Spirituality has gained increasing attention in healthcare, particularly in palliative care, as it supports meaning, purpose and connection during illness. While literature extensively explores patients’ spiritual needs, growing evidence highlights the importance of addressing the spiritual needs of caregivers and healthcare professionals. Caregivers and relatives often face emotional, ethical and practical challenges during prolonged care pathways, impacting their well-being. Limited training and tools can hinder spiritual care, contributing to distress and burnout among professionals and unmet needs for families. Addressing spirituality in neurodegenerative disease palliative care is essential for holistic, person-centred approaches that foster coping, hope and ethical decision-making. This scoping review aims to map evidence on spiritual needs and challenges of caregivers, relatives and healthcare staff in end-stage neurodegenerative disease care.

This review will follow the Joanna Briggs Institute framework (JBI) for scoping reviews. The search and reporting process will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist. Inclusion criteria followed JBI’s population, concept and context framework with no date or geographical limits; only English and Italian sources ensured accurate interpretation. Searches will use university-access databases and grey literature to capture policy and non-peer-reviewed sources. Databases selected: PubMed, CINAHL, APA PsycINFO and Scopus for comprehensive, multidisciplinary coverage. This inclusive approach is aligned with the purpose of scoping reviews, which aim to map the breadth and depth of available literature. Researchers independently screened titles/abstracts in Rayyan software with blinding, resolved discrepancies collaboratively, piloted and refined extraction tables, and jointly synthesised themes through iterative meetings to ensure rigour and consensus. Findings will highlight existing knowledge, identify gaps and inform future research and practice.

Since secondary data will be analysed, no ethical approval is required. The results will be disseminated through publications subject to peer review. The protocol has been registered with the Open Science Framework https://doi.org/10.17605/OSF.IO/X9275

A qualitative study was conducted in Catalonia (Spain), incorporating the views and opinions of relatives, healthcare professionals and patients on what they considered a ‘good death’. This study aimed to describe barriers, facilitators and unmet needs related to the achievement of a good death.

We recruited adult patients with advanced or chronic conditions, relatives and health and social care professionals involved in end-of-life processes of care, management or strategic planning. All participants took part in a qualitative study. The study was informed by phenomenological, hermeneutical and social constructivist perspectives and included 23 in-depth interviews and three focus group discussions with a total of 31 participants. Fieldwork was conducted between February and April 2022. Data were transcribed and analysed using qualitative thematic content and discourse analysis.

Six main themes were identified, comprising 17 subthemes. Facilitators and barriers related to achieving ‘a good death’ were categorised according to whether they occurred before death or during the dying process. Key facilitators include high-quality palliative care, open communication about death and the ability to choose the place of death. Key barriers included bureaucratic delays, inadequate resources, insufficient professional training and lack of respect for patients’ preferences and wishes.

Our study highlights the need to understand factors that facilitate or hinder the achievement of a good death and the quality of the dying process. Specifically, understanding individual preferences and unmet needs, enhancing communication, increasing awareness, reducing bureaucratic barriers and ensuring adequate resources are essential to support a more dignified end-of-life experience for patients, caregivers and healthcare professionals.

To describe how care home staff experience bereavement and their perspectives on providing bereavement care within care home settings.

Qualitative descriptive study using focus groups analysed with the Framework Method.

Seven residential and nursing care homes for older adults in Scotland.

37 care home staff were recruited through the Enabling Research In Care Homes (ENRICH) Scotland research network. Participants included registered nurses, care workers, senior care workers, managers and ancillary workers with experience of resident death and bereavement practice.

Bereavement was woven through everyday care home life, understood as a tapestry of experiences, relationships and practices that involved staff, residents and their relatives. Three themes that connected to the tapestry metaphor were identified: Warps: structural threads grounding bereavement within the culture of homely living, where close bonds normalise death and dying, and pragmatic acceptance. Wefts: strengthening practices nurturing resilience, including relational trust, mutual support, rituals and follow-up with relatives. Moths: disruptions undermining bereavement practice include family secrecy, hospital deaths with withheld information, difficulty supporting residents with advanced dementia and dissatisfaction with online training.

Bereavement in care homes is collective, relational and embedded in routine practice. Organisational recognition of grief improved interservice communication. Tailored reflective support for staff is needed to sustain compassionate care. Further research should explore how residents experience repeated exposure to death and bereavement within communal living environments.

Dyspnoea is an existentially burdensome symptom in patients with advanced and progressive diseases such as cancer, chronic obstructive pulmonary disease (COPD) and advanced heart failure. Recent studies have highlighted that symptomatic treatment of dyspnoea is often ineffective and may depend on the underlying disease. Immersive virtual reality (IVR) has emerged as a ‘digital therapeutic’ for conditions such as pain, anxiety, and dyspnoea. Brain functional MRI (fMRI) offers the opportunity to identify distinct patterns of dyspnoea. Current findings are mainly limited to healthy volunteers, but clinical data from patients with life-limiting conditions are needed. The aim of this study is to assess the feasibility of identifying dyspnoea patterns in different life-limiting conditions using fMRI and IVR.

This is an observational monocentric feasibility study, conducted in a tertiary university centre. Healthy volunteers and patients diagnosed with advanced cancer, COPD, or heart failure and suffering from persistent dyspnoea will undergo an fMRI of the brain using IVR. The primary outcome of feasibility will be evaluated using descriptive statistics. Secondary outcomes include analysis of fMRI patterns of dyspnoea across populations, patient-reported burden of participation, and correlation between dyspnoea and psychological symptoms. These preliminary data will help determine the sample size required for a future study evaluating differences in dyspnoea patterns. Exploratory comparison between the characteristics of all four groups will be assessed with Fisher’s test (for proportions) and either independent Student’s t-test or Mann-Whitney test, depending on distribution. Correlations between variables will be tested using the Pearson’s correlation coefficient. Statistical analysis will be performed using STATA.

This study protocol received ethical approval on 23 April 2025 from the Commission cantonale d’éthique de la recherche in the Canton of Geneva, Switzerland. The identification number is 2024-02289. Submission to peer-reviewed journals and presentation in international congresses for the dissemination of the study findings are planned.

Clinical Trials number is NCT07319039; Pre-results.

Palliative care supports the physical, emotional, social and spiritual needs of people with serious life-limiting illness. Future research must align with the priorities of people approaching the end of their lives, and those close to them.

To undertake a refresh of the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership, to identify and prioritise areas for future research.

The James Lind Alliance process was applied, between May 2023 and February 2025. An initial online survey collected areas for future research from participants. These were synthesised into a long list of questions and shortlisted through a second online survey. Final ranking of priorities was achieved using an adapted Nominal Group Technique within a prioritisation workshop.

People living with serious life-limiting illnesses, carers, friends and family members supporting them, bereaved people, health and social care professionals, volunteers working in palliative and end-of-life care and members of the public.

1032 and 626 responses were received to survey 1 and 2, respectively. 20 people with lived and professional experience attended the prioritisation workshop. An updated list of 24 priorities for palliative and end-of-life care research was produced.

The priorities reflect the range of issues shaping end-of-life experiences and serve as a call to action for researchers and funders.

Migrants are vulnerable to structural barriers that compromise their health status and simultaneously decrease their access to healthcare, including palliative care. Literature on palliative care access in migrant populations is limited by a focus on migration to high-income countries; under-representation of refugees, asylum seekers and migrant workers; and no investigation of intersectional factors. We seek to conduct a scoping review of palliative care utilisation in migrant populations, including both academic and grey literature, including articles from low- to middle-income countries and about refugees, asylum seekers and migrant workers. The review will map out what is already known and what remains unknown about palliative care utilisation in migrants; identify the factors associated with palliative care utilisation; and determine the extent to which intersectionality has been examined.

This scoping review will adhere to the methodological framework developed by the Joanna Briggs Institute, and reporting will be in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews reporting guidelines. A search strategy developed by a health sciences librarian will be conducted on Ovid MEDLINE, Embase, CINAHL and PsycINFO in addition to grey literature sources up to 7 July 2025. Articles will be included if they studied migrant populations and reported on palliative care utilisation. Two independent reviewers will screen titles and abstracts and review full texts. Data extraction will be performed independently and in duplicate using a standardised, pilot-tested form. Findings will be synthesised thematically, with particular attention to countries of destination, migrant subgroups and intersectional factors.

Since this is a scoping review and uses only previously published data, it does not require approval by a research ethics board. Findings will be disseminated as an abstract for presentation at a palliative care conference and a manuscript for publication in a peer-reviewed journal.

Open Science Framework (gy75v).

To provide a synthesis of the published research evidence on Muslims’ perspectives and preferences regarding end-of-life symptom management to inform future practice and research priorities aimed at providing sensitive end-of-life care.

Systematic review and narrative synthesis.

MEDLINE, EMBASE, CINAHL, PsycINFO, Web of Science, ASSIA, The Cochrane Library and Global Health were searched from 1 January 1994 to 10 July 2024, alongside reference searches of included papers and hand searches of two journals.

The included papers presented primary research on end-of-life care among Muslims in the British Isles.

Data were collected on publication details, study aims, participants, methods and results. Studies were appraised using Gough’s weight of evidence framework. An inductive narrative synthesis consisting of three steps was conducted. This involved conducting a preliminary synthesis of findings, exploring relationships between studies and assessing the robustness of the synthesis.

18 papers were included in the synthesis. Patients prioritised conformity between religion, culture and end-of-life symptom management. Symptom management preferences were also influenced by patients’ desire to maintain a sense of control at the end of life. Family-based care is culturally accepted, and indeed expected, to achieve a peaceful death. Healthcare professionals experienced challenges in providing sensitive symptom management given their unfamiliarity with the religious needs of Muslims.

Co-design research methods are essential to better understand care priorities within diverse Muslim communities. Meaningful collaboration among patients, families and healthcare professionals is necessary to identify mutually acceptable and beneficial approaches to promote culturally and religiously sensitive end-of-life symptom management.

To explore patient and public views and experiences of health professional access to patient health records and advance care planning information to support care at the end of life.

A cross-sectional national online survey of patients and the public using a convergent-parallel approach.

The survey was distributed across the UK by Compassion in Dying and promoted via newsletters and social media channels of the Professional Records Standards Body and NHS England’s digital workstream network. These partners were purposively selected for their active involvement in end-of-life care, including hospices, clinicians and related charities.

A total of 1728 participants from 103 UK counties responded, including people with a terminal condition (n=33), with long-term condition (n=442), who provide or have provided care to a person with a long-term or terminal illness (n=229) and who identified as healthy and interested in planning for the future (n=1024).

Both quantitative data (multiple-choice responses and numerical ratings) and qualitative data (open-ended comments) asking about experiences and views of access to their health and advance care planning information to support their care at the end of life.

Confidence that recorded care preferences would be accessed when needed was low for carers (median=2, IQR 1–4) and moderate for patients (median=3, IQR 1–4). Four themes derived from free-text responses included (1) experience of sharing health information; (2) preparation, communication and understanding; (3) concerns, unknowns and assurance seeking; and (4) preserving dignity and respect: understanding individual contexts.

Respondents acknowledged the opportunity for digital systems to enable access to health and advance care planning information but expressed doubts that professionals would retrieve it when needed, citing past failures. Confidence in record accuracy could be strengthened by patient and carer access. Future research should examine whether such access improves alignment of care with patients’ wishes.

Lesbian, gay, bisexual, trans, intersex, queer/questioning and other sexual and gender minorities (LGBTIQ+) face systemic barriers and discrimination in healthcare settings, leading to significant health disparities. These challenges persist in palliative and end-of-life care (PEOLC), where older LGBTIQ+ people often lack family support and experience social isolation. Despite the increasing ageing of the LGBTIQ+ population in Switzerland, there is limited evidence on their specific PEOLC needs. Additionally, healthcare providers’ knowledge and practices regarding LGBTIQ+ inclusivity in these settings remain understudied. This study aims to address these gaps by co-creating knowledge and developing best practice recommendations for inclusive PEOLC in Switzerland.

This study employs a mixed-methods participatory action research approach across three work packages (WPs). WP0 ensures participatory engagement through advisory boards, workshops and co-design processes across Switzerland’s four linguistic regions. WP1 investigates the palliative and PEOLC needs of LGBTIQ+ people and their (chosen) families through qualitative interviews (n30) and a quantitative survey embedded in the Swiss LGBTIQ+ Panel. WP2 explores healthcare providers’ perceptions and practices regarding LGBTIQ+ patients through qualitative interviews (n30) and a nationwide quantitative survey among palliative and PEOLC professionals. Data will be analysed using reflexive thematic analysis for qualitative data and multivariate regression models for quantitative data. Findings will be synthesised through a specific data integration framework, integrating community and healthcare perspectives.

This study has received ethical approval from the relevant Swiss Ethics Committees. The participatory approach promotes inclusivity, empowering LGBTIQ+ people and healthcare providers in shaping recommendations. Findings will be disseminated via peer-reviewed publications, policy briefs, stakeholder workshops and the co-created Rainbow Book, a best-practice guide for LGBTIQ+ inclusive palliative and PEOLC in Switzerland.

This study aimed to describe palliative medicine physicians’ experiences performing pain assessment using the Numeric Rating Scale (NRS)—one of the most widely used pain assessment tools—for patients with cancer receiving specialised palliative care.

This qualitative study used reflexive thematic analysis.

The study was conducted in specialised palliative care settings.

Semi-structured interviews were conducted with 14 palliative medicine physicians in specialised palliative care.

The interviews were transcribed and analysed using reflexive thematic analysis.

Four themes were identified: ‘Striving to create a shared understanding’, ‘Meeting individual needs’, ‘Interpreting and managing ratings’ and ‘Importance of organizational structures’. This can be seen as a process that moves from creating a shared foundation through individual patient meetings and handling NRS ratings to organisational-level challenges.

The study shows the complexity needed within palliative cancer care when using the most common pain assessment tool in Sweden, the NRS. The tool may seem simplistic, but, as shown in this study, the physicians found interpreting the assessments challenging for the whole team. This complexity should be incorporated into future healthcare education and training within the palliative care area, where patients often have chronic pain conditions in combination with cognitive impairment. Future research needs to focus on developing reliable pain assessment methods for patients who are cognitively impaired because of the cancer.

To examine end-of-life knowledge, attitudes and behaviours associated with hospice care preference in community-dwelling older adults from Shanghai, China.

This was a cross-sectional study recruiting community-dwelling older adults from Shanghai. Bivariate analysis and multivariate logistic regression models were conducted to identify associated factors.

Seven community health service centres in Shanghai, China.

A total of 404 community-dwelling older adults.

Participants were asked to provide their hospice care preference (‘If you were to become critically ill with limited life expectancy, would you choose hospice care?’) and related reasons. To evaluate knowledge, attitudes and planning behaviours related to end-of-life issues, a structured questionnaire was developed through a multistep process. Demographic and clinical characteristics were also collected.

Nearly two-thirds of participants (65.8%) reported awareness of hospice care. Most of the participants (81.2%) reported they would choose hospice care at the end-of-life stage. Bivariate analyses showed that marital status, living status, education background and disposable personal income were significantly associated with hospice care preference. After controlling for confounding variables, the logistic regression analysis suggested the significant effects of knowledge level of hospice care (β=0.318, 95% CI (1.156 to 1.636), p

The Chinese older adults’ knowledge, attitudes and behaviours towards end-of-life issues in metropolitan areas has been changing. Their preference towards hospice care provides a good foundation for the utilisation of hospice care in the future. Community-based educational interventions should target demographic characteristics such as being unmarried, living alone and having lower levels of education and income among older adults to enhance their knowledge and family communication about hospice care.

Values and preferences are key determinants of optimal care, and variability in patient values and preferences often dictates differences in patient management. Clinicians’ views of patients’ values and preferences may differ across cultural aspects and stage of training, but the extent to which this is the case remains uncertain. One key value and preference issue is the trade-off between quantity and quality of life, and this issue is particularly prominent among patients with dementia. We therefore propose to investigate the extent to which physicians’ perceptions of optimal management for patients living with advanced dementia may differ due to cross-cultural factors and stage of medical training.

We will conduct a sequential explanatory mixed-methods study (QUAN -> qual). First, we will administer paper-based or electronic surveys during educational sessions, conferences and rounds to medical students, residents and physicians in ten countries, either in person or online. Following that, a qualitative inquiry, guided by the findings of the quantitative study and the principles of the interpretive description design, will inform an in-depth exploration of the predictive factors identified in the quantitative data analysis.

The Hamilton Integrated Research Ethics Board at McMaster University has approved this study (approval number 2024-17651). We will disseminate our findings in peer-reviewed publications and present results at conferences as oral and poster presentations.

Hospitalised patients nearing the end of life (EOL) often face complex treatment decisions, leading to potential conflicts among care teams, patients and families. Palliative care consultations may enhance decision-making processes, improve satisfaction and reduce unnecessary interventions. This systematic review will assess the impact of palliative care consultations on treatment decisions, family and patient satisfaction, and psychological outcomes in hospitalised adults.

We will include randomised controlled trials comparing palliative care consultations to standard care in hospitalised adults. The primary outcomes will include decisions to withhold or withdraw treatments, patient and family satisfaction with EOL decision-making, and psychological outcomes such as anxiety, depression and post-traumatic stress disorder. Secondary outcomes will include intensive care unit (ICU) and hospital length of stay, utilisation of potentially non-beneficial treatments, and the use of institutional policies or legal actions. Databases including MEDLINE, Embase, CINAHL, Cochrane CENTRAL and PsycINFO will be systematically searched from inception to September 2025. Two independent reviewers will screen studies and extract data using Covidence. Meta-analyses will use random-effects models to generate pooled estimates for primary and secondary outcomes. Risk of bias will be assessed using the Cochrane Risk of Bias 2 tool, and evidence certainty will be evaluated using the Grading of Recommendations Assessment, Development and Evaluation approach. Subgroup analyses will explore variations by ICU versus non-ICU settings, cancer versus non-cancer diagnoses and default versus clinician-initiated consultations.

Ethical approval is not required for this review. Findings will be disseminated through peer-reviewed publications and conference presentations.

CRD420250624190.

To explore barriers and facilitators to a good death in patients with respiratory disease when advanced respiratory support, including non-invasive ventilation (NIV) and continuous positive airway pressure (CPAP), is used. Specifically, we examined healthcare professionals’ perspectives on what constitutes a good death in this context, how treatment failure is recognised, how decisions to continue or withdraw therapy are made, and the impact of providing this care on staff.

Qualitative study using semistructured interviews and reflexive thematic analysis.

Secondary care services in a large UK National Health Service Trust, including acute medicine, general medicine, respiratory medicine and palliative care.

25 healthcare professionals (19 female, 6 male) from multidisciplinary backgrounds, including doctors, nurses and physiotherapists. Participants self-identified as experienced in the provision of NIV/CPAP at the end of life. Staff working primarily in intensive care units were excluded.

None.

Not applicable.

Healthcare professionals described the complexity of caring for patients dying while receiving or recently withdrawn from NIV/CPAP. Five interrelated themes were identified: beliefs around dying well, symptom management during active treatment, recognition of treatment failure, negotiated decision-making and the process of withdrawal. Staff reported tensions between providing active treatment and ensuring comfort, inconsistent practices regarding symptom control and withdrawal, and conflicts within multidisciplinary teams. Nurses highlighted hidden psychological and relational labour in supporting patients, while doctors often described delays in decision-making to align families with treatment withdrawal.

Caring for patients using NIV/CPAP at the end of life presents ethical, clinical and emotional challenges for staff, patients and families. Variation in practices and perspectives highlights the need for structured training, interdisciplinary approaches and greater recognition of the often hidden relational and emotional labour involved in this work, particularly among nursing colleagues. Further research should evaluate strategies to support consistent and compassionate withdrawal practices.

Most people who require palliative care reside in low- and middle-income countries, particularly those living in areas affected by geopolitical conflict such as Palestine. Given the potential impact of conflicts on the palliative care knowledge of healthcare providers, it is crucial to assess how it is affected by the recent political instability occurring in the area. This study aimed to assess the overall and domain-specific palliative knowledge among physicians and nurses and evaluate the factors associated with palliative care knowledge.

Cross-sectional multicentre study.

The study sample was recruited from eight hospitals in two districts in the West Bank, Palestine.

Physicians and nurses working in the following hospital departments were eligible for inclusion in the study: internal medicine/cardiology/nephrology, surgical department, intensive care unit/emergency department and oncology department. Among 227 physicians and nurses approached, 197 participated (response rate 87%), and all of them completed the study.

The palliative care knowledge test was used to assess the palliative care knowledge of study participants. Bivariate analysis and multiple binary logistic regression were used to evaluate associations with palliative care knowledge. A p value of less than 0.05 was considered statistically significant.

There was no significant difference between physicians and nurses in overall palliative care knowledge. Study participants scored poorly in all palliative care knowledge domains. However, physicians scored significantly higher in the ‘philosophy’ domain (p 0.035), while nurses scored significantly higher in the ‘psychiatric’ domain (p 0.009). Questions with the lowest rate of right answers were related to opioids and dyspnoea. Previous training in palliative care was significantly associated with palliative care knowledge (OR 2.529, 95% CI 1.267 to 5.049, p 0.009).

Physicians and nurses in conflict-affected, resource-limited settings had insufficient knowledge in all palliative care domains. The lowest knowledge scores were for the ‘dyspnoea’ and ‘opioid’ questions. Participants with previous training in palliative care had significantly more palliative care knowledge. National guidelines and comprehensive palliative care training programmes should be developed to facilitate palliative care delivery.

Approximately 53 million family caregivers (FCGs) support and provide home-based care for patients with chronic and life-limiting conditions. Caregiving at the end of life is an emotionally, cognitively and physically demanding role, and FCGs are often unpaid and receive little training. FCGs in remote, rural areas experience adverse social determinants of health (SDOHs), such as limited access to healthcare services and are often financially vulnerable, affecting their healthcare coverage, placing them at higher risk for poor emotional health. Adequate health literacy, a key SDOH, may be a protective factor. The purpose is to present the protocol of an explanatory sequential mixed-method study aiming to examine rural-dwelling FCGs’ emotional health, relationships among FCG characteristics (demographics, co-morbidities) and SDOH and health literacy as a potential mediator.

With 80% power to detect a mediation effect of at least 0.11 when the two-sided alpha is 0.05, an anticipated 108 adult rural FCGs who are providing palliative end-of-life care (PEOLC) will be recruited. Rigorous remote, digital- and community-based recruitment strategies will be employed to increase access to FCGs from under-represented rural communities. Self-report surveys include demographic and health characteristics, SDOH (health literacy, education level, employment status, annual income level, healthcare access and insurance) and anxiety/depressive symptoms. Descriptive statistics will be used to characterise the sample. Correlation analysis and one-way Analysis of variance (ANOVA) will be used to study the relationships between FCG characteristics, SDOH and anxiety/depressive symptoms. Hayes’ PROCESS Macro for IBM SPSS Statistics will be used to test mediation effects of health literacy between FCG characteristics/SDOH and anxiety/depressive symptoms. Indirect effects will be tested using bootstrapped CIs. Semistructured interviews will be conducted with a representative sample to elicit FCG perceptions relative to how SDOH affect their care provision and emotional health, then analysed using content analysis. Quantitative and qualitative strands will be examined and compared for convergence and divergence, then integrated for final interpretations.

Michigan State University’s Institutional Review Board has reviewed and approved the study. Written informed consent will be obtained from each participant. Study findings will be disseminated through publications in peer-reviewed journals and presentations at academic conferences.

Study outcomes will inform the role of SDOHs, particularly health literacy, for the development of interventions to emotionally support rural FCGs.

To identify and explain the challenges of effective pain management in patients with cancer in Iran.

A convergent mixed-methods study.

Oncology departments and palliative care units across multiple healthcare institutions in Iran.

Quantitative phase: 320 healthcare providers, including anaesthesiologists, general practitioners, oncologists, nurses and pharmacists, selected via convenience sampling. Qualitative phase: 10 stakeholders, including patients, caregivers, policy makers and clinicians.

Quantitative data were collected using a psychometrically validated 23-item questionnaire assessing knowledge, attitudes and perceived barriers to cancer pain management. Qualitative data were obtained through semistructured interviews and analysed using Graneheim and Lundman’s content analysis method with MaxQDA software. Integration was performed using a side-by-side approach.

Quantitative data showed that over 65% of providers did not routinely assess pain, and only 29.1% believed pharmacological treatments were effective. Qualitative analysis identified 13 barriers across three domains—professional, patient and organisational—spanning physical, psychological, social and spiritual dimensions. Integrated findings revealed consistent patterns of underassessment, legal and cultural resistance and lack of interdisciplinary collaboration. These converging challenges highlight the need for holistic, system-level reform.

The convergence of quantitative and qualitative data reveals a multilayered system of barriers, professional, patient-related and organisational—rooted in physical, psychological, social and spiritual dimensions. These interlinked challenges contribute to fragmented pain management and limited interdisciplinary coordination. Addressing them requires a holistic reform strategy that integrates structural, cultural and clinical solutions.

Spiritual well-being (SpWB) is a critical yet often underexplored component of holistic care for patients with advanced cancer. This study aimed to assess the SpWB and quality of life (QOL) levels and examine their correlation among patients receiving palliative care at a tertiary cancer centre in Kerala, India.

Institution-based cross-sectional observational study among patients with advanced cancer conducted between August 2023 and December 2024.

The outpatient department of a major tertiary-level, autonomous cancer centre under the Government of Kerala, India.

398 patients with advanced cancer aged 18 and above.

SpWB and QOL were measured using validated Malayalam versions of the Functional Assessment of Chronic Illness Therapy–Spiritual well-being Expanded Version and European Organisation for Research and Treatment of Cancer, Quality of Life Core 30 questionnaires, respectively. Data collection included patient self-reports or assistance by a medical social worker.

The median (IQR) age of participants was 59 (51–65) years; most were married (94.5%) and from an upper-lower socioeconomic background (55%). Hinduism was the predominant religion (67.1%). Almost all patients (99%) were aware of their diagnosis, but only 62.3% knew their prognosis. The median (IQR) SpWB score was 67.5 (57–76), significantly higher in females (p=0.02). The median (IQR) QOL score was 50 (41.7–66.7). SpWB was positively correlated with QOL (r=0.766, p

SpWB showed a strong positive correlation with QOL among patients with advanced cancer. Enhancing SpWB may play a pivotal role in improving overall QOL in palliative care settings.

The HOPSCOTCH study ‘Helping Optimise Primary Care Support During Transition From Children’s Hospice Care’ aims to develop a toolbox to enable engagement of primary care services in the care of young people with life-limiting conditions (LLC) with a specific focus on the point of transition from children’s hospice services.

Individual interviews will be held with young people with LLC, their families and healthcare professionals (HCPs). In alignment with Experience Based Co-Design (EBCD) methodology, extracts of film and audio from young people and family interviews will be combined to professionally produce a ‘catalyst film’ highlighting key points and experiences before, during and after the transition from children’s hospice care. Role-specific workshops will be held with young people with LLC, their families and HCPs working in primary care, children’s hospices and adult hospice services. The catalyst film will be used in feedback workshops to prompt prioritisation of key issues to take forward into toolbox development in a shared young people, family and HCP workshop. A documentary analysis of resources currently used to support transition and communication between care settings will support contextual understanding of the transition process. Young people, parents and professionals have shaped and continue to have influence over the study delivery as advisors alongside a multidisciplinary steering committee.

The study design has been guided by the UK Medical Research Council complex intervention framework. Intervention development draws on the principles of EBCD and is theoretically driven by the Behaviour Change Wheel.

The study is registered with the UK’s Clinical Study Registry (ISCTRN75964234).

Ethical approval was obtained from Wales 3 ethics board on 2 July 2025 (IRAS ID 334486). This study will include ongoing dissemination and knowledge transfer to key audiences (young people, parents, service providers, commissioners) via publications, national bodies, knowledge exchange events, web-based platforms, social media and clinical/academic forums.

Advance care planning (ACP) can support individuals to express their autonomy in the decision-making process for future care. Traditional ACP training for healthcare providers faces significant challenges related to interactivity, accessibility, scalability and sustainability. Cutting-edge generative artificial intelligence (AI) holds promise in enabling intelligent and interactive chatbots for ACP. The present protocol outlines the development and evaluation of a large language model (LLM)-based ACP chatbot for healthcare providers.

The development of the LLM-based ACP chatbot will follow four stages: construction of dialogue data sets, fine-tuning, multi-LLM orchestration and ablation studies. A randomised controlled trial will then evaluate the LLM-based ACP chatbot’s effectiveness in enhancing ACP competence among healthcare providers. A total of 66 healthcare providers will be recruited from China and randomly assigned (1:1) to either: (1) The LLM-based ACP chatbot intervention or (2) An ACP knowledge manual. The primary outcome will be ACP competence, while secondary outcomes will include (1) ACP knowledge, (2) Attitudes/beliefs, (3) Practice willingness, (4) Readiness, (5) Self-efficacy, (6) Processes of change, and (7) Decisional balance. Both primary and secondary outcomes will be assessed to evaluate the immediate impact (postintervention) and short-term impact (3-month follow-up and 6-month follow-up) of the chatbot on ACP.

The research was approved by the Ethical Review Board, Xiangya School of Nursing, Central South University (E202442). Study modifications will be discussed among the research team members until a consensus is reached. Amendments reflecting study modifications will be submitted for institutional review board approval at all sites, updated on the clinical trial registry, and fully detailed and explained in the manuscript reporting the results of the study. All participants will provide written informed consent. The study will be conducted according to the principles outlined in the Declaration of Helsinki. The results of this study will be submitted for publication in peer-reviewed journals and presented at (inter)national conferences.

ChiCTR2400091022