To (1) systematically identify tools developed to assess and address the support needs of informal carers in palliative or end-of-life care and (2) examine the extent to which socially stratifying sample characteristics have been reported following tool use.

A systematic scoping review was conducted.

Medline, CINAHL, PsycINFO, ASSIA, ProQuest Central and Web of Science databases were searched from inception to May 2024 and again in May 2025. Primary studies using any methodology reporting the development and/or use of tools to assess informal carer support needs in end-of-life care were included. Consistent with scoping review methodology, we did not conduct a quality appraisal of included studies. We extracted tool characteristics, frequency of use and sample characteristics according to PROGRESS+.

A total of 74 articles were included. From these, 24 unique tools were identified. Nine tools were used in ≥2 articles, while 15 were used only once. The most commonly used tools were the Carer Support Needs Assessment Tool (35 articles), the Family Inventory of Needs (6 articles), the Carer Alert Thermometer (5 articles) and the Spiritual Needs Inventory (4 articles). There was limited evaluation of tools beyond psychometric validation. There were substantial gaps in equity-informed caregiver sample reporting. While gender, age and country of participants were commonly reported, most other PROGRESS+characteristics were inconsistently or minimally reported.

While numerous tools exist to assess and address informal caregiver support needs, there is considerable variation in tool uptake, evaluation and the extent to which tools consider equity factors. There is a need for equity-informed tool development and clearer conceptualisation of caregiver needs, alongside efforts to evaluate tool implementation, impact and sustainability in palliative care settings.

Antipsychotics are commonly used in adult palliative care practice due to their multiple therapeutic indications. However, the available evidence regarding their use, effectiveness and safety in this context remains heterogeneous, and no comprehensive overview of their use across all palliative indications currently exists. A scoping review is therefore warranted to provide an overall picture of current practices in palliative care. This review aims to synthesise and map the existing evidence regarding the use of antipsychotics in adult palliative care.

This scoping review will include studies involving adult human populations (≥18 years) receiving antipsychotics in a palliative care context. All generations of antipsychotics and all palliative indications will be considered. Experimental, observational, qualitative studies, expert recommendations and relevant grey literature published in English or French will be included. The scoping review will be conducted in accordance with the Joanna Briggs Institute methodology and reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis extension for Scoping Reviews guidelines. Searches will be performed in PubMed, Scopus, PsycInfo, CINAHL, Cochrane Library, Cairn.info and Google Scholar. Two independent reviewers will screen titles, abstracts and full texts and extract data using a standardised form. Results will be synthesised descriptively and presented in tables and narrative form.

This study does not require ethical approval as it is based on published literature only. The results will be disseminated through publication in a peer-reviewed journal and presentations at scientific conferences.

Methadone exerts analgesic effects through μ-opioid receptor affinity and N-methyl-D-aspartate receptor antagonism, which may benefit refractory cancer pain with neuropathic components. Methadone can be introduced by the ‘stop-and-go’ (SAG) method or the ‘add-on’ (AO) method, in which low-dose methadone is added to existing opioids. Observational studies suggest AO may improve pain control but no double-blind randomised controlled trial (RCT) has evaluated this approach. Therefore, the primary aim of this study is to assess the feasibility of conducting a double-blind RCT comparing methadone AO therapy with opioid dose escalation according to standard practice for refractory cancer pain while also exploring safety and preliminary efficacy signals.

A two-centre, randomised, double-blind, two-arm feasibility trial will enrol 22 patients with advanced or recurrent cancer and inadequately controlled pain (oral morphine equivalent daily dose 60–300 mg). Participants will be allocated 1:1 to the methadone AO or opioid-escalation group using a web-based randomisation system with the minimisation method. The primary endpoint is the completion rate of the 2-week study treatment. Secondary outcomes include pain intensity (Brief Pain Inventory), time to adequate pain control, achievement of a personalised pain goal, adverse events (Common Terminology Criteria for Adverse Events (CTCAE)/Patient-Reported Outcomes version of the CTCAE) and quality of life (European Organisation for Research and Treatment of Cancer-Quality of Life Questionnaire Core 15-PAL). Feasibility will be determined based on achieving a treatment completion rate of 70% or higher.

The protocol was approved by the Certified Review Board of the National Cancer Centre Hospital (CRB3180008). Written informed consent will be obtained from all participants. The trial is registered in the Japan Registry of Clinical Trials. Results will be published in peer-reviewed journals and presented at international conferences.

jRCTs031240220.

Chronic kidney disease (CKD) is a significant global health concern, contributing substantially to mortality; in advanced stages, adults often require kidney supportive care (KSC), a model of care/intervention that addresses complex palliative and supportive needs. These needs often remain insufficiently addressed, particularly among adults receiving haemodialysis, due to the interplay of multiple contextual factors and inconsistent reported outcomes. Consequently, it remains unclear how, for whom and under what circumstances KSC works (or does not work). Therefore, this rapid realist review aims to identify the key contexts in which KSC interventions have been implemented and the mechanisms that influenced palliative care outcomes for adults receiving haemodialysis.

Rapid realist review is a structured, theory-driven approach to evidence synthesis conducted within a condensed timeframe, aiming to explain how and why interventions work, for whom and in what contexts, to identify effective models of service delivery. This rapid realist review will be conducted following a multiple-step process, including defining the project scope and research questions development (including how the findings will be utilised); development of search terms and identification of relevant literature; quality appraisal; data extraction and preliminary programme theory development; validation and refinement of programme theory with content experts; and dissemination of findings.

A systematic literature search will be conducted from 2020 to 2025 using the following databases: MEDLINE, CINAHL, PsycINFO, Cochrane Central Register of Controlled Trials, Scopus and Academic Search Complete, with supplementary forward and backward citation tracking. Two reviewers will screen titles and abstracts for relevant research, and the full papers selected will be used to extract data and assess the quality of evidence based on relevance, richness and rigour. Data extraction and synthesis will be conducted iteratively to identify context-mechanism–outcome configurations (CMOCs), which will inform the development and refinement of the programme theory, rather than simply informing palliative care outcomes.

A 10-member expert panel will review, evaluate and reflect on the initial CMOCs in light of their clinical expertise and personal experience. The reporting of findings from this review will be guided by the Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES). This rapid realist review will support service redesign to better address the unmet palliative care needs of adults receiving haemodialysis and inform policy initiatives and education to deliver context-specific KSC across the UK and globally.

This study received ethics approval from Coventry University Ethics Committee (Ref-P182536). Results will be disseminated to stakeholder groups and by means of publication in a peer-reviewed journal and presentation at international scientific conferences.

CRD420251000111.

Effective support for patients with advanced cancer and their relatives requires addressing individual needs, preferences and wishes, with communication as a central component. However, discussions about end-of-life issues are often perceived as difficult, and communication needs frequently remain unmet. While past interventions have primarily targeted healthcare professionals, evidence suggests that directly involving patients can have positive effects. eHealth solutions offer a promising approach to facilitate access to information, support communication and promote patient engagement. Building on this, we developed a web-based application (ASTENZ) and are now evaluating its feasibility, usability and acceptability in a pilot study.

A single-centre, randomised, controlled, two-arm trial with mixed-methods elements will be conducted to assess the feasibility of app usage and the study design. A realist approach will guide the study, with quantitative data complemented by qualitative interviews. Patients aged >18 years with advanced cancer and/or their relatives will be recruited from the interdisciplinary ambulatory chemotherapy unit, the palliative care unit and the dermatology cancer unit at the University Hospital of Marburg, Germany. Sample size calculations indicate a total of n=171 participants (114 patients, 57 relatives), randomly assigned in a 2:1 ratio to the intervention group (using the ASTENZ app) or control group (treatment as usual). Control group participants will receive app access after the survey period. Both groups will be assessed at 4 and 8 weeks. Primary outcomes: feasibility, usability and acceptability; secondary outcomes: knowledge on end-of-life topics, confidence, readiness for end-of-life conversations, functionality, anxiety and depression, psychosocial distress, technical data and number of consultations. Primary analyses will be descriptive. Trial status: recruitment is planned to start on 12 February 2026.

The study was approved by the Ethics Committee for Human Research at Philipps University Marburg (ref. 25–292 BO) and preregistered in the German Clinical Trials Register (DRKS00037577). All materials and procedures were reviewed and approved by the ethics committee, and written informed consent will be obtained prior to inclusion. Study results will be published in peer-reviewed journals, presented at conferences and used to inform the design of a future effectiveness trial, with potential options for wider app dissemination.

DRKS00037577.

Unintentional weight loss is prevalent in advanced cancer and maintaining weight is critical to improve clinical outcomes. Body image plays a significant role in how weight loss is perceived. A previous Swedish study showed that men with advanced cancer had a negative perception of cancer-induced weight loss whereas women perceived the weight loss more positively.

The aim of the GRACE study (Global Research on Appearance in Cancer) is to study gender differences in the perception of body image during cancer-induced weight loss. Second, we aim to explore cross-country differences in perceptions of body image.

This is a study protocol for a multi-centre, cross-sectional study across six countries (Sweden, Chile, New Zealand, Switzerland, the United States and Vietnam) spanning five continents. We aim to recruit 50 women and 50 men with advanced cancer from each country, targeting 600 people in total. Data will be collected through a structured digital questionnaire covering perceived body image measured with the Body Image Scale (BIS), demographics, anthropometrics, weight history, disease-related symptoms and dietary intake. Data collection started in 2025. Patients are enrolled at each site following ethical approval. The primary endpoint is difference in BIS-score between men and women. A difference of 3 BIS points between groups will be considered clinically significant. For statistical analysis, multivariable linear regression will be used, including country as a fixed effect to account for between-country differences. We will also perform secondary, exploratory analyses examining between-country variation in the gender difference in BIS.

Ethical approval has been obtained from all of the participating countries. Results will be disseminated through peer-reviewed publications and conference presentations.

ClinicalTrials.gov (NCT07195448).

The study aimed to adapt the Grief Support in Healthcare Scale (GSHCS) for use in the Turkish context and evaluate its psychometric properties among nurses.

This study is a methodological study.

This study was conducted in Turkey.

The pilot study included 30 nurses for preliminary testing and test-retest reliability. The main study comprised a convenience sample of 355 nurses.

Content validity was evaluated by a panel of experts using the Content Validity Index (CVIs). Construct validity was assessed through exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Internal consistency was examined using Cronbach’s α and split-half reliability, while convergent validity was tested via correlations with the Professional Bereavement Scale (PBS).

CVIs were strong (Item-Level Content Validity Index=0.99; Scale-Level Content Validity Index=0.94). EFA identified a three-factor structure explaining 58.33% of the total variance. CFA confirmed the three-factor model (²(83) = 338.204, ²/df=4.075, root mean square error of approximation=0.093, Goodness of Fit Index=0.892, Comparative Fit Index=0.922, Tucker-Lewis Index=0.901, Incremental Fit Index=0.923, Normed Fit Index=0.900). Cronbach’s α was 0.888 for the total scale. All subdimensions showed significant positive correlations with PBS-Short-term Bereavement Reactions Subscale (r=0.176–0.401).

The Turkish version of the GSHCS is a valid and reliable tool for assessing nurses’ perceptions of grief support in healthcare settings. The scale retains its conceptual structure and demonstrates sound psychometric properties, making it suitable for clinical research and organisational assessments in Turkey.

Muslim immigrants and their direct descendants are a large ethnoreligious minority in many regions, yet their access to palliative care remains under-researched and poorly theorised for practice. Existing evidence points to structural, communicative and cultural constraints, while mechanisms at the threshold of access remain unclear.

We explored access to palliative care among this population, developed an explanatory model of access dynamics and reconstructed culturally and religiously framed narrative resources.

We conducted a qualitative, multicentre, four-group study using constructivist Grounded theory with complementary Narrative inquiry. Loosely structured interviews followed Kaufmann’s ‘L’entretien compréhensif’ between August 2021 and December 2022.

This study involved six centres in North Rhine-Westphalia, Germany. Participants were 53 adults from 14 countries in four groups (patients receiving palliative care vs not, relatives, interface stakeholders).

The Grounded theory SAME SAME BUT DIFFERENT conceptualises a paradox between formal equality and lived constraint at the threshold of access. Six analytical categories operated cyclically and mutually reinforced delayed access: (I) Othering/Belonging, (II) Information/Representation, (III) Role of the family, (IV) Palliative stigma, (V) ‘Language barrier’ as a multidimensional challenge and (VI) Dealing with life crisis, illness and death.

Participants identified leverage points within the access dynamics, including native-language information and contact persons, openness to cultural-religious concerns, culture- and religion-sensitive training, Muslim support services and spiritual care and non-denominational environments.

Narrative inquiry reconstructed four culturally and religiously framed narrative resources that shaped access decisions.

Intersecting structural, communicative and meaning-making dynamics affect access to palliative care. Culturally adaptive, multilingual and community-engaged approaches require evaluation and should be supported by improved routine sociodemographic data.

Informal caregivers are of utmost importance in providing sufficient care for palliative outpatients, yet are at risk for psychological burden themselves which might limit their capability to maintain their support.

This project aims to identify structural and psychological factors that are associated with the psychological burden of informal caregivers.

The prospective observational study recorded illness-related and structural data. Multiple logistic regressions were performed to identify relevant factors for increased psychological burden.

This monocentric study recruited 250 adult patients of a specialised outpatient palliative care team and 152 caregivers between April 2021 and August 2022.

Of 250 patients screened for participation, 152 caregiver–patient dyads were included in this study. Above-threshold depressivity was reported by 31%, anxiety by 33% and an elaborated psychological distress was stated by 82% of informal caregivers. Multivariate analyses revealed a significant association of above-threshold depressivity with higher daily caregiving time (OR: 3.215; p=0.026) and being highly burdened by COVID-19 (OR: 1.142; p=0.048). Perceived higher burden from COVID-19 seemed to be protective concerning elevated anxiety (OR: 0.859; p=0.024). High distress was non-significantly associated with higher education (p=0.056) and support by a professional nursing service (p=0.069). The statistical models explain 19% (anxiety, depressivity) and 21% (distress) of the total variance.

As the psychological burden of informal caregivers in an outpatient setting remains high, it tends to be slightly below those strains reported by informal caregivers in inpatient or curative settings. This project adds to the scarce knowledge about associated factors. Further research could address how to implement these results into daily clinical practice, for example, accounting for risk-factors in discharge routine.

NCT05082389.

While compassion is widely recognised as an essential component of high-quality patient care, the compassion needs of clinicians often go unrecognised and unmet. Clinicians face multifaceted sources of workplace suffering, both sources inherent to working with the sick and avoidable sources due to healthcare systems and leadership challenges. Organisational compassion, defined as the continuous and systematic identification, prevention and alleviation of sources of suffering for healthcare workers, offers a paradigm shift in mitigating and preventing clinician suffering and burnout. Yet little is known about how clinicians experience suffering and compassion from their organisations, teams and leaders.

Our overarching goal is to develop a clinician-reported experience measure of organisational compassion. The purpose of this study was to explore how clinicians experience suffering and compassion in healthcare organisations.

This qualitative study used semistructured interviews of interdisciplinary paediatric hospice and palliative care clinicians from across the USA. A moderator’s guide was developed based on the literature of organisational compassion in management and healthcare and validated through practice interviews with clinicians. 22 participants were recruited via national paediatric hospice and palliative care email list serves. Video interviews were conducted via Zoom. Transcripts were analysed using a hybrid grounded theory-thematic analysis methodology to identify themes and to construct a theoretical framework of compassion experiences.

Five major themes of experiencing compassion emerged: (1) Feeling cared about, characterised by authentic, empathetic responses to clinician distress; (2) Dignity, encompassing being valued, respected and recognised as a whole person and professional; (3) Proximal (team) compassion, including camaraderie, shared workload and mutual support within teams; (4) Structural (organisational) compassion, reflecting policies, practices and benefits that alleviate or exacerbate suffering and (5) Compassionate leadership behaviours, such as presence, empathy and connection to frontline staff needs.

Healthcare work includes sources of both inherent and avoidable suffering for clinicians. In this study, we sought to understand how clinicians experience compassion from their organisations, leaders and team members during times of distress. We found five themes of experiencing compassion in healthcare organisations: feeling cared about; dignity; proximal (team) compassion; structural (organisational) compassion and compassionate leadership behaviours. These qualitative data and results will provide an empiric foundation for the development of a clinician-reported experience measure of compassion for use in healthcare settings. Such a measure will enable future research examining how compassion experiences in healthcare may predict workforce outcomes such as burnout, satisfaction, engagement and thriving. Ultimately, this work may support the design of interventions aimed at strengthening compassionate organisational cultures and improving conditions for the healthcare workforce and both experiences and outcomes of the patients they serve.

In many low-income and lower-middle-income countries (LMICs), palliative care services are limited and much of the care for adults with advanced cancer is provided by family caregivers. This review aims to explore the family caregiver experience in providing palliative care to adult patients with cancer in LMICs.

This qualitative systematic review will be conducted using a comprehensive search strategy on PubMed (MEDLINE), Embase, CINAHL and PsycINFO without language or date restrictions. The COnnecting REpositories (CORE) database of the Open University will be searched for grey literature. Review questions will follow the PICo framework (Population, Phenomena of Interest and Context). Qualitative or mixed-method studies on the experience of family caregivers of adult patients with cancer (above 18 years) receiving palliative care in LMICs will be included. Study quality will be assessed using the Joanna Briggs Institute (JBI) critical appraisal tools. Findings will be synthesised using meta-aggregation or with a narrative synthesis if pooling is not feasible. The review process will follow the JBI methodology for systematic reviews of qualitative evidence and will be reported according to the ENhancing Transparency in REporting the synthesis of Qualitative research (ENTREQ) framework.

No ethical approval is required as the study involves secondary data analysis of published literature. Ethical principles of accurate reporting and transparency will be upheld. Findings will be published in peer-reviewed open-access journals and presented at academic conferences. Recommendations will be shared with policymakers and healthcare organisations responsible for the provision of palliative care for patients with cancer in LMICs.

CRD420251010556.

Chronic obstructive pulmonary disease (COPD) has an unpredictable clinical course, causing difficulties in short-term mortality prediction, overtreatment and delayed palliative care. Existing prediction models are limited and lack applicability to Chinese elderly patients with advanced COPD. Given the heavy disease burden and limited palliative care in China, we designed this multicentre cohort study to develop a 6-month mortality prediction model for elderly patients with advanced COPD to aid risk stratification, timely palliative care and efficient healthcare resource allocation.

Patient recruitment has been ongoing since May 2024 and will be completed by December 2026, with a 12-month follow-up to be completed by December 2027. Eligible patients are being enrolled, and multidimensional baseline data including demographic characteristics, clinical indicators, laboratory results, comprehensive geriatric assessment and COPD-specific prognostic factors are being systematically collected. All participants will receive 12 months of standardised follow-up (monthly for the first 6 months and quarterly thereafter) to monitor 6-month all-cause mortality (primary outcome), as well as survival duration, end-of-life healthcare utilisation and do-not-resuscitate status (secondary outcomes). After completion of data collection, we will employ multiple machine learning algorithms to develop and internally validate a 6-month mortality prediction model with pre-specified centres reserved for external validation. Model performance will be evaluated by discrimination and calibration and head-to-head comparisons with the Body Mass Index, Airflow Obstruction, Dyspnoea and Exercise Capacity (BODE) and Age, Dyspnoea and Airflow Obstruction (ADO) indices will be conducted to verify its clinical value. The findings will provide a China-specific prediction tool for elderly patients with advanced COPD to guide clinical intervention, palliative care referral and healthcare resource allocation.

This study was approved by the Biomedical Ethics Review Committee of West China Hospital, Sichuan University (No. 2024-2662) and registered at ChiCTR2500100351. Informed consent is being obtained from all participants. Results will be published in peer-reviewed journals and presented at academic conferences.

ChiCTR2500100351.

To evaluate the feasibility, acceptability and potential efficacy of the culturally adapted Educate, Nurture, Advise Before Life Ends (ENABLE) programme in Singapore for patients with heart failure (HF) and their family caregivers.

Non-blinded randomised wait-list controlled pilot study, using Simon’s randomised phase II trial design.

Specialist outpatient clinics in a tertiary cardiac centre in Singapore.

Patients had a diagnosis of American Heart Association Stage C or D HF, were symptomatic with New York Heart Association functional class 2 and above symptoms, had a prognosis of 6 months, a hospitalisation in prior 6 months and were on disease-directed HF management. Patients already known to palliative care (PC) were excluded. Recruited caregivers were family caregivers of patients.

ENABLE integrates PC early into HF care. It starts with a comprehensive PC assessment with a PC physician and nurse. This is followed by a series of nurse coach-led health coaching sessions for both patients and caregivers. After the completion of health coaching, participants would receive follow-up phone calls to review their coping up to 6 months post-enrolment.

Feasibility was defined by the proportion of approached patient-caregiver dyads who consented to participate and the proportion of participants who completed health coaching. Acceptability was defined by a score of at least 12 out of a maximum of 16 for the Client Satisfaction Questionnaire 4-Item Survey. Primary efficacy outcome measure was the change in patient quality of life (QOL) at 6 months as measured by Kansas City Cardiomyopathy Questionnaire (KCCQ) total score, with the target effect size (Cohen’s d) being at least 0.25 SD in favour of ENABLE. Other secondary outcomes included patient/caregiver anxiety and depression scores on the Hospital Anxiety and Depression Scale, spirituality scores on the Functional Assessment of Chronic Illness Therapy-Spiritual Wellbeing Scale and caregiver QOL on the Singapore Caregiver Quality of Life Scale.

Feasibility: recruitment was carried out from February 2022 to October 2023. We approached 164 patient-caregiver dyads and 60 patient-caregiver dyads (36.6%) consented. A total of 48 patients and 44 caregivers started on health coaching, of which 44 patients (91.7%) and 43 caregivers (97.7%) completed health coaching.

Acceptability: patients’ satisfaction was high, at 85.7% and 87.5% in the intervention and wait-list arm, respectively. Caregivers were similarly satisfied, at 100% and 87.5% in the two arms, respectively.

Efficacy: intervention-arm patients had a higher mean total KCCQ score at 6 months than wait-list-arm patients (difference in means=12.4; 95% CI 0.9 to 24.0; Cohen’s d=0.43). There was no difference in caregiver QOL changes between trial arms at 3 months and 6 months. Both patients and caregivers had improvements in anxiety at 3 months and sustained improvements in depression and spirituality at 6 months.

Proportion of participants who completed health coaching was high, though proportion of approached participants who consented was lower than expected. Our acceptability and efficacy targets were met. Further phase III testing is planned.

NCT05211882.

To explore priorities, barriers to and experiences of palliative and end-of-life care from the perspectives of people living with HIV.

Cross-sectional online survey conducted in the UK between September 2024 and November 2024.

Online survey of people living with HIV.

The sample (N=90) was adults living with HIV in the UK. The majority of participants were male (82.4%), gay men (77.8%) and white (88.1%).

The majority of participants (58.9%) reported knowing what palliative care was and that they could explain it to someone else; however, a misconception about palliative care being only for the end of life was evident. Over a quarter of respondents (27.8%) reported that their HIV status ‘Sometimes’ negatively affected their experiences of care in general practitioner, hospital and dental settings. The top three priorities for end of life were (1) being in a calm atmosphere, (2) being free of pain and (3) support with psychological well-being. Not being judged was also identified as a priority.

To promote integration of palliative and end-of-life care into care pathways for people living with HIV, partnerships with HIV services and charities may be needed as well as tailored messaging and training for staff in generalist services.

Individuals with end-stage kidney disease (ESKD), whether receiving dialysis or conservative care, experience high symptom burden and limited life expectancy, indicating substantial palliative care needs. Integrating palliative care into kidney care is vital for comprehensive ESKD management, but access remains uneven across sociodemographic groups. Identifying and addressing these disparities is key to ensuring equitable care and improving patient outcomes. This study aims to explore sociodemographic factors associated with specialist palliative care utilisation among people with ESKD.

This study protocol outlines a scoping review of peer-reviewed and grey literature using an established methodological framework by the Joanna Briggs Institute (JBI), and reporting will adhere to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. Relevant literature will be identified through a multi-database (Ovid MEDLINE, Embase, CINAHL, PsycINFO) and grey literature search strategy designed alongside a health sciences librarian. To be included, articles must involve individuals with ESKD and report on how sociodemographic factors influence access to and utilisation of specialist palliative care services. Results of the search will be screened independently by two reviewers and data from included studies will be extracted independently and in duplicate. A narrative and thematic analysis will be conducted to identify key themes related to sociodemographic influences on specialist palliative care access and utilisation among individuals with ESKD, with particular attention to differences between kidney care modalities (dialysis vs conservative care) and the extent to which intersectionality of sociodemographic factors has been examined.

Ethics approval is not required for this scoping review. Findings will be submitted for publication in a peer-reviewed journal. Results will identify patient-related factors influencing access to specialist palliative care in ESKD and remaining gaps in the literature, informing future research and policy to support equitable care.

Chronic and life-limiting illnesses require coordinated care beyond hospital settings, with increasing emphasis on continuity of care in community and out-of-hospital environments. Respite care plays an important role in supporting both patients and caregivers; however, its delivery is often variable and lacks structured clinical guidance. While several frameworks exist to support chronic and palliative care, these have been primarily studied in broader care settings and have not been systematically examined within out-of-hospital respite care. This scoping review aims to map clinical guidance frameworks used in respite care, describe their components and implementation and identify reported patient-level, caregiver-level and system-level outcomes.

This scoping review will be conducted in accordance with Joanna Briggs Institute methodology and reported following the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews guidelines. A comprehensive search will be undertaken across the electronic databases PubMed, Scopus, Embase, CINAHL, Web of Science, PsycINFO and Global Health, along with grey literature sources (ProQuest). Studies of any design including quantitative, qualitative, mixed-methods, implementation studies and service evaluations, published in English from database inception to 31 December 2025 will be included. Two reviewers will independently screen studies, extract data using a structured data-charting form and resolve discrepancies through discussion. Extracted data will be synthesised using descriptive mapping and thematic analysis. Findings will be integrated to identify gaps and implications for low and middle-income country settings.

Ethical approval is not required for this review, as it will use publicly available data. Findings will be disseminated through peer-reviewed publication, conference presentations and integration into the ongoing mixed-methods doctoral project.

Open Science Framework, osf.io/avyzp.