Palliative & Supportive Care最新文献

{"title":"Exploring palliative and end-of-life care perspectives and lived experiences among generations of African migrants residing outside the continent: A scoping review.","authors":"Salatiel Ngezi, Ashleigh E Butler, Evelien Spelten","doi":"10.1017/S1478951525000070","DOIUrl":"10.1017/S1478951525000070","url":null,"abstract":"<p><strong>Objectives: </strong>This review aimed to chart existing literature and identify gaps in the evidence base concerning palliative and end-of-life care perspectives and experiences among different generations of African migrants residing outside the continent.</p><p><strong>Methods: </strong>This review adhered to a predefined protocol, utilizing the Arksey and O'Malley 5-stage framework, as refined by Danielle Levac and colleagues. A systematic search of 5 bibliographic databases (from inception to December 2022) yielded 79 published studies. After title, abstract, and full-text screening using Covidence®, 7 studies met the inclusion criteria. Data extraction was guided by a conceptual framework tailored to the research topic and questions, with results presented in the narrative form.</p><p><strong>Results: </strong>Cultural and religious beliefs and practices significantly shaped African migrants' perspectives on end-of-life care. A nuanced boundary between palliative and curative care emerged, with the former often stigmatized and stereotypically associated with death and dying. Common barriers to accessing end-of-life care included limited awareness, low literacy, and perceived inadequacy of culturally sensitive care, resulting in disparities in both access and outcomes. Additionally, reluctance to discuss death and dying, along with mistrust of Western healthcare systems, constituted significant obstacles. The studies underscored the necessity of enhancing provider-patient communication by engaging with migrants to raise awareness of services and fostering inclusive healthcare environments for improved care outcomes.</p><p><strong>Significance of results: </strong>Existing research on racial and ethnic disparities underscores the unequal quality and outcomes of end-of-life care across various racial groups. However, there is still insufficient understanding of these diverse end-of-life care needs, particularly in host countries. Bridging this knowledge gap is crucial for reducing health disparities and enhancing the delivery of culturally sensitive care within Western healthcare systems.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e71"},"PeriodicalIF":1.9,"publicationDate":"2025-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143524798","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Families' experiences of end-of-life care in an acute private hospital: A qualitative study.","authors":"Rosemary Saunders, Susan Alexander, Julie Andrew, Anne Wilkinson, Karen Gullick, Ashwini Davray, Manonita Ghosh, Karla Seaman, Michelle Gay","doi":"10.1017/S1478951525000045","DOIUrl":"10.1017/S1478951525000045","url":null,"abstract":"<p><strong>Objectives: </strong>This study explored bereaved relatives' experiences of end-of-life care (EoL care) in the last 3 days in an acute private hospital in Australia.</p><p><strong>Methods: </strong>An interpretative qualitative study was conducted. Semi-structured interviews with 8 bereaved relatives whose family member had died at an acute private hospital shared their experiences of the EoL care during the last 3 days of life. The transcribed interviews were analyzed using inductive thematic analysis.</p><p><strong>Results: </strong>Bereaved family members had mixed experiences, and their primary concerns related to the need for improvements in support for the family; communication; and clinicians partnering with families. The need for family support encompassed care for the person dying and the bereaved relatives, before and during the last days of life, and after death. Bereaved relatives perceived that hospital based EoL care could be positive when the care was collaborative with health professionals, patients, and relatives and there was effective communication.</p><p><strong>Significance of results: </strong>A patient- and family-centered approach to EoL care should be provided in hospitals, and it requires understanding of the needs of both patients and family members, including informational requirements, communication approaches, and care delivery. Health-care organizations have a responsibility to care for families and this must be considered as part of organizational readiness and ongoing assessment to determine if the standards for EoL care are met. The findings serve as a guide for evidence-informed practice and may contribute to the development of resources and guidelines for delivery of quality EoL care.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e72"},"PeriodicalIF":1.9,"publicationDate":"2025-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143524800","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"It seemed I was having a conversation with him\": Posthumous Dignity Therapy case series.","authors":"Miguel Julião, Carolina Simões, Harvey Max Chochinov","doi":"10.1017/S1478951525000173","DOIUrl":"10.1017/S1478951525000173","url":null,"abstract":"<p><strong>Objectives: </strong>Dignity Therapy (DT) is a brief psychotherapeutic intervention designed to address the psychosocial and spiritual needs of terminally ill patients. Research demonstrates DT's efficacy in reducing dignity-related distress and alleviating psychosocial symptoms like depression and anxiety in terminally ill patients. Its application has been extended to nonterminal patients with chronic conditions, mental health challenges, and children nearing the end of life, with promising results. DT also benefits families and caregivers, promoting emotional resilience and facilitating grieving. However, the potential for proxy applications, such as posthumous DT (p-DT) - conducted by relatives after a patient's death or on behalf of individuals unable to participate - remains underexplored.</p><p><strong>Methods: </strong>A case series report.</p><p><strong>Results: </strong>This case series examines 3 relatives who engaged in p-DT, highlighting its feasibility and potential benefits.</p><p><strong>Significance of results: </strong>Findings suggest p-DT may serve as a valuable tool for bereavement support, warranting further research to expand its scope and accessibility.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e66"},"PeriodicalIF":1.9,"publicationDate":"2025-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143524773","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Burden, resources, and needs of patients with severe graft-versus-host disease - A qualitative study.","authors":"Freya Wenzel, Anne Pralong, Christoph Scheid, Marco Herling, Udo Holtick, Steffen T Simon","doi":"10.1017/S147895152400172X","DOIUrl":"https://doi.org/10.1017/S147895152400172X","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e69"},"PeriodicalIF":1.9,"publicationDate":"2025-02-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143517086","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Caregivers influence preferred place of death for patients with an advanced cancer.","authors":"Chetna Malhotra, Shravya Murali, Isha Chaudhry","doi":"10.1017/S1478951524001858","DOIUrl":"10.1017/S1478951524001858","url":null,"abstract":"<p><strong>Objectives: </strong>Family caregivers influence realization of home death among advanced cancer patients. However, little is known about the caregiver factors influencing patients' preferred and actual place of death. We aimed to assess caregiver factors associated with both caregivers' and patients' preferred place of death, and the association between their preferred and actual place of death.</p><p><strong>Methods: </strong>From a prospective cohort of 600 patients with stage IV solid malignancy, and 311 caregivers, we analyzed data for 227 patient-caregiver dyads of deceased patients who responded to the question on preferred place of death for patients at least once within the last 3 years before death. We assessed the association of patients' and caregivers' preferred place of death for patients with caregivers' competency, employment, relationship quality with the patient, their relationship with the patient, family support, and the presence of a domestic helper. We controlled for relevant patient factors and utilized the actor-partner interdependence framework for analysis.</p><p><strong>Results: </strong>Overall, 67% patients and 74% caregivers preferred a home death for patients during the last 3 years prior to patient's death. Patients whose caregivers reported greater caregiving competency were more likely to prefer a home death (average marginal effect: 0.02; 95% confidence interval, 0.003-0.04). Spousal caregivers were less likely to prefer a home death (-0.10 (-0.19, -0.004)). Caregivers lacking family support were more likely to prefer an institutional death (0.04 (0.002-0.08)). While caregivers' preferences had a marginally significant association with patients' actual place of death (<i>p</i>-value < 0.10), we did not find any association between patients' preferred and actual place of death.</p><p><strong>Significance of results: </strong>Caregivers play a crucial role in shaping patients' preferred and actual place of death. Supporting caregivers, particularly spousal caregivers, and enhancing their caregiving competency could potentially help achieve a home death for the patient.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e41"},"PeriodicalIF":1.9,"publicationDate":"2025-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143494247","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Sleep quality, anxiety, and depression in palliative care patients.","authors":"Gülşah Çamcı, Sıdıka Oğuz, Ömer Oktay, Ömürcan Aydın","doi":"10.1017/S1478951525000136","DOIUrl":"10.1017/S1478951525000136","url":null,"abstract":"<p><strong>Objectives: </strong>Sleep problems are common in palliative care patients. In addition, psychological problems can affect sleep quality. The aim of this study was to investigate sleep quality, anxiety, and depression in palliative care patients.</p><p><strong>Methods: </strong>The study was conducted between May 1, 2023 and October 31, 2023 in Turkey. The patient information form, the Pittsburgh Sleep Quality Index (PSQI), and the Hospital Anxiety and Depression Scale (HADS) were used to collect data. The data were analyzed using the Pearson correlation and multiple linear regression test.</p><p><strong>Results: </strong>A total of 59.3% of patients were male, 76.7% were married, 89.3% had poor sleep quality, 61.3% had anxiety, and 86.7% were at risk of depression. A positive moderate correlation was found between HADS-anxiety, HADS-depression, and HADS total with subjective sleep quality. A positive moderate correlation was found between HADS-anxiety, HADS depression, and HADS total with the PSQI total. Sleep latency, sleep duration, sleep disturbances, use of sleep medication, and daytime dysfunction showed a weak positive correlation with HADS-depression and HADS total. In the regression analysis, anxiety proved to be a statistically significant predictor of sleep quality, while depression was not a significant predictor. These variables were found to explain 22% of the total variance in sleep quality.</p><p><strong>Significance of results: </strong>The patients' sleep quality was poor. Anxiety and the risk of depression were high. A positive moderate correlation was found between the total score of sleep quality and anxiety and depression. Anxiety was found to be a statistically significant predictor of sleep quality.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e60"},"PeriodicalIF":1.9,"publicationDate":"2025-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143484482","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Healthcare professionals' discussion of loss and grief with parents of children with life-limiting severe neurological impairment: Findings from a scoping review.","authors":"Elaine Brennan, Marian Mya Clarke, Suzanne Guerin","doi":"10.1017/S1478951524001743","DOIUrl":"10.1017/S1478951524001743","url":null,"abstract":"<p><strong>Objectives: </strong>Parents' experiences of loss and grief in the context of caring for a child with life-limiting severe neurological conditions are complex. Supportive interventions delivered by multidisciplinary teams have the potential to mitigate illness-related and anticipatory grief before and after bereavement. To date, the literature on professionals' discussion of loss and grief with parents has not been synthesized. This systematic review aims to synthesize the evidence to establish what is known about professionals' experience of these discussions with this population, with particular emphasis on timing, frequency, and the setting in which discussions occur.</p><p><strong>Methods: </strong>A scoping review was developed, informed by the Preferred Reporting Items for Systematic Reviews and Meta analyses - Scoping Extension guidelines and the PCC (Population, Concept, Context) framework. Three electronic databases (PsycINFO, CINAHL, and PubMED) were searched using medical subject heading (MeSH) terms and keywords search strings in January 2023. The search was not limited to year of publication. Overall, 35 articles were analyzed using a combination of descriptive analysis and thematic synthesis.</p><p><strong>Results: </strong>Two overarching themes were identified, \"loss and grief are part of this context\" and \"lack of recognition of loss and grief,\" illustrating that despite the lack of evidence of explicit discussion of these issues, some aspects of loss and grief appeared to guide or implicitly influence healthcare professionals' practice. Failure to acknowledge loss and grief was associated with an increase in parental distress and had implications for future care planning.</p><p><strong>Significance of results: </strong>Healthcare professionals are well placed to discuss loss and grief with parents of children with life-limiting severe neurological conditions. However, these discussions are only implicitly reported in the literature. Findings suggest that some professionals avoided discussing loss and grief. Bereavement outcomes are not typically considered in findings of the papers reviewed. Based on these findings, future research should focus on what this means for understanding professionals' capacity to engage with loss and grief.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e58"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469432","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"You sure feel like you're alone, kind of flailing away out there\": Family caregiver perspectives of caring for an individual with glioblastoma multiforme.","authors":"Christy Muasher-Kerwin, Abby Baumbach, Yujun Liu, M Courtney Hughes","doi":"10.1017/S147895152500015X","DOIUrl":"10.1017/S147895152500015X","url":null,"abstract":"<p><strong>Objectives: </strong>Glioblastoma multiforme (GBM) is the most common and aggressive form of brain cancer. Family caregivers of individuals with GBM must navigate a wide range of their care recipients' physical, cognitive, and psychosocial deficits to provide effective care, which is both mentally and physically demanding. This study aimed to investigate the perspectives of family caregivers of GBM patients about the barriers and challenges they encounter when providing care to their care recipients.</p><p><strong>Methods: </strong>Nineteen current and former family caregivers for individuals with GBM participated in semi-structured interviews from October 2023 through January 2024. We conducted interviews virtually and used applied thematic analysis to code transcripts to determine themes among participant responses.</p><p><strong>Results: </strong>Three themes emerged from the interview analysis: (1) overwhelming caregiver burden, (2) difficulties coping with the caregiver role, and (3) gaps in caregiver support. These themes demonstrated a significant physical and mental toll on caregivers and a lack of time for engaging in coping strategies. The family caregivers described a lack of resources, minimal education, and limited time with their medical providers left them feeling ill-prepared for their role. Most family caregivers indicated their care recipients did not use rehabilitation services and the family caregivers expressed confusion about hospice and palliative care.</p><p><strong>Significance of results: </strong>Family caregivers for individuals with GBM desire more straightforward and proactive information and education about their care recipients from their medical providers. There is an opportunity for more utilization of hospice, palliative, and rehabilitation services to provide necessary training to GBM patients and their caregivers.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e62"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143468374","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Asymmetric facial edema with transdermal fentanyl: when listening to patients and caregivers helps to diagnose.","authors":"Carolina Simões, Miguel Julião, Patrícia Calaveiras, Paula Câmara, Eduardo Bruera","doi":"10.1017/S1478951524002177","DOIUrl":"10.1017/S1478951524002177","url":null,"abstract":"<p><strong>Objectives: </strong>Dignity Therapy (DT) is a brief psychotherapeutic intervention designed to address the psychosocial and spiritual needs of terminally ill patients. Research demonstrates DT's efficacy in reducing dignity-related distress and alleviating psychosocial symptoms like depression and anxiety in terminally ill patients. Its application has been extended to non-terminal patients with chronic conditions, mental health challenges, and children nearing the end of life, with promising results. However, the potential for proxy applications, such as posthumous p-DT (p-DT) - conducted by relatives after a patient's death or on behalf of individuals unable to participate - remains underexplored.</p><p><strong>Methods: </strong>A case series report that examines three relatives who engaged in posthumous p-DT, highlighting its feasibility and potential benefits.</p><p><strong>Results: </strong>p-DT seems to benefit families and caregivers, promoting emotional resilience and facilitating grieving.</p><p><strong>Significance of results: </strong>Findings suggest p-DT may serve as a valuable tool for bereavement support, warranting further research to expand its scope and accessibility.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e67"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469215","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Situations in which caregivers and patients are likely to collude: Perspectives from caregivers of advanced cancer patients in Bangladesh.","authors":"Jheelam Biswas, Salma Ahsan Khanam, Md Shamsudduha Tauhid, Shima Rani Sarker, Nahid Afsar, Nashid Islam","doi":"10.1017/S1478951524002074","DOIUrl":"10.1017/S1478951524002074","url":null,"abstract":"<p><strong>Objectives: </strong>This study aimed to explore situations where caregivers and patients are likely to collude, from the perspective of caregivers of advanced cancer patients in Bangladesh.</p><p><strong>Methods: </strong>This study took place in 2 different tertiary care hospitals in Bangladesh. The study design included both quantitative and qualitative components. In this study, we focused on situations in which caregivers choose not to disclose the truth, regardless of their patients' desire to know it. This may include instances of mutual withholding or cases of deliberate withholding by caregivers, even when patients express a desire to know the truth. While collusion may occur in some instances, not all situations qualify as collusion; nonetheless, all of these situations were broadly considered as collusion-prone. The intensity of enactment was assessed using the \"Caregiver Collusion Questionnaire,\" and in-depth exploration of collusion-prone situations was conducted through key person interviews with the caregivers.</p><p><strong>Results: </strong>The intensity of enactment was medium to high among two-thirds (83.1%) of caregivers. This intensity was significantly associated with the caregivers' relationship with the patients and their intention to disclose the truth (<i>p</i> < 0.01). Higher intensity of enactment has been observed among the children who are tending to their terminally ill parents. Four major themes regarding collusion-prone situation were generated by the qualitative analysis: (1) Reasons for nondisclosure; (2) Time of disclosure; (3) Selective disclosure; and (4) Discloser of truth.</p><p><strong>Significance of results: </strong>The nature of collusion-prone situations is shaped by culture and social values. By gradually and indirectly addressing these situations, healthcare professionals can assist families in navigating through difficult conversations and ensure that the patient's wishes and values are respected.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e68"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469446","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}