Palliative Medicine最新文献

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Practice review: Pharmacological management of severe chronic breathlessness in adults with advanced life-limiting diseases. 实践回顾:晚期局限生命疾病成人严重慢性呼吸困难的药物治疗。
IF 4.4 2区 医学
Palliative Medicine Pub Date : 2024-09-12 DOI: 10.1177/02692163241270945
Steffen T Simon,Irene J Higginson,Claudia Bausewein,Caroline J Jolley,Sabrina Bajwah,Matthew Maddocks,Carolin Wilharm,Adejoke O Oluyase,Anne Pralong,
{"title":"Practice review: Pharmacological management of severe chronic breathlessness in adults with advanced life-limiting diseases.","authors":"Steffen T Simon,Irene J Higginson,Claudia Bausewein,Caroline J Jolley,Sabrina Bajwah,Matthew Maddocks,Carolin Wilharm,Adejoke O Oluyase,Anne Pralong,","doi":"10.1177/02692163241270945","DOIUrl":"https://doi.org/10.1177/02692163241270945","url":null,"abstract":"BACKGROUNDSevere and refractory chronic breathlessness is a common and burdensome symptom in patients with advanced life-limiting disease. Its clinical management is challenging because of the lack of effective interventions.AIMTo provide practice recommendations on the safe use of pharmacological therapies for severe chronic breathlessness.DESIGNScoping review of (inter)national guidelines and systematic reviews. We additionally searched for primary studies where no systematic review could be identified. Consensus on the recommendations was reached by 75% approval within an international expert panel.DATA SOURCESSearches in MEDLINE, Cochrane Library and Guideline International Network until March 2023. Inclusion of publications on the use of antidepressants, benzodiazepines, opioids or corticosteroids for chronic breathlessness in adults with cancer, chronic obstructive pulmonary disease, interstitial lung disease or chronic heart failure.RESULTSOverall, the evidence from eight guidelines, 14 systematic reviews and 3 randomised controlled trials (RCTs) on antidepressants is limited. There is low quality evidence favouring opioids in patients with chronic obstructive pulmonary disease, cancer and interstitial lung disease. For chronic heart failure, evidence is inconclusive. Benzodiazepines should only be considered for anxiety associated with severe breathlessness. Antidepressants and corticosteroids should not be used.CONCLUSIONManagement of breathlessness remains challenging with only few pharmacological options with limited and partially conflicting evidence. Therefore, pharmacological treatment should be reserved for patients with advanced disease under monitoring of side effects, after optimisation of the underlying condition and use of evidence-based non-pharmacological interventions as first-line treatment.","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":4.4,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142207806","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}
引用次数: 0
Estimating the escalating future need for palliative care among people living with dementia. 估算痴呆症患者未来对姑息关怀不断升级的需求。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2024-09-12 DOI: 10.1177/02692163241269773
Emel Yorganci, Anna E Bone, Catherine J Evans, Elizabeth L Sampson, Robert Stewart, Katherine E Sleeman
{"title":"Estimating the escalating future need for palliative care among people living with dementia.","authors":"Emel Yorganci, Anna E Bone, Catherine J Evans, Elizabeth L Sampson, Robert Stewart, Katherine E Sleeman","doi":"10.1177/02692163241269773","DOIUrl":"10.1177/02692163241269773","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141917254","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}
引用次数: 0
Patient and family perspectives on rural palliative care models: A systematic review and meta-synthesis 患者和家属对农村姑息关怀模式的看法:系统回顾与元综合
IF 4.4 2区 医学
Palliative Medicine Pub Date : 2024-09-10 DOI: 10.1177/02692163241269796
Claire Marshall, Claudia Virdun, Jane L. Phillips
{"title":"Patient and family perspectives on rural palliative care models: A systematic review and meta-synthesis","authors":"Claire Marshall, Claudia Virdun, Jane L. Phillips","doi":"10.1177/02692163241269796","DOIUrl":"https://doi.org/10.1177/02692163241269796","url":null,"abstract":"Background:Almost half the world’s population lives in rural areas. How best to provide palliative care to rural populations is unclear. Privileging rural patient and family voices about their experiences of receiving care delivered via rural palliative care models is necessary.Aim:To identify the key palliative care elements that rural patients with palliative care needs and their families perceive to be critical to receiving the care and support they need to live well.Design and Data Sources:A systematic review and meta-synthesis registered with Prospero (CRD42020154273). Three databases were searched in June 2024. Raw qualitative data were extracted and analysed using Thomas and Harden’s three-stage thematic synthesis methodology. Findings reported according to the PRISMA statement.Results:Of the 10,834 identified papers, 11 met the inclusion criteria. Meta-synthesis of extracted, raw quotes (n = 209) revealed three major themes: (1) Honouring the patient’s existing relationship with their General Practitioner (GP); (2) strategically timed access to specialist services, clinicians and equipment is critical; and (3) a need to feel safe, prepared and supported.Conclusion:The strategic inclusion of specialists alongside primary care providers is integral to optimising rural palliative care models. General Practioners are central to these models, through being embedded in their communities and as the conduit to specialist palliative care services. Rural palliative care patients and families value responsive care, trajectory signposting, effective communication, 24/7 support and recognise the value of virtual health. Globally, positive public policy and funding is critical to ensuring access to GP-led, specialist-supported, rural palliative care models.","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":4.4,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142207808","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}
引用次数: 0
Communication processes in an advance care planning initiative: A socio-ecological perspective for service evaluation 预先护理规划倡议中的沟通过程:服务评估的社会生态视角
IF 4.4 2区 医学
Palliative Medicine Pub Date : 2024-09-10 DOI: 10.1177/02692163241277394
Marie C Haverfield, Jessica Ma, Anne Walling, David B Bekelman, Cati Brown-Johnson, Natalie Lo, Karl A Lorenz, Karleen F Giannitrapani
{"title":"Communication processes in an advance care planning initiative: A socio-ecological perspective for service evaluation","authors":"Marie C Haverfield, Jessica Ma, Anne Walling, David B Bekelman, Cati Brown-Johnson, Natalie Lo, Karl A Lorenz, Karleen F Giannitrapani","doi":"10.1177/02692163241277394","DOIUrl":"https://doi.org/10.1177/02692163241277394","url":null,"abstract":"Background:Advance care planning initiatives are becoming more widespread, increasing expectations for providers to engage in goals of care conversations. However, less is known about how providers communicate advance care planning within and throughout a health care system.Aim:To explore perspectives of communication processes in the rollout of an advance care planning initiative.Design:Theoretically informed secondary analysis of 31 semi-structured interviews.Setting/Participants:Key partners in a Veterans Health Administration goals of care initiative.Results:Using the constant comparative approach followed by qualitative mapping of themes to the layers of the Socio-Ecological Model, four themes and corresponding Socio-Ecological layers were identified: Goals of Care Communication Training (Policy, Community, and Institutional) requires more resources across sites and better messaging to reduce provider misconceptions and promote an institutional culture invested in advance care planning; Interprofessional Communication (Interpersonal) suggests care team coordination is needed to facilitate continuity in goals of care messaging; Communication in Documentation (Institutional, Interpersonal, and Intrapersonal) highlights the need for capturing the context for goals of care preferences; and Patient/Family Communication (Interpersonal and Intrapersonal) encourages offering materials and informational resources early to facilitate rapport building and readiness to determine goals of care.Conclusions:Findings support the need for initiatives to incorporate an evaluation of how goals of care are discussed beyond the interpersonal exchange between patient and provider and signal opportunities for applying the Socio-Ecological Model to better understand goals of care communication processes, including opportunities to improve initiation and documentation of goals of care.","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":4.4,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142207807","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}
引用次数: 0
Fostering nurse-patient relationships in palliative care: An integrative review with narrative synthesis 在姑息关怀中促进护患关系:叙事综合综述
IF 4.4 2区 医学
Palliative Medicine Pub Date : 2024-09-10 DOI: 10.1177/02692163241277380
Suzanne Bishaw, Elisabeth Coyne, Georgia KB Halkett, Melissa J Bloomer
{"title":"Fostering nurse-patient relationships in palliative care: An integrative review with narrative synthesis","authors":"Suzanne Bishaw, Elisabeth Coyne, Georgia KB Halkett, Melissa J Bloomer","doi":"10.1177/02692163241277380","DOIUrl":"https://doi.org/10.1177/02692163241277380","url":null,"abstract":"Background:Nurse-patient relationships are an integral component of person-centred palliative care. Greater understanding of how nurse-patient relationships are fostered and perceived by patients and nurses can be used to inform nursing practice.Aim:To systematically identify and synthesise how nurse-patient relationships are fostered in specialist inpatient palliative care settings, and how nurse-patient relationships were perceived by patients and nurses.Design:Integrative review with narrative synthesis. The review protocol was registered with PROSPERO (CRD42022336148, updated April, 2023).Data Sources:Five electronic databases (PubMed, CINAHL Complete, Medline, Web of Science and PsycINFO) were searched for articles published from their inception to December 2023. Studies were included if they (i) examined nurse and/or patient perspectives and experiences of nurse-patient relationships in specialist inpatient palliative care, (ii) were published in English in a (iii) peer-reviewed journal. The Mixed Methods Appraisal Tool was used to evaluate study quality. Data were synthesised using narrative synthesis.Results:Thirty-four papers from 31 studies were included in this review. Studies were mostly qualitative and were of high methodological quality. Four themes were identified: (a) creating connections; (b) fostering meaningful patient engagement; (c) negotiating choices and (d) building trust.Conclusions:Nurses and patients are invested in the nurse-patient relationship, benefitting when it is positive, therapeutic and both parties are valued partners in the care. Key elements of fostering the nurse-patient relationship in palliative care were revealed, however, the dominance of the nurses’ perspectives signifies that the nature and impact of these relationships may not be well understood.","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":4.4,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142207809","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}
引用次数: 0
Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence. 影响患有局限生命和危及生命疾病的儿童和青少年转诊和获得姑息关怀的障碍和促进因素:证据范围综述。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2024-09-09 DOI: 10.1177/02692163241271010
Pru Holder, Lucy Coombes, Jane Chudleigh, Richard Harding, Lorna K Fraser
{"title":"Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence.","authors":"Pru Holder, Lucy Coombes, Jane Chudleigh, Richard Harding, Lorna K Fraser","doi":"10.1177/02692163241271010","DOIUrl":"https://doi.org/10.1177/02692163241271010","url":null,"abstract":"<p><strong>Background: </strong>Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit.</p><p><strong>Aim: </strong>Appraise the evidence to identify factors influencing referral and access to children's palliative care, and interventions to reduce barriers and improve referrals.</p><p><strong>Design: </strong>Scoping review following the six stages of the Arksey and O'Malley framework. Data were charted using an adapted version of the socioecological framework.</p><p><strong>Data sources: </strong>CINAHL, MEDLINE, PsycINFO, EMBASE, Cochrane Library were searched for primary studies of any design and literature/systematic reviews. Studies reporting barriers/facilitators and interventions in relation to referral of children with a life-limiting condition to palliative care, in any setting, were included.</p><p><strong>Results: </strong>One hundred ninety five articles (primary qualitative and quantitative studies, reviews) were retained (153 reporting barriers/facilitators; 40 interventions; 2 both). Multiple factors were identified as barriers/facilitators: Individual level: underlying diagnosis, prognostic uncertainty, parental attitudes, staff understanding/beliefs; Interpersonal level: family support, patient-provider relationships, interdisciplinary communication; Organisational level: referral protocols, workforce, leadership; Community level: cultural norms, community resources, geography; Society level: policies and legislation, national education, economic environment, medication availability. Most of these factors were bi-directional in terms of influence. Interventions (<i>n</i> = 42) were mainly at the organisational level for example, educational programmes, screening tools/guidelines, workplace champions and new/enhanced services; one-third of these were evaluated.</p><p><strong>Conclusion: </strong>Barriers/facilitators to paediatric palliative care referral are well described. Interventions are less well described and often unevaluated. Multi-modal approaches incorporating stakeholders from all levels of the socioecological framework are required to improve paediatric palliative care referral and access.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142154774","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}
引用次数: 0
Factors influencing deprescribing in primary care for those towards the end of life: A qualitative interview study with patients and healthcare practitioners. 影响基层医疗机构为临终患者开处方的因素:对患者和医护人员的定性访谈研究。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2024-09-01 Epub Date: 2024-06-25 DOI: 10.1177/02692163241261202
Maike S van der Waal, Saskia Ccm Teunissen, Allegonda G Uyttewaal, Cathelijne Verboeket-Crul, Hanneke Smits-Pelser, Eric Ct Geijteman, Matthew P Grant
{"title":"Factors influencing deprescribing in primary care for those towards the end of life: A qualitative interview study with patients and healthcare practitioners.","authors":"Maike S van der Waal, Saskia Ccm Teunissen, Allegonda G Uyttewaal, Cathelijne Verboeket-Crul, Hanneke Smits-Pelser, Eric Ct Geijteman, Matthew P Grant","doi":"10.1177/02692163241261202","DOIUrl":"10.1177/02692163241261202","url":null,"abstract":"<p><strong>Background: </strong>For people with limited lifetime expectancy, the benefit of many medications may be outweighed by their potential harms. Despite the relevance of reducing unnecessary medication use, deprescribing is poorly enacted in primary care practice.</p><p><strong>Aim: </strong>This study aims to describe factors, as identified by primary care professionals and patients, that influence deprescribing in the last phase of life.</p><p><strong>Design: </strong>Semi-structured interviews were conducted and analysed using a thematic approach.</p><p><strong>Setting/participants: </strong>This study was performed in primary care settings, including general practices, hospices and community care teams in The Netherlands. Purposefully identified primary care professionals (general practitioners, pharmacists, nurses) and patients with limited lifetime expectancy due to advanced chronic illness or cancer and their caretakers were interviewed.</p><p><strong>Results: </strong>Three themes emerged detailing factors influencing deprescribing in the last phase of life in primary care: (1) non-maleficence, the wish to avoid additional psychological or physical distress; (2) reactive care, the lack of priority and awareness of eligible patients; and (3) discontinuity of care within primary care and between primary care and specialty care.</p><p><strong>Conclusions: </strong>Deprescribing is an incremental process, complicated by the unpredictability of life expectancy and attitudes of patients and health care professionals that associate continued medication use with clinical stability. Opportunities to facilitate the deprescribing process and its acceptance include the routinely systematic identification of patients with limited life expectancy and potentially inappropriate medications, and normalisation of deprescribing as component of regular primary care, occurring for all patients and continuing into end-of-life care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141446738","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}
引用次数: 0
Feasibility and effectiveness of a two-tiered intervention involving training and a new consultation model for patients with palliative care needs in primary care: A before-after study. 为基层医疗机构中有姑息关怀需求的患者提供培训和新咨询模式的双层干预措施的可行性和有效性:前后对比研究。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2024-09-01 Epub Date: 2024-01-16 DOI: 10.1177/02692163231219682
Carlos Seiça Cardoso, Filipe Prazeres, Bárbara Oliveiros, Cátia Nunes, Pedro Simões, Carolina Aires, Patrícia Rita, Joana Penetra, Paulo Lopes, Sara Alcobia, Sara Baptista, Carla Venâncio, Barbara Gomes
{"title":"Feasibility and effectiveness of a two-tiered intervention involving training and a new consultation model for patients with palliative care needs in primary care: A before-after study.","authors":"Carlos Seiça Cardoso, Filipe Prazeres, Bárbara Oliveiros, Cátia Nunes, Pedro Simões, Carolina Aires, Patrícia Rita, Joana Penetra, Paulo Lopes, Sara Alcobia, Sara Baptista, Carla Venâncio, Barbara Gomes","doi":"10.1177/02692163231219682","DOIUrl":"10.1177/02692163231219682","url":null,"abstract":"<p><strong>Background: </strong>Evidence suggests that involving General Practitioners in the care of patients with palliative care needs may improve patient outcomes.</p><p><strong>Aim: </strong>To evaluate whether a two-tiered intervention involving training in palliative care and a new consultation model in primary care for patients with palliative care needs is feasible and could reduce patients' symptom burden.</p><p><strong>Design: </strong>Before-after study including an internal pilot.</p><p><strong>Setting/participants: </strong>Nine general practitioners working in a health region in Portugal and 53 patients with palliative care needs from their patient lists were recruited. General Practitioners received training in palliative care and used a new primary palliative care consultation model, with medical consultations every 3 weeks for 12 weeks. The primary outcome was physical symptom burden, self-reported using the Integrated Palliative care Outcome Scale (IPOS) patient version (min.0-max.1000). Secondary outcomes included emotional symptoms (min.0-max.400) and communication/practical issues (min.0-max.300).</p><p><strong>Results: </strong>Of the 35/53 patients completed the 12-week intervention (mean age 72.53 years, SD = 13.45; 54.7% female). All had advanced disease: one third had cancer (<i>n</i> = 13), one third had congestive heart failure (<i>n</i> = 12); others had chronic kidney disease and chronic obstructive pulmonary disease. After the 12 weeks of intervention, there was a reduction in physical symptom burden [mean difference from baseline of 71.42 (95%CI 37.01-105.85) with a medium-large effect size (0.71], and in emotional symptom burden [mean difference 42.86 (95%CI 16.14-69.58), with a medium effect size (0.55)]. No difference was found for communication/practical issues.</p><p><strong>Conclusions: </strong>Our intervention can be effective in reducing patients' physical and emotional symptoms.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov ID - NCT05244590. Registration: 14th February 2022.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11445974/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139472867","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}
引用次数: 0
Evaluation of the integration of palliative care in a fragile setting amongst host and refugee communities: Using consecutive rapid participatory appraisals. 评估在脆弱环境下收容社区和难民社区中整合姑息关怀的情况:使用连续快速参与式评估。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2024-09-01 Epub Date: 2024-09-09 DOI: 10.1177/02692163241269129
Mhoira Leng, Julia Downing, Gursaran Purewal, Liz Namukwaya, Vicky Opia, Chitra Venkateswaran, Elizabeth Nabirye, Peace Bagasha
{"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":null,"pages":null},"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}
引用次数: 0
Electronic symptom monitoring for home-based palliative care: A systematic review. 用于居家姑息关怀的电子症状监测:系统综述。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2024-09-01 Epub Date: 2024-06-04 DOI: 10.1177/02692163241257578
Suning Mao, Liu Liu, Cheng Miao, Tianyi Wang, Yue Chen, Zhishen Jiang, Chengge Hua, Chunjie Li, Yubin Cao
{"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":null,"pages":null},"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}
引用次数: 0
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