BMC Palliative Care最新文献

Background: Advance care planning (ACP) allows individuals to express their values and preferences for future medical care, yet participation remains low globally. Understanding readiness for ACP and the barriers and facilitators influencing engagement is essential for effective implementation.

Methods: Following Joanna Briggs Institute (JBI) and PRISMA 2020 guidelines, a comprehensive search was conducted across PubMed, Embase, Scopus, Web of Science, Cochrane Library, and grey literature up to September 2025. Quantitative, qualitative, and mixed-methods studies involving adults (patients, families, or healthcare providers) were included. Quantitative data on ACP readiness or acceptance were pooled using a random-effects meta-analysis, while qualitative data were synthesized thematically. Study quality was appraised using CASP, NOS, and Cochrane RoB tools; certainty of evidence was assessed using GRADE and GRADE-CERQual frameworks.

Results: Twenty-nine studies (n = 15,565 participants) from eight countries met inclusion criteria. Barriers to ACP were identified at the patient (emotional discomfort, limited awareness, cultural taboos), family (overprotection, conflict, poor communication), provider (time constraints, lack of training, role ambiguity), and system (insufficient policies, documentation challenges, and fragmented care) levels. Facilitators included family support, early provider initiation, structured protocols, and culturally sensitive communication. The pooled mean ACP readiness score across four studies (n = 856) was 77.23 (95% CI: 67.86-86.61), indicating moderate readiness with substantial heterogeneity (I² = 99.4%). Readiness was positively associated with family support, prior caregiving experience, and active coping styles.

Conclusions: Global readiness for ACP remains moderate and is constrained by emotional, familial, professional, and systemic barriers. Enhancing communication, training, and supportive institutional frameworks is essential to strengthen ACP engagement and promote person-centered end-of-life care.

Registration: CRD420251172759.

Background: Palliative care (PC) at the end of life (EOL) seeks to alleviate suffering and enhance dignity and quality of life, mostly for patients facing terminal illness. Yet within Israel's Arab population, cultural, religious and linguistic dynamics deeply shape the experience of illness, care preferences and trust in the healthcare system. Care provision often fails to address these sociocultural complexities. This study aims to explore and understand the views and attitudes of terminal Israeli Arab patients regarding PC, their dying experiences and the meanings they attach to them as shaped by cultural, religious and socio-political factors.

Methods: A descriptive qualitative study was pursued based on an interpretive-phenomenological approach. Data were collected through 14 in-depth semi-structured interviews conducted in Arabic with 13 terminally ill Arab patients and one family proxy between July 2023 and July 2025. Participants were recruited via convenience and purposive sampling to reflect sample diversity. Interpretive Phenomenological Approach and thematic analysis organized by the Atlas.Ti. software was used to analyze the data.

Results: Four central themes were identified: 1. God decides, but the System Fails - Religious acceptance of death coexists with mistrust in the healthcare system and perceived medical neglect; 2. Faith, Control, and Family: Navigating the EOL journey Decision making at the EOL is shaped by spiritual frameworks, patient's reluctance to accept PC and to engage in EOL discussions, and strong familial involvement, at times overriding patient autonomy; 3. Post-Mortem Concerns- Patients, especially parents, expressed intense anxiety regarding the fate of their dependents after death; 4. The Spiritual Architecture of the EOL Journey - Faith served as a moral and existential framework, influencing perceptions of suffering, sedation and the dying process.

Conclusions: EOL experiences of terminal Arab patients are shaped by deeply rooted religious worldviews, family dynamics and perceptions of structural inequalities. Understanding these elements is vital to improving culturally sensitive PC that fosters trust, spiritual dignity and family-centered decision-making among minority populations.

Background: Despite growing recognition of the importance of identifying unmet needs in palliative care, there remains no clear, operational definition of what constitutes unmet palliative care needs. This gap hinders service planning, policy development and equitable access to care. We aimed to explore priorities for understanding and measuring unmet palliative care needs with stakeholders, including people with lived and professional experience.

Methods: Three online workshops using a modified nominal group technique with people with lived experience of life-limiting illness (as patients or informal carers) and professionals in palliative care. Separate workshops were held for each group to independently identify elements that capture the concept of unmet palliative care needs, followed by a combined workshop to refine and consolidate findings. Workshop data (scribe notes) were analysed using content analysis. Participants then completed an online ranking exercise to prioritise key elements, which was analysed descriptively.

Results: Twenty-eight individuals participated, including 11 people with lived experience (two patients and nine informal carers) and 17 with professional experience. In the final workshop, participants agreed on a list of 27 elements capturing unmet palliative care needs, which were conceptualised in two main ways: (1) service-related (e.g. lack of a single point of contact to access support, including out-of-hours), and (2) those related to symptoms and concerns, (e.g. pain not assessed and managed). Twenty-three participants completed the ranking exercise. Highly prioritised elements included lack of timely and holistic assessment of symptoms or suffering, inability to access services needed, lack of coordination, and continuity of care. Other priorities for understanding and measuring unmet palliative care needs were lack of timely follow-up to address symptoms, lack of skilled support, and lack of respect, dignity and empathy.

Conclusions: This study is the first to engage both individuals with lived experience and professionals in conceptualising unmet palliative care needs. Stakeholders prioritised two broad aspects important for capturing unmet palliative care needs: symptom-related concerns and service-related issues. These findings provide a foundation for developing stakeholder-informed tools to assess unmet palliative care needs that are feasible for use across diverse care settings and populations.

Introduction: The Caribbean islands Aruba, Bonaire, and Curaçao (ABC islands) face challenges in providing palliative care for people with dementia. The Desired Dementia Care Towards End of Life (DEDICATED) approach empowers healthcare professionals to provide person-centered palliative care to individuals with dementia. This study examines healthcare professionals' needs for improving palliative care and their experiences with implementing the DEDICATED approach, as well as its impact on palliative care for people with dementia on the ABC islands.

Methodology: A consortium was established with stakeholders from the ABC islands to facilitate the training of 72 healthcare professionals in implementing the DEDICATED approach in these locations. A needs assessment questionnaire, referred to as the 'DEDICATED questionnaire', was completed to explore the needs for palliative care improvement on the ABC islands. For each island, a focus group was organized to gather feedback from healthcare professionals about their experiences with implementing the DEDICATED approach. A descriptive thematic analysis was performed.

Results: In total, 49 healthcare professionals completed the DEDICATED questionnaire, which indicated high needs for improvement in aspects such as familiarization with a person with dementia and conducting advance care planning. Twenty healthcare professionals participated in the focus groups. Five main themes were identified, related to the implementation of the DEDICATED approach in the islands' sociocultural and organizational aspects, the approach's impact on palliative dementia care, and the necessity of adapting the DEDICATED approach to local contexts. The results revealed that talking about death and palliative care is considered taboo in ABC island culture. Healthcare professionals expressed a need for further refinements to stimulate the implementation of the approach. The DEDICATED approach increased awareness about providing person-centered care and stimulated healthcare professionals to more proactively discuss the palliative care needs of people with dementia and their family caregivers.

Conclusion: The DEDICATED approach showed added value for healthcare professionals in the context of the ABC islands. The approach encouraged proactive discussions about palliative and end-of-life care. However, cultural and contextual aspects, such as religion, could pose barriers to the implementation of the approach. Further refinements are needed to align the DEDICATED approach with the context of the ABC islands, thereby stimulating its implementation.

Trial registration: Not applicable.

Background: Pre-loss grief (PLG) is a critical challenge for cancer caregivers. In China, where family-centered care is profoundly shaped by cultural scripts like filial piety, understanding the digital expression of this experience is crucial for developing effective support. This study aimed to investigate the digitally expressed experience of PLG among Chinese caregivers.

Methods: A computationally assisted qualitative analysis was performed on 63,775 user-generated texts from the social media platform Xiaohongshu. We used topic modeling and keyword co-occurrence network analysis to identify initial semantic patterns, which were then developed into final themes through a reflexive thematic analysis guided by a constructivist epistemology.

Results: Four core themes were identified: (1) Deep Involvement in Medical Decision-Making; (2) Caregiving Burden and Psycho-Physical Suffering; (3) Adaptive Shift in Family Communication Strategies; and (4) Narratives of Resilience and Meaning-Making. These themes reveal that the PLG experience is a dynamic process of navigating multiple tensions, including cultural responsibilities, personal suffering, relational adjustments, and seeking meaning.

Conclusions: The PLG experience of Chinese caregivers is a dynamic process defined by profound tensions. These findings underscore grief's culturally constructed nature, highlighting the need for proactive and culturally sensitive support systems that acknowledge both the inherent burdens and the potential for growth during caregiving.

Background: In paediatric palliative care (PPC), expressions related to death range from diffuse thoughts of dying "death thoughts" (DT) to explicit articulations of a desire to die "death wishes" (DW). These expressions pose significant ethical, clinical, and communicative challenges. Although often conflated in public discourse, DT and DW are conceptually distinct and have different implications for care, communication, and ethical reflection. This survey aimed to investigate how healthcare professionals (HCP) in Germany perceive, differentiate, and respond to these expressions in PPC practice.

Methods: A nationwide online survey was conducted among multidisciplinary PPC professionals in Germany. The 43-item questionnaire included closed- and open-ended questions, addressing clinical experiences with death-related expressions in minors, professional responses, and institutional handling. Quantitative data were analysed descriptively. Qualitative free-text responses were analysed using a framework-guided hybrid thematic analysis.

Results: A total of 120 HCP participated, including physicians (45%), nurses and social workers (13.3% each), psychologists (9.2%), and chaplains (7.5%). Experiences with DT were reported by 62 of 92 (67.4%) of HCP and DW by 62 of 93 (66.7%). Expressions were most observed in adolescents aged 15-18. DT were often reflective or symbolic, while DW tended to be more explicit and associated with suffering. Professional uncertainty was widespread: 49.3% reported feeling unsure about DT, and 57.5% about DW. Only 29.5% reported the presence of institutional guidelines. Still, 63.5% affirmed the clinical relevance of distinguishing DT from DW.

Conclusions: These findings highlight a pressing need for conceptual clarity, ethical reflection, and institutional support in addressing death-related expressions in PPC. The distinction between DT and DW is clinically and ethically meaningful yet blurred in practice. Targeted training, evidence-based guidelines, and structured, interdisciplinary dialogue are essential to strengthen professionals' confidence and competence in interpreting and managing these complex and ethically sensitive situations.

Background: Caring for palliative patients imposes a significant burden, as caregivers must provide physical, psychological, social, and spiritual support. Identifying ways to support informal caregivers is essential for improving their quality of life as well as that of the patients. This study aims to assess the prevalence and determinants of social support and psychological distress, and to explore their relationship among family caregivers of patients receiving palliative care at Nkhoma Mission Hospital and Neno District Hospital in rural Malawi.

Methods: A total of 308 adult caregivers of adult palliative patients attending services at Nkhoma Mission Hospital and Neno District Hospital were recruited between November 2022 and February 2023. Data were collected using the Self-Reporting Questionnaire (SRQ) and the Multidimensional Scale of Perceived Social Support (MSPSS). Categorical data were analyzed using frequencies and percentages, while continuous variables were summarized using mean and standard deviation. Logistic regression was used to determine significant associations.

Results: Of the 308 participants, 176 (57.1%) reported receiving social support, and 129 (41.9%) experienced psychological distress. Caregivers at Nkhoma were over six times more likely to report receiving social support compared to those at Neno (odds ratio [OR] 6.7; 95% CI: 3.1-14.4; p < 0.001). Female caregivers were more than twice as likely to report receiving social support (relative risk [RR] 2.2; 95% CI: 1.2-4.4; p = 0.016). Higher levels of psychological distress were more likely to be reported among caregivers who received support from friends (OR 2.2; 95% CI: 1.3-3.8; p = 0.004) or significant others (OR 1.9; 95% CI: 1.1-3.4; p = 0.023), compared to those supported by family members (OR 1.2; 95% CI: 0.7-2.0; p = 0.562).

Conclusions: This study reveals a substantial burden of psychological distress among informal caregivers of palliative patients in rural Malawi, with notable differences in social support based on gender and geographic location. To better support these caregivers, community-based programs that promote social connectedness are recommended, alongside the routine screening for psychological distress within palliative care services.

Background: Life-limiting illnesses often lead to complex care needs and multifaceted support requirements for both severely ill persons and their informal caregivers, particularly at the end of life. The extent to which these needs are met may be significantly influenced by available economic and social resources. However, an in-depth understanding of how such resources shape end-of-life experiences is still missing. Therefore, our systematic review of qualitative studies aimed to explore and understand the perceptions of severely ill persons at the end of life and their informal caregivers regarding the relevance and consequences of their economic and social resources in varying settings of high-income countries.

Methods: We followed the PRISMA guideline and searched MEDLINE via PubMed, CINAHL and PsychInfo from inception, which means the earliest available records in each database to October 2025. In addition, we searched reference lists of relevant studies. Three authors (DB, GM, MM) extracted the data, and four authors (DB, GM, FO, MM) assessed study quality using the JBI Critical Appraisal Checklist for Qualitative Research. The ratings were verified through mutual double checks. Any discrepancies were resolved through discussion with EB. We synthesized the data using qualitative content analysis according to Schreier.

Results: In total, we included 20 studies reporting on various economic and social resources, which were sometimes interdependent. In the overarching category of economic resources, we identified three subcategories: (1) savings and assets, (2) workplace resources of informal caregivers, and (3) state support and insurance. The identified social resources could be structured into four subcategories according to House's Social Support Theory: emotional support, appraisal support, instrumental support, and informational support.

Conclusions: Severely ill persons and their informal caregivers face major emotional, practical, and organizational challenges at the end of life, and the extent of their burden is closely linked to available economic and social resources. Informal caregivers, who both provide and need support, require targeted professional and peer interventions to manage these demands and protect their well-being. Compassionate Communities appear to be a possible approach to reducing psychological burden, social isolation, and caregiver overload.