BMC Palliative Care[JOURNAL]
Sun
200 papers
Family carers' experiences of serious illness conversations in haematological malignancies - a qualitative interview study.
Hansson I, Bengtsson M, Nyblom S … +2 more , Öhlén J, von Bahr L
BMC Palliat Care · 2026 Jul · PMID 42401944 · Full text
BACKGROUND: Family carers of cancer patients commonly experience anxiety, as well as grief. To better manage their situation, they seek to understand the disease process and become involved in decision-making. Early inte...
BACKGROUND: Family carers of cancer patients commonly experience anxiety, as well as grief. To better manage their situation, they seek to understand the disease process and become involved in decision-making. Early integration of palliative care and serious illness conversations have been shown to improve quality of life, reduce symptom burden, and support both patients and their families. In haematological malignancies, patients often experience high disease burden, poor quality of life, and aggressive treatment near the end of life, with end-of-life discussions frequently occurring too late. This may impact on the experience of their family carers. The aim of this study was to explore family carers' experiences of communication about serious illness and palliative care in the context of haematological malignancies. METHOD: This study has a qualitative descriptive design. Family members of patients who had died with haematological malignancy, treated at a University Hospital in Sweden, were invited to participate. A total of 9 family carers were interviewed between May 2023 and October 2024. RESULTS: Three main themes were identified in the experiences of the interviewed family carers: (1) Feeling excluded but still responsible, (2) Having time to prepare, and (3) Talking about difficult things. CONCLUSIONS: The study shows that family carers of patients with haematological malignancies shoulder great responsibilities while simultaneously often feeling excluded from important conversations. The study highlights the need to include family carers and introduce conversations about palliative care early on, in order to provide support and facilitate communication between patient and family.
Key challenges in communication across milestones of cancer care continuum: a systematic review.
Nguyen VC, Tran K, Phan DT … +4 more , Pham NT, Shen YA, Chen CL, Huang TW
BMC Palliat Care · 2026 Jul · PMID 42399882 · Full text
BACKGROUND: Effective communication is essential in cancer care, significantly influencing patients' emotional, psychological, and physical outcomes. As patients' needs and goals evolve across different stages of the can...
BACKGROUND: Effective communication is essential in cancer care, significantly influencing patients' emotional, psychological, and physical outcomes. As patients' needs and goals evolve across different stages of the cancer journey, communication barriers also change. This systematic review aimed to identify key communication barriers between healthcare providers and cancer patients across the cancer care continuum. METHODS: Two reviewers systematically searched four databases (PubMed, Embase, Cochrane Library, and Web of Science) to identify studies examining communication barriers between healthcare providers and cancer patients at specific stages of care. This review is registered with PROSPERO (CRD420251074785). RESULTS: A total of 139 articles were included and categorized into six distinct stages of the cancer journey. (1) During the screening phase, patients were reluctant to discuss or undergo cancer screening due to limited knowledge, the belief that cancer is unlikely in the absence of symptoms, and fear or anxiety about a potential diagnosis. (2) In the diagnosis phase, receiving cancer as 'bad news', combined with extensive information about treatment and prognosis, led to shock, emotional distress, and informational overload. (3) During treatment, patients found it difficult to discuss adverse effects, including fatigue, nausea, vomiting, and sexual health concerns. Many perceived these symptoms as normal indicators of treatment effectiveness and hesitated to burden their physicians. Female patients, in particular, reported difficulty discussing sexual health, especially with male physicians. (4) In the follow-up phase, limited consultation time contributed to insufficient discussions about long-term adverse effects, relapse risk, prognosis uncertainty, and individualized survivorship care planning. (5) In the recurrence phase, disclosing cancer recurrence was described by oncologists as particularly challenging, as patients often responded with anger, blame, or emotional withdrawal. (6) In end-of-life care, both patients and healthcare providers frequently delayed or avoided end-of-life conversations for various reasons. CONCLUSIONS: Communication barriers between healthcare providers and cancer patients are multifaceted and stage-specific, arising from emotional, cognitive, and relational factors on both sides.
Mapping social implications of wearables to monitor physical activity in palliative care - a qualitative approach.
Öhl N, Curry J, Steigleder T … +3 more , Ostgathe C, Heckel M, Forbes CC
BMC Palliat Care · 2026 Jul · PMID 42393689 · Full text
BACKGROUND: Reduced physical activity is common among patients receiving palliative care. Wearables and other measurement devices offer opportunities to objectively monitor activity and support clinical decision-making a...
BACKGROUND: Reduced physical activity is common among patients receiving palliative care. Wearables and other measurement devices offer opportunities to objectively monitor activity and support clinical decision-making and patient motivation. However, integrating such technologies into palliative care may affect care delivery, including routines, interactions and underlying principles. Given the strong emphasis on interpersonal relationships and patient-centeredness in this setting, wearables may entail specific social implications. This study therefore aims to map the social implications of using wearables to monitor physical activity in palliative care. METHODS: Based on the CARE-HOUSE Framework, developed to conceptualise the social implications associated with digital health technologies, we investigated the potential social implications of using wearables (smartwatches and accelerometers) to monitor physical activity. Focus groups were conducted with palliative care researchers with clinical experience. After presenting background information on wearable activity monitors, participants were prompted to discuss prospective benefits, risks and unknown effects on stakeholders, interactions, social roles, and tasks in the context of healthcare practice. Data was analysed using content structuring analysis. RESULTS: We conducted two focus groups with palliative care researchers with clinical experience (each n = 4; ~50 min duration) to map social implications of wearable technologies used to monitor physical activity in palliative care. The findings showed that wearable technologies introduce new tasks and organizational requirements in clinical practice. They may increase patients' self-efficacy and motivation to remain active but can also provoke feelings of surveillance and influence interactions between patients, relatives, and healthcare professionals. Objective physical activity data may transform medical consultations by supporting assessment, and care planning. Furthermore, wearable technologies may support holistic palliative care by promoting physical activity, and therefore autonomy, and quality of life. CONCLUSIONS: Mapping the social implications of wearables to monitor activity can inform their implementation in palliative care. Addressing these implications is important to ensure that the devices support patient well-being. Future research should focus on translating these insights into practical guidance and incorporate the perspectives of both clinicians and patients.
End-of-life prognostic models in advanced cancer: a scoping review of model development, validation, and impact.
Medlock C, Vivat B, Bicaco A … +2 more , Bruun A, White N
BMC Palliat Care · 2026 Jul · PMID 42393637 · Full text
BACKGROUND: Accurate survival estimation is important for clinical decision-making in advanced cancer. Prognostic models can support prediction of end-of-life and should ideally undergo staged evaluation across a develop...
BACKGROUND: Accurate survival estimation is important for clinical decision-making in advanced cancer. Prognostic models can support prediction of end-of-life and should ideally undergo staged evaluation across a development framework encompassing model development, validation, and impact evaluation before clinical implementation. No synthesis currently maps existing models across this framework, making it difficult to determine which tools are available and the extent to which they are ready for clinical use. This review aimed to identify end-of-life prediction models for advanced cancer and map them across this development framework. METHODS: This scoping review included studies reporting prognostic models combining at least two predictor variables to predict end-of-life (≤ 12 months) in adults with advanced cancer. MEDLINE, Embase, CINAHL, and the Cochrane Library were searched from inception to August 2025. Studies were classified as model development, internal validation, external validation, or impact evaluation, with findings summarised descriptively and narratively. RESULTS: A total of 106 studies were included: 17 (16%) reported development only, 36 (34%) internal validation, and 53 (50%) external validation. Across all studies, 77 distinct models were identified: 8 (10%) had undergone development only, 34 (44%) had been internally validated, and 35 (46%) externally validated. However, most externally validated models had been evaluated only once and within a single country, limiting confidence in their generalisability. No models had undergone impact evaluation. CONCLUSIONS: Although many end-of-life prognostic models exist for advanced cancer, fewer than half have been externally validated and none have been assessed for clinical impact. Their validity, generalisability, and usefulness therefore remain uncertain. Future research should prioritise independent external validation and robust impact evaluation before routine clinical implementation.
The digital legacy in end-of-life care: unspectacular and meaningless, or not enough recognized? An online survey on the attitudes and personal experiences of professionals and volunteers.
Meißner A, Mahaj D
BMC Palliat Care · 2026 Jul · PMID 42387514 · Full text
TITLE: The digital legacy in end-of-life care: Unspectacular and meaningless, or not enough recognized? An online survey on the attitudes and personal experiences of professionals and volunteers. BACKGROUND: The digital...
TITLE: The digital legacy in end-of-life care: Unspectacular and meaningless, or not enough recognized? An online survey on the attitudes and personal experiences of professionals and volunteers. BACKGROUND: The digital era has transformed the way individuals construct and perpetuate their identities, leaving an indelible mark not only in the analogue but also in the digital realm. The digital legacy, comprising online artefacts and virtual traces, plays a pivotal role in shaping one's personality and life narrative. Recognizing its impact on the bereaved and the dying and understanding the nuances of digital legacy are crucial for providing meaningful end-of-life care. Despite the increasing importance of this phenomenon, there is a substantial research gap, and a comprehensive discussion regarding the relevance of digital legacy for dignified and value-oriented end-of-life support is lacking in Germany. METHODS: Based on the recommendations of the German Federal Ministry of Justice regarding the handling of digital legacy, a 34-item questionnaire was developed. A nationwide online survey was conducted using a random sample. Participants were recruited through palliative and hospice organizations with the aim of capturing attitudes, perceived needs, competency requirements, personal experiences and assessments of various professional and occupational groups, including nursing, medicine, social work, and volunteering. The collected data were analysed using descriptive statistics, and four free-text options integrated into the survey were evaluated through content analysis. RESULTS: A total of 396 people participated in the survey, mainly professionals (42.3%) and volunteers (30.8%). For approximately one-quarter of the respondents (26.9%), clear identification was not possible, and they made use of the option 'other'. The majority of respondents were female (82.3%), over 50 years old (74.5%) and had > 5 years of professional or work experience (75.7%), predominantly in outpatient care (66.0%). The study showed that the majority of respondents considered the relevance of the digital legacy as high. Moreover, according to 85.8% of the respondents, it does not receive enough attention in end-of-life care. The way in which digital legacies are dealt with varied considerably and were ambivalent in some cases. There is uncertainty with regard to professional responsibilities and the need for guidance, although most respondents perceived their own skills as inadequate and sought to broaden or deepen their knowledge (90.1%). Additionally, there was little engagement with one's own digital legacy. The free-text responses illustrated a lack of awareness, uncertainty and the desire for further training and supporting materials. CONCLUSIONS: The discrepancy between the recognized importance and the lack of direct engagement with one's own digital legacy, as well as the uncertainties in supporting people at the end of their lives, becomes clear and underscores the need for specific programmes that close existing knowledge gaps and promote awareness of how to handle the digital legacy in a valuable and dignified manner in the context of end-of-life care.
Hospice care knowledge and death attitude profiles among hospital-based healthcare workers: a latent profile analysis.
Li X, Luo H, Mao H … +5 more , Qiao S, Sun M, Zhang X, Gu F, Xiang W
BMC Palliat Care · 2026 Jul · PMID 42387509 · Full text
BACKGROUND: Healthcare workers' attitudes toward death may influence end-of-life care delivery. However, heterogeneity in these attitudes and their relationship with hospice care knowledge remain insufficiently understoo...
BACKGROUND: Healthcare workers' attitudes toward death may influence end-of-life care delivery. However, heterogeneity in these attitudes and their relationship with hospice care knowledge remain insufficiently understood. METHODS: A cross-sectional survey was conducted among 1,421 hospital-based healthcare workers from secondary and tertiary hospitals in Zhejiang Province, China. Death attitudes were assessed using the Death Attitude Profile-Revised (DAP-R), and hospice care knowledge was measured using a structured self-developed questionnaire. Latent profile analysis was applied to identify distinct death attitude profiles. Multinomial logistic regression was used to examine associations between hospice care knowledge, demographic and occupational characteristics, and profile membership. RESULTS: The sample was predominantly composed of nurses (93.8%). Three distinct death attitude profiles were identified: a less adaptive profile characterized by lower acceptance and higher fear or avoidance, a moderate profile with intermediate levels across dimensions, and a high adaptive profile marked by higher acceptance and lower fear-related responses. Hospice care knowledge demonstrated a consistent graded association with profile membership, with higher knowledge scores associated with increased likelihood of belonging to more adaptive profiles. In contrast, demographic and occupational characteristics were not independently associated with profile membership after adjustment. Overall hospice care knowledge levels were relatively low across the sample. CONCLUSIONS: Hospital-based healthcare workers exhibited substantial heterogeneity in death attitudes. Higher hospice care knowledge was consistently associated with more adaptive death attitude profiles. Although causal inferences cannot be drawn due to the cross-sectional design, these findings highlight the potential relevance of hospice and palliative care education in supporting workforce preparedness for end-of-life care. Future longitudinal and interventional studies are needed to clarify the directionality of these associations.
Association between family-perceived quality of death and dying, prognostic awareness, and end-of-life discussions in five common diseases: a nationwide mortality follow-back study.
Nakazawa Y, Miyashita M, Morita T … +8 more , Mori M, Kizawa Y, Okumura Y, Kawagoe S, Yamamoto H, Takeuchi E, Yamazaki R, Ogawa A
BMC Palliat Care · 2026 Jun · PMID 42381057 · Full text
INTRODUCTION: Discussing prognosis and end-of-life (EOL) care with patients and physicians is a sensitive and critical aspect of EOL care. However, the association between prognostic awareness and EOL discussions and the...
INTRODUCTION: Discussing prognosis and end-of-life (EOL) care with patients and physicians is a sensitive and critical aspect of EOL care. However, the association between prognostic awareness and EOL discussions and the quality of death and dying (QOD) remains uncertain. This study aimed to describe prognostic awareness and participation in EOL discussions among patients with common causes of death and to clarify their association with QOD. METHODS: Retrospective nationwide mortality follow-back survey in Japan (Feb 2019; Feb 2020). Bereaved families of patients who died in hospitals or at home from cancer, heart disease, cerebrovascular disease, pneumonia, or renal failure. The primary outcome was family-reported QOD. Exposures of interest included family-reported prognostic awareness and EOL discussions, including care settings and code statuses. Analyses were conducted separately by disease category and place of death. Logistic regression and generalized linear models were used for analysis. RESULTS: Of the 115,861 family members who were sent the questionnaires, we finally analyzed 50,641 responses. Accurate patient prognostic awareness ranged from 56.8% to 70.2% for patients with cancer and from 30.5% to 53.3% for patients with non-cancer diseases. Patient-physician discussions about care settings occurred in 36.4%-54.8% of hospital deaths and 67.8%-81.5% of home deaths across diseases. There were small differences in the QOD scores between patients with accurate and inaccurate prognostic awareness across most subgroups. However, participation in EOL discussions was associated with higher QOD scores than non-participation. The largest QOD score difference was observed in patients who died from pneumonia in hospitals, with discussions about care settings (64.0 versus without 42.6) showing a difference of 21.4 (95% confidence interval: 16.3, 26.5). CONCLUSIONS: Participation in EOL discussions was associated with higher family-reported QOD across diseases and places of death in this observational study. Similar patterns were observed among patients who died in hospital settings. These findings suggest that EOL discussions may be related to QOD beyond the final place of death.
Writing about the disrupted self: a randomized controlled trial of a structured online expressive writing intervention for bereaved Chinese adults.
Zheng J, Yao D, Li J
BMC Palliat Care · 2026 Jul · PMID 42380941 · Full text
BACKGROUND: Disruption and restoration of the self are theorized to be central to bereavement adjustment, yet previous interventions rarely address self-disruption directly. This study examined whether an online expressi...
BACKGROUND: Disruption and restoration of the self are theorized to be central to bereavement adjustment, yet previous interventions rarely address self-disruption directly. This study examined whether an online expressive writing intervention targeting self-disruption could alleviate grief symptoms in bereaved adults. METHODS: In a two-arm randomized controlled trial, 66 bereaved participants were randomly assigned to an intervention group (n = 35) or a waitlist control group (n = 31). The intervention consisted of six sessions (one psychoeducational session and five structured expressive writing sessions) over three weeks, focusing on four aspects of self-disruption, namely: Loss of Self-Direction, Self-Derailment, Self-Devaluation, and Disconnection of Relational-Self. Grief severity was assessed using the PG-13-R at baseline and post-intervention, with a six-month follow-up for the intervention group. RESULTS: Compared with the waitlist control group, the intervention group showed a significantly greater reduction in grief severity (Cohen's d = - 0.93). Within the intervention group, the improvement remained stable at the six-month follow-up. CONCLUSION: Online expressive writing targeting self-disruption in bereaved adults may provide an effective, low-cost, and scalable intervention for grief. However, in the absence of a validated measure of self-disruption, whether the intervention exerts its effects through changes in the self remains untested. TRIAL REGISTRATION: This trial was retrospectively registered with the Chinese Clinical Trial Registry (Registration Number ChiCTR2600120661, Date 18.03.2026).
Quality domains in home-based pediatric hospice and palliative care: adolescent and young adult perspectives.
Grossoehme DH, Crawford CA, Ellakula JC … +7 more , Ajayi T, Baker JN, Friebert S, Humphrey L, Jarrell J, Thienprayoon R, Hinds PS
BMC Palliat Care · 2026 Jul · PMID 42380841 · Full text
BACKGROUND: Current United States palliative care practice guidelines are intended to cover care across all age groups. Previous research with pediatric providers and caregivers concluded that pediatric hospice and palli...
BACKGROUND: Current United States palliative care practice guidelines are intended to cover care across all age groups. Previous research with pediatric providers and caregivers concluded that pediatric hospice and palliative care have unique attributes. Not known is how adolescent hospice and palliative care patients understand quality palliative care. The purpose of this study was to characterize and define quality of care domains as described by adolescent and young adult patients receiving home-based hospice and palliative care. METHODS: Semi-structured interviews with 10-26 year-olds who received home-based hospice and/or palliative care visits in the prior three years at six diverse sites in the United States. Data were analyzed using Krippendorff's semantic content analysis methodology. RESULTS: There were 32 participants (63% female) who had a median(range) age of 17.5 (10-26) years old, and 69% (n = 22) were White. The domains with the highest number of themes were Structure and Processes of Care and Compassionate Care. CONCLUSIONS: The results address an important gap by including adolescent/young adult patients' voices regarding delivery of home-based hospice and palliative care. Clinical implications include prioritizing and making time to build trusting relationships directly with the AYA, empowering them to participate in their care to the extent appropriate and prepare for transition to adult care when needed, providing support for family members, and training for all providers in generalist spiritual care.
'Stay Curious': guest experiences of philosophical counselling in palliative care - a qualitative study.
Schuchter P, Radinger S, Rieger SV … +1 more , Wegleitner K
BMC Palliat Care · 2026 Jun · PMID 42374446 · Full text
BACKGROUND: Philosophical counselling creates a dialogical space for exploring existential questions arising from serious illness, confrontation with mortality, bereavement, and caregiving. Although philosophy has long e...
BACKGROUND: Philosophical counselling creates a dialogical space for exploring existential questions arising from serious illness, confrontation with mortality, bereavement, and caregiving. Although philosophy has long engaged with mortality and existential concerns, philosophy in form of philosophical counselling is not established in palliative care and has seldom been empirically studied. This study examines the views and experiences of individuals who engaged in philosophical counselling in palliative care-related contexts. METHODS: Nine counselling processes were completed; post-counselling interviews were obtained from eight guests and analysed. Purposive sampling identified practitioners via professional associations in Austria, Germany, and Switzerland; guests were recruited by these practitioners in naturalistic practice settings. A qualitative content analysis was used to identify categories and subthemes. RESULTS: Through iterative, interpretive analysis, we generated four main categories: distinctive features of philosophical counselling; how guests perceived the philosophical practitioner; perceived effects; and strengths and limits. Participants valued freedom to explore open-ended questions without pressure to act or solve problems. Conversations were described as inspiring and created space for a "stepping out"-being seen as a person rather than only as affected. We interpreted philosophical curiosity as a grounding stance toward mortality. At the same time, critical questioning could become destabilizing, underscoring the need for calibrated movement between personal involvement and abstract reflection within an empathetic dialogical relationship. CONCLUSIONS: Philosophical counselling seems to offer a space for reflective depth and existential inquiry in palliative care, fostering curiosity, wonder, and connectedness. It is described as offering intellectual freedom and an open, goal-free space. Practice implications include preserving this space, resisting help-driven agendas and didactic, overly abstract lecturing, and calibrating critical inquiry within empathetic dialogue. Philosophical counselling may contribute to facets of death literacy. Our findings indicate that end-of-life themes are already being addressed within philosophical counselling and offer guidance for introducing practice in palliative care contexts.
Exploring the application of Artificial Intelligence in palliative care and its practical, technical and ethical considerations: a scoping review.
Peerawong T, Phenwan T, Chaichulee S … +1 more , Tangudomkit K
BMC Palliat Care · 2026 Jun · PMID 42366389 · Full text
BACKGROUND: Palliative care improves the quality of life of people living with life-limiting conditions and their families; however, global access remains constrained by workforce shortages and late referrals. Artificial...
BACKGROUND: Palliative care improves the quality of life of people living with life-limiting conditions and their families; however, global access remains constrained by workforce shortages and late referrals. Artificial Intelligence (AI) has been proposed as a scalable solution for optimising the identification of needs, supporting clinical decision-making, and enhancing care delivery. However, real-world evidence of the application of AI in palliative care remains sparse, particularly regarding its impact on quality of life, quality of care, and associated practical, technical and ethical challenges. METHODS: A scoping review was conducted following the Joanna Briggs Institute methodology and the PRISMA-ScR checklist. Five databases (the ACM Digital Library, CINAHL, Cochrane Central, PubMed and Web of Science) were searched between September and October 2025. Studies reporting the use of AI to facilitate or enhance palliative care delivery in adults were eligible. Four reviewers independently screened the records, and two reviewers extracted the data using Covidence software. A narrative synthesis was then performed. RESULTS: Fifteen studies, published between 2021 and 2025, were included. Fourteen originated from Global North settings (USA 5, Germany 2, Japan 2, Taiwan 2, UK 1, Spain 1 and Cyprus 1) and one from Iran. Conceptually, AI applications fall into three domains: (1) early identification of palliative care needs, (2) symptom assessment and management and (3) clinical decision support for care conversations. Fifteen studies (100%) reported or discussed quality of care outcomes, most commonly prognostic performance, usability and referral/conversation rates, and only two (13.3%) directly addressed quality of life. Effectiveness was consistently positive, with four randomised controlled trials demonstrating superiority over usual care in referrals, advance care planning, pain control and quality of life domains. Practical barriers were centred on workflow integration and resource demands, while technical limitations include data quality, generalisability, and interpretability. Ethical discourse is underdeveloped, with major gaps in the principles of AI governance. CONCLUSIONS: AI shows potential to improve prognostic accuracy, trigger earlier involvement of palliative care specialists and support symptom management. However, this evidence is geographically skewed, methodologically immature and ethically underdeveloped. Future research must prioritise diverse global settings, patient-reported quality of life outcomes, participatory co-design and systematic ethical governance to ensure equitable implementation.
Factors associated with psychological distress among end-of-life care volunteers: a systematic review of quantitative and qualitative evidence.
Mebus L, Pedrosa DJ, Pedrosa AJ
BMC Palliat Care · 2026 Jun · PMID 42351161 · Full text
BACKGROUND: Volunteers are integral to end-of-life care, providing emotional, spiritual, and practical support. However, they often face emotionally demanding situations with limited training and supervision compared to...
BACKGROUND: Volunteers are integral to end-of-life care, providing emotional, spiritual, and practical support. However, they often face emotionally demanding situations with limited training and supervision compared to professionals. Given the limited and fragmented literature on psychological distress experienced by end-of-life volunteers, this systematic review aimed to synthesise existing quantitative and qualitative evidence to identify factors associated with psychological distress. METHODS: We conducted a systematic literature review including qualitative and quantitative evidence. Five databases (MEDLINE, EMBASE, PsycINFO, Cochrane Database and Web of Science) were searched for original studies, complemented by citation and reference searches. Study quality was assessed using the Qualsyst tool. Quantitative findings were synthesised using an algorithm to evaluate evidence strength, and qualitative data were integrated through thematic meta-synthesis. RESULTS: Twenty-six studies (20 quantitative and 6 qualitative studies) met inclusion criteria. Quantitative research examined 49 volunteer-related, 18 service-related, and one volunteer-patient-interaction-related factor associated with anxiety, death anxiety, depression, burnout, and/or perceived stress. Moderate-strength evidence indicated that death anxiety was negatively associated with better health and well-being but unrelated to age, volunteer experience, or training. Furthermore, depression was negatively associated with volunteer training. Qualitative evidence was scarce, but highlighted additional patient-, interaction-, and service-level mechanisms. CONCLUSION: This review identifies a small, methodologically diverse evidence base on factors associated with psychological distress in end-of-life care volunteers. Quantitative evidence suggests a potential protective association between training and depression, though substantial heterogeneity limits firm conclusions. Limited qualitative evidence revealed patient-, interaction- and service-level factors that are rarely captured quantitatively. Robust theory-guided longitudinal studies are needed to better understand distress and resilience in this under-researched group.
Advance care planning with patients of Islamic migration background: a qualitative study identifying the need for relational autonomy and hope-sustaining communication.
Putker A, Haddane A, Engels Y … +2 more , Kuip E, Perry M
BMC Palliat Care · 2026 Jun · PMID 42351146 · Full text
BACKGROUND: Advance Care Planning (ACP) is largely based on ideas of individual autonomy and direct communication, which may conflict with the relational, cultural and religious perspectives of patients with an Islamic m...
BACKGROUND: Advance Care Planning (ACP) is largely based on ideas of individual autonomy and direct communication, which may conflict with the relational, cultural and religious perspectives of patients with an Islamic migration background. We explored the perspectives of patients with an Islamic background on ACP conversations within a Dutch healthcare system and which communication strategies may support more culturally appropriate ACP. METHODS: A qualitative study was conducted consisting of two focus groups with cultural experts and healthcare professionals (N = 14) and interviews with patients with an Islamic migration background receiving palliative cancer treatment (N = 6) in the Netherlands. Semi-structured interview guides and an ACP introduction video were used to initiate discussion and reflection in both settings. Inductive thematic analysis was applied to all interview transcripts. RESULTS: Three main themes emerged: (1) ACP decision-making is predominantly family-driven: patients rely on relational autonomy through their family network, although individual preferences vary across generations. This highlights the importance of exploring patients' preferred role of the family in decision-making, facilitating family involvement in ACP conversations, and avoiding assumptions of individual decision-making as the default. (2) Cultural and religious meaning of illness and suffering strongly shapes how patients interpret the end of life. Rather than using concepts such as "quality of life", clinicians should explore what gives patients (spiritual) meaning and hope. Palliative care was sometimes misunderstood as hastening death, highlighting the importance of explaining the difference between symptom management and ending life. (3) Hope is a crucial determinant for maintaining engagement in ACP discussions. Direct communication, especially statements removing all hope, was experienced as distressing and damaging to trust. Patients valued communication that preserved hope, matched their emotional readiness, and showed genuine personal and cultural interest. CONCLUSION: ACP with patients with an Islamic migration background requires a relational, hope-sustaining and culturally sensitive approach. Decision-making is often family-driven, and individualistic perspectives on autonomy may not align with patient preferences. Religious meanings of illness and suffering influence perceptions of palliative care, while maintaining hope is essential for engagement. Adapting communication including preserving hope may enhance trust and offers concrete strategies to support appropriate ACP conservations.
Maintaining personhood within family life: a qualitative study of home-based palliative care for patients with advanced cancer in urban China.
Zhang S, Zhang X, Qin Y … +8 more , Wang M, Li Z, Xu L, Ou X, Wang Z, Xiao Y, Wu L, Yue P
BMC Palliat Care · 2026 Jun · PMID 42351110 · Full text
BACKGROUND: Globally, several patients prefer home as the place of death, making home-based palliative care (HBPC) an important component of holistic palliative care delivery. In China, where many patients receive pallia...
BACKGROUND: Globally, several patients prefer home as the place of death, making home-based palliative care (HBPC) an important component of holistic palliative care delivery. In China, where many patients receive palliative care at home, HBPC is constrained by limited resources, fragmented services and death-avoidant cultural norms. This study aimed to explore how urban patients with advanced cancer experience HBPC within family and cultural contexts in China. METHODS: We conducted a focused ethnographic study in Beijing, China. Twelve urban patients with advanced cancer receiving HBPC were purposively recruited via two outpatient departments and four community health centers and all participated in the study. Data were generated through semi-structured interviews, participant observation, and field notes. Data were analyzed using content analysis with iterative coding and constant comparison to refine themes; team discussion and analytic memos were used to enhance rigor. RESULTS: Content analysis generated four interrelated themes: (1) Being the focus of the family - patients sought to regain visibility in family life and embed care in daily routines; (2) Guarding my boundaries - patients defined personal limits, managed social exposure and articulated autonomy to preserve dignity; (3) The final safety net - patients sought external care and institutional support as illness progressed to enhance comfort and reduce family burden; (4) Preserving the value of life - patients affirmed meaning by reflecting on their life course, staying connected with family and aspiring to be remembered. CONCLUSIONS: For urban Chinese patients with advanced cancer, HBPC is experienced as a process of maintaining personhood within intersecting domains of care, identity and family ethics. Care should address not only symptom relief, but also dignity, meaning and culturally embedded family relationships.
Caregiver guilt as an underrecognised burden in family cancer caregiving: a scoping review and implications for palliative care support.
Xu H, Han X, Fan W … +10 more , Sun Y, Gao K, Liu X, Liu X, Li Y, Zhang Y, Du W, Li W, Zhou Z, Shang L
BMC Palliat Care · 2026 Jun · PMID 42337523 · Full text
BACKGROUND: Family caregivers play a central role in cancer and palliative care but often experience substantial emotional burden. Caregiver guilt has increasingly been recognised as clinically relevant; however, existin...
BACKGROUND: Family caregivers play a central role in cancer and palliative care but often experience substantial emotional burden. Caregiver guilt has increasingly been recognised as clinically relevant; however, existing research has largely examined guilt as a secondary component of broader psychosocial outcomes. Evidence regarding how caregiver guilt is conceptualised, measured, and addressed across cultural contexts remains fragmented. This scoping review aimed to synthesise current evidence on caregiver guilt among family caregivers of patients with cancer and to examine its conceptualisation, measurement, and implications for palliative care. METHODS: A scoping review was conducted following the Arksey and O'Malley framework and reported in accordance with PRISMA-ScR guidelines. Thirteen English and Chinese databases were searched from database inception to 20 October 2025. Qualitative, quantitative, and mixed-methods studies examining guilt as a primary or secondary outcome among family caregivers of patients with cancer were included. Data were synthesised narratively to identify key themes across studies. RESULTS: Twenty-seven studies were included. The studies used qualitative, quantitative, and mixed-methods designs and were conducted across diverse cultural and care contexts. Caregiver guilt was reported in relation to perceived inadequacy in caregiving, difficult care-related decisions, self-care, family and relational responsibilities, emotional suppression, and uncertainty around prognosis or end-of-life care. Measurement approaches were heterogeneous, including standardised scales, brief guilt items, study-specific questionnaires, and qualitative methods. Six studies were conducted in direct palliative, hospice, end-of-life, or bereavement contexts, and five addressed advanced, incurable, prognosis-related, or otherwise palliative-relevant cancer caregiving. Limited intervention-related evidence was identified, including one feasibility study that included caregiver guilt as an outcome and one single-case intervention component reported in a master's thesis. CONCLUSIONS: Caregiver guilt is a recurring but inconsistently conceptualised experience in cancer caregiving. Based on the reported patterns across included studies, this review proposes an interpretive framework comprising two interrelated dimensions of caregiver guilt: action-oriented guilt and identity-oriented guilt. Future research should develop and test conceptually clear measures of caregiver guilt and evaluate interventions that address guilt-related distress across palliative and broader cancer caregiving contexts.
Exploring the spiritual needs of patients receiving palliative care and their caregivers: a qualitative study.
Turgay G, Çevik B, Kav S … +1 more , Çıtak EA
BMC Palliat Care · 2026 Jun · PMID 42337513 · Full text
BACKGROUND: Diagnosing chronic or life-threatening illnesses can lead to spiritual struggles for patients and their caregivers. This study aims to explore the spiritual needs of patients receiving palliative care and the...
BACKGROUND: Diagnosing chronic or life-threatening illnesses can lead to spiritual struggles for patients and their caregivers. This study aims to explore the spiritual needs of patients receiving palliative care and their caregivers. METHODS: The qualitative study was conducted with patients and their caregivers in the palliative care unit of a foundation hospital in Ankara. Semi-structured interviews were conducted with 22 patients and 22 caregivers. The interview questions for patients focused on health-related issues, challenges, coping strategies, significant aspects of their lives, and any changes in their beliefs during illness. Similarly, caregivers were asked four semi-structured questions regarding their challenges, coping strategies, the most meaningful aspects of their lives, and any changes in their beliefs as caregivers. Data analysis was performed using Colaizzi's phenomenological approach. RESULTS: The most common diagnoses among patients were end-stage renal failure, chronic liver disease, lung cancer, and ovarian cancer, respectively. Data analysis revealed four main themes and eight sub-themes. The main themes identified were: "Functional Disability," "Transcendence and Family Support," "Acceptance," and "Psychological Pain." Four main themes and three sub-themes emerged from the caregiver data. The main themes were: "Care Burden," "Lack of Information," "God/Higher Power," and "Glory of Care." The "Care Burden" theme encompassed three sub-themes: "Physical Problems," "Stress," and "Economic Problems." CONCLUSIONS: The results of this qualitative study indicate that spiritual values are indispensable for the patients and caregivers, and they perceive support from God, family, and friends even during the most difficult times.
Effect of nurse-led individualized noise nursing intervention on sleep comfort and pain relief in terminally ill patients undergoing palliative care.
Wang S, Zhang Y, Tang L … +1 more , Yang X
BMC Palliat Care · 2026 Jun · PMID 42332743 · Full text
BACKGROUND: Sleep disturbance and pain are common sources of distress in terminally ill patients receiving palliative care, and nighttime ward noise is a modifiable environmental factor that may aggravate both symptoms....
BACKGROUND: Sleep disturbance and pain are common sources of distress in terminally ill patients receiving palliative care, and nighttime ward noise is a modifiable environmental factor that may aggravate both symptoms. This study evaluated the effect of a nurse-led, individualized noise nursing intervention on sleep comfort and pain relief in terminally ill patients receiving palliative care, with the aim of providing practical evidence for comfort-oriented nursing care. METHODS: A retrospective cohort analysis was conducted using existing clinical and nursing records of 163 terminally ill patients admitted to the palliative care ward of our hospital from March 2024 to August 2025. Patients were divided into an observation group (n = 89) and a control group (n = 74) according to the nursing methods received. The control group received routine palliative care combined with standardized noise nursing, while the observation group received nurse-led individualized noise nursing in addition to the routine care. The average intervention period was 4 weeks for both groups. Indicators related to sleep comfort, pain status, and noise interference were compared between the two groups. RESULTS: After the intervention, the observation group showed greater improvements in sleep comfort, pain-related indicators, and noise interference indices compared to the control group. The observation group also had higher scores for nursing compliance and family satisfaction, along with better quality of life and a lower incidence of adverse events. All between-group differences were statistically significant (P < 0.05). CONCLUSION: Among terminally ill patients receiving palliative care, a nurse-led, individualized noise nursing program is associated with improved sleep comfort and better pain-related outcomes. During the intervention period, patients show better adherence to nursing measures, and family satisfaction increases.
Adapting a palliative care intervention for people with advanced cancer across seven European countries: the Pal-Cycles intervention.
Hooley R, Payne S, Brunsch H … +12 more , Surges SM, Mosoiu D, Hurducas F, Hernández-Marrero P, Pereira SM, Csikós Á, Pozsgai É, Leppert W, Forycka-Ast M, van den Brand P, Hasselaar J, Preston N
BMC Palliat Care · 2026 Jun · PMID 42332712 · Full text
BACKGROUND: International adaptation of healthcare interventions requires sensitivity to local contexts, especially in palliative care, where healthcare systems and cultural expectations about end of life differ widely....
BACKGROUND: International adaptation of healthcare interventions requires sensitivity to local contexts, especially in palliative care, where healthcare systems and cultural expectations about end of life differ widely. Pal-Cycles is an intervention that aims to improve transitions in care for patients with advanced cancer. This intervention was adapted for implementation in a stepped wedge trial across seven European countries (Germany, Hungary, the Netherlands, Poland, Portugal, Romania and the UK). This paper aims to illustrate the process of adapting a palliative care intervention (Pal-Cycles) to meet the needs of those using healthcare settings across seven European countries. METHODS: Adapted nominal group techniques (a structured group method that supports idea generation, discussion, and prioritisation) were used, involving both in-country and cross-country adaptation meetings focused on the five key components of the original intervention design, to ensure cultural sensitivity and best fit All countries established a group of clinicians and all except two countries (Portugal and Hungary) involved groups of patients and families. The adaptation process occurred in a series of 5 meetings, which were mostly held online to accommodate participants' schedules. RESULTS: A total of 36 clinicians, 14 patients or family members, and 16 facilitators participated in the adaptation process over a four-month period. Structured guidance and iterative consultation meetings ensured that the final intervention was both standardised and adaptable to each country's healthcare setting. We produced a standardised intervention manual based on a theory of change model, ensuring consistency across countries while allowing for contextual flexibility. CONCLUSIONS: This paper provides guidance for future cross-cultural adaptation of palliative care interventions, illustrating the value of detailed methodological planning, structured guidance, and multi-stakeholder engagement in the adaptation process. TRIAL REGISTRATION: ClinicalTrials.gov NCT06259136, registered on 6 February 2024.
Grief experiences among LGBTQ+ populations: a scoping review.
Pérez TR, González CMM, Ortega HV … +1 more , Hernández AMG
BMC Palliat Care · 2026 Jun · PMID 42332689 · Full text
CONTEXT: LGBTQ+ individuals face grieving processes complicated by minority stress, structural discrimination, and fears related to disclosure of their sexual orientation or gender identity, which leads to disenfranchise...
CONTEXT: LGBTQ+ individuals face grieving processes complicated by minority stress, structural discrimination, and fears related to disclosure of their sexual orientation or gender identity, which leads to disenfranchised grief within healthcare systems that remain heteronormative. Recent literature on palliative care highlights inequities in access, a lack of recognition of chosen families, and gaps in professionals' LGBTQ+ cultural competence. OBJECTIVE: To explore research published between 2021 and 2026 on grief and bereavement-related experiences among LGBTQ+ adults in healthcare and palliative care settings, identifying the main topics addressed and knowledge gaps relevant to clinical practice. METHODS: A scoping review was conducted following the framework of Arksey and O'Malley and the recommendations of the Joanna Briggs Institute and reported according to PRISMA-ScR. Original articles were searched for in 6 databases (February 2026). Independent double screening (k = 0.87) with removal of duplicates. Primary empirical studies on grief and bereavement-related experiences in LGBTQ+ adults in healthcare or palliative care settings were included, including studies on end-of-life communication, advance care planning, disclosure processes, and bereavement-related support when they provided identifiable primary data. Data were extracted using structured templates and analyzed through inductive thematic analysis. RESULTS: Seven primary empirical studies were included, with qualitative designs predominating. The evidence was mainly produced in English-speaking countries. Four main themes were identified: minority stress, complexities of disclosure, disenfranchised grief, and gaps in professional training. Critical gaps included underrepresentation of transgender people, a scarcity of quantitative data, an absence of intersectional perspectives, and concentration in Western contexts. CONCLUSIONS: Grief and bereavement-related experiences of LGBTQ+ adults in healthcare and palliative care settings appear to be profoundly shaped by structural dynamics of stigma, the invisibility of the chosen family, and training deficits in LGBTQ+ cultural competence. These findings suggest the need to develop institutional protocols sensitive to disclosure preferences, formally recognize the chosen family in end-of-life decisions, and incorporate mandatory training in LGBTQ+ competencies into curricula and continuing education programs. Future research should prioritize longitudinal and interventionist designs, intersectional approaches, and studies in non-Western contexts.
A knowledge graph-driven paradigm for holistic symptom management: development and evaluation of a nurse-led KG-QA system in community palliative care.
Yan X, An R, Liu G … +3 more , Wang Y, Jiang Y, Wan Q
BMC Palliat Care · 2026 Jun · PMID 42321714 · Full text
BACKGROUND: Community nurses play a pivotal role in palliative care but face barriers in managing complex symptoms, such as fragmented knowledge and a lack of community-tailored evidence-based guidance, impairing clinica...
BACKGROUND: Community nurses play a pivotal role in palliative care but face barriers in managing complex symptoms, such as fragmented knowledge and a lack of community-tailored evidence-based guidance, impairing clinical efficiency. The aim of this study was to develop and evaluate a knowledge graph-based question-answering system for symptom management in community palliative care. METHODS: A three-phase codesign study guided by the Knowledge-to-Action framework was conducted. Phase 1 (Knowledge Creation): A Symptom Management Knowledge Base (Knowledge Product I) was developed through a codesign process involving a multidisciplinary expert panel. This panel adapted a knowledge base created by researchers through systematic evidence synthesis, employing FAME criteria for contextual adaptation. Phase 2 (Action Cycle: Implementation): A semantically structured knowledge graph (Knowledge Product II) was constructed via automated extraction by software developers, followed by manual verification by researchers. Based on this graph, a question-answering system was created and implemented as a WeChat mini-program, resulting in a practical KG-QA system (Knowledge Product III). Phase 3 (Action Cycle: Evaluation): The system's acceptability, usability, and perceived usefulness and ease of use were assessed among experts and community nurses during a two-week evaluation period using the Clinical Nursing Information System Effectiveness Evaluation Scale and the Post-Study System Usability Questionnaire, which is grounded in the Technology Acceptance Model. RESULTS: The knowledge base comprises 225 evidence items for nine symptoms; the knowledge graph integrates ten entity types, 11 relationship categories, 442 entities and 668 relationships, with the system supporting four query interfaces and three search methods. The evaluations demonstrated high perceived usefulness and ease of use, with strong scores for acceptability (102.25 ± 16.21; 110.56 ± 9.90) and usability (2.47 ± 1.98; 2.23 ± 1.93). CONCLUSION: The question-answering system bridges the evidence-practice gap via a nursing-process paradigm, offering a potentially scalable model that aligns with national policies pending further validation. However, these findings are based on a small‑scale, single‑region, short‑term evaluation relying largely on subjective measures. Future research should explore its long-term clinical outcomes and cross-setting scalability.
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