Palliative Care and Social Practice最新文献

{"title":"Medication for subcutaneous administration: Microbiological and physicochemical stability of drug formulations prepared in advance and stored in syringes.","authors":"Iñigo Suberbiola, Ana Casado, Idoia de la Caba, Javier Calvo, Lore Zumeta-Olaskoaga, Maddi Aramburu, Nerea Moreno","doi":"10.1177/26323524261467431","DOIUrl":"10.1177/26323524261467431","url":null,"abstract":"<p><strong>Background: </strong>The subcutaneous (SC) route is used routinely in patients with advanced diseases requiring palliative care. Pre-prepared individual doses of medication stored in syringes may facilitate home administration for symptom management; however, there are limited data on the microbiological and physicochemical stability of such formulations.</p><p><strong>Objectives: </strong>To assess the microbiological and physicochemical stability of the pre-prepared formulations stored in syringes for SC administration.</p><p><strong>Design: </strong>Experimental study of the microbiological and physicochemical stability of pre-filled syringes during storage.</p><p><strong>Methods: </strong>Standardised methods of medication preparation were followed for morphine, midazolam, metoclopramide, hyoscine butylbromide, levomepromazine, haloperidol, ondansetron, fentanyl, ketorolac and dexamethasone, as well as drug mixtures (morphine + midazolam and midazolam + levomepromazine). Microbiological stability of morphine, midazolam, metoclopramide, butylbromide and drug mixtures was analysed by culture on conventional media and monitoring growth over 14 days. A total of 200 syringes were analysed. Physicochemical stability was assessed using ultra-high-performance liquid chromatography with ultraviolet detection coupled to a mass spectrometer, pH measurement and visual macroscopic examination, with measurements taken at eight time points, of the formulations stored in capped polypropylene syringes in air-tight bags in the dark at room temperature (22±3°C) for 12 weeks.</p><p><strong>Results: </strong>In the microbiological stability analysis, all cultures studied were negative. In the physicochemical stability analysis, the formulations studied retained at least 90% of the initial drug concentrations for 12 weeks, except in the case of metoclopramide (for 3 weeks) and showed no significant changes in pH or macroscopic signs of degradation.</p><p><strong>Conclusion: </strong>Formulations aseptically prepared and stored in syringes are microbiologically and physicochemically stable for 12 weeks in the cases of almost all drugs studied, the exception being metoclopramide (which was stable up to week 3). These findings suggest that such formulations show stability characteristics consistent with suitability for SC administration of drugs in palliative home care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261467431"},"PeriodicalIF":2.7,"publicationDate":"2026-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13351219/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148424947","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Seeing the human behind the sample: How compassion training shaped inner awareness, relationships, and workplace meaning in HIV end-of-life research.","authors":"Niamh Higgins, Whitney Tran, Rachel Lau, Joyce Lai, Jeff Taylor, Sara Schairer, Sara Gianella, Ali Ahmed, Karine Dubé","doi":"10.1177/26323524261467424","DOIUrl":"10.1177/26323524261467424","url":null,"abstract":"<p><strong>Background: </strong>Professionals engaged in HIV research at the end-of-life face ongoing emotional demands, yet there is limited evidence on whether brief compassion-based interventions can support resilience and team functioning in this context.</p><p><strong>Objective: </strong>To explore how members of the Last Gift team experienced a brief compassion training program and to examine its perceived value and acceptability within an emotionally demanding end-of-life HIV research setting.</p><p><strong>Methods: </strong>We conducted this qualitative study within the Last Gift, a rapid research autopsy program involving people with HIV and life-limiting illness at the University of California San Diego. Following completion of a four-week compassion training program, we held three focus group discussions with interdisciplinary team members (n = 10). We audio-recorded, transcribed, and analyzed discussions using conventional content analysis.</p><p><strong>Results: </strong>We identified three major themes: (1) intrapersonal growth and improved inner awareness when navigating emotionally intense work; (2) changes in interpersonal relationships with enhanced capacity to extend and receive compassion; and (3) strengthening community and shared purpose in workplace culture. Participants described applying compassion practices both at work and in daily life, contributing to improved interpersonal interactions, reduced emotional reactivity, and greater workplace satisfaction.</p><p><strong>Conclusions: </strong>Brief compassion training programs may offer a feasible and meaningful approach to supporting well-being, emotional resilience, and team cohesion among professionals working in end-of-life HIV research, particularly when embedded within supportive organizational contexts. Further research is needed to examine sustainability and broader implementation in palliative and end-of-life research settings.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261467424"},"PeriodicalIF":2.7,"publicationDate":"2026-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13351235/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148424941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"Ask us anything\": A framework for understanding bereaved children's questions about illness, dying, and grief.","authors":"Ceilidh Eaton Russell, Liana Bailey, Ashwini Pugazhendhi, Karleigh Sutton, Sandra Twiner Ross, Joanna Humphreys","doi":"10.1177/26323524261460926","DOIUrl":"10.1177/26323524261460926","url":null,"abstract":"<p><p>Grieving children may wonder about questions of illness, dying, and death as they navigate the death of, or grief for, someone who matters to them. Parents and caregivers, as well as health and psychosocial clinicians frequently report feeling uncertain and unprepared to engage in these conversations even if they are aware of their helpfulness. Interested in examining the questions bereaved children wonder about, this study analyzed 710 anonymous questions submitted by children aged 5-17 during <i>Ask Us Anything</i> sessions at a bereavement camp in Ontario, Canada between 2009 and 2024. Through an iterative, collaborative process of thematic analysis, this interdisciplinary team constructed a two-dimensional framework to organize grieving children's concerns according to the focus and function of the question being asked. Question focuses (i.e., what it says about the core topic) spanned across: <i>Body, Condition, Dying and Death, Grief</i>, while question functions (i.e., what it says about what the person seeks to understand about the topic) spanned: <i>How it Works, Catch, Cause, Cure, Care, Connect</i>. Question foci and functions were overlaid to form a four-by-six matrix. Adjacent to this matrix were also two self-contained focus categories identifying <i>Existential</i> and <i>Personal/Relational</i> dimensions of bereaved children's questions. Children's questions can be helpful windows into what their grief experiences are like and what their emotional, existential, and/or informational needs are within this experience. By showcasing the layers of bereaved children's questions, this study contributes to advancing knowledge about the depth and breadth of children's curiosities in relation to grief. Further, the resulting framework is proposed as a tool that can foster greater death and grief literacy by guiding caring adults in inviting, anticipating, exploring, and responding to bereaved children's questions and the needs embedded within them.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261460926"},"PeriodicalIF":2.7,"publicationDate":"2026-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13346823/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148424647","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Prevalence and determinants of depression and anxiety among patients enrolled in palliative care: The Case of a palliative care program in Neno District, Malawi.","authors":"Atupere S Phiri, Kondwani Mpinga, Moses Banda Aron, Owen Mwale, Cecilia Needham, Judith Kanyema, Priscilla Kalawa, Brown David Khongo, Ryan McBain","doi":"10.1177/26323524261467426","DOIUrl":"10.1177/26323524261467426","url":null,"abstract":"<p><strong>Introduction: </strong>Mental health conditions, particularly depression and anxiety, are common among individuals with life-limiting illnesses and significantly affect their quality of life. However, little is known about their burden in palliative care in rural Malawi.</p><p><strong>Objective: </strong>This study assessed the prevalence and factors associated with depression and anxiety among adult patients enrolled in the palliative care program in Neno District, Malawi.</p><p><strong>Methodology: </strong>A cross-sectional study was conducted across nine health facilities from January to June 2024. Using simple random sampling, 152 adult participants were selected from the Neno district palliative care database. Quantitative data was collected using the PHQ-9 and GAD-7 as screening tools for depression and anxiety. The analysis used descriptive statistics and multivariable ordered logistic regression to identify factors associated with depression and anxiety, with results reported as adjusted odds ratios and 95% confidence intervals.</p><p><strong>Results: </strong>Of 152 eligible patients, 151 completed the study (99% response rate). The mean age was 67 years (SD = 16.3); 78% (n = 117) were female, and 66% (n = 99) were unmarried. Depression was present in 72% (95% CI: 65.0%-79.4%, n = 109) and anxiety in 70% (95% CI: 62.1%-77.0%, n = 105). Suicidal ideation was reported by 3% (n = 4) of participants. Depression and anxiety were strongly associated (depression model: aOR = 1.490, p < 0.001; anxiety model: aOR = 1.506, p < 0.001). Older age was associated with higher anxiety severity (aOR = 1.027, p = 0.016). No other sociodemographic variables were significantly associated with either outcome.</p><p><strong>Conclusion: </strong>The study findings underscore the high burden of depression and anxiety among patients under a palliative care program in Neno District, age-trailed mental health in chronic ill patients, and integration of mental health services and palliative care programs. Future research should examine how depression and anxiety develop in older adults to tailor interventions for this population.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261467426"},"PeriodicalIF":2.7,"publicationDate":"2026-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13346746/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148424914","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using group concept mapping to conceptualize \"good public awareness of palliative care\".","authors":"Mary-Ann Shantz, Abisola Omoniyi, Lynn Dare, Patricia Biondo, Melanie Doiron, Louise Kashuba","doi":"10.1177/26323524261451439","DOIUrl":"10.1177/26323524261451439","url":null,"abstract":"<p><strong>Background: </strong>Raising public awareness of palliative care has been identified as a priority within research literature on public health approaches to palliative care and within policy documents from many countries, including Canada. However, there is a lack of clarity about what this entails.</p><p><strong>Objective: </strong>To develop conceptual clarity and move from the broad goal of \"raising public awareness\" of palliative care to more clearly defined outcomes and priorities.</p><p><strong>Design: </strong>Group concept mapping is a participatory mixed methods approach that combines qualitative and quantitative analysis. Trochim's six phases of concept mapping methodology were followed.</p><p><strong>Methods: </strong>Convenience sampling was used to invite participation. Participants were asked to brainstorm as many ideas as they wanted in response to the prompt: \"Good public awareness of palliative care means . . ..\" A master list of these ideas was then shared with participants and they were asked to: (1) sort the responses into groups and (2) rate each response on a Likert scale of 1-5 in terms of importance. Statistical analyses were conducted to compile the data into a point map and a range of cluster maps. Participants selected the best-fitting cluster map.</p><p><strong>Results: </strong>Nineteen people participated in the group concept mapping exercise. Eighty-four unique statements were generated in response to the prompt, and participants selected a seven-cluster map as best fitting the data. The seven clusters represent components of good palliative care public awareness and were assigned the following labels: (1) understanding palliative care; (2) knowing how to access palliative care; (3) planning ahead; (4) community support for palliative care; (5) caregivers are supported; (6) comfort talking about death and dying; and (7) palliative care is normalized.</p><p><strong>Conclusion: </strong>As a participatory mixed method, group concept mapping offers a novel approach to providing clarity and supporting action planning. It has been instrumental in refining activities to improve public awareness of palliative care in Alberta, Canada, and may be useful to others undertaking similar initiatives. Addressing these domains is a promising means of improving public awareness, understanding, and ultimately uptake of palliative care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261451439"},"PeriodicalIF":2.7,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13342379/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148413129","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Lived experiences of well-intended but hurtful cancer communication: Insights for death literacy.","authors":"Nele Van den Cruyce, Koen Hermans","doi":"10.1177/26323524261465681","DOIUrl":"10.1177/26323524261465681","url":null,"abstract":"<p><strong>Background: </strong>Living with cancer can position individuals in a liminal space marked by uncertainty, proximity to death, and experiences of grief. In everyday interactions, attempts at comfort may become hurtful when they constrain acknowledgment of mortality or emotional complexity. This study draws on Allan Kellehear's public health palliative care approach (2013) to examine such interactions through the lens of death literacy.</p><p><strong>Objectives: </strong>To explore how people living with cancer experience well-intended but hurtful communication, and to interpret these interactions in relation to death literacy and community capacity to engage with illness and mortality.</p><p><strong>Design: </strong>The study is based on a qualitative analysis of responses to an open-ended survey item.</p><p><strong>Methods: </strong>Belgian adults diagnosed with cancer within the previous three years (N = 733), all of whom had received treatment beyond surgery, completed an online psychosocial survey. An open-ended item invited participants to describe potentially well-intended but hurtful communication. 710 responses were analyzed inductively and subsequently interpreted through a death literacy and public health palliative care lens.</p><p><strong>Results: </strong>Participants described recurring communicative patterns clustering into five themes: existential minimization and denial; normative disciplining of illness; experiential invalidation; relational withdrawal and narrative displacement. Across themes, communication was shaped not only by content but by timing, relational positioning, and emotional attunement. Comments about death, recovery, or coping were experienced as harmful when misaligned with participants' illness trajectory or emotional state.</p><p><strong>Conclusion: </strong>Interpreted as socially situated signals rather than direct measures of death literacy, these findings suggest that everyday cancer communication may reflect constraints in community-level communicative resources for remaining present with uncertainty and implicit mortality. Strengthening community capacity through public health palliative care initiatives - such as compassionate communities approaches and accessible psychosocial support infrastructures (e.g., walk-in centers) - may broaden the socially available repertoires for attuned support in everyday life.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261465681"},"PeriodicalIF":2.7,"publicationDate":"2026-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13333058/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148391834","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Paid homecare worker support for people living with motor neurone disease: A secondary analysis of people living with motor neurone disease and family member perspectives.","authors":"Eleanor Wilson, Nicola Turner, Geraldine Macdonald, Christina Faull","doi":"10.1177/26323524261452739","DOIUrl":"10.1177/26323524261452739","url":null,"abstract":"<p><strong>Background: </strong>People living with motor neurone disease (MND) increasingly receive complex, life-sustaining interventions at home, including ventilation, tube feeding, and cough assist support. These demands place substantial strain on family carers and often require input from paid homecare workers. Despite their essential role, little is known about how homecare workers contribute to complex MND care, how they integrate within multidisciplinary teams, or how families experience their involvement.</p><p><strong>Objectives: </strong>To examine people living with MND and family members' perspectives of homecare worker roles, responsibilities, relationships when complex interventions are required.</p><p><strong>Design: </strong>A qualitative secondary analysis of data from two prior studies exploring home ventilation and tracheostomy ventilation in MND.</p><p><strong>Methods: </strong>Seven relevant NVivo nodes and 33 sub-nodes from interviews with 68 participants were re-coded using a deductive framework. Fourteen new nodes and 11 sub-nodes were generated and organised into three themes: care commissioning and provision; relationships; and the home environment.</p><p><strong>Results: </strong>Participants described fragmented and inconsistent care commissioning, requiring families to advocate persistently for adequate support. Challenges included funding barriers, high staff turnover, and limited MND-specific knowledge, which undermined trust and compromised safe, effective care. Relationships with homecare workers ranged from highly valued, stable partnerships to strained interactions shaped by competence concerns, emotional labour, and mismatched expectations. The presence of homecare workers and medical equipment transformed the home into a quasi-clinical space, reducing privacy, disrupting routines, and requiring households to adapt around care provision. Yet strong relationships with homecare workers could enhance quality of life.</p><p><strong>Conclusion: </strong>Homecare workers play a critical role in delivering complex home-based MND care, yet quality is inconsistent. Improving training, stabilising staffing, supporting care coordination, and preparing families for the relational and environmental impact of homecare are essential for fostering sustainable, trusted care relationships, and improving outcomes for people living with MND and their families.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261452739"},"PeriodicalIF":2.7,"publicationDate":"2026-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13333050/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148391858","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Death literacy as relational capability: Pathways from social capital to emotional support.","authors":"Sora Lee, Kerrie Noonan, Andrea Grindrod, Sumina Shrestha","doi":"10.1177/26323524261461311","DOIUrl":"10.1177/26323524261461311","url":null,"abstract":"<p><strong>Background: </strong>Death literacy not only refers to the knowledge and skills of individuals; there is emerging evidence that death literacy is relational and is deepened via social networks and within communities. Exploring these relationships can improve our understanding of pathways that influence death literacy and public health palliative care initiatives.</p><p><strong>Objectives: </strong>To examine how community-level resources (social capital) influence perceived emotional support, and to test theoretically motivated mediators-including community openness to conversations about death, participation in end-of-life activities, and death literacy (as measured by the DLI-R).</p><p><strong>Methods: </strong>Cross-sectional survey (N = 831) of adults aged 18+ in the Australian community. A mixed-link generalised structural equation model estimates pathways from social capital to perceived emotional support, via community openness (talking), participation as mediators of death literacy (measured by the DLI-R). Indirect effects and proportions mediated were obtained via BCa bootstrap (5,000 replications). Robustness checks compared alternative orderings.</p><p><strong>Results: </strong>The total association of social capital with support was β≈0.305. About 35.1% (95% CI 24.6-45.6%) was mediated; 64.9% (54.4-75.4%) was direct. Structural pathways indicated that higher social capital was associated with increased conversation climate (β=0.255***), which in turn was associated with increased participation in end-of-life activities (logit β=0.794***; OR≈2.21) and higher death literacy (β=0.524***). Death literacy was also associated with higher perceived emotional support (β=0.140***).</p><p><strong>Conclusions: </strong>Feeling supported at the end of life (EoL) is influenced not only by how socially connected communities are, but by what people are able to understand, talk about, and act on death and dying. Open, everyday conversations about death matter and contribute to this, because they provide an opportunity to build understanding and because they signal willingness to support. This highlights two practical ways to grow compassionate communities, strengthen death literacy and socialising conversations about end of life alongside social connectedness.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261461311"},"PeriodicalIF":2.7,"publicationDate":"2026-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13332290/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148391913","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Communicating cancer diagnoses with children in Japan: A qualitative study of healthcare professionals' beliefs and approaches in pediatric oncology.","authors":"Noyuri Yamaji, Nobuyuki Yotani, Mari Ikeda, Takeshi Hasegawa","doi":"10.1177/26323524261465677","DOIUrl":"10.1177/26323524261465677","url":null,"abstract":"<p><strong>Background: </strong>Most children with cancer want clear and honest information about their illness, and effective communication can support coping and reduce distress for children and families. However, in Japan, healthcare professionals face numerous communication barriers when discussing cancer diagnoses with children, and the culturally grounded beliefs and approaches shaping these conversations remain poorly understood.</p><p><strong>Objectives: </strong>This study was aimed at clarifying the beliefs and approaches of Japanese healthcare professionals in communicating cancer diagnoses to children and their families.</p><p><strong>Design: </strong>An exploratory qualitative design was adopted, involving semi-structured individual interviews.</p><p><strong>Methods: </strong>Participants included 18 healthcare professionals (9 physicians and 9 nurses) with over seven years of experience. Data were analyzed using thematic analysis.</p><p><strong>Results: </strong>Five approaches were identified under an overarching commitment to the child's best interests: 1) honesty balanced with emotional protection, 2) empathetic negotiation with families, 3) information sharing to ensure understanding and hope, 4) being present in suffering, and 5) professional self-reflection and mutual team support. While these themes resonate with international literature on honest and supportive communication, two culturally salient features emerged in Japan: a strong tendency to prioritize families' wishes in decision making and a relational emphasis on \"being present\" rather than relying solely on structured, protocol-driven conversations. Communication was hampered by a lack of standardized training and a shortage of pediatric oncology nurses due to staff rotation.</p><p><strong>Conclusions: </strong>Pediatric cancer diagnosis communication in Japan is shaped by five approaches that prioritize the child's best interests. Locally grounded strategies highlight the importance of trust, relationship building, and being present, but may limit children's voices when family preferences dominate. It is essential to employ nurses who specialize in pediatric cancer care. Future research should incorporate the children's and families' perspectives and evaluate culturally sensitive communication strategies.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261465677"},"PeriodicalIF":2.7,"publicationDate":"2026-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13329058/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148391910","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"It's a club nobody wanted to join, but we're there\": Focus groups on end-of-life care experiences and long-term outcomes of bereaved neuro-oncology caregivers.","authors":"Shaista Meer, Rosanna Miller, Peter Buckle, Louise Murray, Catherine Lewis-Smith, Lucy Ziegler, Karin Piil, Florien Boele","doi":"10.1177/26323524261465679","DOIUrl":"10.1177/26323524261465679","url":null,"abstract":"<p><strong>Background: </strong>The disease burden of malignant brain tumours poses significant challenges to both patients and their family caregivers. Even years post-bereavement, neuro-oncology caregivers can suffer serious and long-lasting adverse outcomes. A previous quantitative survey (reported separately) highlighted significant challenges experienced by bereaved neuro-oncology caregivers. This current work explored these issues further through focus groups.</p><p><strong>Objective: </strong>To identify opportunities to enhance support, we investigated caregiver experiences during the patient's end-of-life phase, the dying process, and post-bereavement outcomes.</p><p><strong>Design: </strong>Focus groups as a component of a sequential mixed-methods study designed together with bereaved caregivers.</p><p><strong>Methods: </strong>We performed online focus groups covering the end-of-life phase, the period surrounding the patient's death, and their post-bereavement outcomes. Sampled from survey respondents, caregivers who were ≥6 months post-bereavement were invited to take part in online focus groups. Following audio transcription, data were analysed using reflexive thematic analysis.</p><p><strong>Results: </strong>In three groups, 7 female (64%) and 4 male (36%) caregivers (55% partners of patients) of deceased patients diagnosed with glioblastoma were interviewed. Themes covered 1) care experiences in the end-of-life phase (covering communication, information, support needs, and balancing family dynamics), 2) caregiver experiences surrounding patient death, and 3) immediate and longer-term post-bereavement outcomes (covering complex and conflicting emotional responses, expectations and strategies to cope with grief, and the value of formal and informal support).</p><p><strong>Conclusions: </strong>Findings highlight ongoing significant and unmet emotional support needs of bereaved neuro-oncology caregivers. Caregivers want and deserve to be proactively offered adequate and timely support which could limit the long-lasting adverse impact of providing care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261465679"},"PeriodicalIF":2.7,"publicationDate":"2026-06-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13319575/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148370116","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}