BMC Palliative Care[JOURNAL]
Sun
200 papers
Challenges faced by nurses and their stress of conscience levels in providing palliative care: a cross-sectional descriptive study.
Işik MT, Can-Özdemi̇r R, Çokan-Dönmez Ç
BMC Palliat Care · 2026 Apr · PMID 41981596 · Full text
OBJECTIVE: To reveal the challenges faced by nurses providing palliative care to hospitalized patients and to determine their levels of stress of conscience while delivering palliative care. METHOD: In this cross-section...
OBJECTIVE: To reveal the challenges faced by nurses providing palliative care to hospitalized patients and to determine their levels of stress of conscience while delivering palliative care. METHOD: In this cross-sectional and descriptive study, a total of 143 nurses providing palliative care in the intensive care and oncology units of a university hospital were included in the study. The Nurses Descriptive Characteristics Form, Palliative Care Difficulties Scale and Stress of Conscience Questionnaire were used to collect the data. In the analysis of the data, arithmetic mean, Cronbach’s alpha, Independent Samples t-test, Analysis of Variance test, Mann Whitney test, Kruskal-Wallis test, Spearman’s Correlation were used. RESULTS: The mean age of the participants was 31.26 ± 6.88 years. While 25.9% of them defined the concept of conscience as “compassion”, 21.0% defined it as “empathy”. The mean scores they obtained from the Stress of Conscience Questionnaire and the Palliative Care Difficulties Scale were 86.8 ± 48.7 and 42.6 ± 8.3, respectively. There was no statistically significant relationship between the scores they obtained from the overall the Palliative Care Difficulties Scale and the Stress of Conscience Questionnaire (p > 0.05). The relationship between the participants’ the Palliative Care Difficulties Scale scores and the variables such as sex, and the department they work in was statistically significant (p ≤ 0.05). CONCLUSION: The results of this study revealed that nurses providing palliative care should be supported, and that being female and having a postgraduate education positively affected conscience. It may be recommended to focus on ethical issues related to palliative care in undergraduate and graduate education. RELEVANCE TO CLINICAL PRACTICE: Nurses providing palliative care in areas such as intensive care and oncology encounter numerous ethical issues and experience moral distress while maintaining effective communication with their patients and ensuring continuity of care. Supporting these nurses through national and international policies will positively impact the quality of care.
Caregiving needs of patients with terminal cancer and their families: a field study of family meetings.
Yu F, He C, Yang J … +3 more , Gao Q, Wu X, Sun L
BMC Palliat Care · 2026 Apr · PMID 41975420 · Full text
BACKGROUND: Family meetings are critical communication and decision-making junctures for patients with terminal cancer and their families during the palliative care process. However, within the Chinese cultural context,...
BACKGROUND: Family meetings are critical communication and decision-making junctures for patients with terminal cancer and their families during the palliative care process. However, within the Chinese cultural context, the multifaceted functions of family meetings, their dynamic negotiation processes, and their role in meeting multilevel needs remain underexplored. This study guided by family systems theory, aimed to investigate how the care needs of terminal cancer patients and their families are expressed, negotiated, and constructed within the specific context of family meetings. METHODS: Employing a qualitative field research methodology characterized by descriptive, focused, and selective observation, this study was conducted at a leading tumor center in Central China. Purposive sampling was used to recruit 14 families affected by terminal cancer, consisting of 14 patients with terminal cancer and 34 family members. Data were systematically recorded during family meetings, with a focus on the expression of needs. Content analysis was applied to observational records, interview transcripts, and experiential notes to perform an in-depth analysis. RESULTS: This study’s content analysis ultimately yielded 4 core themes and 13 subthemes, illuminating the process through which care needs are expressed, negotiated, and constructed within family meetings: (1) The comfort needs of the physical and mental aspects are centered on reducing chronic anxiety; (2) The balancing needs of individuals and families with the goal of enhancing self-differentiation; (3) The family and medical care aggregation needs based on the strategy of stabilizing the triangular relationship; (4) The continuation of life’s values needs of meeting a closed-loop family system. CONCLUSION: Within the Chinese cultural context, family meetings for patients with terminal cancer are a multidimensional and dynamically evolving cultural practice. The requirements of patients with terminal cancer and their families emerge from worries regarding physiological suffering, advance to relieving chronic anxiety, promote self-differentiation, and strengthen the familial triangle, resulting in the symbolic continuation of life’s value. These findings provide significant guidance for healthcare professionals in developing culturally adaptive and humanistic intervention strategies.
Pathways to community palliative spiritual care volunteering: a grounded theory study.
Yeh HC, Tsai JS, Peng JK … +5 more , Bhikkhuni TT, Bhikkhuni DC, Wang Y, Wu CF, Tang CC
BMC Palliat Care · 2026 Apr · PMID 41975377 · Full text
BACKGROUND: As the world’s population ages and life expectancy increases, the prevalence of chronic diseases and cancer has risen, increasing the demand for community palliative care. While community palliative care reli...
BACKGROUND: As the world’s population ages and life expectancy increases, the prevalence of chronic diseases and cancer has risen, increasing the demand for community palliative care. While community palliative care relies on teamwork, volunteers play a crucial role in connecting medical teams with patients’ families and the community. However, challenges in recruiting and managing palliative volunteer teams remain largely unexplored. Therefore, the aim of this study was to explore the motivations and process of engaging in community palliative spiritual care as a volunteer. METHODS: This study adopted a grounded theory approach, recruiting adults aged 18 and above from a community hospice spiritual care training center in Taiwan. Eligible participants had at least one year of volunteer experience and were fluent in Mandarin or Taiwanese. Data collection and analysis were conducted according to grounded theory methodology. RESULTS: The study explored volunteers’ motivations and experiences, from April 2023 to May 2024, 21 in-depth interviews were conducted. Participants had a mean age of 59.2 (SD = 8.8), with 95.2% female and 90.5% being current volunteers. The findings identified one overarching theme: “Navigating inner turmoil and transforming through the suffering of others.” The findings revealed a journey of self-reflection, preparation, overcoming challenges, and personal transformation. Life transitions and loss inspire individuals to serve; whereas, training and practice shape their roles. Navigating emotional and practical challenges fosters volunteers’ spiritual growth. CONCLUSIONS: Volunteers’ life transitions and significant personal experiences often catalyze engagement in community-based palliative spiritual care. Through altruistic volunteering and compassionate presence, they extend compassionate care beyond formal healthcare systems. This engagement strengthens public health, community-based approaches to palliative care and fosters communities prepared to provide empathy, support, and end-of-life care. Findings inform strategies to sustain volunteer commitment and promote the integration of volunteers into palliative care services.
Exploring strategies and approaches to improve end-of-life care services for people experiencing homelessness: a systematic review and meta-synthesis of qualitative studies.
Tian L, Guo L, Jiang Z … +3 more , Zhu X, Luo M, Chen Z
BMC Palliat Care · 2026 Apr · PMID 41975373 · Full text
BACKGROUND: As a socially disadvantaged group, people experiencing homelessness face numerous difficulties and challenges in accessing end-of-life (EOL) care. Existing strategies often fail to meet their needs, with evid...
BACKGROUND: As a socially disadvantaged group, people experiencing homelessness face numerous difficulties and challenges in accessing end-of-life (EOL) care. Existing strategies often fail to meet their needs, with evident deficiencies in workforce allocation, financial support, and service coverage, as well as a lack of consideration for their unique circumstances. OBJECTIVE: This study synthesizes published qualitative research to explore the expectations and needs of people experiencing homelessness in EOL care, as well as the perspectives of service providers. Its aim is to identify effective strategies and approaches to improve EOL care services for this population, ultimately promoting more targeted and higher-quality care. METHODS: We systematically searched PubMed, Web of Science, CINAHL, Embase, Cochrane Library, and CNKI from inception to November 2024 for primary qualitative studies addressing the EOL needs and service challenges of homeless populations. Using inductive thematic analysis in conjunction with Bronfenbrenner’s ecological systems theory, we examined systemic barriers and potential solutions across the microsystem, mesosystem, exosystem, macrosystem, and chronosystems, providing a critical framework for building an inclusive EOL care ecosystem for people experiencing homelessness. RESULTS: A total of 20 publications representing 16 independent studies were included. The synthesis yielded four major findings: People experiencing homelessness’ EOL Dilemmas and Attitudes, EOL care from the perspective of service providers, Challenges and Barriers to EOL Care, Strategies and Recommendations for Improving EOL Care Furthermore, by applying Bronfenbrenner’s ecological systems theory, these findings were integrated into a cross-system, multi-level analytical framework. CONCLUSION: This study systematically synthesized qualitative evidence on EOL care for people experiencing homelessness, revealing the multifaceted challenges and profound structural barriers they face at the EOL. Our synthesis indicates that the lack of trust and the need for dignity permeate all systemic levels, from the micro to the macro, in EOL care for this population. Reliance on traditional biomedical models alone may not fully address their complex needs. Future efforts should be further advanced through cultural sensitivity, cross-sectoral collaboration, and service evaluation, in order to build an inclusive, respectful, and diverse EOL care system that ensures equitable and dignified care for people experiencing homelessness.
The mediating role of death anxiety between meaning in life and spiritual care competence among Chinese nursing interns: implications for healthcare training.
Zhang Z, Yang L, Zong X … +5 more , Kardiyudiani NK, Han L, Xie R, Zhang R, Ma C
BMC Palliat Care · 2026 Apr · PMID 41975334 · Full text
BACKGROUND: In Chinese culture, discussions about death are often considered taboo, which may intensify death anxiety among nursing interns when facing end-of-life situations. Death anxiety may influence their ability to...
BACKGROUND: In Chinese culture, discussions about death are often considered taboo, which may intensify death anxiety among nursing interns when facing end-of-life situations. Death anxiety may influence their ability to provide spiritual care, yet the underlying mechanisms remain unclear. AIM: This study aimed to examine the relationship between meaning in life, death anxiety, and spiritual care competence among nursing interns, and to explore the mediating role of death anxiety. METHODS: This was a cross-sectional study. A cross-sectional survey was conducted among 737 final-year vocational nursing interns from a medical college in China using whole-cohort sampling. Data were analyzed using SPSS 25.0, including t-tests, ANOVA, Pearson correlations, and mediation analysis via Hayes’ process plug-in. RESULTS: Significant associations were observed among meaning in life, death anxiety, and spiritual care competence. Meaning in life, was positively correlated with spiritual care competence (r = 0.520, p < 0.001) and weakly negatively correlated with death anxiety (r = -0.077, p = 0.036). Death anxiety was negatively correlated with spiritual care competence (r = -0.196, p < 0.001). Mediation analysis showed that death anxiety partially mediated the relationship between meaning in life, and spiritual care competence, with an indirect effect of 0.019 (95% CI: 0.001–0.041), accounting for 2.24% of the total effect. CONCLUSION: Death anxiety partially mediated the association between meaning in life and spiritual care competence, with a small but statistically significant indirect effect. These findings suggest that addressing death-related concerns and fostering meaning construction within nursing education may support the development of spiritual care competence, consistent with theoretical perspectives emphasizing the buffering role of existential resources.
End-of-life communication in the context of MAID: a qualitative study on the perspectives and preferences of individuals living with MS.
Brown J, Ashraf MN, Thorpe L … +4 more , Herter L, Knox KB, Levin MC, Poliakov I
BMC Palliat Care · 2026 Apr · PMID 41965586 · Full text
BACKGROUND: Saskatchewan, Canada, has one of the highest prevalence rates for multiple sclerosis (MS) in the world, and as treatment options evolve, individuals living with MS (ILMS) are living longer. Medical assistance...
BACKGROUND: Saskatchewan, Canada, has one of the highest prevalence rates for multiple sclerosis (MS) in the world, and as treatment options evolve, individuals living with MS (ILMS) are living longer. Medical assistance in dying (MAID) has been a legal end-of-life (EOL) care option in Canada since 2016, and some individuals living with MS are choosing this option as they age and/or their disease progresses. Given the complexity of MS, including the risk of fluctuating capacity in end-of-life decision-making, ongoing communication about EOL options is essential. However, sparse information is available regarding individuals’ perspectives on communication when discussing end-of-life care, particularly when MAID is a legally available option. This project addressed this gap. METHODS: A qualitative research project using the Interpretive Description methodology was completed. The data set included twenty-seven interviews with individuals living with MS and healthcare professionals, participant contextual and demographic data (including the Multiple Sclerosis Impact Scale-29 and the Patient-Determined Disease Steps), interviewer field notes, and reflective content. Descriptive statistical analysis and inductive reflexive thematic analysis were completed. RESULTS: Participants identified the importance of (1) Forging trust, (2) Framing information, (3) Facilitating conversation, (4) Balancing timing, and (5) Navigating misinformation when discussing end-of-life care when MAID is a legally available option. Participants emphasized the need for a trusted relationship with their healthcare professionals to discuss EOL options without hesitation and fear. They also highlighted that end-of-life care information should be inclusive of all options and made available in various formats. They acknowledged that these conversations are complex and sometimes avoided, and how, after overcoming their fear and hesitancy, they felt gratitude or relief in being able to talk about end-of-life issues. Participants also shared that the most effective decision-making time occurs during periods of illness stability. Participants identified a need for reliable resources to address misinformation and facilitate informed decision-making. CONCLUSIONS: The findings support end-of-life care planning throughout the MS care trajectory. Through relationships, access to accurate and inclusive information on EOL and conversations during periods of relative illness stability, an informed and person-centred decision-making process can be facilitated.
Evaluating quality of palliative care from the perspective of healthcare professionals in different care settings: development of the quality of palliative care questionnaire - staff.
Werkander Harstäde C, Alvariza A, Östlund U … +4 more , Benzein E, Lundström S, Wenemark M, Årestedt K
BMC Palliat Care · 2026 Apr · PMID 41963933 · Full text
BACKGROUND AND AIM: Palliative care is provided at different care settings by different professionals, making management and organisation of services crucial. A comprehensive tool to systematically evaluate the quality o...
BACKGROUND AND AIM: Palliative care is provided at different care settings by different professionals, making management and organisation of services crucial. A comprehensive tool to systematically evaluate the quality of palliative care and identify potential areas for organizational improvement is highly warranted. The aim was to develop and examine the content validity of a questionnaire evaluating quality of palliative care from the perspectives of healthcare professionals in different care settings: the Quality of Palliative Care Questionnaire – Staff (QPCQ-S). METHODS: This methodological study included booth qualitative and quantitative methods. The QPCQ-S was developed from existing questionnaires. Questions were modified to represent broad perspectives of palliative care before being reviewed by an expert group consisting of researchers in palliative care. A preliminary version was reviewed by healthcare professionals (n = 16), and the response options were examined, based on responses from 98 healthcare professionals who had participated in a development project. Cognitive interviews (n = 13) were performed with healthcare professionals. Finally, the questionnaire was evaluated by 421 healthcare professionals within a nursing home context. RESULTS: Convergent validity was supported by the expert and advisory groups, and cognitive interviews. Problems with ceiling and floor effects was demonstrated for some items, which resulted in a more differentiated response scale for these items. A majority of the respondents reported the questions as important or fairly important (99.3%), and that the questions had provided them with the opportunity to give a true picture of palliative care (78.9%). However, a majority reported that the questions were difficult or fairly difficult to answer (64.0%), significantly more among nurse assistants compared to nurses, physicians and other professional with academic education (p = 0.031). CONCLUSION: The QPCQ-S showed good content validity, and the questions were reported important, giving a true picture of palliative care. Careful preparation is needed considering by whom and in what context the CPCQ-S are best used for evaluation of palliative care.
Development of a personalized, modular intervention to promote dignity, meaning and mindfulness in palliative patients in a swiss acute-care hospital.
Klatte K, Seiler A, Schweighoffer R … +8 more , Meinlschmidt G, Walter S, Mai SS, Jenewein J, Chochinov HM, Rodin G, Schaefert R, Eckstein S
BMC Palliat Care · 2026 Apr · PMID 41963902 · Full text
BACKGROUND: Patients with serious, life-limiting diseases often experience substantial emotional and spiritual distress, death anxiety, depressive symptoms, and loss of dignity. Fostering dignity and meaning and relievin...
BACKGROUND: Patients with serious, life-limiting diseases often experience substantial emotional and spiritual distress, death anxiety, depressive symptoms, and loss of dignity. Fostering dignity and meaning and relieving psychological distress have been identified as core objectives of palliative care. To address the individual needs of palliative patients, a personalized, modular intervention approach may be advantageous. AIM: Based on previous work, we aimed to develop a personalized, modular approach to improve dignity, meaning, and mindfulness in palliative care patients. METHODS: An expert panel of international specialists in palliative care, dignity therapy, psychotherapy, clinical psychology, psychiatry, and psychosomatic medicine was convened to develop the proposed modular approach. Intervention development is described following the “Template for Intervention Description and Replication” TIDieR guidance and is based on results from a literature search on previous work on dignity, meaning-centered therapy, and mindfulness-based interventions, as well as on in-depth needs assessments. RESULTS: Based on the expert consensus, a three-modular approach was formulated, with evidence-based modules providing Dignity Therapy, Managing Cancer and Living Meaningfully (CALM) therapy, and mindfulness-based interventions, each addressing complementary aspects. CONCLUSION: A personalized, modular intervention to promote dignity, meaning, and mindfulness in palliative care patients was developed by a panel of international experts using existing dignity-fostering end-of-life interventions. The resulting modular approach was designed with the aim to address patients’ individual needs.
Factors influencing death anxiety among patients with end-stage chronic diseases: a scoping review.
Ma Y, Zhang X, Guo L … +4 more , Li Y, Shi J, Lang Y, Sun W
BMC Palliat Care · 2026 Apr · PMID 41957647 · Full text
AIMS: To systematically identify and map the influencing factors, assessment tools, and interventions for death anxiety among patients with end-stage chronic diseases. DESIGN: A scoping review conducted in accordance wit...
AIMS: To systematically identify and map the influencing factors, assessment tools, and interventions for death anxiety among patients with end-stage chronic diseases. DESIGN: A scoping review conducted in accordance with the JBI Global methodology and reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. DATA SOURCES: A systematic search was conducted across nine databases: CNKI, Wanfang, VIP, CBM, PubMed, CINAHL, Embase, Web of Science, and the Cochrane Library. The search covered the period from database inception to December 15, 2025. REVIEW METHODS: Guided by the Population, Concept, and Context (PCC) framework, two researchers independently performed literature screening, data extraction, and quality appraisal using JBI Global Critical Appraisal Tools. RESULTS: Sixty-eight original studies were included. The prevalence of high death anxiety among terminal patients ranged from 25 to 80% (mean = 53.30%). Influencing factors were identified across demographic, socioeconomic, disease-related, and psycho-behavioral dimensions. Commonly used assessment tools included the Templer Death Anxiety Scale (T-DAS), the Death and Dying Distress Scale (DADDS), and the Death Anxiety Questionnaire (DAQ). Current interventions primarily involve Acceptance and Commitment Therapy (ACT), Virtual Reality (VR)-integrated support, Life Review Therapy, Managing Cancer and Living Meaningfully (CALM) therapy, and Cognitive Behavioral Therapy (CBT). CONCLUSION: Death anxiety is highly prevalent among patients with end-stage chronic diseases and is negatively correlated with quality of life. There is a critical need to implement culturally adapted measurement tools and disease-specific assessments. IMPACT: This review highlights the necessity of shifting the care paradigm from "cure-centered" to "dignity-centered". Nursing professionals should prioritize a systematic "early screening–precise assessment–dyadic intervention" approach, focusing on "patient-caregiver" dyadic models to alleviate the fear of death and promote end-of-life quality. NO PATIENT OR PUBLIC CONTRIBUTION: As this study is a scoping review based on the synthesis of publicly available literature, no patients, service users, caregivers, or members of the public were involved in the design, conduct, analysis, interpretation, or preparation of this manuscript.
"Family-as-Root" and "Family-Centeredness" in hospice care: a concept analysis and implications for nursing practice.
Yan C, Ji A, Li Y
BMC Palliat Care · 2026 Apr · PMID 41957595 · Full text
BACKGROUND: Families are widely recognised as central actors in hospice and palliative care, and “family-centered care” has become a dominant practice model. However, the ontological and axiological status of the family...
BACKGROUND: Families are widely recognised as central actors in hospice and palliative care, and “family-centered care” has become a dominant practice model. However, the ontological and axiological status of the family in many cultural contexts—particularly East Asian Confucian traditions—extends far beyond the functional roles usually described by family-centeredness. This study conceptualizes and clarifies “Family-as-Root” - a culturally grounded, ontological-axiological orientation to family that is widely recognizable in Chinese contexts but remains under-theorized in international hospice literature - and distinguishes it from, while relating it to, “Family-Centeredness” in hospice care. METHODS: We conducted a concept analysis using Walker and Avant’s eight-step method, treating “Family-as-Root” as an analytical term developed to capture conceptual gaps not fully addressed by existing family-centered paradigms. A systematic literature search of major English- and Chinese-language databases (PubMed, PsycINFO, CINAHL, Web of Science, CNKI, and Wanfang Data) was undertaken from inception to August 2025. The corpus included theoretical, empirical and review articles addressing families in hospice or palliative care, end-of-life decision-making, and family-related cultural values. Through iterative reading and coding, we identified defining attributes, antecedents and consequences of “Family-as-Root” and “Family-Centeredness”, and constructed model, borderline and contrary cases to illustrate their manifestations in practice. RESULTS: The analysis showed that “Family-as-Root” is an ontological–axiological construct grounded in a view of the person as inherently embedded in intergenerational family relationships. It emphasises the family as the primary locus of identity, value transmission, moral obligation and meaning-making in serious illness and dying. By contrast, “Family-Centeredness” is a functional care paradigm that focuses on collaborative decision-making, information sharing, and role negotiation between professionals, patients and family members within existing healthcare structures. In hospice care, these two concepts intersect but are not interchangeable: Family-as-Root shapes how patients and relatives understand suffering, good death and acceptable choices, while Family-Centeredness structures how professionals engage families in care processes. Recognising this distinction highlights expanded nursing roles as interpreters of cultural values, facilitators of intra-family dialogue, and safeguards of patients’ and families’ sense of meaning. CONCLUSIONS: “Family-as-Root” and “Family-Centeredness” represent two interrelated but conceptually distinct dimensions of family involvement in hospice care—one ontological–axiological, the other functional–interactional. Differentiating these concepts can support the design of culturally sensitive hospice models, guide assessment of family needs and resources, and inform the development of nursing interventions and measurement tools that more adequately reflect diverse family cultures in China and other settings.
Ethical challenges in end-of-life cancer care: a qualitative study among health-care providers in Iran.
Talebi R, Ramezanzade Tabriz E, Roshandel G … +2 more , Mohammadi R, Aledavood SA
BMC Palliat Care · 2026 Apr · PMID 41943048 · Full text
BACKGROUND: Cancer is one of the most critical and ethically challenging health issues worldwide. Providing end-of-life care to cancer patients often places health-care providers in morally complex situations, where prof...
BACKGROUND: Cancer is one of the most critical and ethically challenging health issues worldwide. Providing end-of-life care to cancer patients often places health-care providers in morally complex situations, where professional duties, cultural expectations, and legal–religious mandates intersect. Despite growing global interest in end-of-life ethics, there is limited understanding of how these challenges are experienced in culturally specific contexts such as Iran. This study aimed to explore the ethical challenges faced by health-care providers caring for cancer patients during the end-of-life stage. METHODS: This study employed a qualitative conventional content analysis approach. Data were collected between July 2024 and June 2025 in oncology and palliative care centers affiliated with Mashhad University of Medical Sciences. Fourteen participants—including physicians, nurses, psychologists, and psychiatrists—were selected through purposeful sampling with maximum variation. Data were gathered via semi-structured, in-depth interviews, audio-recorded, transcribed verbatim, and analyzed inductively following the framework of Elo and Kyngäs (2008). Rigor and trustworthiness were ensured using Lincoln and Guba’s criteria of credibility, dependability, confirmability, and transferability. RESULTS: Analysis yielded 237 initial codes, grouped into 14 categories, 6 sub-themes, and 3 themes: Deliberately Avoiding Telling the Truth, Decision-Making Immersed in Distress and Doubt, and Absence of Purposeful Coherence in the End-of-Life Care Trajectory. These findings illustrate how ethical practice in end-of-life care is shaped by the interplay of individual emotions, institutional limitations, and sociocultural norms. CONCLUSION: End-of-life care for cancer patients in Iran is morally demanding and requires ethical, emotional, and institutional support for health-care providers. Reform efforts should include developing national ethical guidelines, establishing hospital ethics committees, enhancing communication and ethics training, and promoting cultural openness toward death and dying. These measures can foster compassionate, patient-centered, and ethically coherent care at the end of life.
Health care assistants in out of hours community palliative care: multiple qualitative organisational case studies.
Hasson F, McIlfatrick S, Payne S … +5 more , Fee A, Slater P, Shannon C, Finlay DA, McConnell T
BMC Palliat Care · 2026 Apr · PMID 41942978 · Full text
BACKGROUND: Globally, the role, title and preparation of the unregulated worker is unstandardized, yet increasing evidence suggests they play an important role in the provision of palliative care. In the United Kingdom,...
BACKGROUND: Globally, the role, title and preparation of the unregulated worker is unstandardized, yet increasing evidence suggests they play an important role in the provision of palliative care. In the United Kingdom, a Health Care Assistant (HCA) is an unregulated healthcare worker who provides support to patients under the supervision of registered professionals across clinical settings. Whilst the provision of hospice out-of-hours (OOH) community palliative care is considered a key priority internationally; little is known about the role and contribution of the HCA in the provision of such care. AIM: This study aimed to understand the HCA’s role, responsibilities, and contribution to out-of-hours community palliative care. METHODS: An organisational qualitative case study approach was adopted, studying six out-of-hours palliative care service models across the UK. Data collection used interviews from multiple perspectives (carers, managers, specialist nurses, and HCAs). In total, 59 semi-structured interviews were held between 2021 and 2022. Framework analysis was adopted to analyse the interviews. RESULTS: Two overarching themes were identified, relating to service and role complexity and impact of the HCA within OOH community palliative care. Both illustrate the variable environment of OOH community palliative care within which the role of the Health Care Assistants operates. Health Care Assistants were found to provide care for the dying patient and psychosocial support for wider family members. They were often the first to detect changes in patient conditions and played a key role, with recognising, responding and escalating care. Participants believed this helped to contribute to patients remaining in the home environment. CONCLUSION: Understanding both the nature of out of hours palliative care delivery and the work delivered by Health Care Assistants, is key to developing organisational structures that support patient care. Further studies to better understand how modification of these factors can be used to enhance care delivery and the effectiveness of the Health Care Assistants role in palliative care are warranted given the limited evidence base.
Building a presence: implementation strategies used to expand palliative care services across six diverse health systems in a longitudinal mixed methods study.
Mui HZ, Holdsworth LM, Lorenz KA … +1 more , Winget M
BMC Palliat Care · 2026 Apr · PMID 41923249 · Full text
BACKGROUND: Despite the need to increase access to palliative care for aging populations, there is limited research on effective strategies for palliative care service implementation. Identifying implementation strategie...
BACKGROUND: Despite the need to increase access to palliative care for aging populations, there is limited research on effective strategies for palliative care service implementation. Identifying implementation strategies that support the integration of services in different clinical settings is a necessary step for the efficient deployment of resources to improve outcomes. This study explores the implementation strategies used by six diverse California health systems to expand palliative care services, and the relationship between strategies and implementation outcomes and reach. METHODS: A longitudinal mixed methods study utilizing document review, key informant interviews, and program data to assess implementation and effectiveness was conducted using a convergent parallel design. A deductive content analysis and matrix analysis using the Expert Recommendations for Implementing Change (ERIC) framework to identify and compare strategies across sites was completed, along with a thematic analysis of the relationship between strategies and reach, feasibility, acceptability, adoption, and sustainability. RESULTS: In total, 33 of the 73 discrete ERIC strategies were identified, spanning all nine strategy domains. Sites used between 11 and 23 implementation strategies for expanding palliative care programs. All six sites utilized financial strategies, evaluative and iterative strategies, supported clinicians, developed stakeholder interrelationships, and trained and educated stakeholders. We identified four themes that supported outcomes: (1) establishing and sustaining a trained workforce, particularly creating new clinical teams with physician leadership made service provision feasible and fostered acceptance and adoption; (2) identifying cases was important for referrals; (3) engaging providers through relationship development and education was crucial for acceptability, adoption and sustainability; and (4) involving organizational leadership, specifically active and enduring executive sponsorship, aided feasibility and sustainability. CONCLUSIONS: Implementation strategies for expanding palliative care services focused on building a presence by establishing a trained workforce to provide the service, identifying cases and engaging providers to increase and sustain acceptability and adoption, involving organizational leadership for feasibility and sustainment, and securing financial support to feasibly launch the service. This study compares how different implementation strategies were used in different settings, and the impact. Palliative care programs looking to expand services should focus on these core strategies to maximize efforts, and reach more patients.
A safety risk assessment checklist for personalized exercise as early supportive care in breast cancer patients undergoing chemotherapy: a modified Delphi consensus study.
Du X, Wei H, He W … +1 more , Song Y
BMC Palliat Care · 2026 Apr · PMID 41923241 · Full text
BACKGROUND: Exercise is an effective non-pharmacological intervention to alleviate the high symptom burden and mitigate declines in physical function and quality of life for breast cancer patients undergoing chemotherapy...
BACKGROUND: Exercise is an effective non-pharmacological intervention to alleviate the high symptom burden and mitigate declines in physical function and quality of life for breast cancer patients undergoing chemotherapy. Its integration into routine supportive care is challenged by clinicians’ uncertainty in assessing dynamic, treatment-specific risks. This study aimed to develop a consensus-based safety assessment tool to facilitate the safe implementation of exercise as part of individualized supportive care. METHODS: A multi-method, two-phase study was conducted (scoping review followed by Delphi consensus, rather than a mixed-methods design, as the phases were conducted sequentially without formal integration of qualitative and quantitative data). First, a preliminary checklist was drafted via a structured scoping review of guidelines, literature, and existing tools (2012–2025). Second, a three-round modified online Delphi consensus process was undertaken with a multidisciplinary panel of 20 experts (clinical oncology, oncology nursing, exercise physiology, physical therapy). Consensus was defined a priori as ≥ 80% agreement on relevance, with a median ≥ 4.0 on a 5-point Likert scale. Items were revised iteratively based on quantitative ratings and qualitative feedback. RESULTS: All panelists (100%) completed all rounds. Final consensus was achieved on a 25-item checklist, structured into four domains: (1) Medical & Treatment-Related Factors (e.g., neutropenia, timing post-infusion), (2) Symptom Burden (e.g., severe fatigue, pain), (3) Functional & Mobility Considerations (e.g., neuropathy, balance issues), and (4) Patient-Specific Context (e.g., comorbidities, anxiety). A novel risk stratification guide translates checklist findings into a three-tiered decision pathway: “Red Light” (defer exercise, consult oncology/supportive care team), “Yellow Light” (proceed with tailored modifications), and “Green Light” (proceed with personalized prescription). This provides a clear framework for clinical decision-making. CONCLUSIONS: This Delphi study establishes a multidisciplinary expert consensus on a pragmatic safety assessment checklist and decision pathway. The tool is designed to empower oncology and supportive care clinicians, particularly nurses, in integrating personalized exercise into symptom management plans safely. By standardizing risk evaluation, it addresses a key barrier to implementing exercise as supportive care and may enhance patient-clinician communication. The present study establishes content validity—the essential first step in tool development. Following the MRC framework for complex interventions, the next phases will involve: (1) a pilot feasibility study to establish administration protocols, assess acceptability, and refine items; (2) a prospective implementation study to evaluate impact on clinical decision-making and patient outcomes. Future research must also validate its feasibility and impact on symptom outcomes and quality of life, and explore its adaptation for patients with advanced disease, with explicit involvement of palliative care specialists.
Criteria for referral to a hospital palliative care team in a cancer setting: a Delphi study of oncologists.
Chanana G, Pruthi M, Salins N … +1 more , Arora R
BMC Palliat Care · 2026 Apr · PMID 41923095 · Full text
BACKGROUND: Providing palliative care alongside cancer treatments enhances the quality of life and satisfaction with care for patients with cancer and their families. Determining the timing of referral can often be chall...
BACKGROUND: Providing palliative care alongside cancer treatments enhances the quality of life and satisfaction with care for patients with cancer and their families. Determining the timing of referral can often be challenging, as oncologists typically make these decisions. We conducted a Delphi study to establish criteria for referring patients to hospital palliative care teams (HPCT). METHODS: Eighty-five oncologists were presented with 22 criteria developed from literature synthesis, categorised into seven domains, for referral to HPCT. Consensus development was predetermined, with a score of ≥ 7, as agreed upon by over 80% of the participants. RESULTS: In the first round, 63 out of 85 participants (74%) responded, and in the second round, 41 out of 63 (65%) responded. During the initial round, consensus was reached on 14 out of 22 statements. Six statements were dropped, and two were revised for the next round. The final 14 criteria for HPCT referral were consolidated into ten criteria across five domains: (1) Cancer-related (stage 4 cancer, life expectancy of less than six months), (2) Treatment-related (failed two or more lines of treatment), (3) Symptom-related (ECOG ≥ 3, multiple symptoms including pain and comorbidities affecting patient quality of life, with scores of four or higher on the distress thermometer), (4) Patient preferences (requested palliative care, refused cancer-directed treatment, requested limitation of life-sustaining treatment), and (5) End-of-life care (perceived need for end-of-life care planning). CONCLUSION: Developing a palliative care referral criterion provides a structured foundation for identifying cancer patients who might benefit from HPCT referral. Additional empirical validation is required to improve its clinical relevance and outcomes.
Causes of early hospital readmission in hospice patients at a comprehensive oncology center in Jordan: a retrospective descriptive study.
Dabbous A, Said A, El Mughrabi A … +2 more , Abu Farsakh F, S Salmany S
BMC Palliat Care · 2026 Apr · PMID 41923036 · Full text
BACKGROUND: Early readmissions among hospice patients remain common, despite goals to minimize them. This issue remains underexplored in the Middle East. This study describes the primary causes of hospital readmission fr...
BACKGROUND: Early readmissions among hospice patients remain common, despite goals to minimize them. This issue remains underexplored in the Middle East. This study describes the primary causes of hospital readmission from hospice settings and reports patient characteristics observed among readmitted cases at a comprehensive oncology center in Jordan. RESULTS: A total of 163 readmissions were analyzed, representing 133 unique patients. The median age was 59 years (range: 18–88), and 51.9% were female. 72.2% had at least one comorbidity, predominantly cardiovascular (83.3%). Gastrointestinal cancers were the most common primary diagnosis (27.8%). Prior to readmission, 71.8% were receiving home hospice care, and 63.8% had Full Code status. The median Palliative Performance Scale was 40. Uncontrolled conditions accounted for 56.4% of readmissions, primarily worsening infections, and uncontrolled pain, while unanticipated new medical issues contributed to 52.8%. Caregiver distress was documented in 12.3% of cases. More than half of patients (54.0%) died during hospitalization. CONCLUSIONS: Within seven days of discharge, hospice patients in our center were readmitted most commonly for uncontrolled symptoms and new medical issues. These descriptive findings may help target quality improvement in symptom management, discharge planning, documentation of end‑of‑life preferences, and transitions between hospice and hospital services. TRIAL REGISTRATION: Not applicable.
Family caregiver experiences in terminal cancer: a qualitative study in palliative care.
Rezaei M, Ghezeljeh TN, Baghernezhad AR … +4 more , Momen R, Mohammadzadeh R, Neishabouri M, Seyedfatemi N
BMC Palliat Care · 2026 Feb · PMID 41918114 · Full text
BACKGROUND: Caring for a family member with advanced cancer is a physically and emotionally demanding experience that can result in severe psychological distress. Understanding the challenges and burdens faced by family...
BACKGROUND: Caring for a family member with advanced cancer is a physically and emotionally demanding experience that can result in severe psychological distress. Understanding the challenges and burdens faced by family caregivers is essential to developing effective support strategies. OBJECTIVE: This study aimed to explore the caregiving challenges and lived experiences of Iranian family caregivers of patients with advanced cancer. METHODS: This qualitative study was conducted in Tehran, Iran, between March 2021 and April 2022. Semi-structured interviews were performed with 13 family caregivers, selected through purposive sampling with maximum variation, until data saturation was achieved. Data were analyzed using Graneheim and Lundman’s content analysis. Credibility and trustworthiness were ensured through member checking, peer debriefing, and adherence to Lincoln and Guba’s qualitative rigor criteria (credibility, dependability, confirmability, and transferability). RESULTS: Participants, mostly women aged 35–75, described profound physical, emotional, and psychological burdens. The overarching theme, “Fence of Caring,” emerged, encompassing four categories: (1) physical and psychological collapse (2), being trapped in caregiving challenges (3), neglected caregiver, and (4) rumination on the death of a loved one. CONCLUSION: Iranian family caregivers experience multidimensional burdens within a sociocultural context that emphasizes familial responsibility. Recognition of these challenges is critical to designing culturally sensitive interventions that reduce caregiver strain and support preparedness for end-of-life care.
Primary or specialist care at home: multicenter validation study of the "CP.BA.SPE 2025" questionnaire for the identification of the level of palliative care in advanced cancer patients.
Bertè R, Pittureri C, Crosignani N … +11 more , Martucci G, Valenti D, Saccò M, Gulmini L, Maltoni M, Vacondio P, Storani S, Zanotto F, Amaducci E, Montanari L, Scarpi E
BMC Palliat Care · 2026 Mar · PMID 41917936 · Full text
BACKGROUND: Reliable tools to discriminate between primary and specialist home palliative care are scarce, and no questionnaire has yet been validated in domiciliary oncology practice. The aim of the study was to validat...
BACKGROUND: Reliable tools to discriminate between primary and specialist home palliative care are scarce, and no questionnaire has yet been validated in domiciliary oncology practice. The aim of the study was to validate the 17-item CP.BA.SPE 2025 questionnaire for identifying advanced cancer patients who need specialist home palliative care. METHODS: Cross-sectional multicentre study (pilot+multicentre validation) conducted in eight Home Palliative Care Units (HPCU) across Emilia-Romagna, Italy (March 2022-June 2024). The CP.BA.SPE 2025 was completed together with the HPCU’s independent judgement of the appropriate care level (gold standard). Item weights were derived with multivariable logistic regression; internal consistency (Kuder-Richardson-20), inter-rater reliability (Cohen’s κ), calibration (Hosmer–Lemeshow) and discrimination (ROC Area Under Curve-AUC) were calculated. A total score ≥14 defined “complex” cases. 543 consecutive adults with metastatic or locally-advanced cancer and Australia-modified Karnofsky Performance Status ≤50 were assessed at first home visit. RESULTS: The CP.BA.SPE 2025 questionnaire scores ranged 0-36.5. With the 14-point cut-off, sensitivity was 0.79 (95% CI 0.74-0.84) and specificity 0.82 (95% CI 0.78-0.87), AUC 0.88 (95% CI 0.85-0.91), Brier score 0.14. Inter-rater agreement among individual professionals was excellent (κ 0.83-0.92); agreement between HPCU and an external comparison team was moderate (κ 0.43). Internal consistency was acceptable (Kuder-Richardson-20 = 0.65). The tool classified 251/543 patients (46.3%) as complex, aligning with international estimates of specialist-care need. CONCLUSIONS: CP.BA.SPE 2025 is quick to administer, reproducible and shows good diagnostic accuracy for directing advanced cancer patients to the appropriate level of home palliative care. Its adoption could foster equitable resource allocation within home-care networks; external and longitudinal validation are recommended.
Ethical considerations of AI integration in palliative care: a qualitative study.
Qiu M, Wu Y, Zeng L … +1 more , Zhang F
BMC Palliat Care · 2026 Mar · PMID 41917935 · Full text
BACKGROUND: Nurses are integral to delivering humanistic care in palliative care settings. While Artificial Intelligence (AI) boasts significant potential for palliative care practices, its integration raises critical et...
BACKGROUND: Nurses are integral to delivering humanistic care in palliative care settings. While Artificial Intelligence (AI) boasts significant potential for palliative care practices, its integration raises critical ethical concerns such as AI’s impact on patient autonomy and its risks of depersonalized care that warrant further exploration. METHODS: A qualitative study using reflexive thematic analysis was conducted to explore nurses’ perspectives on the potential impact of AI integration in palliative care, with a focus on ethical considerations and the prospective actions needed for implementation. Semi-structured interviews were conducted with 20 registered nurses experienced in palliative care, recruited from four hospitals across two urban centers in Sichuan Province, China. RESULTS: Nurses perceive AI integration as ethically transformative rather than merely technical, raising concerns regarding autonomy, trust, justice, and cultural alignment. The thematic analysis identified five major ethical considerations regarding AI integration in palliative care from nurses’ perspectives: (1) ethical challenges to patients’ autonomy and dignity; (2) AI-driven reconstruction of trust dynamics; (3) decision making conflicts in palliative care; (4) difficulties in achieving equity in AI-enabled health services; and (5) adaptation to cultural sensitivity. CONCLUSIONS: The inclusion of AI ethics and dynamic moral decision‑making modules in nursing education is suggested to enhance nurses’ moral sensitivity to deliver equitable care, and strengthen their digital literacy and ethical awareness in AI‑mediated environments. Nurses may assume an ethical responsibility to reduce the risks of cultural bias in AI tools, and to advocate the integration of multicultural perspectives into AI design, training and evaluation, thereby advancing the development of more culturally responsive technologies.
Healthcare professionals' experiences of delivering palliative and end-of-life care in ethnically diverse communities: a qualitative study.
Wainwright JE, Cook EJ, Haslam C … +5 more , Tolliday E, Ali N, Suleman M, Wilkinson E, Randhawa G
BMC Palliat Care · 2026 Apr · PMID 41917916 · Full text
BACKGROUND: Persistent inequalities in palliative and end-of-life care continue to affect ethnically diverse populations in the UK, with disparities in access, engagement, and quality of care. This study explored the per...
BACKGROUND: Persistent inequalities in palliative and end-of-life care continue to affect ethnically diverse populations in the UK, with disparities in access, engagement, and quality of care. This study explored the perspectives of health professionals and service providers on barriers and facilitators to equitable palliative and end-of-life care in England (Bedfordshire, Hertfordshire, and Milton Keynes). The research was embedded within the KEEPNET initiative, a Research Partnership Network aimed at co-producing solutions to local healthcare inequalities. METHODS: A qualitative design was employed using semi-structured interviews with six purposively sampled professionals across statutory and third sector palliative and end-of-life care services in Bedfordshire, Hertfordshire, and Milton Keynes. Participants included clinicians, service managers, and hospice-based practitioners. Data were collected in March 2023 and analysed thematically using an inductive approach to identify key patterns in professional experiences and perceptions of delivering care to ethnically diverse communities. RESULTS: Three overarching themes were identified: (1) access to services (2), uptake of services, and (3) experiences of engaging with services. Barriers included language differences, mistrust of statutory services, cultural misconceptions around palliative and end-of-life care and limited outreach effectiveness. Facilitators included compassionate, individualised care; trust-building through culturally sensitive communication; and community engagement through faith and local leaders. Structural challenges such as workforce shortages and limited weekend provision were also reported. The Research Partnership Network model supported dialogue and capacity building between professionals and communities. CONCLUSION: Culturally competent, community-embedded approaches are essential to addressing disparities in palliative and end-of-life care. Research Partnership Networks offer a collaborative framework for developing responsive and inclusive care models that align with the lived realities of ethnically diverse populations. To ensure equitable care at the end of life, investment in cultural training, community partnerships, and co-produced service development is required.
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