BMC Palliative Care最新文献

{"title":"The elements of end-of-life care provision in paediatric intensive care units: a systematic integrative review.","authors":"Fanny Adistie, Susan Neilson, Karen L Shaw, Betul Bay, Nikolaos Efstathiou","doi":"10.1186/s12904-024-01512-5","DOIUrl":"10.1186/s12904-024-01512-5","url":null,"abstract":"<p><strong>Background: </strong>Deaths in paediatric intensive care units (PICUs) are not uncommon. End-of-life care in PICUs is generally considered more challenging than other settings since it is framed within a context where care is focused on curative or life-sustaining treatments for children who are seriously ill. This review aimed to identify and synthesise literature related to the essential elements in the provision of end-of-life care in the PICU from the perspectives of both healthcare professionals (HCPs) and families.</p><p><strong>Methods: </strong>A systematic integrative review was conducted by searching EMBASE, CINAHL, MEDLINE, Nursing and Allied Health Database, PsycINFO, Scopus, Web of Science, and Google Scholar databases. Grey literature was searched via Electronic Theses Online Service (EthOS), OpenGrey, Grey literature report. Additionally, hand searches were performed by checking the reference lists of all included papers. Inclusion and exclusion criteria were used to screen retrieved papers by two reviewers independently. The findings were analysed using a constant comparative method.</p><p><strong>Results: </strong>Twenty-one studies met the inclusion criteria. Three elements in end-of-life care provision for children in the PICUs were identified: 1) Assessment of entering the end-of-life stage; 2) Discussion with parents and decision making; 3) End of life care processes, including care provided during the dying phase, care provided at the time of death, and care provided after death.</p><p><strong>Conclusion: </strong>The focus of end-of-life care in PICUs varies depending on HCPs' and families' preferences, at different stages such as during the dying phase, at the time of death, and after the child died. Tailoring end-of-life care to families' beliefs and rituals was acknowledged as important by PICU HCPs. This review also emphasises the importance of HCPs collaborating to provide the optimum end-of-life care in the PICU and involving a palliative care team in end-of-life care.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11271050/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141761943","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Dementia patients in palliative care according to data from the German National Hospice and Palliative Care Register (2009-2021).","authors":"Carolin Donath, Christoph Ostgathe, Maria Heckel","doi":"10.1186/s12904-024-01509-0","DOIUrl":"10.1186/s12904-024-01509-0","url":null,"abstract":"<p><strong>Background: </strong>People with dementia are less in focus of palliative care research than other patient groups even though the awareness of their palliative and end-of-life care needs is rising. Empirical data analyses on people with dementia in palliative care services are lacking.</p><p><strong>Aim: </strong>To explore the prevalence of dementia diagnoses as per the ICD criteria among users of various palliative care settings and to compare use of palliative services, care pathways, and outcomes in people with and without a dementia diagnosis.</p><p><strong>Design: </strong>We conducted retrospective analysis of dementia diagnoses as per ICD (F00-F03/G30) in the German National Hospice and Palliative Care Register between 2009 and 2021. The analysis used methods of descriptive and inferential statistics, including the Bonferroni correction for alpha error inflation.</p><p><strong>Setting/participants: </strong>We limited the analysis to the subsample of people aged over 64.</p><p><strong>Results: </strong>The prevalence of dementia in the different settings of palliative care was lower than in the age-comparable population: Of the 69,116 data sets included in the analysis, a small minority (3.3%) was coded with dementia as the principal diagnosis. Among patients on inpatient palliative care wards, 0.8% (148 of 19,161) had a dementia diagnosis, as did 2.2% (52 of 2,380) of those under hospital palliative care support teams and 4.3% (2,014 of 46,803) of those receiving specialized palliative care at home.</p><p><strong>Conclusions: </strong>The records of the German National Hospice and Palliative Care Register suggest that the prevalence of dementia is lower than one might expect from general population data, though numbers are in line with international studies on proportion of dementia patients receiving palliative care. Future research could usefully examine whether this discrepancy stems either from omissions in coding dementia as patients' principal diagnosis respectively from lapses in documentation of a dementia diagnosis previously made, or from barriers to accessing palliative care services or even displays being excluded from palliative care when trying to access it.</p><p><strong>Trial registration: </strong>No registration.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11271063/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141761940","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Oncologists' palliative care referral behaviour: testing utility of social exchange theory as an explanatory framework.","authors":"Naveen Salins, Sean Hughes, Nancy Preston","doi":"10.1186/s12904-024-01517-0","DOIUrl":"10.1186/s12904-024-01517-0","url":null,"abstract":"<p><strong>Background: </strong>Adults and children with cancer are referred to palliative care infrequently or late. Oncologists often gatekeep these referrals. Social exchange theory is used to explain physician referral behaviour in various clinical settings. Its utility in a cancer palliative care setting is not known.</p><p><strong>Methods: </strong>We used Karl Popper's hypothetico-deductive approach to test the hypothesis. The hypothesis was that social exchange theory is a helpful framework for explaining oncologists' palliative care referral behaviour in a cancer setting. The utility of the theoretical framework was tested against the empiric findings of a systematic review and original research.</p><p><strong>Results: </strong>Most components of social exchange theory known to explain physician referral behaviour like beliefs about the provider or service, emotions triggered during the professional engagement, its symbolism and stigma, the complexity of the referral task, efforts needed to achieve it, its cost, benefit, and value were similar in a cancer setting. Empirical findings suggest that oncologists provided strategies and solutions to better palliative care integration instead of comparing their existing engagement with potential alternatives and choosing them.</p><p><strong>Conclusion: </strong>Social exchange theory was found to be helpful in explaining oncologists' palliative care referral behaviour. To further develop the social exchange theory based on the data used to test it, it is recommended to include feedback and solutions as a component of the theoretical framework alongside a comparison level for alternatives.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11267831/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141761942","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experiences and perceptions of palliative care patients receiving virtual reality therapy: a meta-synthesis of qualitative studies.","authors":"Yufei Huang, Cunqing Deng, Meifang Peng, Yanping Hao","doi":"10.1186/s12904-024-01520-5","DOIUrl":"10.1186/s12904-024-01520-5","url":null,"abstract":"<p><strong>Background: </strong>The combination of virtual reality (VR) and palliative care potentially represents a new opportunity for palliative care. Many previous studies have evaluated the application of VR therapy to patients with advanced disease receiving palliative care. However, patient-perspective reviews to comprehensively understand the actual experiences and feelings of patients and provide practical guidance for designing future studies are currently lacking. This review of qualitative evidence aimed to explore the experiences and perceptions of patients receiving VR therapy in palliative care.</p><p><strong>Methods: </strong>This study was conducted in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement guidelines. Ten databases, namely, PubMed, Web of Science, EBSCO, OVID MEDLINE, Scopus, John Wiley, ProQuest, CNKI, WANFANG DATA, and SinoMed, were searched, and qualitative and mixed studies from the establishment of each database to June 30, 2023 were included. The Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research was used to assess the quality of the included studies. The data included in the literature were analyzed and integrated by \"thematic synthesis\" to formalize the identification and development of themes.</p><p><strong>Results: </strong>The nine selected studies altogether included 156 participants from seven hospice care facilities of different types and two oncology centers. Three key themes were identified: experiences of palliative care patients in VR therapy, the perceived value that palliative care patients gain in VR therapy, and perspectives of palliative care patients toward using VR therapy.</p><p><strong>Conclusions: </strong>The patients' feedback covered discomfort caused by VR devices, good sense of experiences, and situations that affected the interactive experience. Some patients were unable to tolerate VR therapy or reported newer forms of discomfort. The findings indicated that VR therapy may be an effective approach to relieve patients' physical and psychological pain and help them gain self-awareness. Moreover, patients showed a preference for personalized VR therapy.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11267777/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141753175","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A nationwide neurosurgical inter-disciplinary service for cancer-related refractory pain.","authors":"Morsi Khashan, Ido Strauss, Yehonathan Hochberg, Silviu Brill, Rotem Tellem, Haggai Sharon, Uri Hochberg","doi":"10.1186/s12904-024-01501-8","DOIUrl":"10.1186/s12904-024-01501-8","url":null,"abstract":"<p><strong>Purpose: </strong>Neurosurgical ablative procedures, such as cordotomy and cingulotomy, are often considered irreversible and destructive but can provide an effective and individualized solution for cancer-related refractory pain, when all other approaches have been unsuccessful. This paper provides an in-depth exploration of a novel approach to managing refractory cancer pain. It involves an interdisciplinary team led by a neurosurgeon at a renowned national referral center.</p><p><strong>Methods: </strong>a retrospective analysis of the medical records of all sequential patients who underwent their initial evaluation at our interdisciplinary refractory cancer pain clinic from February 2017 to January 2023.</p><p><strong>Results: </strong>A total of 207 patients were examined in the clinic for a first visit during the study period. All patients were referred to the clinic due to severe pain that was deemed refractory by the referring physician. The mean age was 61 ± 12.3 years, with no significant sex difference (P = 0.58). The mean ECOG Performance Status score was 2.35. Conservative measures had not yet been exhausted in 28 patients (14%) and 9 patients were well controlled (4%). Neurosurgical ablative procedures were recommended for 151 (73%) of the patients. Sixty-six patients (32%) eventually underwent the procedure. 91 patients (44%) received a negative recommendation for surgery. Thirty-five patients (17%) were referred for further invasive procedures at the pain clinic.</p><p><strong>Conclusion: </strong>An Interdisciplinary cooperation between palliative care specialists, pain specialists, and neurosurgeons ensures optimal patient selection and provides safe and effective neurosurgery for the treatment of refractory cancer-related pain.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11264704/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141735378","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Building a programme theory of a specialist paediatric palliative and hospice care programme: development process and methodological reflection.","authors":"Martin Wallner, Daniela Haselmayer, Martin Nagl-Cupal, Jasmin Eppel-Meichlinger, Hanna Mayer","doi":"10.1186/s12904-024-01492-6","DOIUrl":"10.1186/s12904-024-01492-6","url":null,"abstract":"<p><strong>Background: </strong>Paediatric palliative and hospice care aims to improve the quality of life of children with life-limiting and life-threatening conditions and their families. The number of these patients has risen significantly in recent years, resulting in an increased need for palliative care for this population. Although the need for paediatric palliative and hospice care is growing, meaningful outcome evaluation to demonstrate its effectiveness as a complex healthcare intervention is in its early stages. For complex interventions (programmes), theory-based evaluations have grown in prominence in recent years. They seek to understand how and why an intervention works by uncovering its underlying mechanisms by means of programme theory. To support both outcome evaluation in paediatric palliative care and a reflective practice of programme theorizing, we aimed to describe the construction of a programme theory for a specialist paediatric palliative and hospice care programme in Austria and to offer a reflective account of its development process.</p><p><strong>Methods: </strong>We drew on a combination of theory-based evaluation frameworks to construct a programme theory consisting of an action and a change component. Through multiple iterations, incorporating different stakeholders' perspectives and drawing on different sources of knowledge and theory, we theorized how and why the programme likely achieves its intended outcomes.</p><p><strong>Results: </strong>The programme theory outlines the proposed chains of events, causal mechanisms and outcomes of a specialist paediatric palliative and hospice care programme for children and families in several areas corresponding to its main conceptual tenets. Through a range of activities and interventions, the programme triggers coping and adaptation mechanisms that ultimately contribute to family and child wellbeing in physical, psychological, social, and spiritual dimensions. Established trust and partnership between children/families and healthcare professionals as well as a person-centered and family-centered approach were identified as enabling factors.</p><p><strong>Conclusions: </strong>Our findings provide insights into how a specialized paediatric palliative and hospice care programme works to achieve its intended outcomes for children and families. This helps demonstrate its impact, contributing to meaningful outcome evaluation and service improvement.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11264908/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141735379","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Collaborative goal setting in palliative rehabilitation: a case report.","authors":"Charlotte Siew Hwee Heng","doi":"10.1186/s12904-024-01506-3","DOIUrl":"10.1186/s12904-024-01506-3","url":null,"abstract":"<p><strong>Background: </strong>Palliative rehabilitation amalgamates the principles of palliative care and rehabilitation to enhance patients' quality of life by optimizing physical function and maximizing autonomy despite advancing illness. Alongside providing non-pharmacological symptom management, it emphasizes personalized goal-setting tailored to individual needs. This case illustrates the transformative impact targeted physiotherapy interventions can have on patients' physical function, morale and motivation in spite of their expected deterioration.</p><p><strong>Case presentation: </strong>An 85-year-old male with angioimmunoblastic T cell lymphoma was admitted to home hospice care. He was referred for physiotherapy to optimize his function and mobility despite his short prognosis. A conversation guide was used throughout the duration of therapy to identify personal goals, prescribe and review the use of appropriate interventions, and discuss future therapeutic plans. Within a month he achieved his functional goals, experienced reduced physical dependency, and had increased satisfaction in his ability to participate more actively in self-care. This also resulted in significant improvements in his confidence, mood, and overall well-being. Engaging the patient actively in his care and management journey provided him with significant motivation and hope.</p><p><strong>Conclusion: </strong>The case study highlights the vital role of physiotherapists in facilitating transparent communication among patients, healthcare providers, and caregivers throughout palliative rehabilitation. Through open dialogue and utilizing conversation guides, physiotherapists help understand patient preferences, goals, and motivation. This patient-centred approach ensures that therapeutic interventions align with individual needs, enhancing overall patient care and the provision of holistic palliative care.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11264784/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141727970","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experience of care from the perspectives of inpatients with palliative care needs: a cross-sectional study using a patient reported experience measure (PREM).","authors":"Gursharan K Singh, Alison Mudge, Robyn Matthews, Patsy Yates, Jane L Phillips, Claudia Virdun","doi":"10.1186/s12904-024-01494-4","DOIUrl":"10.1186/s12904-024-01494-4","url":null,"abstract":"<p><strong>Background: </strong>Improving palliative care for inpatients is urgently needed. Data from patient-reported experience measures (PREM) can assist in identifying areas for focused improvement. This study aimed to describe patient reported experience of care in inpatients with palliative care needs, to inform a baseline understanding of care experience and identify key areas for improvement.</p><p><strong>Methods: </strong>Cross-sectional study design where inpatients with palliative care needs were invited to complete 'consideRATE,' a patient reported experience measure of care, over six months in 2022. Inpatients with palliative care needs receiving care on an oncology, general medicine/renal and general medicine/respiratory ward (n = 3) at an Australian metropolitan hospital were screened for eligibility. Carers could provide proxy responses where inpatients were unable to participate. Descriptive statistics were used to analyse quantitative ratings, whilst free text responses were analysed using integrated thematic analysis.</p><p><strong>Results: </strong>One-hundred and twenty participants (108 patients and 12 carers) completed consideRATE. The questions with the highest number of 'very good' responses were attention to symptoms, attention to feelings and attention to what matters most; the questions with the lowest number of 'very good' responses was attention to patients' affairs, what to expect, and the environment of care. Almost half (n = 57, 48%) indicated that attention to patients' affairs 'did not apply' to their inpatient stay. Analysis of 532 free text responses across 8 questions highlighted the importance of feeling supported, feeling informed, feeling heard and navigating the clinical environment.</p><p><strong>Conclusion: </strong>Enabling inpatients with palliative care needs to provide feedback about their experience of care is one method of ensuring improvements matter to patients. Supporting clinical teams to understand and use these data to make tailored improvements is the next step in this multi-phase research.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11256639/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141724838","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Fluid therapy is associated with lower care quality and higher symptom burden during last days of life of patients with cancer - a population-based register study.","authors":"Magnus Lindskog, Hanna Mogensen, Björn Tavelin, Johanna Eknert, Staffan Lundström, Peter Strang","doi":"10.1186/s12904-024-01504-5","DOIUrl":"10.1186/s12904-024-01504-5","url":null,"abstract":"<p><strong>Background: </strong>Parenteral fluid (PF) therapy of patients in end-of-life (EOL) is controversial. The purpose of this study was to assess associations between PF, quality of the EOL care process and symptom burden in dying cancer patients, using a population-based approach.</p><p><strong>Methods: </strong>This was a nationwide retrospective register study of all adult cancer deaths with documented information on PF in the last 24 h of life as reported to the Swedish Register of Palliative Care during a three-year period (n = 41,709). Prevalence and relief of symptoms during the last week of life as well as EOL care process quality indicators were assessed in relation to PF in those patients who had a documented decision to focus on EOL care (immediately dying, n = 23,112). Odds ratios were calculated, adjusting for place of death (hospital vs. non-hospital).</p><p><strong>Results: </strong>PF was administered to 30.9% of immediately dying patients in hospitals compared to 6.5% outside of hospitals. PF was associated with a higher likelihood for breathlessness and nausea. In patients screened for EOL symptoms with a validated instrument, PF was inversely associated with the likelihood of complete relief of breathlessness, respiratory secretions, anxiety, nausea and pain. Several palliative care quality indicators were inversely associated with PF, including EOL conversations and prescriptions of injectable drugs as needed. These associations were more pronounced in hospitals.</p><p><strong>Conclusions: </strong>Parenteral fluid therapy in the last 24 h of life was associated with inferior quality of the EOL care process and with increased symptom burden in imminently dying cancer patients.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11256446/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141724839","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Living and dying between cultural traditions in African & Caribbean Heritage families: a constructivist grounded theory.","authors":"Joanna De Souza, Karen Gillett, Yakubu Salifu, Catherine Walshe","doi":"10.1186/s12904-024-01503-6","DOIUrl":"10.1186/s12904-024-01503-6","url":null,"abstract":"<p><strong>Background: </strong>Ethnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage. This is a voice not well represented in the current debate on improving end-of-life outcomes.</p><p><strong>Methods: </strong>Using Charmaz's constructivist grounded theory approach, a purposive sample of elders, adult-children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted and analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction.</p><p><strong>Results: </strong>Elders (n = 4), adult-children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created. The constructs are (a) Preparing for death but not for dying (b) Complexity in traditions crosses oceans (c) Living and dying between cultures and traditions (d) There is culture, gender and there is personality (e) Watching the death of another prompts conversations. (f) An experience of Hysteresis.</p><p><strong>Discussion: </strong>African and Caribbean cultures celebrate preparation for after-death processes resulting in early exposure to and opportunities for discussion of these processes. Migration results in reforming of people's habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and related decision making.</p><p><strong>Conclusions: </strong>Recognising the impact of migration on the roles of different family members and the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families of minority ethic heritage facing serious illness. A public health approach focusing on enabling adult-children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11256641/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141724840","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}