Palliative Medicine最新文献

{"title":"Evaluation of the integration of palliative care in a fragile setting amongst host and refugee communities: Using consecutive rapid participatory appraisals.","authors":"Mhoira Leng, Julia Downing, Gursaran Purewal, Liz Namukwaya, Vicky Opia, Chitra Venkateswaran, Elizabeth Nabirye, Peace Bagasha","doi":"10.1177/02692163241269129","DOIUrl":"10.1177/02692163241269129","url":null,"abstract":"<p><strong>Background: </strong>Palliative care is seldom integrated in healthcare in fragile, conflict affected and vulnerable settings with significant refugee populations.</p><p><strong>Aim: </strong>This study aimed to evaluate the integration of palliative care into a fragile, conflict affected and vulnerable community in Northern Uganda.</p><p><strong>Design: </strong>Consecutive Rapid Participatory Appraisals were conducted to evaluate the integration of palliative care in Adjumani District. The first established a baseline and the second, 4 years later, evaluated progress. Data collection included documentary review, key informant interviews and direct observation.</p><p><strong>Setting/participants: </strong>A rural district in Uganda with equal numbers of refugees and host populations living side-by-side. 104 key informants were interviewed, and practice observed in 11 health facilities.</p><p><strong>Results: </strong>At baseline, palliative care was not routinely integrated in the health system. Barriers included health system challenges, cultural beliefs, understanding and trust, mental health issues, gaps in palliative care provision, the role of the community and beliefs about illness impacted care with the village health teams being a trusted part of the health system. Following integration activities including training, mentorship and community sensitisation, the repeat rapid appraisal after 4 years showed a significant increase in palliative care delivery. New themes identified included increased provision of palliative care, the impact of training and community engagement and ownership of palliative care.</p><p><strong>Conclusion: </strong>Community engagement and participation, training interventions and referral pathways enabled the integration of palliative care. Rapid Participatory Appraisal provides a useful framework to evaluate activities aimed at integration of palliative care in a community.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"818-829"},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142154775","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Electronic symptom monitoring for home-based palliative care: A systematic review.","authors":"Suning Mao, Liu Liu, Cheng Miao, Tianyi Wang, Yue Chen, Zhishen Jiang, Chengge Hua, Chunjie Li, Yubin Cao","doi":"10.1177/02692163241257578","DOIUrl":"10.1177/02692163241257578","url":null,"abstract":"<p><strong>Background: </strong>Coordination and communication challenges in home-based palliative care complicate transitions from hospital care. Electronic symptom monitoring enables real-time data collection, enhancing patient-provider communication. However, a systematic evaluation of its effectiveness in home-based palliative care is lacking.</p><p><strong>Aim: </strong>To analyze the feasibility, effectiveness, and limitations of electronic symptom monitoring in home-based palliative care, assess the evidence quality, identify the evidence gap, and suggest implications for future research and practice.</p><p><strong>Design: </strong>This study uses systematic review, meta-analysis, and narrative synthesis (CRD42023457977) to analyze relevant studies until September 2023.</p><p><strong>Data sources: </strong>Electronic searches in MEDLINE, CENTRAL, and Embase until September 2023, complemented by hand-searching of references and citations.</p><p><strong>Results: </strong>This study included twenty studies. The majority of patients positively engage in electronic symptom monitoring, which could improve their quality of life, physical and emotional well-being, and symptom scores without a significant increase in costs. However, firm conclusions about the effects of electronic symptom monitoring on outcomes like survival, hospital admissions, length of stay, emergency visits, and adverse events were limited due to significant variability in the reported data or inadequate statistical power.</p><p><strong>Conclusion: </strong>Introducing electronic symptom monitoring in home-based palliative care holds potential for enhancing patient-reported outcomes, potentially decreasing hospital visits and costs. However, inconsistency in current studies arising from diverse monitoring systems obstructs comparability. To advance, future high-quality research should employ standardized follow-up periods and established scales to better grasp the benefits of electronic symptom monitoring in home-based palliative care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"790-805"},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141248289","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Mapping primary and generalist palliative care: Taking a closer look at the base of the pyramid.","authors":"Jose Pereira, Leonie Herx, Jennifer Simoni, Christopher A Klinger","doi":"10.1177/02692163241265255","DOIUrl":"10.1177/02692163241265255","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"770-775"},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141788823","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of a palliative paramedicine framework to standardise best practice: A Delphi study.","authors":"Madeleine L Juhrmann, Phyllis N Butow, Paul Simpson, Mark Boughey, Meredith Makeham, Josephine M Clayton","doi":"10.1177/02692163241234004","DOIUrl":"10.1177/02692163241234004","url":null,"abstract":"<p><strong>Background: </strong>Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels.</p><p><strong>Aim: </strong>To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia.</p><p><strong>Design: </strong>Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken.</p><p><strong>Setting/participants: </strong>Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine.</p><p><strong>Results: </strong>Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework.</p><p><strong>Conclusion: </strong>This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"853-873"},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11457439/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140120315","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":"Defining and developing primary palliative care as an essential element of primary health care.","authors":"Daniel Munday, Tania Pastrana, Scott A Murray","doi":"10.1177/02692163241270915","DOIUrl":"10.1177/02692163241270915","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"766-769"},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11528942/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142000538","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":"How do primary care clinicians approach hospital admission decisions for people in the final year of life? A systematic review and narrative synthesis.","authors":"Rachel Davies, Matthew Booker, Jonathan Ives, Alyson Huntley","doi":"10.1177/02692163241269671","DOIUrl":"10.1177/02692163241269671","url":null,"abstract":"<p><strong>Background: </strong>The final year of life is often associated with increasing health complexities and use of health services. This frequently includes admission to an acute hospital which may or may not convey overall benefit. This uncertainty makes decisions regarding admission complex for clinicians. There is evidence of much variation in approaches to admission.</p><p><strong>Aims: </strong>To explore how Primary Care clinicians approach hospitalisation decisions for people in the final year of life.</p><p><strong>Design: </strong>Systematic literature review and narrative synthesis.</p><p><strong>Data sources: </strong>We searched the following databases from inception to April 2023: CINAHL, Cochrane Library, Embase, MedLine, PsychInfo and Web of Science followed by reference and forward citation reviews of included records.</p><p><strong>Results: </strong>A total of 18 studies were included: 14 qualitative, 3 quantitative and 1 mixed methods study. As most of the results were qualitative, we performed a thematic analysis with narrative synthesis. Six key themes were identified: navigating the views of other stakeholders; clinician attributes; clinician interpretation of events; the perceived adequacy of the current setting and the alternatives; system factors and continuity of care.</p><p><strong>Conclusion: </strong>This review shows that a breadth of factors influence hospitalisation decisions. The views of other stakeholders take great importance but it is not clear how these views are, or should be, should be balanced. Clinician factors, such as experience with palliative care and clinical judgement, are also important. Future research should focus on how different aspects of the decision are balanced and to consider if, and how, this could be improved to optimise patient-centred outcomes and use of health resources.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"806-817"},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11447985/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142036607","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":"Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops.","authors":"Sarah Mitchell, Nicola Turner, Kate Fryer, Justin Aunger, Jude Beng, Emilie Couchman, Isabel Leach, Joanne Bayly, Clare Gardiner, Katherine E Sleeman, Catherine J Evans","doi":"10.1177/02692163241248962","DOIUrl":"10.1177/02692163241248962","url":null,"abstract":"<p><strong>Background: </strong>Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare.</p><p><strong>Aim: </strong>To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?'</p><p><strong>Design: </strong>A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs).</p><p><strong>Findings: </strong>A total of 27 participants attended online workshops (July and September 2022): patient and public members (<i>n</i> = 6), commissioners (<i>n</i> = 2), primary care (<i>n</i> = 5) and specialist palliative care professionals (<i>n</i> = 14). Most were White British (<i>n</i> = 22), other ethnicities were Asian (<i>n</i> = 3), Black African (<i>n</i> = 1) and British mixed race (<i>n</i> = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements.</p><p><strong>Conclusions: </strong>Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"830-841"},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11448105/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140909045","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":"'It was never about me': A qualitative inquiry into the experiences of psychological support and perceived support needs of family caregivers of people with high-grade glioma.","authors":"Katarzyna M Lion, Anthony Jamieson, Abigail Billin, Stephanie Jones, Mark B Pinkham, Tamara Ownsworth","doi":"10.1177/02692163241261211","DOIUrl":"10.1177/02692163241261211","url":null,"abstract":"<p><strong>Background: </strong>Family caregivers of people with high-grade glioma often report high rates of psychological distress, which has been attributed to the unique aspects of the disease and onerous care demands. Clinical practice guidelines advocate for caregiver support from diagnosis through to end-of-life and bereavement. Yet, research has identified that caregivers' support needs are often overlooked.</p><p><strong>Aim: </strong>To explore caregivers' experiences of psychological support and perceptions of what constitutes optimal psychological support for caregivers in the context of high-grade glioma.</p><p><strong>Design: </strong>Qualitative study involving semi-structured interviews with data analysed using reflexive thematic analysis.</p><p><strong>Setting/participants: </strong>Eighteen current (<i>n</i> = 11) and bereaved (<i>n</i> = 7) family caregivers (73% female, aged 33-69 years) of adults with high-grade glioma participated. Interviews explored caregivers' perceptions of psychological support.</p><p><strong>Results: </strong>Two major themes were generated. The first theme, 'It was never about me', reflected caregivers prioritise for people with high-grade glioma to be well supported despite experiencing their own unmet psychological support needs. The second theme, 'Continuous, coordinated and personalised support', highlighted the importance of timely and tailored interventions addressing caregivers' practical, educational and emotional support needs throughout the illness journey.</p><p><strong>Conclusions: </strong>Caregivers commonly prioritise the support needs of people with high-grade gliomas; yet, have their own distinct needs that vary throughout the illness. Primary care providers have a potential role in facilitating timely access to palliative care, practical support and brain tumour-specific psychological support to meet caregivers' diverse needs across the care continuum in the context of high-grade glioma.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"874-883"},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141446739","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Primary palliative care: Onwards and upwards!","authors":"Scott A Murray, Tania Pastrana","doi":"10.1177/02692163241271049","DOIUrl":"10.1177/02692163241271049","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"762-765"},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11528922/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142154776","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 systematic review on the impact of financial insecurity on the physical and psychological well-being for people living with terminal illness.","authors":"Ross Walker-Pow, Andrea Bruun, Nuriye Kupeli, Alessandro Bosco, Nicola White","doi":"10.1177/02692163241257583","DOIUrl":"10.1177/02692163241257583","url":null,"abstract":"<p><strong>Background: </strong>People living with terminal illness are at higher risk of experiencing financial insecurity. The variance in definitions of financial insecurity, in addition to its impact on the well-being of this population has not yet been systematically analysed.</p><p><strong>Aim: </strong>To understand the definition, prevalence and impact of financial insecurity on the physical and psychological well-being of people living with terminal illness.</p><p><strong>Design: </strong>A systematic review with a narrative synthesis (prospectively registered; CRD42023404516).</p><p><strong>Data sources: </strong>Medline, Embase, CINAHL, AMED, PsycINFO, ProQuest Central and Cochrane Central Register of Controlled Trials, from inception to May 2023. Included studies had to measure or describe the impact of financial insecurity on an aspect of participants' physical or mental well-being. Study quality was assessed using the Hawker tool.</p><p><strong>Results: </strong>A total of 26 studies were included in the review. Financial insecurity was defined using many different definitions and terminology. Out of 4824 participants, 1126 (23%) reported experiencing high levels of financial insecurity. Nine studies reported 21 unique analyses across three domains of physical well-being. Out of those 21 analyses, 10 (48%) reported a negative result (an increase in financial insecurity was reported with a decrease in physical well-being). Twenty-one studies reported 51 unique analyses across nine domains of psychological well-being. Out of these analyses, 35 (69%) reported a negative result (an increase in financial insecurity was reported with a decrease in psychological well-being).</p><p><strong>Conclusions: </strong>People living with terminal illness require support with their financial situation to ensure their well-being is not negatively impacted by financial insecurity.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"692-710"},"PeriodicalIF":3.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11290032/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141248330","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}