Palliative & Supportive Care最新文献

{"title":"Memento mori.","authors":"Ellen Zhang","doi":"10.1017/S1478951525000203","DOIUrl":"https://doi.org/10.1017/S1478951525000203","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e74"},"PeriodicalIF":1.9,"publicationDate":"2025-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143574347","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":"Sharing the burden: The experiences of HIV psychiatrists delivering primary palliative care.","authors":"Sanam Bhatia, Maureen I Ekwebelem, Chloe Nims, Catherine Riffin, M Carrington Reid, Daniel Shalev","doi":"10.1017/S1478951525000124","DOIUrl":"10.1017/S1478951525000124","url":null,"abstract":"<p><strong>Objectives: </strong>People living with HIV experience an elevated risk of serious medical illnesses as they age, but access palliative care (PC) at lower rates than individuals without HIV. HIV psychiatrists provide longitudinal psychosocial care to individuals living with HIV. As such, HIV psychiatrists can play an important role in providing PC to people living with HIV (PLWH). This qualitative study was conducted to explore the perspectives and experiences of HIV psychiatrists in addressing the PC of PLWH.</p><p><strong>Methods: </strong>We conducted semi-structured interviews with HIV psychiatrists. Data were analyzed using thematic analysis.</p><p><strong>Results: </strong>Nineteen HIV psychiatrists were interviewed. Three core themes with several subthemes were identified. These were: (1) lack of an operationalized role for HIV psychiatrists in supporting PC provision, (2) heterogeneity in engagement with PC among HIV psychiatrists, and (3) HIV psychiatrists have valuable skills to address patients' PC needs but also face unique challenges in doing so.</p><p><strong>Significance of results: </strong>Overall, we found that there is significant heterogeneity in how HIV psychiatrists provide PC. Psychiatrists were interested in engagement with PC but felt their roles and scope were poorly defined. This study points to the possibility for greater integration of HIV psychiatrists in the provision of PC for patients with HIV through improvements in PC training for psychiatrists who work with patients with medical illness and through a more operationalized role and scope of practice in this domain of care.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e73"},"PeriodicalIF":1.9,"publicationDate":"2025-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11893077/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143574349","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the challenges experienced by patients and families using palliative and end-of-life care services: A qualitative focus group study.","authors":"Gina Kallis, Gary Hodge, Hannah Wheat, Tomasina M Oh, Susie Pearce","doi":"10.1017/S1478951525000057","DOIUrl":"https://doi.org/10.1017/S1478951525000057","url":null,"abstract":"<p><strong>Objectives: </strong>In the UK, access to dignified and compassionate palliative care is increasingly being reported as inadequate. This is a particular issue in South-West England, where there is an ageing population, historical lack of research, and particular challenges due to its rural and coastal location. The aim of this study was to provide a holistic view of patient and family experiences of care toward the end-of-life in this location and to collaboratively identify the challenges they face.</p><p><strong>Methods: </strong>Six qualitative focus groups were held with people who were toward the end of their life, family/carers, and people who were bereaved. Participants were recruited via hospice networks. Most focus groups were face-to-face, and all were facilitated by two researchers.</p><p><strong>Results: </strong>A range of challenges were identified at different stages of the patient and family carer journey near the end-of-life. These included issues related to the delivery of care, such as communication challenges, a lack of out of hours care, and also a lack of personalized care. Patients and families also experienced everyday challenges due to the impact of living with a life-shortening condition and altered family dynamics as family members became carers. There were also some traumatic experiences of death and a sense of abandonment when care could not be accessed.</p><p><strong>Significance of results: </strong>This study provides a core first step in developing partnership working with members of the public, which can be built upon to develop future research agendas. This work has identified areas for improvement, so that ultimately, end-of-life experience for the individual, their carers, and families can be improved.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e70"},"PeriodicalIF":1.9,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143537925","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":"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":"https://doi.org/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":"\"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":"https://doi.org/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":"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":"https://doi.org/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":"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":"https://doi.org/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":"https://doi.org/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":"https://doi.org/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}