Palliative Care and Social Practice最新文献

{"title":"Patient-centred educational interventions for assessing and managing cancer-related pain relevant to minority ethnic populations: A mixed-methods systematic review.","authors":"Tara Dehpour, Donna Wakefield, Tim Luckett, Jamilla Hussain, Jonathan Koffman","doi":"10.1177/26323524261421936","DOIUrl":"10.1177/26323524261421936","url":null,"abstract":"<p><strong>Objectives: </strong>Effective pain management remains a significant challenge for patients with cancer, where disparities in care and treatment are evident. Patients from minority ethnic populations are often inadequately assessed and undertreated for pain. Patient-centred educational interventions have proven effective in enabling patients to communicate their pain to clinicians. However, the factors that make cancer pain education interventions relevant and acceptable for patients from minority ethnic populations are not well understood. This study aims to systematically identify, appraise, and synthesise evidence on educational resources for the assessment and management of cancer-related pain, and to evaluate their relevance for patients from minority ethnic populations.</p><p><strong>Method: </strong>A mixed-methods systematic review was conducted (PROSPERO: CRD42024498184), with searches in MEDLINE, EMBASE, PsychINFO, and CINAHL from inception to June 2025. Studies focusing on patient-centred educational interventions for the assessment and management of cancer-related pain were eligible for inclusion. The search was not limited to minority ethnic populations, as broader cancer pain education literature may offer valuable, applicable insights. Quality appraisal was performed with \"QualSyst.\"</p><p><strong>Results: </strong>A total of 3560 studies were identified, of which 62 (5 qualitative, 56 quantitative, 1 mixed-method) met the eligibility criteria. Only six studies specifically focused on minority ethnic populations, all of which were based in the United States and involved Hispanic, African-American, Indian-American, and Asian-American populations. Key components of educational interventions were identified, and an initial logic model was developed to guide the creation of future educational resources for cancer pain management.</p><p><strong>Conclusion: </strong>Evidence directly addressing cancer pain management in minority ethnic populations remains limited. Nonetheless, the review does identify promising intervention components and structural considerations for culturally responsive patient-centred care. Current evidence highlights the importance of developing tailored educational interventions aimed at improving knowledge, correcting misconceptions, enhancing communication, and promoting self-monitoring to empower patients to manage cancer pain effectively and seek help when needed.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261421936"},"PeriodicalIF":2.2,"publicationDate":"2026-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13009982/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147515284","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":"From suffering to support: Applying the essence of spiritual care to compassion education for children and young people.","authors":"Keiko Chida, Taketoshi Ozawa, Hiroki Chiba","doi":"10.1177/26323524261432234","DOIUrl":"10.1177/26323524261432234","url":null,"abstract":"<p><strong>Background: </strong>In Japan, challenges such as bullying, school absenteeism, and rising rates of self-harm and suicide among children and young people have become pressing social concerns, reflecting patterns of emotional distress and social disconnection. Strengthening relational capacities for recognizing suffering and support has therefore emerged as an important educational and public health priority.</p><p><strong>Aim: </strong>This study explores how children and young people participating in the Lessons of Life program (LLP) sessions articulate suffering, support, and emerging orientations toward compassion in their written reflections.</p><p><strong>Methods: </strong>This practice-based qualitative study analysed written reflections collected between 2018 and September 2025 following the implementation of LLP sessions in formal educational settings across Japan. Certified trainers delivered 1059 sessions. Approximately 65,000 free-text reflections, produced as part of routine educational activities, were examined inductively to identify recurring patterns in how participants articulated experiences of suffering, support, and relational orientation.</p><p><strong>Results: </strong>Three overarching themes were identified: (1) noticing suffering and support; (2) reconstructing self-worth and meaning through relational support; and (3) emerging orientations toward compassionate action. Reflections included accounts of previously unspoken distress reframed, through being understood, into intentions for mutual care and supportive action.</p><p><strong>Conclusion: </strong>This exploratory study suggests that principles derived from spiritual care may be meaningfully translated into educational contexts. Rather than demonstrating effectiveness, the findings are descriptive and hypothesis-generating, highlighting relational processes through which children and young people may reinterpret everyday suffering, experience themselves as \"good enough\" through being understood, and sometimes articulate orientations toward compassionate relationships.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261432234"},"PeriodicalIF":2.2,"publicationDate":"2026-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13010043/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147515354","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":"When the bed beside you empties: Two long-term ward stories.","authors":"Anat Romem","doi":"10.1177/26323524261429986","DOIUrl":"https://doi.org/10.1177/26323524261429986","url":null,"abstract":"<p><p>In long-term geriatric care, dying is rarely a single event; it is a shared atmosphere shaped by proximity, repetition, and ward culture. This narrative essay follows two women living \"beside\" death: one who becomes a feared symbol after multiple neighboring deaths, and another whose steady refusal (\"no\") reveals autonomy as protection against dehumanization. Through these stories, the essay examines how patients and staff make meaning from loss, how superstition and stigma can emerge as informal coping, and how dignity can be eroded or restored through everyday communication and presence. It argues that long-term wards function as social and spiritual ecosystems where grief is communal, narratives spread quickly, and small acts as silence, beauty, companionship can become forms of care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261429986"},"PeriodicalIF":2.2,"publicationDate":"2026-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12988273/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147468707","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":"Too young to die, too silenced to love: Sexual and reproductive health of young adults receiving palliative and end-of-life care in Ghana.","authors":"Joshua Okyere","doi":"10.1177/26323524261432746","DOIUrl":"https://doi.org/10.1177/26323524261432746","url":null,"abstract":"<p><p>Young adults living with chronic noncommunicable diseases (NCDs) in Ghana face unique challenges that extend beyond physical and psychosocial suffering to include unmet sexual and reproductive health (SRH) needs. Yet, SRH remains a neglected aspect of palliative and end-of-life (EoL) care in the country. This article explores why SRH needs are rarely discussed in palliative and EoL care settings. It also examines the factors contributing to the high-unmet need for SRH needs, the repercussions, and possible actions that can be implemented to elevate SRH as a core dimension of palliative and EoL care service provision in the Ghanaian/African setting. The article argues that false assumptions, cultural barriers, policy gaps, and inadequate training contribute to the neglect of SRH in palliative and EoL care settings. The article identifies the following as strategies to surmount the identified barriers: integrating SRH as a core component of palliative care education in Ghana, developing a guideline or a protocol for assessing and handling SRH needs of young adults living with chronic NCDs, and adopting a person-centred approach when communicating about SRH matters. The article further highlights the potential of adopting the PLISSIT model as a practical framework to facilitate sensitive, structured discussions on sexuality in palliative settings.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261432746"},"PeriodicalIF":2.2,"publicationDate":"2026-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12988279/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147468648","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":"Corrigendum to 'Understanding attitudes and preferences towards advance care planning in older adults: Insights from a cross-sectional study in primary care'.","authors":"","doi":"10.1177/26323524261430483","DOIUrl":"https://doi.org/10.1177/26323524261430483","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.1177/26323524251406287.].</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261430483"},"PeriodicalIF":2.2,"publicationDate":"2026-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12979886/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147468625","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":"The impact of the COVID-19 pandemic on end-of-life care in LTCFs in England: A qualitative study of LTCF staff experiences.","authors":"Natalie Cotterell, Danni Collingridge Moore","doi":"10.1177/26323524251413623","DOIUrl":"https://doi.org/10.1177/26323524251413623","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic significantly increased the number of deaths within long-term care facilities (LTCFs) globally. Restrictions around visitation and social distancing were common; however, research conducted during the pandemic demonstrates that these policies impacted the ways in which end-of-life care was delivered in LTCFs.</p><p><strong>Aim: </strong>This paper aims to explore the experiences of LTCF staff members in England in providing end-of-life care in the context of policies issued by the government at the time.</p><p><strong>Methods: </strong>Secondary analysis of data collected from qualitative, semi-structured interviews conducted with 24 LTCF staff working across eight LTCFs in the north-west of England were analysed. Interviews were conducted with LTCF staff members, exploring their experiences of working in adult social care during the COVID-19 pandemic. Themes related to providing end-of-life care during this time were identified and analysed using thematic analysis.</p><p><strong>Findings: </strong>Thematic analysis identified four key themes including: discrepancies in following COVID-19 UK government guidelines including visitation at end of life as an exception; the influence of staffing on delivering end-of-life care; utilising technology to substitute physical presence at end-of-life visits; and the emotional impact of delivering end-of-life care under COVID-19 restrictions.</p><p><strong>Conclusion: </strong>The findings demonstrate the numerous challenges LTCF staff experienced when delivering end-of-life care during the COVID-19 pandemic in terms of the practicalities of managing resident deaths, facilitating visitation, and the associated impact on emotional well-being. Ensuring that all LTCF staff are trained to recognise end-of-life care, in the event of a future pandemic, will better equip LTCFs in providing high-quality care. It is paramount that guidance on managing family contact at end of life is consistent, while considering the impact of implementing such guidance on the mental and emotional well-being of LTCF staff members.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524251413623"},"PeriodicalIF":2.2,"publicationDate":"2026-03-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12972541/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147436288","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":"How do physicians perceive and manage the influence of their personal end-of-life preferences on clinical practice and end-of-life decision-making with patients? An international qualitative study.","authors":"Sarah Mroz, Frederick Daenen, Sigrid Dierickx, Freddy Mortier, Ludovica De Panfilis, Luca Ghirotto, Toby C Campbell, Luc Deliens, Kenneth Chambaere","doi":"10.1177/26323524251413284","DOIUrl":"10.1177/26323524251413284","url":null,"abstract":"<p><strong>Background: </strong>Physicians are frequently asked what they would do in the position of their patients, and they have significant influence on end-of-life decisions. Therefore, it is crucial to understand the connection between physicians' personal end-of-life preferences and their clinical practice and the impact of this connection on patient care.</p><p><strong>Objectives: </strong>To explore how physicians perceive and manage the impact of their end-of-life preferences on their clinical practice and end-of-life decision-making.</p><p><strong>Design: </strong>Exploratory qualitative study using in-depth interviews.</p><p><strong>Methods: </strong>Forty-five interviews were conducted from January to November 2022 using a semi-structured interview guide. Participants included three types of physicians: general practitioners, palliative care physicians, and other medical specialists in Belgium (Flanders), Italy, and the United States (Wisconsin). Data collection and analysis were informed by the reflexive thematic analysis approach. Audio recordings were transcribed verbatim, and NVivo 12 was used for coding and analysis. Consolidated criteria for reporting qualitative research (COREQ) was followed.</p><p><strong>Results: </strong>Physicians acknowledge the impact of their personal end-of-life preferences on their clinical practice and emphasize the importance of maintaining objectivity and centering decision-making on patient preferences. Physicians adopt strategies to mitigate potential biases. There is a divergence of opinion about whether it is appropriate to share when asked what they would do in the position of their patients. Most believe focusing on patients' values and priorities is essential and others feel sharing is crucial to maintain trust. Physicians struggle with ethical tensions and moral discomfort, particularly when patients' requests conflict with their beliefs. Physicians experience personal and professional growth through end-of-life discussions and reflection.</p><p><strong>Conclusion: </strong>Physicians recognize and attempt to manage the impact of their own end-of-life preferences on their clinical practice. Physicians are not in agreement about sharing when asked what they would do in the situation of their patients.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524251413284"},"PeriodicalIF":2.2,"publicationDate":"2026-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12966569/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147378927","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":"General practitioners' relational familiarity with home-dwelling patients in the palliative phase: Basis - or bias - for individualised care.","authors":"Katrine Staats, Sandra Jahr Svendsen, Veronica Lockertsen","doi":"10.1177/26323524261426398","DOIUrl":"https://doi.org/10.1177/26323524261426398","url":null,"abstract":"<p><strong>Background: </strong>An ageing population has increased the need for home-based palliative care. General practitioners (GPs) are central to continuity of care, yet time pressure and organisational constraints can challenge person-centred practice grounded in relational familiarity with patients and families.</p><p><strong>Objectives: </strong>This study aims to explore how GPs navigate the relational familiarity in home-based palliative care and whether it functions as a basis or a bias for individualised care.</p><p><strong>Design and methods: </strong>A secondary hermeneutic analysis was conducted, utilising data from two qualitative studies involving 21 GPs. These datasets focused on dignity-preserving care and shared decision making in palliative contexts. The hermeneutic circle was applied in an iterative process to interpret the in-depth interviews and focus group discussions.</p><p><strong>Study design: </strong>A qualitative, explorative, and descriptive design grounded in hermeneutic methodology.</p><p><strong>Results: </strong>Two overarching themes emerged: (1) Relational familiarity: A cornerstone of complex dimensions, where familiarity enabled trust, continuity and tailored care; however, it also created overfamiliarity that narrows perspective, blurs boundaries and burdens GPs. (2) Variability in engagement and follow-up, which reflected differences in individual GPs' interests, systemic constraints and the involvement of other healthcare professionals. While relational familiarity facilitated person-centred care, it was unevenly distributed, creating disparities in the quality of care.</p><p><strong>Conclusion: </strong>Relational familiarity is key to person-centred palliative care, fostering trust and continuity. However, it can blur boundaries, create emotional strain and contribute to inequities compounded by systemic challenges. Interdisciplinary collaboration and flexible care models are needed to adapt to patient needs and ensure equitable access. Future research should examine the impact of relational familiarity and the role of systemic reforms to enhance palliative care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261426398"},"PeriodicalIF":2.2,"publicationDate":"2026-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12953955/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147356943","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":"Affective dimensions of self-efficacy in palliative and end-of-life care: A cross-cultural reflection on the study by Natuhwera et al. (2025).","authors":"Elia Firda Mufidah, Mudhar Mudhar","doi":"10.1177/26323524251400801","DOIUrl":"https://doi.org/10.1177/26323524251400801","url":null,"abstract":"","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524251400801"},"PeriodicalIF":2.2,"publicationDate":"2026-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12949257/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147327343","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":"Translating palliative care narratives into art: An arts-based knowledge translation pilot with young adult artists.","authors":"Kristina A Smith, Philippe Blanchard, Susan Law, Kelli Stajduhar","doi":"10.1177/26323524261423586","DOIUrl":"https://doi.org/10.1177/26323524261423586","url":null,"abstract":"<p><strong>Background: </strong>Cultural silence around death and dying due to fear, anxiety, norms, taboos, and beliefs has led to social initiatives that are more 'death-positive'. This silence has had a disproportionate impact on young adults. 'Death literacy' has emerged to support greater community awareness and understanding of end-of-life care options through education and dialogue. Arts-based approaches may be particularly relevant for young adults, yet research remains limited.</p><p><strong>Objectives: </strong>This knowledge translation project explored arts-based approaches for translating palliative care narrative data into creative forms, examining the feasibility of converting research narratives into accessible art forms that could facilitate engagement with death-related topics.</p><p><strong>Design: </strong>This project employed an arts-based knowledge translation approach, co-designing a course for undergraduate artists with researchers, artists and faculty to translate palliative care narratives.</p><p><strong>Methods: </strong>The course utilized anonymized text from ethnographic research (K.S. PhD data) examining families and healthcare providers navigating paediatric transplant and palliative care, drawing from 145 journal entries by 18 healthcare providers who documented experiences of empathy, illness, suffering and death. Four undergraduate artists created diverse art forms including collages, sketches, digital drawings, storyboards and journey maps.</p><p><strong>Results: </strong>Over 25 artistic works illustrating death and dying experiences were created. The collaborative translation process revealed that undergraduate artists could effectively interpret and visualize complex palliative care narratives through diverse artistic approaches. Course evaluations and informal feedback indicated that artists found the experience meaningful and challenging, and expressed interest in further exploration of death-related topics.</p><p><strong>Conclusion: </strong>The translation process produced accessible visual interpretations of complex illness narratives and, based on course feedback, appeared to facilitate openness to death-related discussions. These findings suggest arts-based translation approaches warrant further exploration as potential tools for enhancing death literacy, with future research needed to systematically evaluate their impact on young adults' comfort and competence with end-of-life topics.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261423586"},"PeriodicalIF":2.2,"publicationDate":"2026-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12936379/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147327356","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}