BMC Palliative Care最新文献

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Examining emotional and behavioural trajectories in siblings of children with life-limiting conditions. 研究患有局限性疾病儿童的兄弟姐妹的情绪和行为轨迹。
IF 2.5 2区 医学
BMC Palliative Care Pub Date : 2024-08-12 DOI: 10.1186/s12904-024-01535-y
Joanne Tay, Kimberley Widger, Rose Steele, Robyn Stremler, Jason D Pole
{"title":"Examining emotional and behavioural trajectories in siblings of children with life-limiting conditions.","authors":"Joanne Tay, Kimberley Widger, Rose Steele, Robyn Stremler, Jason D Pole","doi":"10.1186/s12904-024-01535-y","DOIUrl":"10.1186/s12904-024-01535-y","url":null,"abstract":"<p><strong>Background: </strong>Healthy siblings of children with life-limiting conditions often experience emotional and behavioural struggles over the course of the ill child's condition(s). Resources to support these siblings are limited due to a lack of understanding about their needs. Therefore, this study was designed to characterize the emotional and behavioural trajectories among siblings of children with progressive, life-limiting genetic, metabolic, or neurological conditions over a 12-month observation period.</p><p><strong>Methods: </strong>Seventy siblings were recruited from a large-survey based study (Charting the Territory) that examined the bio-psychosocial health outcomes of parents and siblings. Linear mixed effect models were used to assess the association between siblings' emotions and behaviour trajectories and selected demographic variables. Siblings' emotions and behaviour were measured with Child Behaviour Checklist (CBCL).</p><p><strong>Results: </strong>Siblings' mean age was 11.2 years at baseline and Internalizing, Externalizing, and Total Behaviour Problems mean scores were within normal ranges across time. However, 7-25% of siblings had scores within the clinical range. Brothers had higher levels of Internalizing Problems than sisters, whereas sisters had higher levels of Externalizing Problems than brothers. When treatment was first sought for the ill child less than a year prior to study participation, siblings had higher levels of Internalizing and Externalizing Problems compared with siblings who participated more than one year after treatment was sought.</p><p><strong>Conclusion: </strong>Healthy siblings experience emotional and behavioural problems early in the child's disease trajectory. Although these problems improve with time, our findings show that brothers and sisters experience different types of challenges. Therefore, timely support for siblings is important as they navigate through the uncertainties and challenges.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11318302/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141917865","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
Collaboration, coordination and communication as facilitators of transitions for patients with advanced cancer: a scoping review linked to the Pal-Cycles project. 协作、协调和沟通是晚期癌症患者过渡的促进因素:与 Pal-Cycles 项目相关的范围界定审查。
IF 2.5 2区 医学
BMC Palliative Care Pub Date : 2024-08-07 DOI: 10.1186/s12904-024-01510-7
Rachel Louise Hooley, Sheila Payne, Dunja Begovic, Juan Esteban Correa-Morales, Andrew Harding, Jeroen Hasselaar, Nancy Preston
{"title":"Collaboration, coordination and communication as facilitators of transitions for patients with advanced cancer: a scoping review linked to the Pal-Cycles project.","authors":"Rachel Louise Hooley, Sheila Payne, Dunja Begovic, Juan Esteban Correa-Morales, Andrew Harding, Jeroen Hasselaar, Nancy Preston","doi":"10.1186/s12904-024-01510-7","DOIUrl":"10.1186/s12904-024-01510-7","url":null,"abstract":"<p><strong>Background: </strong>Person-centred care is becoming increasingly recognised as an important element of palliative care. The current review syntheses evidence in relation to transitions in advanced cancer patients with palliative care needs. The review focuses on specific elements which will inform the Pal-Cycles programme, for patients with advanced cancer transitioning from hospital care to community care. Elements of transitional models for cancer patients may include, identification of palliative care needs, compassionate communication with the patient and family members, collaborative effort to establish a multi-dimensional treatment plan, review and evaluation of the treatment plan and identification of the end of life phase.</p><p><strong>Methods: </strong>A scoping review of four databases (MEDLINE, EMBASE, CINAHL, PsycINFO) was conducted to identify peer-reviewed studies published from January 2013 to October, 2022. A further hand-search of references to locate additional relevant studies was also undertaken. Inclusion criteria involved cancer patients transitions of care with a minimum of two of components from those listed above. Studies were excluded if they were literature reviews, if transition of care was related to cancer survivors, involved non-cancer patients, had paediatric population, if the transition implied a change of therapy and or a lack of physical transit to a non-hospital place of care. This review was guided by Arksey and O'Malley's framework and narrative synthesis was used.</p><p><strong>Results: </strong>Out of 5695 records found, 14 records were selected. Transition models identified: increases in palliative care consultations, hospice referrals, reduction in readmission rates and the ability to provide end of life care at home. Transition models highlight emotional and spiritual support for patients and families. No uniform model of transition was apparent, this depends on the healthcare system where it is implemented.</p><p><strong>Conclusions: </strong>The findings highlight the importance of collaboration, coordination and communication as central mechanisms for transitional model for patients with advanced cancer. This may require careful planning and will need to be tailored to the contexts of each healthcare system.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11304839/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141903323","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
Implementation of a digital distress detection system in palliative care: qualitative data on perspectives of a multiprofessional palliative care team. 在姑息关怀中实施数字危难检测系统:关于一个多专业姑息关怀团队观点的定性数据。
IF 2.5 2区 医学
BMC Palliative Care Pub Date : 2024-08-07 DOI: 10.1186/s12904-024-01530-3
Katharina Seibel, Claudia Lorena Orellana Rios, Titus Sparna, Carola Becker, Jan Gaertner, Gerhild Becker, Christopher Boehlke
{"title":"Implementation of a digital distress detection system in palliative care: qualitative data on perspectives of a multiprofessional palliative care team.","authors":"Katharina Seibel, Claudia Lorena Orellana Rios, Titus Sparna, Carola Becker, Jan Gaertner, Gerhild Becker, Christopher Boehlke","doi":"10.1186/s12904-024-01530-3","DOIUrl":"10.1186/s12904-024-01530-3","url":null,"abstract":"<p><strong>Background: </strong>Digital health technologies such as sensor systems are intended to support healthcare staff in providing adequate patient care. In the Department of Palliative Medicine (University Medical Center Freiburg), we developed and implemented a noninvasive, bed-based sensor system in a pilot study. The aim was to detect distress in patients who were no longer able to express themselves by monitoring heart and respiratory rates, vocalizations, and movement measurements. The sensor system was intended to supplement standard care, which generally cannot guarantee constant monitoring. As there is a lack of data on how healthcare professionals experience such a techno-digital innovation, the aim of this study was to explore how the multiprofessional palliative care team who piloted the sensor system perceived its potential benefits and limitations, and how they experienced the broader context of healthcare technology and research in palliative care.</p><p><strong>Methods: </strong>We conducted a qualitative interview study with 20 members of the palliative care team and analyzed the recorded, verbatim transcribed interviews using qualitative content analysis.</p><p><strong>Results: </strong>The sensor system was described as easy to use and as helpful support for patients, care staff, and relatives, especially against the backdrop of demographic change. However, it could not replace human interpretation of stress and subsequent treatment decisions: this remained the expertise of the nursing staff. A potential reduction in personnel was expected to be a risk of a digital monitoring system. The special conditions of research and digital health technologies in an end-of-life context also became clear. Specifically, healthcare staff were open to health technologies if they benefited the patient and were compatible with professional nursing and/or palliative care attitudes. Additionally, a patient-protective attitude and possible interprofessional differences in priorities and the resulting challenges for the team became apparent.</p><p><strong>Conclusions: </strong>A potential digital solution for distress monitoring was considered useful by palliative care practitioners. However, interprofessional differences and compatibility with existing palliative care practices need to be considered before implementing such a system. To increase user acceptability, the perspectives of healthcare professionals should be included in the implementation of technological innovations in palliative care.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11304939/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141903324","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
A 15-year experience in pediatric palliative care: a retrospective hospital-based study. 儿科姑息治疗的 15 年经验:一项以医院为基础的回顾性研究。
IF 2.5 2区 医学
BMC Palliative Care Pub Date : 2024-08-06 DOI: 10.1186/s12904-024-01532-1
Mirella Schiavon, Pierina Lazzarin, Caterina Agosto, Francesca Rusalen, Antuan Divisic, Anna Zanin, Anna Mercante, Valentina Mirisola, Simonetta Papa, Luca Giacomelli, Franca Benini
{"title":"A 15-year experience in pediatric palliative care: a retrospective hospital-based study.","authors":"Mirella Schiavon, Pierina Lazzarin, Caterina Agosto, Francesca Rusalen, Antuan Divisic, Anna Zanin, Anna Mercante, Valentina Mirisola, Simonetta Papa, Luca Giacomelli, Franca Benini","doi":"10.1186/s12904-024-01532-1","DOIUrl":"10.1186/s12904-024-01532-1","url":null,"abstract":"<p><strong>Background: </strong>The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community care, general PPC, or specialized PPC) and to improve the delivery of PPC care.</p><p><strong>Methods: </strong>Aiming at obtaining information about the referrals to the Padua Pediatric Hospice that could help estimate the investments needed to improve the provision of care, a retrospective analysis has been carried out. The rate of proper referral and discharge, the number of patients followed at the hospice, the mortality rate, and the length of follow-up were analyzed, and, when possible, data were stratified by oncological and non-oncological diseases.</p><p><strong>Results: </strong>The analysis showed that of the 870 patients referred to the Padua Pediatric Hospice between 2008 and 2022, 76% were affected by non-oncological conditions. 82% of patients referred were taken in charge and most of the remaining patients have been inappropriately referred. The analysis showed a growing number of total referrals, which increased by 195% from 2008 to 2022. An increase in proper referrals and referrals of non-oncological patients was observed alongside a decrease in oncological patient referrals and a trend toward a decrease in discharge rates. A decreased mortality was observed in patients with non-oncological conditions, with only 6% of deceased patients in 2022. Moreover, a longer survival with a median follow-up length of 43 months was observed among patients with non-oncological conditions who were followed up at the Padua Pediatric Hospice for more than 12 months. Conversely, the short survival rate observed for oncological patients suggests that those patients should have been referred to PPC earlier to benefit from palliative care for longer periods.</p><p><strong>Conclusions: </strong>Considering these data, it is expected that the number of patients needing PPC services will steadily increase in the next years. Hence, there is a need to invest resources to provide the best care delivery model encompassing specific pathways for the transition into adulthood, the establishment of networks within all the Italian regions, and an efficient referral to the more suitable setting of care.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11301942/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141898720","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
Acceptance level of advance care planning and its associated factors among the public: A nationwide survey. 公众对预先医疗规划及其相关因素的接受程度:一项全国性调查。
IF 2.5 2区 医学
BMC Palliative Care Pub Date : 2024-08-06 DOI: 10.1186/s12904-024-01533-0
Xue Wang, Yibo Wu, Xinghua Bai, Qiao Qiao, Ling Yu, Lina Ge, Li Qi, Shuang Zang
{"title":"Acceptance level of advance care planning and its associated factors among the public: A nationwide survey.","authors":"Xue Wang, Yibo Wu, Xinghua Bai, Qiao Qiao, Ling Yu, Lina Ge, Li Qi, Shuang Zang","doi":"10.1186/s12904-024-01533-0","DOIUrl":"10.1186/s12904-024-01533-0","url":null,"abstract":"<p><strong>Background: </strong>Advance care planning (ACP) can contribute to individuals making decisions about their healthcare preferences in advance of serious illness. Up to now, the acceptance level and associated factors of ACP among the public in China remain unclear. This study aims to investigate the acceptance level of ACP in China and identify factors associated with it based on the socioecological model.</p><p><strong>Methods: </strong>A total of 19,738 participants were included in this survey. We employed a random forest regression analysis to select factors derived from the socioecological model. Multivariate generalized linear model analysis was then conducted to explore the factors that were associated with the acceptance level of ACP.</p><p><strong>Results: </strong>On a scale ranging from 0 to 100, the median score for acceptance level of ACP was 64.00 (IQR: 48.00-83.00) points. The results of the multivariate generalized linear model analysis revealed that participants who scored higher on measures of openness and neuroticism personality traits, as well as those who had greater perceptions of social support, higher levels of health literacy, better neighborly relationships, family health, and family social status, were more likely to accept ACP. Conversely, participants who reported higher levels of subjective well-being and greater family communication levels demonstrated a lower likelihood of accepting ACP.</p><p><strong>Conclusions: </strong>This study identified multiple factors associated with the acceptance level of ACP. The findings offer valuable insights that can inform the design and implementation of targeted interventions aimed at facilitating a good death and may have significant implications for the formulation of end-of-life care policies and practices in other countries facing similar challenges.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11301855/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141898721","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
A palliative care approach for adult non-cancer patients with life-limiting illnesses is cost-saving or cost-neutral: a systematic review of RCTs. 为患有局限性疾病的非癌症成人患者提供姑息关怀的方法是节约成本还是成本中性:对研究性临床试验的系统回顾。
IF 2.5 2区 医学
BMC Palliative Care Pub Date : 2024-08-05 DOI: 10.1186/s12904-024-01516-1
Katharina Janke, Yakubu Salifu, Siva Gavini, Nancy Preston, Amy Gadoud
{"title":"A palliative care approach for adult non-cancer patients with life-limiting illnesses is cost-saving or cost-neutral: a systematic review of RCTs.","authors":"Katharina Janke, Yakubu Salifu, Siva Gavini, Nancy Preston, Amy Gadoud","doi":"10.1186/s12904-024-01516-1","DOIUrl":"10.1186/s12904-024-01516-1","url":null,"abstract":"<p><strong>Background: </strong>Patients living with life-limiting illnesses other than cancer constitute the majority of patients in need of palliative care globally, yet most previous systematic reviews of the cost impact of palliative care have not exclusively focused on this population. Reviews that tangentially looked at non-cancer patients found inconclusive evidence. Randomised controlled trials (RCTs) are the gold standard for treatment efficacy, while total health care costs offer a comprehensive measure of resource use. In the sole review of RCTs for non-cancer patients, palliative care reduced hospitalisations and emergency department visits but its effect on total health care costs was not assessed. The aim of this study is to review RCTs to determine the difference in costs between a palliative care approach and usual care in adult non-cancer patients with a life-limiting illness.</p><p><strong>Methods: </strong>A systematic review using a narrative synthesis approach. The protocol was registered with PROSPERO prospectively (no. CRD42020191082). Eight databases were searched: Medline, CINAHL, EconLit, EMBASE, TRIP database, NHS Evidence, Cochrane Library, and Web of Science from inception to January 2023. Inclusion criteria were: English or German; randomised controlled trials (RCTs); adult non-cancer patients (> 18 years); palliative care provision; a comparator group of standard or usual care. Quality of studies was assessed using Drummond's checklist for assessing economic evaluations.</p><p><strong>Results: </strong>Seven RCTs were included and examined the following diseases: neurological (3), heart failure (2), AIDS (1) and mixed (1). The majority (6/7) were home-based interventions. All studies were either cost-saving (3/7) or cost-neutral (4/7); and four had improved outcomes for patients or carers and three no change in outcomes.</p><p><strong>Conclusions: </strong>In a non-cancer population, this is the first systematic review of RCTs that has demonstrated a palliative care approach is cost-saving or at least cost-neutral. Cost savings are achieved without worsening outcomes for patients and carers. These findings lend support to calls to increase palliative care provision globally.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11299357/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890644","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
Psychological stress of general practitioners in the care of patients with palliative care needs: an exploratory study 全科医生在护理有姑息关怀需求的病人时的心理压力:一项探索性研究
IF 3.1 2区 医学
BMC Palliative Care Pub Date : 2024-08-03 DOI: 10.1186/s12904-024-01529-w
Verena Lopez, Piet van der Keylen, Thomas Kühlein, Maria Sebastião
{"title":"Psychological stress of general practitioners in the care of patients with palliative care needs: an exploratory study","authors":"Verena Lopez, Piet van der Keylen, Thomas Kühlein, Maria Sebastião","doi":"10.1186/s12904-024-01529-w","DOIUrl":"https://doi.org/10.1186/s12904-024-01529-w","url":null,"abstract":"In Germany, general practitioners play a pivotal role in palliative care provision. Caring for patients with palliative care needs can be a burden for general practitioners, highlighting the importance of self-care and mental health support. This study aimed to explore the role of palliative care in general practitioners’ daily work, the stressors they experience, their coping mechanisms, and the potential benefits of Advance Care Planning in this context. An exploratory approach was employed, combining a short quantitative survey with qualitative interviews. The analysis was based on a structuring qualitative content analysis, following a deductive-inductive procedure and integrating the Stress-Strain Model and Lazarus’ Transactional Model of Stress and Coping. We recruited eleven general practitioners to take part in the study. General practitioners viewed palliative care as integral to their practice but faced challenges such as time constraints and perceived expertise gaps. Societal taboos often hindered conversations on the topic of death. Most general practitioners waited for their patients to initiate the topic. Some general practitioners viewed aspects of palliative care as potentially distressing. They used problem-focused (avoiding negative stressors, structuring their daily schedules) and emotion-focused (discussions with colleagues) coping strategies. Still, general practitioners indicated a desire for specific psychological support options. Advance Care Planning, though relatively unfamiliar, was acknowledged as valuable for end-of-life conversations. Palliative care can be associated with negative psychological stress for general practitioners, often coming from external factors. Despite individual coping strategies in place, it is advisable to explore concepts for professional psychological relief. Not registered.","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141883330","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
Palliative care for patients with heart failure and family caregivers in rural Appalachia: a randomized controlled trial 为阿巴拉契亚农村地区的心力衰竭患者和家庭照护者提供姑息关怀:随机对照试验
IF 3.1 2区 医学
BMC Palliative Care Pub Date : 2024-08-03 DOI: 10.1186/s12904-024-01531-2
Ubolrat Piamjariyakul, Angel Smothers, Kesheng Wang, Saima Shafique, Sijin Wen, Trisha Petitte, Stephanie Young, George Sokos, Carol E. Smith
{"title":"Palliative care for patients with heart failure and family caregivers in rural Appalachia: a randomized controlled trial","authors":"Ubolrat Piamjariyakul, Angel Smothers, Kesheng Wang, Saima Shafique, Sijin Wen, Trisha Petitte, Stephanie Young, George Sokos, Carol E. Smith","doi":"10.1186/s12904-024-01531-2","DOIUrl":"https://doi.org/10.1186/s12904-024-01531-2","url":null,"abstract":"Heart failure (HF) is a debilitating disease with worsening symptoms and family caregiving burden. HF affects more than 8 million Americans. West Virginia has the highest HF death rate in the U.S. and limited healthcare services. This study tested whether the family HF palliative and end-of-life care intervention (FamPALcare) improved patient and caregiver outcomes at 3- and 6-month study endpoints. This study used a randomized controlled trial design. Patients with HF and their caregivers were randomly assigned together to the intervention (n = 21) or control (n = 18) group. The intervention included five telephone coaching sessions on the HF home, palliative, and end-of-life care. The outcome data collected at baseline and at 3 and 6 months were from the patients’ (a) HF-related health status and depression/anxiety scale scores; and from caregivers’ (b) caregiving burden and depression/anxiety scale scores; and (c) anonymous ratings on the 11-item FamPALcare helpfulness scale, completed by the intervention participants. The mean age of the patients was 65.66 (SD = 13.72) years, and 67% were White males. The mean age of the caregivers was 62.05 (SD = 13.14) years, and 77% were White females. Compared to the controls, patients in the intervention group had significantly greater scores for HF-related health status (p < .05) and lower depression/anxiety scores at 6 months, the study endpoint. The family caregivers in the intervention group had significantly lower scores on caregiving burden (p < .05) and depression/anxiety (p < .01) at 3 months. The mean helpfulness rating was M = 4.46 out of 5 (SD = 0.49). The FamPALcare intervention was found to be effective at improving patient HF-related health status and reducing caregiver burden and improving both patient and caregiver depression and anxiety scores. The FamPALcare HF intervention was found feasible and consistently delivered (fidelity). The FamPALcare intervention’s cost-effectiveness and helpfulness ratings information will be used to plan for subsequent clinical trials. ClinicalTrials.gov NCT04153890, Registered on 4 November 2019, https://clinicaltrials.gov/ct2/show/NCT04153890 .","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141883332","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
Experiences with a national team-based learning program for advance care planning in pediatric palliative care. 儿科姑息关怀中预先护理计划的全国团队学习项目经验。
IF 2.5 2区 医学
BMC Palliative Care Pub Date : 2024-08-03 DOI: 10.1186/s12904-024-01515-2
Marijanne Engel, Jurrianne C Fahner, Marije P Hennus, Marijke C Kars
{"title":"Experiences with a national team-based learning program for advance care planning in pediatric palliative care.","authors":"Marijanne Engel, Jurrianne C Fahner, Marije P Hennus, Marijke C Kars","doi":"10.1186/s12904-024-01515-2","DOIUrl":"10.1186/s12904-024-01515-2","url":null,"abstract":"<p><strong>Background: </strong>Advance Care Planning (ACP) enables patients and relatives to define and share values, goals and preferences for future medical treatment and care. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT), developed in the Netherlands, is a method for conducting ACP in pediatric palliative care. Healthcare professionals who were trained to use IMPACT, indicated their need for ongoing support to practice ACP communication skills optimally over time. Therefore, we developed a team-based learning program aimed at teaching participants how to transfer knowledge on ACP, continue practicing ACP communication skills and reflect on ACP conversations within their own team context. The aim of this study was to evaluate the program's transfer of knowledge as well as the professionals' experience and team reflection on ACP.</p><p><strong>Methods: </strong>A one-day IMPACT train-the-trainer course was developed and a selection of healthcare professionals (facilitators) from pediatric palliative care teams (PPCTs) from all seven Dutch university hospitals and the specialized Center for Pediatric Oncology were invited to participate. Hereafter, facilitators were asked to transfer their course-acquired knowledge to their team members (learners) by organizing two coaching-on-the-job sessions. A mixed-methods design, combining questionnaires and field notes, was used to evaluate the level of knowledge transfer and team reflection achieved.</p><p><strong>Results: </strong>Eighteen healthcare professionals in the role of facilitator participated in the train-the-trainer course. In seven PPCTs one (n = 3) or two (n = 4) coaching-on-the-job session(s) took place, attended by 29 and 17 learners, respectively. In the questionnaires, 11 facilitators indicated that they had to some extent transferred acquired knowledge to their team members as intended. Sixteen out of 21 learners who participated in at least one coaching-on-the-job session, reported (somewhat) increased self-confidence for conducting ACP conversations. The reported main strength of the program was practicing with/learning from colleagues whereas dealing with workload and variation in existing ACP skills within PPCTs need more attention.</p><p><strong>Conclusions: </strong>The newly developed team-based learning program resulted in intended transfer of knowledge and methodical reflection on ACP in coaching-on-the-job sessions in most participating PPCTs. Planning coaching-on-the-job sessions regarding ACP in pediatric palliative care with multiple healthcare professionals is challenging and needs more emphasis in the training.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11297680/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141879716","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
Advancing the integration of biosignal-based automated pain assessment methods into a comprehensive model for addressing cancer pain 推动将基于生物信号的自动疼痛评估方法整合到解决癌症疼痛的综合模型中
IF 3.1 2区 医学
BMC Palliative Care Pub Date : 2024-08-03 DOI: 10.1186/s12904-024-01526-z
Marco Cascella, Piergiacomo Di Gennaro, Anna Crispo, Alessandro Vittori, Emiliano Petrucci, Francesco Sciorio, Franco Marinangeli, Alfonso Maria Ponsiglione, Maria Romano, Concetta Ovetta, Alessandro Ottaiano, Francesco Sabbatino, Francesco Perri, Ornella Piazza, Sergio Coluccia
{"title":"Advancing the integration of biosignal-based automated pain assessment methods into a comprehensive model for addressing cancer pain","authors":"Marco Cascella, Piergiacomo Di Gennaro, Anna Crispo, Alessandro Vittori, Emiliano Petrucci, Francesco Sciorio, Franco Marinangeli, Alfonso Maria Ponsiglione, Maria Romano, Concetta Ovetta, Alessandro Ottaiano, Francesco Sabbatino, Francesco Perri, Ornella Piazza, Sergio Coluccia","doi":"10.1186/s12904-024-01526-z","DOIUrl":"https://doi.org/10.1186/s12904-024-01526-z","url":null,"abstract":"Tailoring effective strategies for cancer pain management requires a careful analysis of multiple factors that influence pain phenomena and, ultimately, guide the therapy. While there is a wealth of research on automatic pain assessment (APA), its integration with clinical data remains inadequately explored. This study aimed to address the potential correlations between subjective and APA-derived objectives variables in a cohort of cancer patients. A multidimensional statistical approach was employed. Demographic, clinical, and pain-related variables were examined. Objective measures included electrodermal activity (EDA) and electrocardiogram (ECG) signals. Sensitivity analysis, multiple factorial analysis (MFA), hierarchical clustering on principal components (HCPC), and multivariable regression were used for data analysis. The study analyzed data from 64 cancer patients. MFA revealed correlations between pain intensity, type, Eastern Cooperative Oncology Group Performance status (ECOG), opioids, and metastases. Clustering identified three distinct patient groups based on pain characteristics, treatments, and ECOG. Multivariable regression analysis showed associations between pain intensity, ECOG, type of breakthrough cancer pain, and opioid dosages. The analyses failed to find a correlation between subjective and objective pain variables. The reported pain perception is unrelated to the objective variables of APA. An in-depth investigation of APA is required to understand the variables to be studied, the operational modalities, and above all, strategies for appropriate integration with data obtained from self-reporting. This study is registered with ClinicalTrials.gov, number (NCT04726228), registered 27 January 2021, https://classic.clinicaltrials.gov/ct2/show/NCT04726228?term=nct04726228&draw=2&rank=1 ","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141883248","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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