The American journal of hospice & palliative care最新文献

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Using Patient-Centered Dissemination and Implementation Frameworks and Strategies in Palliative Care Settings for Improved Quality of Life and Health Outcomes: A Scoping Review. 在姑息治疗环境中使用以患者为中心的传播和实施框架和策略来改善生活质量和健康结果:范围综述
The American journal of hospice & palliative care Pub Date : 2024-10-01 Epub Date: 2023-11-13 DOI: 10.1177/10499091231214241
Lea Sacca, Diana Lobaina, Sara Burgoa, Meera Rao, Vama Jhumkhawala, Sheena M Zapata, Michelle Issac, Suleyki Medina
{"title":"Using Patient-Centered Dissemination and Implementation Frameworks and Strategies in Palliative Care Settings for Improved Quality of Life and Health Outcomes: A Scoping Review.","authors":"Lea Sacca, Diana Lobaina, Sara Burgoa, Meera Rao, Vama Jhumkhawala, Sheena M Zapata, Michelle Issac, Suleyki Medina","doi":"10.1177/10499091231214241","DOIUrl":"10.1177/10499091231214241","url":null,"abstract":"<p><strong>Background: </strong>There is a need for patient-provider dissemination and implementation frameworks, strategies, and protocols in palliative care settings for a holistic approach when it comes to addressing pain and other distressing symptoms affecting the quality of life, function, and independence of patients with chronic illnesses. The purpose of this scoping review is to explore patient-centered D&I frameworks and strategies that have been adopted in PC settings to improve behavioral and environmental determinants influencing health outcomes through evidence-based programs and protocols.</p><p><strong>Methods: </strong>The five step Arksey and O'Malley's (2005) York methodology was adopted as a guiding framework: (1) identifying research questions; (2) searching for relevant studies; (3) selecting studies relevant to the research questions; (4) charting the data; and (5) collating, summarizing, and reporting results.</p><p><strong>Results: </strong>Only 6 out of the 38 (16%) included studies applied a D&I theory and/or framework. The RE-AIM framework was the most prominently cited (n = 3), followed by the Diffusion of Innovation Model (n = 2), the CONNECT framework (n = 1), and the Transtheoretical Stages of Change Model (n = 1). The most frequently reported ERIC strategy was strategy #6 \"Develop and organize quality monitoring systems\", as it identified in all 38 of the included studies.</p><p><strong>Conclusion: </strong>This scoping review identifies D&I efforts to translate research into practice in U.S. palliative care settings. Results may contribute to enhancing future D&I initiatives for dissemination/adaptation, implementation, and sustainability efforts aiming to improve patient health outcomes and personal satisfaction with care received.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"92158167","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","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 Virtual Group Advance Care Planning Visits During the COVID-19 Pandemic. 在 COVID-19 大流行期间进行虚拟小组预先护理计划访问的可行性和有效性。
The American journal of hospice & palliative care Pub Date : 2024-10-01 Epub Date: 2024-06-19 DOI: 10.1177/10499091241233687
Lindsey Yourman, Alina Pollner, Jasmine Khatibi, Vanessa Ramos, Vaishnavi Melkote, Aoibhin O'Gorman, Erika Begler, Hillary D Lum
{"title":"Feasibility and Effectiveness of Virtual Group Advance Care Planning Visits During the COVID-19 Pandemic.","authors":"Lindsey Yourman, Alina Pollner, Jasmine Khatibi, Vanessa Ramos, Vaishnavi Melkote, Aoibhin O'Gorman, Erika Begler, Hillary D Lum","doi":"10.1177/10499091241233687","DOIUrl":"10.1177/10499091241233687","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic necessitated the transition from in person to virtual advance care planning (ACP) engagement efforts. This pilot initiative evaluated virtual group visits (GVs) and in-person GVs for ACP to determine their feasibility and effectiveness.</p><p><strong>Methods: </strong>Participants included patients in a Geriatric Medicine clinic who were referred by their primary care physician to an ACP GVs intervention. The ACP GVs had 2 sessions, led by clinicians with ACP expertise who facilitated a discussion on patients' values, goals, and preferences. Participants were provided with technical assistance to support use of the virtual platform. Evaluation included an ACP readiness survey, post-session feedback, GV observations, and electronic health record review at baseline and a 6 month follow-up for goals of care documentation and advance directives.</p><p><strong>Results: </strong>Seventy patients attended 46 ACP GVs from August 2019 to February 2022, including 16 in-person GVs and 54 virtual GVs. At a 6 month follow-up, for virtual GVs participants (n = 54), goals of care documentation increased from 31% to 93%, and advance directives increased from 22% to 30%. For in-person GVs participants (n = 16), goals of care documentation increased from 25% to 100%, and advance directives increased from 69% to 75%. All surveyed patients in both formats would recommend ACP GVs.</p><p><strong>Conclusion: </strong>ACP GVs are feasible and effective for supporting ACP, demonstrating an increase in both goals of care conversations and advance directives completion.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141428599","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Advance Care Planning in Nursing Homes: Comparing Characteristics and Outcomes of Participants and Non-Participants. 养老院的预先护理计划:比较参与者和非参与者的特征和结果。
The American journal of hospice & palliative care Pub Date : 2024-09-23 DOI: 10.1177/10499091241283399
Yi Zhou, Liyana Binte Zailan, Laurence Tan, Salina Yee Hung Annaliese Chung, Alecia Qin Ying Chua, Gerlie Contreras Magpantay, Lai Kiow Sim, Thilagavathy Muthusamy, James Alvin Low
{"title":"Advance Care Planning in Nursing Homes: Comparing Characteristics and Outcomes of Participants and Non-Participants.","authors":"Yi Zhou, Liyana Binte Zailan, Laurence Tan, Salina Yee Hung Annaliese Chung, Alecia Qin Ying Chua, Gerlie Contreras Magpantay, Lai Kiow Sim, Thilagavathy Muthusamy, James Alvin Low","doi":"10.1177/10499091241283399","DOIUrl":"https://doi.org/10.1177/10499091241283399","url":null,"abstract":"<p><strong>Background: </strong>There is an increasing need to integrate Advance Care Planning (ACP) in nursing homes (NH) due to rapid aging and burden of multimorbidity. This study examines differences in the characteristics and outcomes of NH residents enrolled in a palliative care programme who have completed ACP and those who did not.</p><p><strong>Method: </strong>We conducted a retrospective cohort analysis of 294 deceased residents enrolled into a palliative programme from 8 nursing homes in Singapore. Comparison was made between residents who completed an ACP and those who did not. Treatment preferences and place of death preferences were examined and concordance to these preferences were analyzed.</p><p><strong>Results: </strong>ACP completion rate was 81% in the cohort. Residents opting for comfort measures only had high concordance (92%) for their preferred place of death (PPOD). However, residents opting for limited intervention showed lower PPOD concordance (77%), with many dying in hospitals despite a preference for dying in the NH. Residents with ACP were significantly more likely to die in NH (68.2% vs. 36.4%) and had a longer median programme enrolment duration (131 vs. 53 days) compared to those who did not complete ACP.</p><p><strong>Conclusion: </strong>Despite high ACP completion rate in our cohort, challenges remain in aligning treatment preferences with actual care provided, particularly for residents opting for limited intervention. Future efforts should focus on increasing ACP participation and addressing systemic barriers to improve end-of-life care outcomes for NH residents.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142305277","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
End-of-Life Costs in Cancer Patients: A Systematic Review. 癌症患者的临终成本:系统回顾。
The American journal of hospice & palliative care Pub Date : 2024-09-23 DOI: 10.1177/10499091241285890
Soraya Camargo Ito Süffert, Carlos Eduardo Aliatti Mantese, Felipe Rodrigo de Castro Meira, Katia Flavia Rosso de Oliveira Trindade, Ana Paula Beck da Silva Etges, Rafael José Vargas Alves, Claudia Giuliano Bica
{"title":"End-of-Life Costs in Cancer Patients: A Systematic Review.","authors":"Soraya Camargo Ito Süffert, Carlos Eduardo Aliatti Mantese, Felipe Rodrigo de Castro Meira, Katia Flavia Rosso de Oliveira Trindade, Ana Paula Beck da Silva Etges, Rafael José Vargas Alves, Claudia Giuliano Bica","doi":"10.1177/10499091241285890","DOIUrl":"https://doi.org/10.1177/10499091241285890","url":null,"abstract":"<p><strong>Objectives: </strong>Identify the costs of an oncology patient at the end of life.</p><p><strong>Methods: </strong>A systematic literature review was conducted by screening Embase, PubMed and Lilacs databases, including all studies evaluating end-of-life care costs for cancer patients up to March 2024. The review writing followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The quality of the included studies was assessed using the Drummond checklist. The protocol is available at PROSPERO CRD42023403186.</p><p><strong>Results: </strong>A total of 733 studies were retrieved, and 43 were considered eligible. Among the studies analyzed, 41,86% included all types of neoplasms, 18.60% of lung neoplasm, All articles performed direct cost analysis, and 9.30% also performed indirect cost analysis. No study evaluated intangible costs, and most presented the macrocosting methodology from the payer's perspective. The articles included in this review presented significant heterogeneity related to populations, diagnoses, periods considered for evaluation of end-of-life care, and cost analyses. Most of the studies were from a payer perspective (74,41%) and based on macrocosting methodologies (81,39%), which limit the use of the information to evaluate variabilities in the consumption of resources.</p><p><strong>Conclusions: </strong>Considering the complexity of end-of-life care and the need for consistent data on costs in this period, new studies, mainly in low- and middle-income countries with approaches to indirect and intangible costs, with a societal perspective, are important for public policies of health in accordance with the trend of transforming value-based care, allowing the health care system to create more value for patients and their families.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142309535","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","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 and the Self-Fulfilling Prophecy in Stroke Patients: is There Anything to Fear? A Retrospective Study of Patients Who Died During Hospitalization in a Quaternary Care Hospital. 姑息治疗与中风患者的自我实现预言:有什么可怕的吗?对一家四级护理医院住院期间死亡患者的回顾性研究。
The American journal of hospice & palliative care Pub Date : 2024-09-21 DOI: 10.1177/10499091241286059
Maiara Silva Tramonte, Ana Claudia Pires Carvalho, Gabriela Figueiredo Pucci, Mariana Soares Pinheiro, Ana Elisa Vayego Fornazari, Gustavo Di Lorenzo Villas Boas, Marcos Christiano Lange, Marcos Ferreira Minicucci, Rodrigo Bazan, Laura Cardia Gomes Lopes
{"title":"Palliative Care and the Self-Fulfilling Prophecy in Stroke Patients: is There Anything to Fear? A Retrospective Study of Patients Who Died During Hospitalization in a Quaternary Care Hospital.","authors":"Maiara Silva Tramonte, Ana Claudia Pires Carvalho, Gabriela Figueiredo Pucci, Mariana Soares Pinheiro, Ana Elisa Vayego Fornazari, Gustavo Di Lorenzo Villas Boas, Marcos Christiano Lange, Marcos Ferreira Minicucci, Rodrigo Bazan, Laura Cardia Gomes Lopes","doi":"10.1177/10499091241286059","DOIUrl":"https://doi.org/10.1177/10499091241286059","url":null,"abstract":"<p><strong>Background and purpose: </strong>Primary palliative care (PC) aims to improve the quality of life for patients with acute ischemic stroke but is often misinterpreted as withdrawal of care. The self-fulfilling prophecy withdrawal bias is feared in this context of PC's early implementation. This study evaluates stroke patients who died in the hospital to determine the impact of PC evaluation.</p><p><strong>Methods: </strong>A retrospective descriptive analysis of patients who died from acute ischemic stroke was conducted. The study included patients aged ≥18 years admitted to the Stroke Unit of a quaternary hospital in Brazil from January 2017 to December 2018. The impact of PC assessment on outcomes was analyzed, with significance set at 5%.</p><p><strong>Results: </strong>Among the patients who died during hospitalization as a result of an ischemic stroke (n = 77), 39 (%) were assessed by the palliative care team. There was no difference in the total length of stay or duration of antibiotic therapy. Logistic regression corrected for significant variables from the univariate analysis revealed that PC evaluation was associated with a 31-fold increase in opioid use (<i>P</i> < 0.001), a nearly 14-fold increase in discharges to the ward, and a threefold reduction in ICU length of stay (<i>P</i> = 0.011).</p><p><strong>Conclusion: </strong>PC team involvement was associated with higher rates of discharge to the floors, inferring more time spent with family and increased opioid use, suggesting better symptom control, without reducing the overall length of stay or duration of antibiotic therapy. This underscores that PC does not equate to withdrawal of care.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142305279","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
An Authentic Learning Experience for Medical Students on Conducting a Family Meeting. 医学生开展家庭会议的真实学习体验。
The American journal of hospice & palliative care Pub Date : 2024-09-20 DOI: 10.1177/10499091241286089
Mariana Khawand-Azoulai, Elisse Kavensky, Julia Sanchez, Ileana M Leyva, Corinne Ferrari, Marcio Soares, Khin M Zaw, Maria H van Zuilen
{"title":"An Authentic Learning Experience for Medical Students on Conducting a Family Meeting.","authors":"Mariana Khawand-Azoulai, Elisse Kavensky, Julia Sanchez, Ileana M Leyva, Corinne Ferrari, Marcio Soares, Khin M Zaw, Maria H van Zuilen","doi":"10.1177/10499091241286089","DOIUrl":"https://doi.org/10.1177/10499091241286089","url":null,"abstract":"<p><strong>Background: </strong>Medical schools often lack training for serious illness conversations with patients and caregivers. We developed a curriculum in our elective Transitioning to Residency medical student course, focused on end-of-life discussions. This paper provides an overview of the curriculum and outcomes from an advanced preparation assignment and student evaluations.</p><p><strong>Methods: </strong>The curriculum included a \"hands-on\" skills session delivered via Zoom. Small groups of students (3-4) assumed roles on an interprofessional team (Intensivist, cardiologist, nurse, social worker). They met with two adult children, played by palliative/geriatric clinical staff, of a 79-year-old patient with a complex cardiac history and on ventilator support to address: (1) the patient's status, (2) goals of care, and (3) withdrawal of ventilator support. Using a flipped classroom format, students reviewed the case, role assignments, a family meeting webinar, and other materials in advance. They completed a survey reflecting on the upcoming family meeting. Afterwards, students evaluated the session.</p><p><strong>Results: </strong>Eighty students (19.6%) participated in 2021 and 2022. The reflection survey shows students agreed the patient's prognosis was poor and decision-making should be shared. They anticipated difficulty accepting prognosis, discordance between family members and/or the team, and challenging emotions. Results show a difference between the anticipated roles of the assigned physicians compared to the other disciplines. Post-session evaluations ranged from 4.7 to 4.9/5 (1 = strongly disagree, 5 = strongly agree).</p><p><strong>Conclusion: </strong>The pre-session reflection helped students prepare for their roles. The training was well received, and we hope it prepares students to take on serious illness discussions during residency.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142305278","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Impact of Facility Volume on Overall Survival in Patients With Head and Neck Cancer Undergoing Palliative Treatment. 设施容量对接受姑息治疗的头颈癌患者总生存期的影响
The American journal of hospice & palliative care Pub Date : 2024-09-08 DOI: 10.1177/10499091241281052
Praneet C Kaki, Aman M Patel, Lucy Revercomb, Russell Maxwell, Jason A Brant, Robert M Brody, Steven B Cannady, Ryan M Carey
{"title":"Impact of Facility Volume on Overall Survival in Patients With Head and Neck Cancer Undergoing Palliative Treatment.","authors":"Praneet C Kaki, Aman M Patel, Lucy Revercomb, Russell Maxwell, Jason A Brant, Robert M Brody, Steven B Cannady, Ryan M Carey","doi":"10.1177/10499091241281052","DOIUrl":"https://doi.org/10.1177/10499091241281052","url":null,"abstract":"<p><strong>Background: </strong>Treatment at high-volume facilities (HVF) has been associated with improved prognosis of HNC patients undergoing curative treatment. Whether this systemic factor influences survival outcomes of patients with HNC undergoing palliative treatment is unknown.</p><p><strong>Aim: </strong>To investigate the impact of palliative treatment facility volume on overall survival (OS) in patients with head and neck cancer (HNC).</p><p><strong>Design: </strong>The 2004 to 2018 National Cancer Database was queried retrospectively for patients with HNC undergoing palliative treatment.</p><p><strong>Setting/participants: </strong>Patients were stratified based on treatment facility volume percentile. Multivariable binary logistic and Cox proportional hazards regression models were implemented.</p><p><strong>Results: </strong>Of 8682 patients included, 1661 (19.1%) underwent palliative therapy at facilities with volume ≥80<sup>th</sup> percentile. Among 972 facilities included, 643 (66.2%), 182 (18.7%), 85 (8.8%), 44 (4.5%), and 18 (1.9%) had volume <20<sup>th</sup>, 20-40<sup>th</sup>, 40-60<sup>th</sup>, 60-80<sup>th</sup>, and ≥80<sup>th</sup> percentiles, respectively. 5-year OS rates of patients undergoing palliative therapy at facilities with volume <20<sup>th</sup>, 20-40<sup>th</sup>, 40-60<sup>th</sup>, 60-80<sup>th</sup>, and ≥80<sup>th</sup> percentile was 11%, 13%, 11%, 14%, and 23%, respectively (<i>P</i> < .001). Facility volume ≥80<sup>th</sup> percentile was associated with higher 5-year OS on multivariable Cox regression (aHR 0.34, 95% CI 0.16-0.69, <i>P</i> < .001). Surgical treatment (aOR 1.34, 95% CI 1.07-1.68, <i>P</i> = .012) was associated with undergoing treatment at facilities with volume ≥80<sup>th</sup> percentile.</p><p><strong>Conclusions: </strong>Undergoing palliative treatment at HVFs is associated with higher OS in HNC. The survival benefit derived from high facility volume should be carefully considered in the context of other patient and facility characteristics in end-of-life management, with specific emphasis on patient-directed goals of care.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-09-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142157078","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Demoralization Syndrome in End-Of-Life Cancer Patients: A Qualitative Study. 癌症临终患者的丧志综合征:定性研究。
The American journal of hospice & palliative care Pub Date : 2024-09-06 DOI: 10.1177/10499091241274315
Andrea Bovero, Alessandra Loreta Cito, Rossana Botto, Alexa Pidinchedda, Veronica Olivetti, Marcello Tucci, Giuliano Carlo Geminiani
{"title":"Demoralization Syndrome in End-Of-Life Cancer Patients: A Qualitative Study.","authors":"Andrea Bovero, Alessandra Loreta Cito, Rossana Botto, Alexa Pidinchedda, Veronica Olivetti, Marcello Tucci, Giuliano Carlo Geminiani","doi":"10.1177/10499091241274315","DOIUrl":"https://doi.org/10.1177/10499091241274315","url":null,"abstract":"<p><strong>Objectives: </strong>In our previous study we analyzed the prevalence of demoralization in a sample of 235 end-of-life cancer patients using the Demoralization Scale (DS). The findings revealed that 50.2% of the participants reported experiencing a moderate level of demoralization. The main sub-dimensions observed from the original DS were Helplessness, Disheartenment, and Sense of Failure, which we have categorized as \"Emotional Distress and Inability to Cope\". The aim of this study was to qualitatively investigate the subjective experience of this factor among a group of terminal cancer patients.</p><p><strong>Method: </strong>A sample of 30 patients was interviewed using seven open-ended questions, divided into 3 categories: helplessness, disheartenment and sense of failure. Content analysis was performed.</p><p><strong>Results: </strong>Faith and prayer, social support and preserving autonomy were the principal coping strategies used by the sample and have been classed as sources of hope. Sadness, anger, death anxiety, fear, and sickness were the most commonly expressed emotions. Faith, social support, autonomy, and fighting spirit were identified as the primary coping strategies.</p><p><strong>Conclusions: </strong>This study allowed a better understanding of the patient's subjective experience of the demoralization sub-dimension. The deepening of the topic can increase personalized clinical interventions, according to the patient's needs.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142147264","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Comparing Knowledge and Perceptions of Palliative Care Among Neuro-Oncology Patients, Caregivers, and Providers to a Representative U.S. Sample. 将神经肿瘤患者、护理人员和医疗服务提供者对姑息治疗的了解和看法与具有代表性的美国样本进行比较。
The American journal of hospice & palliative care Pub Date : 2024-09-05 DOI: 10.1177/10499091241280610
Jung-Young Kim, Juliet C Dalton, Nicole Cort, James E Herndon, Mary L Affronti, Katherine B Peters, Christopher A Jones, Margaret O Johnson
{"title":"Comparing Knowledge and Perceptions of Palliative Care Among Neuro-Oncology Patients, Caregivers, and Providers to a Representative U.S. Sample.","authors":"Jung-Young Kim, Juliet C Dalton, Nicole Cort, James E Herndon, Mary L Affronti, Katherine B Peters, Christopher A Jones, Margaret O Johnson","doi":"10.1177/10499091241280610","DOIUrl":"https://doi.org/10.1177/10499091241280610","url":null,"abstract":"<p><strong>Background: </strong>Primary brain tumors (PBTs) pose a significant health challenge, affecting patients and their caregivers. While early integration of palliative care (PC) has shown benefits in advanced cancer, its integration for PBT patients, particularly glioblastoma (GBM) patients, remains complex. We hypothesized that our previous PC integration efforts may have failed due to knowledge-gaps and misconceptions among patients, caregivers, and providers.</p><p><strong>Objective: </strong>This study aimed to identify knowledge gaps and misconceptions about PC among patients with primary brain tumors (PBTs), their caregivers, and their medical providers.</p><p><strong>Method: </strong>An electronic survey was distributed to PBT patients, caregivers, and medical providers, that included questions regarding PC from the Health Information National Trends Survey (HINTS). Survey responses were analyzed; comparisons were made between the 3 groups as well as the general population.</p><p><strong>Results: </strong>Of 141 respondents (59 patients, 57 caregivers, and 25 providers), each group held perspectives on PC differing from the general population. While all groups had an improved understanding of PC's role in symptom management, uncertainty persisted among patients and caregivers regarding life-prolonging treatment and certain PC goals like caregiver support or end-of-life care.</p><p><strong>Conclusion: </strong>Understanding gaps in knowledge and perceptions of PC among PBT patients and caregivers is crucial for effective intervention, with caregivers playing a vital role in advocating for PC. Future research should explore factors influencing these perceptions and development of targeted education to improve early PC referrals for patients with PBTs.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-09-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142142256","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Accelerated Resolution Therapy for Early Maladaptive Grief Study Protocol. 早期适应性哀伤的加速解决疗法研究方案。
The American journal of hospice & palliative care Pub Date : 2024-09-05 DOI: 10.1177/10499091241282417
Cindy Tofthagen, Kathy Sheffield, Deirdre R Pachman, Jay Mandrekar, Laura A Szalacha, Sherry S Chesak, Lori M Rhudy, Molly Kilpatrick, Harleah Buck
{"title":"Accelerated Resolution Therapy for Early Maladaptive Grief Study Protocol.","authors":"Cindy Tofthagen, Kathy Sheffield, Deirdre R Pachman, Jay Mandrekar, Laura A Szalacha, Sherry S Chesak, Lori M Rhudy, Molly Kilpatrick, Harleah Buck","doi":"10.1177/10499091241282417","DOIUrl":"https://doi.org/10.1177/10499091241282417","url":null,"abstract":"<p><p>The objective of this manuscript is to present the protocol of a study aiming to test the effects of Accelerated Resolution Therapy® (ART) on pre-loss grief and prolonged grief among older adult family caregivers. This study also aims to better understand predictors of response to ART®, and cognitive processes that occur among grieving individuals following ART®.</p><p><strong>Design: </strong>The study is a double-blinded, randomized clinical trial.</p><p><strong>Setting: </strong>This study takes place at both inpatient and outpatient palliative care and hospice programs at two Mayo Clinic sites.</p><p><strong>Participants: </strong>Participants include older adult (<math><mrow><mo>≥</mo></mrow></math> 60 years) immediate family members who are primary caregivers of someone with an advanced illness and life expectancy of less than 12 months.</p><p><strong>Intervention: </strong>Participants are randomized to either the ART® intervention group or the attention control group. In the ART® intervention, caregivers engage in imaginal exposure, lateral eye movements, and imagery rescripting via 4 sessions lasting 1-1.5 hours each. The attention control group receives a standard social work intervention, including education, resources, and active listening, which is matched for time and attention. Both interventions will longitudinally follow caregivers from active caregiving into bereavement.</p><p><strong>Outcomes measured: </strong>The primary outcomes of pre-loss grief and prolonged grief will be measured with the Pre-Loss Grief 12 item (PG-12-R) before the care recipient's death, and with the Prolonged Grief-13 (PG-13-R) afterwards.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-09-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142142255","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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