajectory and complexities of communicating this uncertainty to the patient and family members. The 2021 European Society of Cardiology (ESC) Guidelines for the diagnosis and treatment of acute and chronic HF highlighted the need for studies to determine specific options for PC within the treatment of HF. Although we have some promising examples of integrated PC and HF interventions, there is heterogeneity in terms of countries, healthcare settings, delivery and intervention components. Hence, this review is vital for identifying what works best, for whom and in what circumstances. Aim and objectives To understand how integrated PC and HF interventions work in different healthcare settings for example inpatient/outpatient, and for which groups of people, so we can recommend strategies to maximise the potential for widespread implementation, reduce healthcare costs, and improve quality of life (QoL) for patients and informal carers. To conduct a realist synthesis (RS) to build an understanding of which integrated PC and HF interventions work best together, in which contexts and for which patients who have HF and informal carers. To co-produce implications with an expert stakeholder group, to maximise potential for widespread implementation through a user guide for healthcare providers and user-friendly summaries for patients and the public. Review questions What are the mechanisms by which integrated PC and HF interventions work to produce their intended outcomes? What are the contexts which determine whether integrated PC and HF interventions produce their intended or unintended outcomes? In what settings are integrated PC and HF interventions likely to be effective? Methods To understand and make sense of the complexity of integrating PC in HF management, we used a RS approach to examine what works for whom, in what circumstances, how and why. RS is a theory-driven approach for understanding existing diverse sources of evidence relating to complex interventions. It is theory driven because it uses evidence to iteratively develop and test structurally coherent explanations (i.e. theories) of complex interventions. The methodology followed Pawson’s five iterative stages for RS: (1) locating existing theories; (2) searching for evidence; (3) selecting documents; (4) extracting and organising data; and (5) synthesising the evidence and drawing conclusions. The review ran for 22 months, from September 2021 to June 2023. Data sources Searches of bibliographic databases were conducted in November 2021 using the following databases: EMBASE, MEDLINE, PsycInfo, AMED (via Ovid), HMIC (via Ovid) and CINAHL (via EBSCOhost). Further relevant documents were identified via alerts and through our stakeholder group. Study selection The initial inclusion and exclusion criteria for the review were deliberately broad as we aimed to identify all relevant quantitative, qualitative, mixed-methods and non-empirical documents relating to HF and PC. We applied the following inclusion criteria: Document types – All documents focused on PC for patients who have HF Study design – All study designs. Non-empirical data (e.g. from opinion/commentary pieces) which help direct/shape theory development Types of settings – All documents about inpatient or outpatient or home-based care settings Types of participants – All adult patients (18 years and over) Types of intervention – Any combination of PC strategies for the management of patients with HF Outcome measures – All integrated PC- and HF-related outcome measures Following the presentation of the preliminary initial programme theory to our stakeholder group, stakeholders focused on healthcare professionals’ perspectives for implementation of integrated PC in HF management. This iterative process of identifying the most pertinent explanatory theory allowed us to narrow the scope of the synthesis to focus on healthcare professionals’ perspectives on integrated PC into HF management. Data extraction Initial coding of the documents used both inductive (codes emerging through data analysis) and deductive methods (codes determined prior to analysis through initial programme theory and stakeholder discussions). The coding framework resulted from the analysis of the richest documents, which were documents with the most potential to inform the programme theory; within this review, these were mostly qualitative research papers. Examples of initial codes identified were ‘biomedical culture within cardiology’ and ‘terminology – understanding what PC is and is not’. We concurrently worked to identify ‘guiding principles’ and features underpinning the interventions, and relevant implications discussed mostly in policy documents, reviews and commentaries. The framework generated was applied to the remainder of the documents and refined as the analysis progressed. For example, we identified relevant contexts when mechanisms were likely to be ‘triggered’, such as a shared understanding (across patient, informal caregiver and healthcare professionals) that PC in HF management positively contributes to optimised QoL. Such contexts and mechanism became ‘codes’. Analysis and synthesis The analysis was driven by a realist logic. We sought to interpret and explain mechanisms, such as shared vision and provision of joint PC and HF education, in which integrated PC in HF management would occur (or not). We used the coding of the included documents within NVivo (QSR International, Warrington, UK) to draw relationships between contexts, mechanisms and outcomes, and to further develop our initial programme theory. In summarising, the evidence synthesis process was achieved using the below analytic processes: Juxtaposition of data sources: data reported in different documents were compared and contrasted. Reconciling ‘contradictory’ or disconfirming data: when outcomes differed in seemingly comparable circumstances, further investigation was undertaken to find explanations for why different outcomes happened. This involved looking closer at what made up the context for different kinds of ‘problems’, to understand how mechanisms triggered could explain different outcomes. Consolidation of sources of evidence: when findings from different documents had similarities, a judgement was made as to whether these similarities could adequately form patterns to inform the development of context–mechanism–outcome configurations (CMOcs) and programme theory, or whether there were nuances that required highlighting, and for what purpose. The aim of the analysis was to reach theoretical saturation, that sufficient information had been captured to portray and explain the processes leading to the implementation of integrated PC in HF management and the mechanisms that can aid this implementation. Consistency checks Consistency checks were carried out by a second reviewer Tracey McConnell (TM) on a 10% random sample of the screening (title, abstract and full text) and the coding process for the main search. Minimal inconsistencies were identified and, when identified, were resolved through discussion. Stakeholder group Our patient and public involvement (PPI) group members were involved throughout the planning and execution of this project. They sat on our stakeholder group made up of 32 stakeholder participants including specialist HF nurses, cardiology and PC consultants, people who had HF, an informal caregiver, and researchers. During the review, we asked PPI stakeholder group members: to help us develop our initial programme theory; for their advice and feedback on our programme theory as it evolved; to consider our findings and implications from their varied perspectives; to provide input and support into our dissemination strategy; and to review and contribute to our materials, to ensure they met the needs of patients and the wider public. Results (research findings) A total of 1768 documents were identified, of which 1076 met the inclusion criteria for further screening. Based on programme theory and discussions with stakeholders, it was decided to refine the inclusion criteria further to align with the focus of the review leading to 130 documents being included. Our realist analysis developed and refined 6 overarching context–mechanism–outcome configurations with 30 sub CMOcs. We used the capability, opportunity, motivation, behaviour (COM-B) model to help identify intervention strategies needed to produce desired behaviours and avoid undesired behaviours. Although the COM-B model relates to individual behaviour change, it also considers team and organisational behaviour. For example, an individual’s capacity to carry out a specific behaviour also depends on the organisational culture they work within, and the opportunities afforded to them within their team and organisation. Capacity According to the ‘capacity’ component of the COM-B model, individuals must believe they have the required knowledge and skills to carry out a behaviour. Unsurprisingly, education was a key intervention strategy for providing key individuals with the required knowledge and skills to overcome many of the key blockages identified in the literature, from a biomedical culture (CMOc 1–1.1), to misunderstandings around terminology which equate PC with end-of-life care only (CMOc 1.2–1.5), complexities of the HF illness trajectory (CMOc 1.6–1.7), to the challenges of integrating PC in the context of patients with HF who have life-prolonging devices (CMOc 1.8–1.8b). The realist analysis and synthesis of the literature helped uncover what ‘types’ of educational strategies are required to achieve integration of PC into HF management. These included shared education and experiential learning within and between disciplines across all care settings (CMOc 2.1), communication skills training (CMOc 2.8), public health approach/messaging (CMOc 2.9), evidence-based examples of good practice (CMOc 3) and guidelines embedded in undergraduate (UG) and postgraduate education (CMOc 6). Opportunity The opportunity component of the COM-B model proposes that individuals must have the required physical (time and resources) opportunities for behaviour change to occur. Therefore, providing evidence-based educational strategies is not enough to create behaviour change without due attention to the required opportunities. The literature and stakeholders stressed the importance of protected time for education and choice of educational setting (e.g. online, face to face or hybrid) (CMOc 2.7). The importance of having guidelines was highlighted by the review findings. This also showed that despite the availability of guidelines there is still a lack of clarity within HF management around who is responsible for initiating PC conversations, when this should happen, and how often. Therefore, guidelines for integrating PC and HF should be visible, easily accessible and their use prioritised, with clarity on expectations and roles, so patients receive the right care, from the right people, at the right time (CMOc 6). Motivation According to the COM-B model, motivation is a core component necessary for behaviour change, meaning that the behaviour must be more desirable and important than other competing priorities. CMOc 3 identified the importance of increased awareness and seeing benefits of PC in HF management (CMOc 3) as key intervention strategies. Stakeholders noted that evidence may win minds, but we also need to convince hearts, and so emphasised the importance of winning both hearts and minds. The synthesis of the international evidence also supported the importance of conveying the emotive and intellectual need for integrating PC and HF via credible champions, seeing direct patient benefit, and evidence-based education (CMOc 3.1). Conclusions and implications Ongoing refinement of the programme theory at each stakeholder meeting allowed us to co-produce implications. These implications outline the required steps to ensure the core components and determinants of behaviour are in place so that all key players have the capacity, opportunity and motivation to integrate PC into HF management. Integrated PC and HF services must be prioritised by senior decision-makers in the health and care system. Services must be adequately funded to ensure that staff are able to develop and run fully integrated PC and HF services. Service design should start with an assessment of the availability of PC and HF services in their locality (e.g. ‘postcode lottery’ issues) and find solutions. Services integrating PC into HF management must be provided which are reflective of the diversity of the whole population within the local healthcare context. Develop service delivery models that provide continuity of care for patients with HF including: reconfigured services to promote a multidisciplinary team (MDT) working between specialties and settings (including primary care) processes to monitor and address gaps in provision and caseloads processes to show the benefits (e.g. reduction in the need for inpatient care and cost-savings) of integrated PC and HF resources for all settings (e.g. primary and secondary care) and all audiences involved (e.g. patients, carers and clinicians) with clear and consistent messages about PC and HF. For example, develop a patient information leaflet, co-designed by PPI and engagement, to highlight what integrated PC in HF management is and when this might be suitable Develop guidelines for MDT meetings to identify who, when and how each of the below key decisions and action will be completed for each patient with HF: who is responsible for introducing PC to the patient and informal caregiver(s)? who will assess PC needs and how often (e.g. at every healthcare professional contact)? agreeing care plan (needs to be individualised to each patient) executing care plan reassessing care plan ensuring needs and care plans are communicated across settings and specialties ongoing evaluation including patient reported outcome measures, to enable refinement and benchmarking of guidelines/care pathway. Evaluate current PC education in UG and post-registration medical, nursing, allied health and social care (HSC) professional curriculum to identify deficits in the PC curriculum around caring for those with HF. Effective communications skills training is required across all levels of the curriculum in nursing, medicine and allied HSC professional education to ensure all have the means to communicate the value of PC and HF and provide ongoing care. Facilitate joint decision-making: Set up and run MDT meetings for those involved in PC and HF that enable members to develop trusting relationships, work collaboratively and learn from each other. Create active engagement by demonstrating the value of integrated PC in HF, for example, through the sharing of examples of good practice, for example through visits and placements. Develop effective patient PC education for individuals diagnosed with HF. Equip and enable all people involved with PC and HF (e.g. patients, consultants, nurses, informal carers) to champion the value and need for integrated PC and HF. Address public (mis)understanding of PC and HF through public health campaigns focused on raising awareness of PC as a holistic, wrap around care plan for improving QoL for those with HF. Study registration This study is registered as PROSPERO CRD42021240185. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR131800) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 34. See the NIHR Funding and Awards website for further award information.

Background: Chronic kidney disease is common, affecting up to 13 % of the global population, and is predicted to become the fifth leading cause of 'life years lost' by 2040. Individuals with end-stage kidney disease commonly develop complications such as protein-energy wasting and cachexia which further worsens their prognosis. The syndrome of ‘renal cachexia’ is poorly understood, under-diagnosed and even if recognised has limited treatment options. Objective: To explore the lived experience of renal cachexia for individuals with end-stage kidney disease and the interrelated experiences of their carers. Design: This interpretive phenomenological study was designed to facilitate an in-depth exploration of how patients and carers experience of renal cachexia. To improve and document the quality, transparency, and consistency of patient and public involvement in this study the Guidance for Reporting Involvement of Patients and the Public-Short Format was followed. Setting: The study was conducted across two nephrology directorates, within two healthcare trusts in the United Kingdom. Participants: Seven participants who met the inclusion criteria were recruited for this study, four patients (three female, one male) and three carers (two male, one female). Methods: We employed a purposive sampling strategy. Data collection was conducted between July 2022 and December 2023. Interviews were semi-structured, audio-recorded, transcribed verbatim and analysed in six steps by two researchers using interpretive phenomenological analysis. Ethical approval was approved by the Office for Research Ethics Committees Northern Ireland (Reference: 22/NI/0107). Results: Analysis generated six group experiential themes: the lived experience of appetite loss, functional decline and temporal coping, weight loss a visual metaphor of concern, social withdrawal and vulnerability, the emotional toll of eating challenges and psychological strain amidst a lack of information about cachexia. Conclusion: This is the first qualitative study exploring the lived experience of renal cachexia for patients and carers. Our study highlights that psycho-social and educational support is urgently needed. Additionally, healthcare professionals need better information provision to help them to recognise and respond to the needs of this population. Further research is required to develop models of holistic support which could help patients and carers cope with the impact of renal cachexia and optimally manage this syndrome within the family unit. Registration: N/A.

Abstract Background Individuals with chronic kidney disease experience difficult physical and psychological symptoms, that impact quality of life, and are at increased risk of anxiety and depression. Access to specialist psychological support is limited. This study aimed to support a new service development project, in collaboration with Kidney Care UK, to implement the Compassionate Mindful Resilience (CMR) programme, developed by MindfulnessUK, which provides accessible mindfulness techniques and practices to enhance compassion and resilience, and explore its feasibility for people living with stage 4 or 5 kidney disease and transplant. Methods A multi-method feasibility design was utilised. Participants over 18 years, from the UK, with stage 4 or 5 kidney disease or post-transplant, and who were not currently undergoing psychotherapy, were recruited to the four-week CMR programme. Data was collected at baseline, post-intervention and three-months post to measure anxiety, depression, self-compassion, mental wellbeing, resilience, and mindfulness. The acceptability of the intervention for a kidney disease population was explored through qualitative interviews with participants, and the Mindfulness Teacher. Results In total, 75 participants were recruited to the study, with 65 completing the CMR programme. The majority were female (66.2%) and post-transplant (63.1%). Analysis of completed outcome measures at baseline and post-intervention timepoints (n = 61), and three-months post intervention (n = 45) revealed significant improvements in participant’s levels of anxiety (p

Abstract Cancer cachexia (CC) is a multifactorial syndrome driven by inflammation, defined by ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutritional support. CC leads to progressive functional impairment, with its clinical management complicated and limited therapeutic options available. The objective of this review was to assess the efficacy and safety of non‐steroidal anti‐inflammatory drugs (NSAIDs) on patient‐centred outcomes in patients with CC. In 2013, two systematic reviews concluded that there was insufficient evidence to recommend NSAIDs for clinical management of CC outside of clinical trials. However, clinical trials of multi‐component CC interventions have included NSAIDs as an intervention component, so an up‐to‐date assessment of the evidence for NSAIDs in the treatment of CC is warranted. Four databases (MEDLINE, EMBASE, CENTRAL and CINAHL) and three trial registers (clinicaltrials.gov, WHO ICTRP and ISRCTN) were searched on 16 December 2022. Randomized controlled trials (RCTs) comparing any NSAID (any dose or duration) with a control arm, in adult patients with CC, reporting measures of body weight, body composition, nutrition impact symptoms, inflammation, physical function or fatigue, were eligible for inclusion. Primary outcomes (determined with patient involvement) were survival, changes in muscle strength, body composition, body weight and quality of life. Included studies were assessed for risk of bias using the Revised Cochrane risk‐of‐bias tool for randomized trials. Five studies were included, which investigated Indomethacin (n = 1), Ibuprofen (n = 1) and Celecoxib (n = 3). Four studies were judged to be at high risk of bias for all outcomes, with one study raising concerns for most outcomes. Considerable clinical and methodological heterogeneity amongst the studies meant that meta‐analysis was not appropriate. There was insufficient evidence to determine whether Indomethacin or Ibuprofen is effective or safe for use in patients with CC; RCTs with lower risk of bias are needed. Celecoxib studies indicated it was safe for use in this population at the doses tested (200–400 mg/day) but found contrasting results regarding efficacy, potentially reflecting heterogeneity amongst the studies. There is inadequate evidence to recommend any NSAID for CC. While current clinical trials for CC treatments are shifting towards multi‐component interventions, further research to determine the efficacy and safety of NSAIDs alone is necessary if they are to be included in such multi‐component interventions. Furthermore, the lack of data on patient‐determined primary outcomes in this review highlights the need for patient involvement in clinical trials for CC.

Introduction Emerging evidence suggests improved quality of life, reduced symptom burden and lower health services costs when integrated palliative care and cancer care are implemented. Integrated palliative care aims to achieve care continuity by integrating organisational, administrative and clinical services involved in patient care networks. However, integrated palliative care for cancer is not common practice. This project, therefore, aims to understand how integrated palliative care and cancer care works in different healthcare settings (inpatient/outpatient), and for which groups of people (at what stage of the cancer journey), so we can develop guidance for optimal delivery.Methods and analysis We will conduct a realist synthesis to develop a programme theory of how integrated palliative care in cancer works, for whom and in what contexts to achieve improved symptom management and quality of life for patients and their families.This realist synthesis will follow the five stages outlined by Pawson: (1) locating existing theories, (2) searching for evidence, (3) article selection, (4) extracting and organising data and (5) synthesising the evidence and drawing conclusions. We will work closely with our expert stakeholder group, which includes health and social care professionals providing palliative care and oncology; management and policy groups and members of the public and patients. We will adhere to RAMESES quality standards for undertaking a realist synthesis.Ethics and dissemination Ethics approval for this project is not required.The realist synthesis will develop a programme theory that provides clarity on the optimal delivery of palliative care for adults with cancer. We will use the programme theory to coproduce guidance and user-friendly outputs, working with stakeholders to inform delivery of best practice. Findings will inform further research in integrated palliative care and cancer. Stakeholder engagement will assist in the dissemination of our findings.PROSPERO registration number CRD42023389791.

BackgroundPatients with end stage kidney disease (ESKD) receiving haemodialysis experience multiple symptoms, which can present physical and emotional challenges for both patients and their informal caregivers. Caregivers can experience anxiety, depression, and social isolation negatively impacting their overall wellbeing and resulting in caregiver burden. The needs of this group of caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role.AimThe aim of this study Is to explore the unmet needs and experiences of caregivers of patients with ESKD receiving haemodialysis, and to determine the components of a supportive intervention.DesignA qualitative study using semi-structured interviews (n = 24) with informal caregivers. An interpretive qualitative framework was employed to generate a rich understanding of the unmet needs and experiences of caregivers. Data was analysed using thematic analysis. Interviews were transcribed verbatim and data management was assisted through NVIVO version 11.Setting/participantsTwenty-four informal caregivers were purposively recruited from two haemodialysis settings within Northern Ireland.ResultsThree themes were identified: (1) The negative impact of distress, anxiety, and isolation on caregivers due to their caregiving responsibilities (2) Inadequate information and knowledge about the complexities of renal care (3) The benefits of spiritual beliefs, stress management and peer support in relieving the caregiving burden.ConclusionsCaregivers of patients with ESKD receiving haemodialysis are at increased risk of physical and psychological distress and burden arising from their caregiving role. The unpredictable nature of ESKD and haemodialysis treatment negatively impacts the caregiver experience and adds to the challenges of the role. The information needs of caregivers are not always adequately met and they subsequently lack appropriate knowledge, skills, and guidance to assist them in their caregiving role. Supportive interventions are essential for caregivers to enhance their capability to deliver effective care and improve their quality of life.

Objectives (1) Develop a programme theory of why, for whom and in what contexts integrated palliative care (PC) and heart failure (HF) services work/do not work; (2) use the programme theory to co-produce with stakeholders, intervention strategies to inform best practice and future research.Methods A systematic review of all published articles and grey literature using a realist logic of analysis. The search strategy combined terms significant to the review questions: HF, PC and end of life. Documents were included if they were in English and provided data relevant to integration of PC and HF services. Searches were conducted in November 2021 in EMBASE, MEDLINE, PsycINFO, AMED, HMIC and CINAHL. Further relevant documents were identified via monthly alerts (up until April 2023) and the project stakeholder group (patient/carers, content experts and multidisciplinary practitioners).Results 130 documents were included (86 research, 22 literature reviews, 22 grey literature). The programme theory identified intervention strategies most likely to support integration of PC and HF services. These included protected time for evidence-based PC and HF education from undergraduate/postgraduate level and continuing professional practice; choice of educational setting (eg, online, face-to-face or hybrid); increased awareness and seeing benefits of PC for HF management; conveying the emotive and intellectual need for integrating PC and HF via credible champions; and prioritising PC and HF guidelines in practice.Conclusions The review findings outline the required steps to take to increase the likelihood that all key players have the capacity, opportunity and motivation to integrate PC into HF management.PROSPERO registration number CRD42021240185.

In Colombia, timely access to palliative care (PC) is hampered by difficulties in identifying and referring to necessary services. The SPARC (Sheffield Profile for Assessment and Referral for Care) instrument provides a holistic needs assessment to improve referrals for different forms of care. SPARC was recently validated in Colombian Spanish (SPARC-Sp) but has not yet been implemented in clinical practice. We undertook workshops that aimed to co-design an implementation strategy to inform a future trial testing SPARC-Sp in the Colombian healthcare system. Workshop attendees included patients, informal caregivers, healthcare professionals, volunteers, administrative staff and decision makers. Discussions within the workshops refined implementation and dissemination strategies for SPARC-Sp in practical scenarios. Results include the need for education, clarification and demystification of PC and the lack of time and skills of professionals to identify patients’ needs. Attendees recognized SPARC-Sp as a valuable tool for highlighting patients’ concerns, whose adaptations are needed in Colombia to address the low literacy of the population and specificities of the healthcare system. We proposed local adaptations to SPARC-Sp and produced five educational videos aimed at health professionals, patients and caregivers to strengthen understanding of holistic needs in PC while building a strategy for SPARC-Sp implementation in the Colombian context.

Background: Kidney disease is a progressive, debilitating condition. Patients experience challenging physical and psychological symptoms and are at increased risk of anxiety, depression, and poor mental wellbeing. Access to specialist psychological or social support is limited, with inadequate provision of psychosocial support available across UK renal units. The COSMIC study (examining the acceptability and feasibility of the Compassionate Mindful Resilience programme for adult patients with chronic kidney disease) aimed to support a new service development project, in partnership with Kidney Care UK, by implementing the Compassionate Mindful Resilience (CMR) programme, developed by MindfulnessUK, and explore its feasibility for patients with stage 4 or 5 kidney disease and kidney transplant recipients. This paper reports on the qualitative exploratory work which examined the experiences of study participants, their adherence to practice, and the acceptability of the intervention. Method: Participants (n = 19) took part in semi-structured interviews, which were transcribed, coded, and thematically analysed. Results: Three themes (and nine subthemes) were reported: experiences of the CMR programme that facilitated subjective benefit, participants’ lived and shared experiences, and the practicalities of CMR programme participation. All participants reported that they found taking part in the CMR programme to be a beneficial experience. Conclusion: The CMR programme was found to be an acceptable intervention for people living with kidney disease and provided tools and techniques that support the mental health and wellbeing of this patient group. Further qualitative exploration into participant experience should be integrated within future trials of this intervention.

Abstract Background Mindfulness can potentially positively impact well-being and resilience in undergraduate nursing students. The psychological well-being of such students undertaking clinical training is paramount to ensure optimal learning, and to equip them with skills to manage their wellbeing in future clinical practice. The aim of our study was to explore the views of undergraduate nursing students in relation to understanding and engaging with mindfulness, and how mindfulness could best be delivered within their university programme. Methods An online survey was administered via a cloud-based student response system to a convenience sample of first year undergraduate nursing students completing a Bachelor of Science (BSc) Honours (Hons) degree in nursing at a University in the United Kingdom. Data were analysed using descriptive statistics and thematic analysis. Results The survey achieved a response rate of 78% (n = 208). Seventy-nine percent of participants had heard of mindfulness and were interested in taking part in a mindfulness programme. Respondents reported that the ideal delivery of the programme would consist of weekly 45-min, in person group sessions, over a 6-week period. Respondents also indicated that a mobile application could potentially facilitate participation in the programme. Thematic analysis of open-ended comments, and free text, within the survey indicated 4 overarching themes: 1) Perceptions of what mindfulness is; 2) Previous mindfulness practice experiences; 3) Impact of mindfulness in nursing; 4) The need for a future well-being initiative for undergraduate nursing students. Conclusions Undergraduate nursing students perceived that a mindfulness programme has the potential to enhance well-being and future clinical practice. This student cohort are familiar with mindfulness and want more integrated within their undergraduate curriculum. Further research is required to examine the effectiveness of a tailored mindfulness intervention for this population that incorporates the use of both face-to-face and mobile delivery.

Abstract Sarcopenia is an age‐related progressive muscle disease characterized by loss of muscle mass, muscle strength and physical performance with high prevalence in chronic kidney disease (CKD). CKD is associated with decreased muscle protein synthesis and muscle breakdown due to a number of factors including, the uremic inflammatory environment of the disease. CKD patients are highly sedentary and at risk of malnutrition which may exacerbate sarcopenia outcomes even further. Short and long‐term exercise and nutritional interventions have been studied and found to have some positive effects on sarcopenia measures in CKD. This narrative review summarized evidence between 2010 and 2020 of resistance exercise (RE) alone or combined with nutritional interventions for improving sarcopenia outcomes in CKD. Due to lack of CKD‐specific sarcopenia measures, the second European Working Group on Sarcopenia in Older People (EWGSOP2) definition has been used to guide the selection of the studies. The literature search identified 14 resistance exercise‐based studies and 5 nutrition plus RE interventional studies. Muscle strength outcomes were increased with longer intervention duration, intervention supervision, and high participant adherence. Data also suggested that CKD patients may require increased RE intensity and progressive loading to obtain detectable results in muscle mass. Unlike muscle strength and muscle mass, physical performance was readily improved by all types of exercise in long or short‐term interventions. Four studies used RE with high‐protein nutritional supplementation. These showed significant benefits on muscle strength and physical performance in dialysis patients while non‐significant results were found in muscle mass. More research is needed to confirm if a combination of RE and vitamin D supplementation could act synergistically to improve muscle strength in CKD. The current evidence on progressive RE for sarcopenia in CKD is encouraging; however, real‐life applications in clinical settings are still very limited. A multidisciplinary patient‐centred approach with regular follow‐up may be most beneficial due to the complexity of sarcopenia in CKD. Long‐term randomized control trials are needed to verify optimal RE prescription and explore safety and efficacy of other nutritional interventions in CKD.

Abstract Background Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers’ quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads’ emotional functioning and self-efficacy. Methods We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. Discussion DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. Trial registration Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . Date and version identifier 20211209_DIAdIC_Protocol_Article.

Abstract Objectives To describe communication regarding cancer patient’s end-of-life (EoL) wishes by physicians and family caregivers. Methods An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. Results For 138 deceased patients we obtained responses from physicians and family caregivers. In 32 % physicians reported they spoke to the caregiver and in 17 % with the patient regarding EoL decisions. In most cases lacking a conversation, physicians indicated the treatment option was “clearly the best for the patient” or that it was “not necessary to discuss treatment with the patient”. Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and family caregivers were aware if the patient had any advance care directive in 6% and 26% of cases, respectively, with low absolute agreement (34%). Conclusions There is a lack of open conversation regarding EoL in patients with advanced cancer with their physicians and family caregivers in Colombia. Communication strategies are urgently needed.

Abstract Background Globally, renal healthcare practitioners provide intensive and protracted support to a highly complex multi-morbid patient population however knowledge about the impact of COVID-19 on these practitioners is extremely limited. Objective This study aimed to explore the experiences of COVID-19 with renal healthcare practitioners during the first global lockdown between June 2020 and September 2020. Methods A multi-methods approach was carried out including a quantitative survey and qualitative interviews. This was a multinational study of renal healthcare practitioners from 29 countries. Quantitative: A self-designed survey on COVID-19 experiences and standardised questionnaires (General Health Questionnaire-12; Maslach Burnout Inventory). Descriptive statistics were generated for numerical data. Qualitative: Online semi-structured interviews were conducted. Data was subjected to thematic analysis. Renal healthcare practitioners (n = 251) completed an online survey. Thirteen renal healthcare practitioners took part in semi-structured interviews (12 nurses and 1 dietician). Results The majority of participants surveyed were female (86.9 %; n = 218), nurses (86.9 %; n = 218) with an average 21.5 (SD = 11.1) years’ experience since professional qualification, and 16.3 years (SD = 9.3) working in renal healthcare. Survey responses indicated a level of preparedness, training and satisfactory personal protective equipment during the pandemic however approximately 40.3 % experienced fear about attending work, and 49.8 % experienced mental health distress. The highest prevalence of burnout was emotional exhaustion (35.9 %). Three themes emerged from the qualitative analysis highlighting the holistic complexities in managing renal healthcare, a neglected specialist workforce, and the need for appropriate support at work during a pandemic. Conclusions Results have highlighted the psychological impact, in terms of emotional exhaustion and mental health distress in our sample of renal healthcare practitioners. As the pandemic has continued, it is important to consider the long-term impact on an already stretched workforce including the risk of developing mental health disorders. Future research and interventions are required to understand and improve the provision of psychological support for specialist medical and nursing personnel.

Abstract Background Patients with end-stage kidney disease who receive haemodialysis experience a protracted treatment regimen that can result in an increased risk of depression and anxiety. Arts-based interventions could address this unique issue; however, no arts-based interventions have been developed for delivery within a haemodialysis unit and evaluation within a randomised controlled trials (RCTs). Aim To develop a complex arts-based intervention for patients with end-stage kidney disease whilst receiving haemodialysis. Methods The development process utilised the Arts in Health framework (Fancourt, 2017). The framework was addressed through the establishment of an interdisciplinary advisory group, collaboration and consultation with stakeholders, a scoping and realist review, shadowing of artists-in-residence, personal arts practice and logic modelling. Results The intervention involved six 1-h long, one-to-one facilitated sessions focused on creative writing and visual art. Patients could choose between art form and self-select a subject matter. The sessions had a primary focus on skill development and were delivered using principles derived from the psychological theory of flow. Conclusion The Arts in Health framework provided an appropriate and pragmatic approach to intervention development. Complex arts-based interventions can be developed for the purpose of evaluation within a trial framework. This intervention was designed to strike a balance between standardised components, and a person-centred approach necessary to address existential boredom.

Abstract Background Haemodialysis can negatively impact quality of life and mental health. Arts-based interventions used successfully in other settings to improve health and well-being, could help address the impact of haemodialysis. This study aimed to evaluate the feasibility and acceptability of conducting a randomised controlled trial (RCT) of an arts-based intervention for patients receiving haemodialysis. Methods A parallel convergent mixed-methods design was used, including a pilot cluster RCT and qualitative process evaluation. Phase 1 evaluated recruitment and retention rates through a pilot cluster RCT at a single haemodialysis unit in Northern Ireland. Participants included patients who received haemodialysis for ESKD, were over the age of 18 and had the capacity to consent. These participants were randomised to the intervention or control group according to their haemodialysis shift. The intervention involved six one-hour, one-to-one facilitated arts sessions during haemodialysis. Phase 2 explored intervention and trial acceptability through a qualitative process evaluation using semi-structured interviews based on the RE-AIM framework. Participants included 13 patients who participated in phase 1 of the study, including 9 participants from the experimental group and four participants from the control group, and nine healthcare professionals who were present on the unit during implementation. Results Out of 122 outpatient haemodialysis patients, 94 were assessed as eligible for participation. Twenty-four participants were randomised, meaning 80% of the target sample size was recruited and the attrition rate at 3 months was 12.5% (n = 3). Participants viewed the arts as more accessible and enjoyable than anticipated following implementation. All participants who started the intervention (n = 11) completed the full six sessions. Qualitative benefits of the intervention suggest improvements in mental well-being. Patient choice and facilitation were important factors for successful implementation. Conclusion An arts-based intervention for patients receiving haemodialysis is acceptable for both patients and healthcare professionals, and a definitive trial is feasible. The intervention may help improve mental-wellbeing in patients receiving haemodialysis, but this requires further investigation in a definitive trial. Trial registration The trial was prospectively registered on clinicaltrials.gov on 14/8/2018, registration number NCT03629496 .

Abstract Background Patients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role. Methods This qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention. Discussion The needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers’ preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.

Renal cachexia is an important consideration in the person-centred care that is needed in end-stage renal disease (ESRD). However, given that clinical guidelines relating to renal cachexia are largely absent, this is an unmet care need. To inform guidelines and future renal service planning, there is an urgency to understand individuals' experiences of renal cachexia and the interrelated experiences of the carers in their lives. We report here the protocol for an interpretative phenomenological study which will explore this lived experience. A purposive sampling strategy will recruit individuals living with ESRD who have cachexia and their carers. A maximum of 30 participants (15 per group) dependent on saturation will be recruited across two nephrology directorates, within two healthcare trusts in the United Kingdom. Individuals with renal cachexia undergoing haemodialysis will be recruited via clinical gatekeepers and their carers will subsequently be invited to participate in the study. Participants will be offered the opportunity to have a face-to-face, virtual or telephone interview. Interviews will be audio-recorded, transcribed verbatim and analysed using interpretative phenomenological analysis. NVivo, will be used for data management. Ethical approval for this study was granted by the Office for Research Ethics Committees Northern Ireland (REC Reference: 22/NI/0107). Scientific evidence tends to focus on measurable psychological, social and quality of life outcomes but there is limited research providing in-depth meaning and understanding of the views of individuals with renal disease who are experiencing renal cachexia. This information is urgently needed to better prepare healthcare providers and in turn support individuals with ESRD and their carers. This study will help healthcare providers understand what challenges individuals with ESRD, and their carers face in relation to cachexia and aims to inform future clinical practice guidelines and develop supportive interventions which recognise and respond to the needs of this population.

In this study, we aimed to develop a theoretical framework for a multimodal, integrative, exercise, anti-inflammatory and dietary counselling (MMIEAD) intervention for patients with renal cachexia with reference to how this addresses the underlying causal pathways for renal cachexia, the outcomes anticipated, and how these will be evaluated. We used a Theory of Change (ToC) approach to guide six steps. Step 1 included inputs from a workshop to obtain key stakeholder views on the potential development of a multimodal intervention for renal cachexia. Step 2 included the findings of a mixed-methods study with Health Care Practitioners (HCPs) caring for individuals with End Stage Kidney Disease (ESKD) and cachexia. Step 3 included the results from our systematic literature review on multimodal interventions for cachexia management. In step 4, we used the body of our research team’s cachexia research and wider relevant research to gather evidence on the specific components of the multimodal intervention with reference to how this addresses the underlying causal pathways for renal cachexia. In steps 5 and 6 we developed and refined the ToC map in consultation with the core research team and key stakeholders which illustrates how the intervention components of MMIEAD interact to achieve the intended long-term outcomes and anticipated impact. The results of this study provide a theoretical framework for the forthcoming MMIEAD intervention for those with renal cachexia and in subsequent phases will be used to determine whether this intervention is effective. To the best of our knowledge no other multimodal intervention trials for cachexia management have reported a ToC. Therefore, this research may provide a useful framework and contribute to the ongoing development of interventions for cachexia management.

Abstract Background Cachexia is a complex and multifactorial syndrome defined as severe weight loss and muscle wasting which frequently goes unrecognised in clinical practice [1]. It is a debilitating syndrome, resulting in patients experiencing decreased quality of life and an increased risk of premature death; with cancer cachexia alone resulting in 2 million deaths per annum [2]. Most work in this field has focused on cancer cachexia, with cardiac cachexia being relatively understudied – despite its potential prevalence and impact in patients who have advanced heart failure. We report here the protocol for an exploratory study which will: 1. focus on determining the prevalence and clinical implications of cardiac cachexia within advanced heart failure patients; and 2. explore the experience of cachexia from patients’ and caregivers’ perspectives. Methods A mixed methods cross-sectional study. Phase 1: A purposive sample of 362 patients with moderate to severe heart failure from two Trusts within the United Kingdom will be assessed for known characteristics of cachexia (loss of weight, loss of muscle, muscle mass/strength, anorexia, fatigue and selected biomarkers), through basic measurements (i.e. mid-upper arm circumference) and use of three validated questionnaires; focusing on fatigue, quality of life and appetite. Phase 2: Qualitative semi-structured interviews with patients (n = 12) that meet criteria for cachexia, and their caregivers (n = 12), will explore their experience of this syndrome and its impact on daily life. Interviews will be digitally recorded and transcribed verbatim, prior to qualitative thematic and content analysis. Phase 3: Workshops with key stakeholders (patients, caregivers, healthcare professionals and policy makers) will be used to discuss study findings and identify practice implications to be tested in further research. Discussion Data collected as part of this study will allow the prevalence of cardiac cachexia in a group of patients with moderate to severe heart failure to be determined. It will also provide a unique insight into the implications and personal experience of cardiac cachexia for both patients and carers. It is hoped that robust quantitative data and rich qualitative perspectives will promote crucial clinical discussions on implications for practice, including targeted interventions to improve patients’ quality of life where appropriate.

Abstract Background Chronic lung diseases, such as COPD, are a growing health concern within the veteran population. Palliative care programs have mainly focused on the needs of people with malignant disease in the past, however the majority of those worldwide needing palliative care have a non-malignant diagnosis. Additionally, palliative care provision can often be fragmented and varied dependent upon a patient’s geographical location. This study aimed to explore palliative care provision for veterans with non-malignant respiratory disease, and their family carers, living in a rural area of America. Methods Qualitative study involving a convenience sample of 16 healthcare professionals from a large veteran hospital in Boise, Idaho. Data collection consisted of 5 focus groups which were transcribed verbatim and analysed using thematic analysis. Results Healthcare professionals perceived that a lack of education regarding disease progression enhanced feelings of anxiety amongst veterans with NMRD, and their family carers. Additionally, the uncertain disease trajectory impeded referral to palliative and hospice services due to healthcare professionals own ambiguity regarding the veteran’s prognosis. A particular barrier also related to this particular patient population, was a perceived lack of ability to afford relevant services and a lack of local palliative service provision. Healthcare professionals expressed that a compounding factor to palliative care uptake was the perceptions held by the veteran population. Healthcare professionals expressed that alongside aligning palliative care with dying, veterans also viewed accepting palliative care as ‘surrendering’ to their disease. Findings indicated that telemedicine may be a beneficial platform to which palliative care can be provided to veterans with NMRD, and their family carers, in rural areas using a digital platform. Conclusion Non-malignant respiratory disease is a life limiting condition commonly experienced within the veteran population. A new model of palliative care utilising a dynamic digital platform for this particular veteran population may provide an optimal way of providing efficient holistic care to areas with limited palliative services.

Abstract Background End-stage kidney disease is a life-changing illness. Many patients require haemodialysis, a treatment that impacts profoundly on quality of life and mental health. Arts-based interventions have been used in other healthcare settings to improve mental health and quality of life; therefore, they may help address the impact of haemodialysis by improving these outcomes. However, there is a lack of evidence assessing their effectiveness in this population and few randomised controlled trials (RCTs) evaluating the effectiveness of complex arts-based interventions. Methods The aims of this study are to establish the feasibility of a cluster RCT of an arts-based intervention for patients with end-stage kidney disease whilst receiving haemodialysis through a cluster randomised pilot study, explore the acceptability of the intervention with a process evaluation and explore the feasibility of an economic evaluation. The study will have three phases. The first phase consists of a cluster randomised pilot study to establish recruitment, participation and retention rates. This will involve the recruitment of 30 participants who will be randomly allocated through cluster randomisation according to shift pattern to experimental and control group. The second phase will be a qualitative process evaluation to establish the acceptability of the intervention within a clinical setting. This will involve semi-structured interviews with 13 patients and three focus groups with healthcare professionals. The third phase will be a feasibility economic evaluation to establish the best methods for data collection within a future cluster RCT. Discussion Arts-based interventions have been shown to improve quality of life in healthcare settings, but there is a lack of evidence evaluating arts-based interventions for patients receiving haemodialysis. This study aims to assess the feasibility of a future cluster RCT assessing the impact of an arts-based intervention on the wellbeing and mental health of patients receiving haemodialysis and identify the key factors leading to successful implementation. The hope is this study will inform a trial that can influence future healthcare policy by providing robust evidence for arts-based interventions within the haemodialysis setting. Trial registration The trial was prospectively registered on clinicaltrials.gov on 14/8/2018, registration number NCT03629496.

Kidney disease is often progressive, and patients experience diminished health-related quality of life. In addition, the impact of the coronavirus (COVID-19) pandemic, and its associated restrictions, has brought many additional burdens. It is therefore essential that effective and affordable systems are explored to improve the psychological health of this group that can be delivered safely during the COVID-19 pandemic. The aim of this study is to support a new service development project in partnership with the UK’s leading patient support charity Kidney Care UK by implementing the four-session Compassionate Mindful Resilience (CMR) programme, developed by MindfulnessUK, and explore its effectiveness for patients with stage 4 or 5 chronic kidney disease or have received a kidney transplant. The study will utilise a quasi-experimental, pretest/posttest design to measure the effect of the CMR programme on anxiety, depression, self-compassion, the ability to be mindful, wellbeing, and resilience, using pre- and posttests, alongside a qualitative exploration to explore factors influencing the feasibility, acceptability, and suitability of the intervention, with patients (and the Mindfulness Teacher) and their commitment to practice. Outcomes from this study will include an evidence-based mindfulness and compassion programme for use with people with kidney disease, which is likely to have applicability across other chronic diseases.

Background: Providing holistic care to kidney patients is important; however, without full consideration of the perspectives of people living with a kidney transplant, the provision of truly ‘holistic healthcare’ cannot be possible. It is imperative to understand patient experiences by including kidney patients in key strategies and future renal service planning. Ignoring these important patient views means that there is a significant risk of inappropriate renal service provision and lack of adequate support, impacting overall health. The aim of this study was to develop an in-depth understanding of the lived experiences of kidney transplant recipients. Methods: A total of 23 participants were recruited between two regional nephrology units within the United Kingdom via clinical gatekeepers. In-depth interviews were undertaken. Interviews were digitally recorded, transcribed verbatim, and subjected to interpretative phenomenological analysis. Results: Two themes emerged: “managing ongoing fears of dialysis, distress, and COVID-19” and “dealing with difficult conversations”. Conclusions: Renal healthcare professionals need to understand more than the biological impact of receiving a kidney transplant. Understanding the holistic and multidomain experiences that these participants experience will help healthcare professionals to recognize the needs of this group and ensure more responsive psychosocial care.

Background: Despite evidence indicating the benefits of exercise interventions for women with ovarian cancer both during and following treatment, uptake is poor. There is limited research exploring the implementation of such interventions for this cohort of women. The purpose of this review was to identify implementation theories in relation to exercise interventions for women with stages I–IV ovarian cancer, both during and following treatment; to explain positive and negative contextual factors, which may help or hinder implementation; and to develop a theory on how exercise interventions for women with ovarian cancer may be implemented. Methods: This realist review sourced literature from five electronic databases: CINAHL plus, Medline, Embase, PsycINFO and Google Scholar. Methodological rigour was assessed using the relevant critical appraisal skills programme tools. Results: Nine papers were included. Two intervention stages were identified: first, optimising uptake by providing education to patients on the benefits of exercise, approaching patients when symptoms are adequately managed and offering a personalised exercise programme; second, adherence and retention are influenced by the provision of an “autoregulated” exercise programme with additional supportive infrastructure, individualised goal setting and symptom management support where required. Conclusion: Women with ovarian cancer are reluctant to engage in exercise interventions, despite the supporting evidence in terms of positive clinical outcomes. This realist review elucidates underlying mechanisms and important contextual factors that will support and guide the implementation of exercise interventions for this cohort of women.

Globally, nations are grappling with massive social and economic disruptions and the disparities exposed by the COVID-19 pandemic. The world is in the middle of a wicked problem—one so complex that it is difficult to find a solution. The “Story Model” was developed as a transdisciplinary curriculum model and a collaborative problem-solving model for K to 16. The model can address wicked problems in ways that traditional problem-solving procedures cannot because it allows for messiness, multilayered complexity, and a big picture perspective. With a deeper understanding of the interdependent and interconnected patterns occurring both locally and globally, educators and students alike can contribute actively to shaping a new story that reflects their values, beliefs, and actions.

Patients living with end-stage kidney disease (ESKD) have been seriously impacted by the COVID-19 pandemic. As these patients are considered extremely clinically vulnerable, they were advised to ‘shield’ at home, with limited face-to-face contact and support for the duration of the pandemic. Living with ESKD impacts heavily on patients’ mental health and wellbeing, and this extended period of isolation and loneliness is likely to have a further negative effect on patients’ mental wellbeing. The Renal Arts Group (RAG), Queen’s University Belfast, aims to improve the quality of life of those living with ESKD and the extended renal community through engagement with the arts. We developed an initiative, funded by the Economic and Social Research Council, and carried out an evaluation. The initiative included a programme of online arts-based activities that built upon the work of RAG and provided mental wellbeing support for patients who faced an extended, lonely period of self-isolation. We worked with experienced arts practitioners to identify appropriate activities and developed five workshops and tutorials that were delivered online. We received positive feedback from participants who found the activities to be enjoyable, beneficial to their mental wellbeing and were interested in undertaking further activities online. We conducted interviews with the arts facilitators and identified three themes for consideration when developing online arts activities for the renal community. Participants reported that the activities benefited their mental wellbeing, were enjoyable and provided an opportunity to meet others with shared interests. The arts facilitators reported experiences around accessibility, audience engagement, impact on health and wellbeing and facilitator experience, that should be considered when developing online arts activities for the renal community. This evaluation will inform future work in this area, and the arts tutorial videos developed as part of this project will remain available online for members of the renal community to access.

Abstract Background Evidence about the effectiveness of music therapy for improving the quality of life of palliative care patients is positive but weak in terms of risk of bias. Methods This study aimed to determine the feasibility of a randomised controlled trial to evaluate the effectiveness of music therapy for improving the quality of life of hospice inpatients, as measured by the McGill Quality of Life questionnaire. Objectives included recruitment of 52 participants over 12 months and provision of data to support the calculation of the required sample size for a definitive randomised trial, taking into account the retention rates of recruited participants; and evaluation of the viability of the intervention and the acceptability of the assessment tool. The design was a single-centre, researcher-blinded randomised pilot and feasibility study involving two parallel groups. Participants were recruited from one inpatient hospice unit in Northern Ireland. Eligibility criteria were an Eastern Cooperative Oncology Group performance status of two or lower and an Abbreviated Mental Test score of seven or more. Consenting patients were randomly allocated to the intervention or control group using a 1:1 allocation ratio. The intervention group received up to six individual music therapy sessions over 3 weeks in addition to usual care. The control group received usual care only. Results Fifty one participants were recruited over 12 months. Twenty five were allocated to the intervention group and 26 to the control group. Seventy one percent of participants were lost to follow up by week 3, the proposed primary endpoint. The primary endpoint was moved from week 3, when 71% were lost to follow up to week 1, when 33% were lost. The McGill Quality of Life questionnaire was generally acceptable to participants. In order to detect a small to moderate effect size of 0.3, a fully powered study would require the recruitment of 698 participants. Conclusions A Phase III randomised controlled trial to evaluate the effectiveness of music therapy in improving the quality of life of hospice inpatients is feasible. Trial registration ClinicalTrials.gov: NCT02791048. Registered 6 June 2016.

Abstract Background Surveys using traditional measures of nutritional status indicate that muscle wasting is common among persons with end-stage kidney disease (ESKD). Up to 75% of adults undergoing maintenance dialysis show some evidence of muscle wasting. ESKD is associated with an increase in inflammatory cytokines and can result in cachexia, with the loss of muscle and fat stores. At present, only limited data are available on the classification of wasting experienced by persons with ESKD. Individuals with ESKD often exhibit symptoms of anorexia, loss of lean muscle mass and altered energy expenditure. These symptoms are consistent with the syndrome of cachexia observed in other chronic diseases, such as cancer, heart failure, and acquired immune deficiency syndrome. While definitions of cachexia have been developed for some diseases, such as cardiac failure and cancer, no specific cachexia definition has been established for chronic kidney disease. The importance of developing a definition of cachexia in a population with ESKD is underscored by the negative impact that symptoms of cachexia have on quality of life and the association of cachexia with a substantially increased risk of premature mortality. The aim of this study is to determine the clinical phenotype of cachexia specific to individuals with ESKD. Methods A longitudinal study which will recruit adult patients with ESKD receiving haemodialysis attending a Regional Nephrology Unit within the United Kingdom. Patients will be followed 2 monthly over 12 months and measurements of weight; lean muscle mass (bioelectrical impedance, mid upper arm muscle circumference and tricep skin fold thickness); muscle strength (hand held dynamometer), fatigue, anorexia and quality of life collected. We will determine if they experience (and to what degree) the known characteristics associated with cachexia. Discussion Cachexia is a debilitating condition associated with an extremely poor outcome. Definitions of cachexia in chronic illnesses are required to reflect specific nuances associated with each disease. These discrete cachexia definitions help with the precision of research and the subsequent clinical interventions to improve outcomes for patients suffering from cachexia. The absence of a definition for cachexia in an ESKD population makes it particularly difficult to study the incidence of cachexia or potential treatments, as there are no standardised inclusion criteria for patients with ESKD who have cachexia. Outcomes from this study will provide much needed data to inform development and testing of potential treatment modalities, aimed at enhancing current clinical practice, policy and education.

Background: Globally, close to one billion people are living with a mental health disorder, and it is one of the most neglected areas in Public Health. People with severe mental illness have greater mortality risk than the general population, experience health care inequalities throughout life and represent a vulnerable, under-served and under-treated population, who have been overlooked in health inequality research to date. There is currently a dearth of evidence in relation to understanding the palliative care needs of people with severe mental illness and how future care delivery can be designed to both recognise and respond to those needs. This study aims to co-design an evidenced informed service model of integrated palliative care for persons living with a severe mental illness. Methods: This qualitative sequential study underpinned by interpretivism will have six phases. An expert reference group will be established in Phase 1, to inform all stages of this study. Phase 2 will include a systematic literature review to synthesise current evidence in relation to palliative care service provision for people with severe mental illness. In Phase 3, qualitative interviews will be undertaken with both, patients who have a severe mental illness and in receipt of palliative care (n = 13), and bereaved caregivers of people who have died 6–18 months previously with a diagnosis of severe mental illness (n = 13), across two recruitment sties in the United Kingdom. Focus groups (n = 4) with both mental health and palliative care multidisciplinary staff will be undertaken across the two recruitment sites in Phase 4. Phase 5 will involve the co-design of a service model of integrated palliative care for persons living with severe mental illness. Phase 6 will develop practice recommendations for this client cohort. Discussion: Palliative care needs to be available at all levels of care systems; it is estimated that, globally, only 14% of patients who need palliative care receive it. Reducing inequalities experienced by people with severe mental illness is embedded in the National Health Service Long Term Plan. Internationally, the gap between those with a mental illness needing care and those with access to care remains considerable. Future policy and practice will benefit from a better understanding of the needs of this client cohort and the development of a co-designed integrated care pathway to facilitate timely access to palliative care for people with a severe mental illness.

Background: End-stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs. Aim: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi-structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers.

Background: Patients with end-stage kidney disease receiving haemodialysis rely heavily on informal caregivers to support them living at home. Informal caregiving may exact a toll on caregivers’ physical, emotional, and social well-being, impacting negatively on their overall quality of life. The aim of this narrative review is to report knowledge requirements and needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis. Methods: The review followed the Preferred Reporting Items for Reporting Systematic Reviews and Meta-analyses (PRISMA). Five electronic databases were searched: Web of Science, PsycINFO, Embase, Medline, and CINAHL to identify the experiences and unmet needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis. Results: Eighteen papers were included in the review and incorporated a range of methodological approaches. There are several gaps in the current literature around knowledge and informational needs and skills required by informal caregivers, such as signs and symptoms of potential complications, dietary requirements, and medication management. Although most research studies in this review illustrate the difficulties and challenges faced by informal caregivers, there is a paucity of information as to which support mechanisms would benefit caregivers. Conclusion: Informal caregivers provide invaluable assistance in supporting people with ESKD undergoing haemodialysis. These informal caregivers however experience multiple unmet needs which has a detrimental effect on their health and negatively influences the extent to which they can adequately care for patients. The development of supportive interventions is essential to ensure that informal caregivers have the requisite knowledge and skills to allow them to carry out their vital role.

Abstract Background Music therapy is increasingly used as an adjunct therapy to support symptom management in palliative care. However, studies to date have paid little attention to the processes that lead to changes in patient outcomes. To fill this gap, we examined the processes and experiences involved in the introduction of music therapy as an adjunct complementary therapy to palliative care in a hospice setting in the United Kingdom (UK). Methods Using a realistic evaluation approach, we conducted a qualitative study using a variety of approaches. These consisted of open text answers from patients (n = 16) on how music therapy helped meet their needs within one hospice in Northern Ireland, UK. We also conducted three focus groups with a range of palliative care practitioners (seven physicians, seven nursing staff, two social workers and three allied health professionals) to help understand their perspectives on music therapy’s impact on their work setting, and what influences its successful implementation. This was supplemented with an interview with the music therapist delivering the intervention. Results Music therapy contains multiple mechanisms that can provide physical, psychological, emotional, expressive, existential and social support. There is also evidence that the hospice context, animated by a holistic approach to healthcare, is an important facilitator of the effects of music therapy. Examination of patients’ responses helped identify specific benefits for different types of patients. Conclusions There is a synergy between the therapeutic aims of music therapy and those of palliative care, which appealed to a significant proportion of participants, who perceived it as effective.

The global prevalence and burden of end-stage kidney disease (ESKD) is increasing, partially as a result of an aging population. Patients with ESKD who receive haemodialysis experience a difficult, protracted treatment regimen that can negatively impact mental health and wellbeing. One way of addressing this issue could be through the provision of arts-based interventions during haemodialysis treatment. A process evaluation was conducted as part of a larger feasibility study, to explore experiences and acceptability of an intra-dialytic (during haemodialysis) arts-based intervention. Thirteen patients and nine healthcare professionals were interviewed. The interviews were transcribed verbatim and thematically analysed. Three themes related to the experience of art on dialysis included: the perception of art participation, as patients described initial anxiety around participating in art, which reduced after they experienced the intervention; the benefits of art participation on both patients and healthcare professionals; the benefits including improved self-esteem, motivation, increased social interaction and an overall improved haemodialysis experience; and the acceptability of the arts-based intervention, as the intervention was highly acceptable, even when delivered by a facilitator who was not a professional artist. This study highlights that arts-based interventions could be used to improve the mental health and wellbeing of patients with ESKD receiving haemodialysis.

Background: Living with kidney failure and undergoing hospital haemodialysis (HD) is associated with a high prevalence of mental health problems and poor quality of life. However, the COVID-19 pandemic has brought additional challenges for this patient population. Objectives: To understand the impact on mental health and well-being during the COVID-19 pandemic in people receiving HD. Methods: An online survey using a cross-sectional study design. Two validated assessment tools (General Health Questionnaire-12 (GHQ-12); Personal Wellbeing Index (PWI)), binary, Likert and free-text qualitative questions were included. Individuals with kidney failure receiving HD, over 18 years of age, were recruited online between July and August 2020. Results: Forty-four participants were recruited. Approximately, 54% of respondents were tested for COVID-19; however, no positive results were reported by patients or associated family members. Scores of GHQ-12 and PWI were compared with those from previous studies. Mental health distress was higher in prevalence (68.2%) and severity (M = 18.3) in this study when compared to that of the general population in Northern Ireland during COVID-19 (April 2020). In addition, well-being (M = 37.16, SD = 18.19) was poorer when compared to that of a pre-COVID-19 dialysis patient population. Conclusion: During the current pandemic, individuals receiving hospital HD have heightened mental health distress, and their well-being is impacted negatively. This study reinforces the need to provide appropriate psychosocial care as well as supportive interventions for mental distress to patients with kidney failure during and after the COVID-19 pandemic.

Palliative care is on the global health agenda, as only approximately 14% of people who require palliative care receive it [...]

Abstract Background The concept of evidence-based practice is globally relevant in current healthcare climates. However, students and teachers struggle with integrating evidence based practice effectively into a curriculum. This has implications for nurse education and in particular the way in which research is presented and delivered to students. A new undergraduate Evidence Based Practice module (Evidence Based Nursing 1) was developed in a large University within the United Kingdom. It commenced in October 2014 running in year one of a 3 year undergraduate nursing programme. This study sought to formally evaluate attitudes and beliefs, knowledge level and utilization of evidence based practice though using two validated questionnaires: Evidence Based Practice Beliefs Scale© and Evidence Based Practice Implementation Scale©. Method This was a pilot study using quantitative pre and post-test design. Anonymised data was collected from Year 1 undergraduate student nurses in the September 2014 intake (n = 311) at two time points. Time 1: pre-module in September 2014; and Time 2: post –module in August 2015. All data was collected via Survey Monkey. Results Results demonstrate that the educational initiative positively impacted on both the beliefs and implementation of evidence based practice. Analysis highlighted statistically significant changes (p

Abstract Background Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland. Methods Qualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites on the Island of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3–18 months previously; and 4 focus groups with healthcare professionals. Data analysed using thematic analysis. Results Findings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management. Conclusion This research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis. However, the feasibility of integrating this model into clinical practice requires further exploration.