Palliative Medicine最新文献

{"title":"Masculinity and ethnicity in intersection: Implications for men's health and palliative care services.","authors":"Yakubu Salifu, Olufikayo Bamidele","doi":"10.1177/02692163251341116","DOIUrl":"https://doi.org/10.1177/02692163251341116","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251341116"},"PeriodicalIF":3.6,"publicationDate":"2025-05-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144037283","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":"Changes and predictors of resilience among wife and husband caregivers of patients with advanced cancer: A longitudinal study.","authors":"Haiyan Sun, Chintana Wacharasin, Pornpat Hengudomsub, Ayano Nagai","doi":"10.1177/02692163251323118","DOIUrl":"10.1177/02692163251323118","url":null,"abstract":"<p><strong>Background: </strong>Resilience as a dynamic process plays a significant role in caregivers' mental health. Little is known about gender differences in the resilience process and predictors of resilience in spousal caregivers.</p><p><strong>Aim: </strong>To investigate changes in resilience among wives and husbands of patients with advanced cancer over a 6-month posttreatment period, and identify different predictors of resilience between females and males.</p><p><strong>Design: </strong>This longitudinal, observational study was conducted from January to December 2022.</p><p><strong>Setting/participants: </strong>Spousal caregivers of patients with newly diagnosed advanced cancer were recruited from five regional tertiary hospitals in China. There were three assessment points at 1, 3, and 6 months post-initial treatment. The dependent variable was resilience, and five independent repeated variables were investigated.</p><p><strong>Results: </strong>Totally, 179 wife caregivers and 133 husband caregivers were included. Resilience in both wife caregivers and husband caregivers increased over time (Wald χ² = 29.83, <i>p</i> < 0.001) but husbands had higher levels of resilience than wives (Wald χ² = 35.59, <i>p</i> < 0.001). However, there was no interaction between time and gender (Wald χ² = 5.25, <i>p</i> > 0.05). Patient functional status, caregiver burden, social support, coping self-efficacy, and mutuality were predictors of resilience for wife caregivers. Meanwhile, patient functional status, caregiver burden and coping self-efficacy could predict resilience for husband caregivers.</p><p><strong>Conclusions: </strong>Healthcare providers may develop gender-specific interventions to promote resilience in spousal caregivers of patients with advanced cancer. This would improve mental health for caregivers in the process of palliative care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"594-603"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143524064","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":"'Do I actually even need all these tablets?' A qualitative study exploring deprescribing decision-making for people in receipt of palliative care and their family members.","authors":"Anna Robinson-Barella, Charlotte Lucy Richardson, Zana Bayley, Andy Husband, Rona Bojke, Andy Bojke, Rachel Quibell, Lisa Baker, Emma McDougall, Catherine Exley, Barbara Hanratty, Joanna Elverson, Jesse Jansen, Adam Todd","doi":"10.1177/02692163251327900","DOIUrl":"10.1177/02692163251327900","url":null,"abstract":"<p><strong>Background: </strong>For people in receipt of palliative care, where polypharmacy is common and medication burden is high, there remains limited knowledge around the decision-making processes that underpin deprescribing; for example, recent deprescribing studies have focused on wider issues of identifying polypharmacy in palliative care contexts. However, little is known about the specific challenges of, and preferences towards, decision-making to support the deprescribing for people in receipt of palliative care.</p><p><strong>Aim: </strong>To explore decision-making processes that underpin deprescribing approaches, based on the experiences of people in receipt of palliative care, and their family member(s).</p><p><strong>Design: </strong>An explorative qualitative study involving in-person semi-structured interviews, analysed using reflexive thematic analysis.</p><p><strong>Setting/participants: </strong>Twenty-five semi-structured interviews were conducted with people in receipt of palliative care (<i>n</i> = 25), where 12 of these interviews were undertaken as dyads, with both the patient and a family member together. Interviews were undertaken across a range of settings, spanning: hospice outpatient day units (<i>n</i> = 11), hospice inpatient wards (<i>n</i> = 4), care home (<i>n</i> = 1) and patients' own homes (<i>n</i> = 9), and involved people with diverse diagnoses (including: cancer 52%, heart failure 20%, motor neurone disease 12%, pulmonary fibrosis 4% and chronic obstructive pulmonary disease 4%).</p><p><strong>Results: </strong>Two overarching themes were developed - the first reflected the need to address patient understanding by 'laying the foundations of deprescribing decision-making'. The second theme, 'having a voice in deprescribing decision-making', reflected desires to (pro)-actively involve patients and their family member(s) within these processes.</p><p><strong>Conclusion: </strong>There is a need to take a balanced, person-centred and shared approach to deprescribing decision-making for people receiving palliative care. Co-design strategies offer one approach to further explore this.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"543-552"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033382/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143754010","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":"Providing life-sustaining treatments at home for those with Motor Neurone Disease: A qualitative study of bereaved family members' experiences of responsibility.","authors":"Eleanor Wilson, Jonathan Palmer, Georgios Kaltsakas, Jeong-Su Lee, Christina Faull","doi":"10.1177/02692163251327866","DOIUrl":"10.1177/02692163251327866","url":null,"abstract":"<p><strong>Background: </strong>Motor neurone disease is an incurable neurodegenerative condition that progressively impairs motor function. It affects mobility, speech, swallowing and breathing, leading to significant dependence on others. Home mechanical ventilation can alleviate respiratory symptoms and improve survival.</p><p><strong>Aim: </strong>To examine the experiences of bereaved family members involved in the care of someone with motor neurone disease who had died with home mechanical ventilation in place, or following its withdrawal.</p><p><strong>Design: </strong>An interpretive constructivist approach was used to carry out qualitative interviews.</p><p><strong>Setting/participants: </strong>Bereaved family members from England and Wales whose relative had died with ventilation in place, or after withdrawal.</p><p><strong>Results: </strong>Thirty-six bereaved family members took part. Their experiences highlight the extensive responsibilities and emotional burdens of managing home mechanical ventilation. Family members reported feelings of heightened responsibility, distrust in the abilities of professional caregivers, significant impacts on their mental and physical well-being and the ways in which knowledgeable care providers could lift such responsibilities.</p><p><strong>Conclusions: </strong>As the use of technology to sustain life increases, we need to question how much we expect of family members in providing care for those with complex interventions, such as ventilation, at home. This research underscores the critical role family members' play in home care for people with motor neurone disease and calls for a greater understanding of the impacts of maintaining responsibility for life-sustaining treatments. There is a need for better support and training for both family and professional caregivers to alleviate some of the responsibility placed upon family members.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"584-593"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033379/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143676904","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":"Interventions to address supportive care needs of people with pulmonary fibrosis and/or their caregivers: A scoping review.","authors":"Naa-Dromoh Quarshie, Matthew Wells, Giles Dixon, Sarah Mulholland, Sarah Rudd, Anne-Marie Russell, Shaney L Barratt","doi":"10.1177/02692163251326164","DOIUrl":"10.1177/02692163251326164","url":null,"abstract":"<p><strong>Background: </strong>Pulmonary fibrosis is often accompanied by high levels of unmet supportive care needs that impact psycho-social well-being and overall quality of life for both the person with pulmonary fibrosis and their family. The provision of appropriate services to reduce unmet supportive care needs represents a key health care priority.</p><p><strong>Aim: </strong>To provide the first broad-level overview of the available evidence of the characteristics and impact of interventions developed to address unmet supportive care needs in people with pulmonary fibrosis and/or their caregivers.</p><p><strong>Design: </strong>Scoping review. The protocol was registered with Figshare.com (protocol number 25452100).</p><p><strong>Data sources: </strong>Systematic electronic searches were performed in Cochrane Central, EMBASE, Medline, PsysINFO and CINAHL from inception to March 2024 to identify all studies describing interventions to address supportive care needs of people with pulmonary fibrosis and/or their carers.</p><p><strong>Results: </strong>A total of 24 studies (1 abstract and 23 full text studies) met inclusion criteria. There was considerable heterogeneity in interventions described and outcome measures used. Multimodal interventions with a focus on symptom control, quality of life, peer support and psychosocial input appear to be crucial to integrated, effective and patient led supportive care. The generalisability of interventions is limited by small sample size, the use of inconsistent and/or non-validated evaluation measures and study attrition.</p><p><strong>Conclusions: </strong>Further research with greater involvement of key stakeholders is urgently required. Future directions should also assess barriers to supportive care and investigate other avenues such as telehealth or remote delivery to improve access and acceptability.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"604-621"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143743556","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":"The family caregiver-targeted web-based intervention \"narstaende.se\" facilitated everyday life for couples facing life-threatening illness: A qualitative study.","authors":"Cecilia Bauman, Viktoria Wallin, Sandra Doveson, Per Fürst, Peter Hudson, Ulrika Kreicbergs, Anette Alvariza","doi":"10.1177/02692163251327893","DOIUrl":"https://doi.org/10.1177/02692163251327893","url":null,"abstract":"<p><strong>Background: </strong>Life-threatening illness affects both patients and spouses, and spousal caregivers report high levels of distress. Web-based interventions could benefit spouses' and patients' needs and shared everyday life.</p><p><strong>Aim: </strong>To explore how a family caregiver-targeted web-based psychoeducational intervention influences couples' experiences of sharing everyday life at home while facing life-threatening illness.</p><p><strong>Design: </strong>This qualitative sub-study involved dyadic interviews with couples (spouse-patient) where the spouse was allocated to the intervention arm of a randomized controlled trial evaluating a web-based family caregiver-targeted intervention. Data were analyzed using Interpretive description.</p><p><strong>Setting/participants: </strong>Participants were recruited from five specialized home care services in Sweden. In total, 32 participants, spouses (n = 16) and patients (n = 16) were interviewed as couples after the spouse had accessed the intervention for 4 weeks.</p><p><strong>Results: </strong>Couples described how the spouses' access to the intervention had provided knowledge that enhanced the couple's understanding of each other's strategies for managing the impacts of the illness. The topics covered in the intervention prompted the spouses to initiate conversations that helped couples maintain a sense of mutuality. The intervention provided support to balance the tension between previous and new relational roles, which had changed due to the patient's illness.</p><p><strong>Conclusions: </strong>Altogether, the results show that the benefits of family caregiver-targeted interventions may extend from spouse to patient, facilitating their everyday life. Our findings complement previous intervention evaluations by providing insights into how they may be effective. The goal should be that interventions potentially benefit patients and family caregivers.</p><p><strong>Trial registry: </strong>The randomized controlled trial is registered at ClinicalTrials.gov, ID NCT05785494.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":"39 5","pages":"574-583"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033377/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144041361","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":"'Constipation': One word, many meanings amongst persons with cancer: An observational study.","authors":"Andrew Davies, Norah Fagan, Jenny Power, Amy Taylor","doi":"10.1177/02692163251325711","DOIUrl":"10.1177/02692163251325711","url":null,"abstract":"<p><strong>Background: </strong>Constipation is common in people with advanced cancer and is associated with significant morbidity and health economic burden, but it is often sub-optimally managed. Despite international consensus diagnostic criteria for functional and opioid-induced constipation (Rome IV diagnostic criteria), the term 'constipation' means different things to different people, impacting assessment, diagnosis and management.</p><p><strong>Aim: </strong>To investigate the association between persons with advanced cancer self-reporting of constipation, response to the Rome IV diagnostic criteria statements for opioid-induced constipation and differences according to personal demographics.</p><p><strong>Design: </strong>Multicentre prospective observational study.</p><p><strong>Setting/participants: </strong>Twenty-four community, hospice and hospital research sites in 10 European countries recruited 1200 adults with cancer taking opioids for cancer/cancer-treatment related pain.</p><p><strong>Results: </strong>In response to the simple question <i>'Are you constipated?'</i>, 549 (45.5%) participants replied 'yes', 588 (49%) replied 'no' and 59 (5%) were 'unsure', but 713 (59.5%) participants met the Rome IV diagnostic criteria. Only 439 (61.5%) participants that met these criteria answered the simple question positively, whilst 230 (39%) answered negatively, although there was a statistically significant association between responses to the simple question and the criteria (χ²(1, <i>N</i> = 1136) = 149.945, <i>p</i> = 0.00001). There were certain significant differences in self-reporting according to age and country of origin.</p><p><strong>Conclusions: </strong>There is disparity between patients' self-reporting of constipation and the Rome IV diagnostic criteria. People with advanced cancer, especially those receiving opioid analgesics, need to be regularly assessed for constipation, but the use of a single question (<i>'Are you constipated?'</i>) is inadequate.Registry: European Study of Opioid Induced Constipation (E-StOIC), NCT05149833, https://clinicaltrials.gov/study/NCT05149833, 08/12/2021.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"553-562"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143606140","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":"Validating the socio-spiritual items of the Utrecht Symptom Diary-4 Dimensional: Content and construct validity.","authors":"Tom Lormans, Everlien de Graaf, Frederieke van der Baan, Carlo Leget, Saskia Teunissen","doi":"10.1177/02692163251321692","DOIUrl":"10.1177/02692163251321692","url":null,"abstract":"<p><strong>Background: </strong>The Utrecht Symptom Diary-4 Dimensional (USD-4D) is a multidimensional Patient-Reported Outcome Measure to monitor symptoms and needs and increase patients' self-efficacy. Assessing the content and construct validity of the USD-4D ensures it accurately measures the intended construct and is contextually relevant.</p><p><strong>Aims: </strong>This study aimed to assess the content and construct validity of the socio-spiritual items of the USD-4D in a population of Dutch patients in the palliative phase of their illness.</p><p><strong>Design: </strong>A multiple method study was performed consisting of a cross-sectional survey and an observational cohort study.</p><p><strong>Participants: </strong>The study population consisted of (a) healthcare providers working with patients in the palliative phase and (b) a cohort of patients with a life limiting illness in all settings supplemented by a cohort of hospice patients.</p><p><strong>Results: </strong>At least 80% of participants positively assessed the items comprehensibility and relevance. About half of the respondents indicated that certain items are missing from the USD-4D. A qualitative analysis of missing topics revealed either topics for monitoring over time or topics underlying the constructs included. For every item, at least 75% of hypotheses were confirmed. One hypothesis for the item \"I can let my loved ones go\" was rejected.</p><p><strong>Conclusions: </strong>This study confirmed the content and construct validity on the socio-spiritual items of the USD-4D. Hence, the USD-4D is a validated PROM suitable to be structurally used in clinical palliative care to signal, monitor and to go into dialogue about social and spiritual aspects of patients' values, wishes, and needs.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"622-634"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033380/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143524104","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":"Where to for core outcome sets for best care for the dying person?","authors":"Mary Miller","doi":"10.1177/02692163251322741","DOIUrl":"10.1177/02692163251322741","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"635"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143493058","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":"Off-label drug use in palliative medicine: Delphi study for the consensus of evidence-based treatment recommendations.","authors":"Stefanie Pügge, Aleksandra Dukic-Ott, Julian Baumgärtel, Saskia Jünger, Claudia Bausewein, Constanze Rémi","doi":"10.1177/02692163251323123","DOIUrl":"10.1177/02692163251323123","url":null,"abstract":"<p><strong>Background: </strong>Off-label use of drugs is an integral part of everyday clinical practice in palliative medicine. However, it is associated with many uncertainties, that is, drug therapy safety or legal issues including cost coverage. Healthcare professionals often lack time and resources for comprehensive literature search and patient-specific risk-benefit analyses.</p><p><strong>Aim: </strong>The aim of this project is to develop, evaluate and rate agreement/disagreement on treatment recommendations for off-label use in adult palliative medicine.</p><p><strong>Design: </strong>Online Delphi study with two rounds each to rate agreement/disagreement with treatment recommendations for off-label use in adult palliative medicine. An international expert panel consisting of physicians, pharmacists and nurses working in palliative care evaluated previously developed recommendations based on the best available evidence.</p><p><strong>Setting: </strong>/participants:Professionals (physicians, pharmacists, nursing staff) working in inpatient and home palliative care involved in the medication process were recruited as experts to participate. Between 64 and 75 experts participated in the first two Delphi studies.</p><p><strong>Results: </strong>A total of 64/68 recommendations on 21 drugs and 14 applications were agreed upon. Topics related to routes of administration as well as indications for sialorrhea, bronchorrhea, xerostomia, pruritus, singultus, fistula, gastroparesis and hot flashes. Recommendations that reached consensus are available to health care professionals via a free of charge database.</p><p><strong>Conclusion: </strong>For many off-label use applications, it is likely that there will be no registration studies and therefore no drug approvals in the future. The consensus-based recommendations are intended to facilitate individual treatment planning for prescribers and to enable a more reflected handling of off-label use.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"530-542"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033383/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634394","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}