Palliative Medicine最新文献

{"title":"Palliative care experts' relative importance of end-of-life care quality indicators: Findings from a discrete choice experiment.","authors":"Eric Andrew Finkelstein, Juan Marcos Gonzalez Sepulveda","doi":"10.1177/02692163251366092","DOIUrl":"https://doi.org/10.1177/02692163251366092","url":null,"abstract":"<p><strong>Background: </strong>End-of-life care delivery is shaped by subject matter experts who influence treatment decisions, policies, and programs and set guidelines that inform end-of-life care practices. However, little is known about what these experts view as most important when delivering high quality end-of-life care.</p><p><strong>Aim: </strong>To quantify the relative value that experts place on 13 key indicators of care quality at end-of-life and to assess whether preferences vary across high- and low/middle income countries.</p><p><strong>Design: </strong>Cross-sectional survey using a discrete choice experiment that asks respondents to trade-off between three hypothetical care providers with varying ratings across indicators, based on a five-star rating system. Mixed logit regression analysis was used to estimate the relative importance for each indicator, such that the sum across indicators totals 100%.</p><p><strong>Participants: </strong>A total of 193 experts from 121 countries.</p><p><strong>Results: </strong>Experts placed greatest relative importance on managing pain and discomfort (19.0%), quality of life extending treatments (10.0%), treating patients kindly (9.1%), and ensuring costs are not a barrier to treatment (8.7%). They placed least emphasis on non-medical concerns (3.7%) and spiritual needs (2.2%). No differences were found between respondents from high- and low/middle income countries.</p><p><strong>Conclusion: </strong>These results reinforce the importance of pain management as the most important indicator of end-of-life quality. Results further suggest that excessive emphasis on life extension may not be the best use of scarce resources and greater value may be achieved by focusing on other aspects of end-of-life care quality. These results hold for both high- and low/middle income countries.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251366092"},"PeriodicalIF":3.9,"publicationDate":"2025-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145239428","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":"Telepalliation creates a sense of security: A qualitative study of patients with cancer receiving palliative care.","authors":"Jarl Voss Andersen Sigaard, Elisabet Dortea Ragnvaldsdóttir Joensen, Una Rósa Birgisdóttir, Helle Spindler, Birthe Dinesen","doi":"10.1177/02692163251364145","DOIUrl":"https://doi.org/10.1177/02692163251364145","url":null,"abstract":"<p><strong>Background: </strong>With the aging population and increasing prevalence of chronic illnesses, the demand for palliative care is rising. However, only a small percentage of patients in need receive palliative care. Many prefer home-based care, valuing continuous support and communication from healthcare professionals. Telepalliative care, utilizing telehealth technology, may enhance home-based palliative care by improving access to professionals, facilitating communication, and offering a cost-effective approach.</p><p><strong>Aim: </strong>The aim of this study was to explore patients' experiences with the functionality of the Telepalliation program while receiving specialized palliative care.</p><p><strong>Design: </strong>Qualitative sub-study within the multimethod randomized control trial (RCT) on the Telepal platform (ClinicalTrials.gov: NCT04995848) using semi-structured individual interviews inspired by Brinkmann & Kvale. Data was thematically coded using NVIVO 12.0 software.</p><p><strong>Setting/participants: </strong>The study was conducted at the University Hospital of Southern Denmark. Eighteen were randomly selected for interviews. Eligible patients were over 18, receiving specialized palliative care, and diagnosed with cancer, terminal heart failure, chronic obstructive pulmonary disease, or motor neuron disease.</p><p><strong>Results: </strong>Four key themes emerged: \"Sense of coherence,\" \"Telepal platform,\" \"Roles of spouse/partner and relatives,\" and \"Cross-sector collaboration.\" The program improved patients' sense of security and coherence by enhancing communication with healthcare professionals. Some challenges arose due to fatigue and questionnaire volume. The platform also successfully integrated relatives into the care process.</p><p><strong>Conclusions: </strong>The Telepal program enhanced communication, continuity, and personalized care, improving the sense of security for patients and families, though some patients faced challenges with fatigue and questionnaire burden.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251364145"},"PeriodicalIF":3.9,"publicationDate":"2025-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145239467","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":"Fear of suffocation in patients hospitalized with chronic respiratory disease: Results from a flashmob trial.","authors":"Kris Mooren, Marcel van Dijk, Olaf Geerse, Manon Wubbels, Yvonne Engels","doi":"10.1177/02692163251363437","DOIUrl":"10.1177/02692163251363437","url":null,"abstract":"<p><strong>Background: </strong>In patients suffering from chronic respiratory diseases, the prevalence of comorbid anxiety disorder is higher compared to controls. A specific form of anxiety in respiratory patients is fear of suffocation. This fear has been explored in qualitative studies on the experience of dyspnea in chronic obstructive pulmonary disease (COPD) and interstitial lung disease. However, its prevalence in respiratory patients is unknown.</p><p><strong>Aim: </strong>We aimed to assess the prevalence of fear of suffocation among patients with respiratory disease.</p><p><strong>Design: </strong>Flashmob research (prospective data collection by a large group of researchers within a short time frame). Participants were asked if they had ever been afraid of suffocation in relation to their disease, and whether they had discussed this fear with their healthcare provider.</p><p><strong>Setting/participants: </strong>Thirty hospitals across the Netherlands included hospitalized adults diagnosed with COPD, asthma, lung cancer, or interstitial lung disease on a single day. Exclusion criteria were language barriers, impaired cognition, or if the staff deemed the interview too stressful at that time.</p><p><strong>Results: </strong>Out of 246 eligible patients, 163 (66%) participated. Of these patients, 58% had COPD, 17% asthma, 4% interstitial lung disease, and 21% had lung cancer. Most patients had experienced fear of suffocation (57%), with the highest prevalence among those with COPD (63%) and asthma (64%). Notably, only 38% of patients who experienced this fear had discussed this with a healthcare provider.</p><p><strong>Conclusions: </strong>This study underscores the high prevalence of fear of suffocation among patients with respiratory disease and highlights the potential value of clinician awareness.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1018-1020"},"PeriodicalIF":3.9,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144964177","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":"Unpaid care, time taken off work and healthcare costs before and after partner bereavement among same-gender and different-gender partners: A national population-based study.","authors":"Katherine Bristowe, Peter May, Alexandra Pitman, Jingjing Jiang, Liadh Timmins, Michael King, Debbie Braybrook, Steve Marshall, Elizabeth Day, Paul Clift, Ruth Rose, Katherine Johnson, Kathryn Almack, Richard Harding","doi":"10.1177/02692163251355796","DOIUrl":"10.1177/02692163251355796","url":null,"abstract":"<p><strong>Background: </strong>Recent research has demonstrated higher levels of psychological distress for bereaved same-gender partners compared to different-gender partners. Economic outcomes have not yet been examined.</p><p><strong>Aim: </strong>To examine whether there are differences between same- and different-gender civil partners or spouses (hereafter 'partners') in the amount of unpaid care provided in the 3 months pre-bereavement, and time taken off work and formal healthcare used in the 3 months pre- or post-bereavement.</p><p><strong>Design: </strong>A population-based cross-sectional survey of bereaved partners from England/Wales was conducted including three economic outcomes of interest: unpaid care, time taken off work, and formal healthcare used. We estimated formal healthcare costs using reference costs. We balanced groups on sociodemographic characteristics using propensity score weights and estimated average marginal difference in outcomes between groups using multivariable regressions.</p><p><strong>Setting/participants: </strong>There were 542 complete cases for primary analysis (220 same-gender partners, 322 different-gender partners).</p><p><strong>Results: </strong>Same- and different-gender partners provided very high levels of unpaid care pre-bereavement (mean 122 h/week). Of those in paid employment, 85% missed some work pre- and post-bereavement. Same-gender partners had higher formal healthcare costs post-bereavement (+£79, 95% CI: +2 to +156). There were no other significant differences between groups.</p><p><strong>Conclusion: </strong>The economic burdens of bereavement are substantial. Same-gender partners were associated with more formal healthcare use than different-gender partners post-bereavement, possibly connected to higher levels of psychological distress. Future research should consider longer-term impacts of partner bereavement on health outcomes, explore whether care services are experienced as inclusive, and target ethnically diverse and gender diverse communities.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"977-986"},"PeriodicalIF":3.9,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12476458/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144859531","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":"Does the Carer Support Needs Assessment Tool (CSNAT) cover the support needs of young carers? A systematic literature search and narrative review.","authors":"Yuen Ki Fung, A Carole Gardener, Morag Farquhar","doi":"10.1177/02692163251363476","DOIUrl":"10.1177/02692163251363476","url":null,"abstract":"<p><strong>Background: </strong>Young carers support family members with a range of health issues but with known detrimental impacts on young carers themselves suggesting they require support. The Carer Support Needs Assessment Tool (v3.0) is a well-established tool enabling unpaid/family carers to identify and express their support needs to healthcare professionals. However its comprehensiveness for young carers is unknown.</p><p><strong>Aim: </strong>To explore whether the Carer Support Needs Assessment Tool (v3.0) covers the support needs of young carers identified within published literature.</p><p><strong>Design: </strong>Systematic literature search and narrative review. English language studies were identified against predetermined inclusion/exclusion criteria through searching databases and reference lists of included papers. Papers were critically appraised, and data extracted and synthesised by three reviewers. Identified needs were mapped to the Carer Support Needs Assessment Tool (v3.0) questions.</p><p><strong>Data sources: </strong>CINAHL (EBSCO), EMBASE (Ovid), Applied Social Science Index and Abstract, Medline (EBSCO), American Psychological Association, PsycINFO and the Cochrane Database of Systematic Reviews (January 2010-December 2024).</p><p><strong>Result: </strong>Thirty-four papers were included. Synthesis of findings confirmed that young carers have (often unmet) support needs relating to information, emotional distress, relationships (including parent-child relationships), accessing services and education. Mapping these to the Carer Support Needs Assessment Tool (v3.0) questions suggested it requires adapting to ensure coverage of education and parent-child relationships.</p><p><strong>Conclusion: </strong>Young carers can require support across many areas, suggesting they would benefit from identifying and expressing their needs to healthcare professionals. The Carer Support Needs Assessment Tool Intervention could enable this but requires identified adaptations to the v3.0 tool.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"965-976"},"PeriodicalIF":3.9,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144964153","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 palliative care for people living with advanced cancer in phase 1 clinical trials: A scoping review.","authors":"Diego Candelmi, Alazne Belar, Carla Zapata Del Mar, Ana Landa-Magdalena, Anna Vilalta-Lacarra, Mariano Ponz-Sarvisé, Carlos Centeno","doi":"10.1177/02692163251362571","DOIUrl":"10.1177/02692163251362571","url":null,"abstract":"<p><strong>Background: </strong>Phase 1 cancer clinical trials offer potential disease modifying treatments for patients with advanced cancer who have not responded to standard treatments. These patients also experience palliative care needs that should be addressed. However, misunderstandings may arise between the goals of experimental treatments and the goals of palliative care, especially when the latter focuses on quality of life.</p><p><strong>Aim: </strong>This study aimed to map the existing literature on the provision and integration of palliative care within phase 1 clinical trials, identifying knowledge gaps and informing future research.</p><p><strong>Design: </strong>A systematic scoping review.</p><p><strong>Data sources: </strong>Studies published from 2003 to 2023 were identified through searches in PubMed, Web of Science, Scopus, CINAHL, PsycINFO and Google Scholar, focussing on people living with advanced cancer enrolled in phase 1 clinical trials.</p><p><strong>Results: </strong>Fifty studies were included from 452 screened. Key results revealed patients' limited life expectancy, high symptom burden, distress and unmet spiritual needs. Notably, patients were reluctant to seek prognostic information or engage in end-of-life discussions, complicating advance care planning. End-of-life care involved frequent unscheduled hospital admissions, hospital deaths and late hospice-care referrals. Caregivers experienced significant distress, while healthcare professionals faced barriers to integrating palliative care. Palliative care interventions varied widely in approaches, settings and outcomes.</p><p><strong>Conclusion: </strong>This review highlights the unique needs of patients and caregivers in Phase 1 Cancer Clinical Trials and the complexities of integrating palliative care. Future research should focus on integrating specialised palliative care into oncology trials and developing standardised guidelines for clinical trial units.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"936-947"},"PeriodicalIF":3.9,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145001264","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":"Too vulnerable? Successful practices for conducting research with children and young people who have life-limiting or life-threatening illness.","authors":"Eve Namisango, Marie Friedel, Sema Yurduşen, Waleed Alrjoub, Debbie Braybrook, Ghadeer Alarjeh, Anna Roach, Sabah Boufkhed, Bobbie Farsides, Lucy Coombes, Richard Harding","doi":"10.1177/02692163251362046","DOIUrl":"10.1177/02692163251362046","url":null,"abstract":"<p><strong>Background: </strong>A dearth of evidence exists on how to include children and young people in palliative care research.</p><p><strong>Aim: </strong>We aimed to identify successful practices in involvement, recruitment and data collection with children and young people with life-limiting illness in research.</p><p><strong>Design: </strong>We synthesised methods from five primary studies from three geographical regions in which children with life-limiting conditions were recruited and interviewed. Using Expert Elicitation Methodology we identified successful practices in the three areas of involvement, recruitment and data collection. We established consensus on methodological challenges and solutions, and developed 10 recommendations for inclusion in research protocols.</p><p><strong>Setting: </strong>Primary cross-national research in three regions; Middle East (one study), sub-Saharan Africa (one study), Europe (three studies), reporting on studies that recruited <i>N</i> = 244 children aged 5-18 years.</p><p><strong>Results: </strong>Recommendations are: (1) research team supported by advisory group of children for entire research process; (2) appropriate distress protocol tailored to population; (3) opt not to use term 'palliative care' in study materials if significant distress is a risk; (4) be deliberate in purposive sampling to ensure diagnoses heterogeneity where appropriate; (5) age-appropriate information materials pre-tested by children; (6) clinical teams receive training in recruitment; (7) time to build rapport before starting data collection; (8) consider potential biases and advantages of having parent/carer present during interview; (9) use age-appropriate toys/games during interviews; (10) selfcare for researchers to manage distress.</p><p><strong>Conclusions: </strong>These recommendations can guide design and conduct of research, enabling children with life-limiting illness to meaningfully participate and express their views.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1021-1029"},"PeriodicalIF":3.9,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12476484/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145006440","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":"Oxycodone/naloxone PR versus oxycodone PR in advanced cancer: A multi-centre randomised trial (ENhANCE trial).","authors":"Aaron K Wong, Anneke Grobler, Ruwani Mendis, Jennifer Philip, Brian Le","doi":"10.1177/02692163251362563","DOIUrl":"10.1177/02692163251362563","url":null,"abstract":"<p><strong>Background: </strong>Opioid-induced constipation is a common side effect of Oxycodone. Oxycodone/Naloxone Prolonged Release (OXN PR) mitigates opioid-induced constipation in non-cancer pain, however its evidence is limited in people with pain from advanced cancer.</p><p><strong>Aims: </strong>To demonstrate analgesic non-inferiority, and superiority in reducing constipation for Oxycodone/Naloxone Prolonged Release (OXN PR) compared to Oxycodone Prolonged Release (Oxy PR).</p><p><strong>Design: </strong>Multi-centre open-label randomised controlled trial comparing OXN PR to Oxy PR over 5 weeks. The primary aim was to demonstrate analgesic non-inferiority of OXN PR compared to Oxy PR. The secondary aim was to demonstrate superiority of constipation reduction in the OXN PR arm.</p><p><strong>Setting/participants: </strong>Participants with moderate-severe pain (⩾4/10) from advanced cancer were eligible.</p><p><strong>Results: </strong>Thirty seven of planned 96 patients were recruited with the study stopping early due to enrolment challenges during the COVID-19 pandemic. Average pain was -1.5 points (95% CI -3.3; 0.4) favouring the OXN PR arm compared to Oxy PR at 5 weeks, meeting analgesic non-inferiority, defined as falling within a one point non-inferiority margin. The OXN PR arm demonstrated less constipation with a significantly lower Bowel Function Index score (-24.87 (95% CI 47.54; 2.21), <i>p</i> = 0.03) compared to Oxy PR. Adverse effect safety profile favoured OXN PR.</p><p><strong>Conclusions: </strong>OXN PR is non-inferior to Oxy PR in analgesic effectiveness and superior in reducing constipation. These results indicate OXN PR as the choice of opioid preparation in advanced cancer. Future studies may explore adding naloxone to other slow and immediate release opioid preparations.</p><p><strong>Trial registry: </strong>Australian New Zealand Clinical Trials RegistryTrial registration number:ACTRN12619001282178URL of trial registry record:https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377673&isReview=true.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"999-1009"},"PeriodicalIF":3.9,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144964296","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":"Comparison of patient-reported and clinician-assessed pain in hospitalized palliative ward patients: A retrospective observational study.","authors":"Chin-Chu Hsu, Cheng-Fu Lin, Jia-Jyun Wu, Sheng-Yun Lai, Wan-Ting Hsu, Pi-Shan Hsu, Shih-Yi Lin, Yi-Chen Chiu, Wei-Min Chu","doi":"10.1177/02692163251363482","DOIUrl":"10.1177/02692163251363482","url":null,"abstract":"<p><strong>Background: </strong>Pain assessment in palliative care is essential, but differences between patient-reported and clinician-assessed pain can affect care decisions. Identifying factors contributing to these differences can improve pain management.</p><p><strong>Aim: </strong>To investigate the clinical and symptom-related factors associated with variations between patient-reported and clinician-assessed pain among patients admitted to a palliative care ward.</p><p><strong>Design: </strong>A retrospective observational study using palliative care outcomes collaboration instruments was conducted from July 2021 to September 2023.</p><p><strong>Setting/participants: </strong>The study included 755 terminally ill patients admitted to a palliative ward in Taiwan. Pain was assessed daily using the symptom assessment scale for patient-reported pain and the palliative care problem severity score for clinician-assessed pain.</p><p><strong>Results: </strong>Among 755 palliative care patients (median age = 69 years; 59.3% female), 181 were classified into the different group and 574 into the similar group based on initial patient-reported and clinician-assessed pain scores. Patients in the different group were younger, had a higher proportion of cancer diagnoses, and reported significantly higher levels of pain, fatigue, bowel problems, and difficulty sleeping. In multivariate analysis, bowel problems were the only independent factor associated with being in the different group (odds ratio = 1.07; 95% confidence interval = 1.01-1.14; <i>p</i> = 0.025).</p><p><strong>Conclusions: </strong>Patients in the different group exhibited greater symptom burden compared to those in the similar group, particularly in pain, fatigue, and bowel problems. Bowel problems independently predicted differences between patient-reported and clinician-assessed pain scores. These results indicate that differences in pain assessment are linked to the severity and complexity of physical symptoms, reinforcing the need for comprehensive, symptom-based evaluations in palliative care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"1010-1017"},"PeriodicalIF":3.9,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145016063","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":"Caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia: A systematic review of qualitative evidence.","authors":"Oonjee Oh, Connie M Ulrich, Lauren Massimo, George Demiris","doi":"10.1177/02692163251353013","DOIUrl":"10.1177/02692163251353013","url":null,"abstract":"<p><strong>Background: </strong>Despite the increasing prevalence of dementia, persons with dementia often receive suboptimal care near the end of life. In many countries, specialized end-of-life support is offered by hospice. During the transitions to end-of-life care, caregivers play a crucial role in the decision-making and care provision for the persons with dementia. However, caregivers' experiences regarding the initial entry to hospice have not been comprehensively assessed in the dementia context.</p><p><strong>Aim: </strong>To synthesize qualitative evidence on the caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia.</p><p><strong>Design: </strong>Systematic review and thematic synthesisData sources:We conducted a systematic literature search across PubMed, CINAHL, Embase, PsycINFO, and Scopus. We considered articles published between 2009 and 2024 that contained qualitative data on hospice entry collected from dementia caregivers.</p><p><strong>Results: </strong>Twenty-two articles met our study eligibility criteria. Five themes were identified: (a) caregivers' observation and perception of severe stage dementia, (b) whether hospice was the right choice for persons with dementia, (c) burden due to the practical aspects of caregiving, (d) emotions and perception about death and hospice, and (e) guidance and access to hospice. These five themes encompassed 11 facilitators and 15 barriers.</p><p><strong>Conclusions: </strong>Dementia caregivers experience intrapersonal, interpersonal, emotional, logistical, and physical challenges in ensuring quality end-of-life support for their loved one (e.g. limited understanding of end-stage dementia, gatekeeping providers, and family conflicts). The unique needs of caregivers caring for a seriously ill family member with dementia are not being fully addressed by the current available services and policies.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":"39 9","pages":"948-964"},"PeriodicalIF":3.9,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12476476/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145225675","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}