首页 > 最新文献

Journal of palliative medicine最新文献

英文 中文
Our Unrealized Imperative: Integrating Mental Health Care into Hospice and Palliative Care. 我们未实现的当务之急:将精神卫生保健纳入临终关怀和姑息治疗。
IF 2.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-12-10 DOI: 10.1089/jpm.2024.0366
Susan Block

The field of Hospice and Palliative Medicine (HPM) has its roots in the principles, promulgated by Dame Cicely Saunders, that patient and family are the unit of care and that comprehensive integration of physical, psychological, social, and spiritual care is necessary to address suffering in all its dimensions. Although we aspire to provide comprehensive care for our patients, most hospice and palliative care (HPM) physicians lack basic competencies for identifying and managing patients with psychological distress and mental health distress and disorders, a growing segment of our clinical population. In this article, I argue that we are not living up to the founding values of our field in how we practice, how we educate our trainees, our research, and in how we pursue our own professional development as faculty. The history of our field, the nature of our clinical workforce, the culture of PC, and our educational programs all contribute to our current practice model, which is not adequate to meet the mental health needs of our patients. I propose strategies to address these challenges focused on enhancing integration between psychiatry/psychology and HPM, changes in fellowship education and faculty development, addressing the stigma against people with mental health diagnoses, and addressing system and cultural challenges that limit our ability to provide the kind of comprehensive, integrative care that our field aspires to.

临终关怀和姑息医学(HPM)领域源于西塞利·桑德斯夫人(Dame Cicely Saunders)颁布的原则,即病人和家庭是护理的单位,身体、心理、社会和精神护理的全面整合是解决所有方面痛苦的必要条件。虽然我们渴望为我们的病人提供全面的护理,但大多数临终关怀和姑息治疗(HPM)医生缺乏识别和管理有心理困扰和精神健康困扰和障碍的病人的基本能力,这是我们临床人口中越来越多的一部分。在这篇文章中,我认为我们在如何实践、如何教育学员、如何研究以及如何追求自己作为教师的专业发展方面没有达到我们这个领域的创始价值观。我们领域的历史,我们临床工作人员的性质,PC的文化,以及我们的教育计划都促成了我们目前的实践模式,这不足以满足我们病人的心理健康需求。我提出了应对这些挑战的策略,重点是加强精神病学/心理学与HPM之间的整合,改变奖学金教育和教师发展,解决对精神健康诊断患者的污名,以及解决限制我们提供我们领域所渴望的全面综合护理的能力的系统和文化挑战。
{"title":"Our Unrealized Imperative: Integrating Mental Health Care into Hospice and Palliative Care.","authors":"Susan Block","doi":"10.1089/jpm.2024.0366","DOIUrl":"10.1089/jpm.2024.0366","url":null,"abstract":"<p><p>The field of Hospice and Palliative Medicine (HPM) has its roots in the principles, promulgated by Dame Cicely Saunders, that patient and family are the unit of care and that comprehensive integration of physical, psychological, social, and spiritual care is necessary to address suffering in all its dimensions. Although we aspire to provide comprehensive care for our patients, most hospice and palliative care (HPM) physicians lack basic competencies for identifying and managing patients with psychological distress and mental health distress and disorders, a growing segment of our clinical population. In this article, I argue that we are not living up to the founding values of our field in how we practice, how we educate our trainees, our research, and in how we pursue our own professional development as faculty. The history of our field, the nature of our clinical workforce, the culture of PC, and our educational programs all contribute to our current practice model, which is not adequate to meet the mental health needs of our patients. I propose strategies to address these challenges focused on enhancing integration between psychiatry/psychology and HPM, changes in fellowship education and faculty development, addressing the stigma against people with mental health diagnoses, and addressing system and cultural challenges that limit our ability to provide the kind of comprehensive, integrative care that our field aspires to.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"151-161"},"PeriodicalIF":2.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142800984","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
In this Issue.
IF 2.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 DOI: 10.1089/jpm.2024.0519
{"title":"In this Issue.","authors":"","doi":"10.1089/jpm.2024.0519","DOIUrl":"https://doi.org/10.1089/jpm.2024.0519","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":"28 2","pages":"143"},"PeriodicalIF":2.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143458401","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Caring for Undocumented Immigrant Patients at the End of Life #495. 照顾生命尽头的无证移民患者#495。
IF 2.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-12-09 DOI: 10.1089/jpm.2024.0506
Suha Na Javeed, Grace N La Torre
{"title":"Caring for Undocumented Immigrant Patients at the End of Life #495.","authors":"Suha Na Javeed, Grace N La Torre","doi":"10.1089/jpm.2024.0506","DOIUrl":"10.1089/jpm.2024.0506","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"282-283"},"PeriodicalIF":2.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142794828","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Challenges in Prognostication of an Older Adult with Severe Obesity and End-Stage Heart Failure: A Case Study. 对患有严重肥胖症和终末期心力衰竭的老年人进行诊断的挑战:病例研究。
IF 2.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-07-15 DOI: 10.1089/jpm.2024.0101
Sara Margosian, Caroline Vitale, Shenbagam Dewar

In this report, we present the case of an older adult with severe obesity and multiple comorbidities, including heart failure with preserved ejection fraction (HFpEF), who experienced a prolonged decline complicated by recurrent hospitalizations and skilled nursing facility stays during the two years preceding death. This case highlights challenges in prognostication attributed to severe obesity complicated by HFpEF, which likely delayed goals of care conversations, and access to palliative care and hospice, despite high symptom burden. We discuss prognostic uncertainty among those with severe obesity and outline potential future directions.

在本报告中,我们介绍了一位患有严重肥胖症和多种并发症(包括射血分数保留型心力衰竭(HFpEF))的老年人的病例,该患者在去世前的两年中,由于反复住院和入住专业护理机构,导致病情长期恶化。本病例强调了严重肥胖并发 HFpEF 给预后带来的挑战,尽管症状负担很重,但这很可能延迟了护理目标对话以及姑息治疗和临终关怀的获得。我们讨论了重度肥胖患者预后的不确定性,并概述了潜在的未来发展方向。
{"title":"Challenges in Prognostication of an Older Adult with Severe Obesity and End-Stage Heart Failure: A Case Study.","authors":"Sara Margosian, Caroline Vitale, Shenbagam Dewar","doi":"10.1089/jpm.2024.0101","DOIUrl":"10.1089/jpm.2024.0101","url":null,"abstract":"<p><p>In this report, we present the case of an older adult with severe obesity and multiple comorbidities, including heart failure with preserved ejection fraction (HFpEF), who experienced a prolonged decline complicated by recurrent hospitalizations and skilled nursing facility stays during the two years preceding death. This case highlights challenges in prognostication attributed to severe obesity complicated by HFpEF, which likely delayed goals of care conversations, and access to palliative care and hospice, despite high symptom burden. We discuss prognostic uncertainty among those with severe obesity and outline potential future directions.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"286-289"},"PeriodicalIF":2.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141620156","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
The CMO Curtain. CMO 帷幕
IF 2.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-10-28 DOI: 10.1089/jpm.2024.0438
Jennifer A Carolan
{"title":"The CMO Curtain.","authors":"Jennifer A Carolan","doi":"10.1089/jpm.2024.0438","DOIUrl":"10.1089/jpm.2024.0438","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"284"},"PeriodicalIF":2.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142502400","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Not Either Yes or No, Rather Both Yes and No Simultaneously. 不是 "是 "或 "否",而是同时 "是 "和 "否"。
IF 2.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-11-28 DOI: 10.1089/jpm.2024.0376
Peter Heikkinen
{"title":"Not Either Yes or No, Rather Both Yes and No Simultaneously.","authors":"Peter Heikkinen","doi":"10.1089/jpm.2024.0376","DOIUrl":"10.1089/jpm.2024.0376","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"285"},"PeriodicalIF":2.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142739600","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Providing Palliative Care for Sexual and Gender Minority Individuals: A Qualitative Interview Study of Physicians' Attitudes and Experiences. 为性少数群体和性别少数群体提供姑息治疗:对医生态度和经验的定性访谈研究。
IF 2.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-11-28 DOI: 10.1089/jpm.2024.0283
Alexandre Coholan, Justin J Sanders, Carey Candrian

Introduction: Sexual and gender minority (SGM) individuals face increased risk of receiving suboptimal care, including palliative care. Despite research demonstrating strategies to improve care, little is known about the experiences of palliative care clinicians providing care to these communities. Objectives: The primary aim of this study is to characterize attitudes and practices of palliative care physicians around providing care to SGM individuals. Design: This exploratory, qualitative study used semi-structured interviewing. Interviews were transcribed and coded using reflexive thematic analysis. Setting and Participants: Twenty-four palliative care physicians practicing in the homecare, hospice, and hospital settings from geographically diverse sites across Canada were recruited from palliative care organizations using convenience and snowball sampling. Results: Four main themes represent perspectives on improving palliative care for SGM individuals: (1) increasing experience with and knowledge about SGM communities increases clinicians' confidence and competency; (2) standardizing inclusive sexual orientation and gender identity (SOGI) data collection and documentation can improve patient care; (3) addressing individual, systemic, and societal biases may improve palliative care provided to SGM individuals; and (4) knowing SOGI improves care quality. Conclusions: Clinicians must familiarize themselves with the importance of SOGI to the care provided as well as the palliative care needs of SGM communities. Institutions should provide tailored training around the unique needs of SGM patients and implement policies and tools that standardize sexual and gender orientation data collection and documentation.

导言:性与性别少数群体(SGM)面临着更大的风险,他们可能会接受到不理想的护理,包括姑息关怀。尽管有研究表明了改善姑息关怀的策略,但人们对为这些群体提供姑息关怀的临床医生的经验却知之甚少。研究目的本研究的主要目的是了解姑息关怀医生在为 SGM 患者提供关怀服务时的态度和做法。设计:这项探索性定性研究采用半结构式访谈。采用反思性主题分析法对访谈内容进行转录和编码。环境和参与者:采用方便取样和滚雪球取样的方法,从姑息关怀组织中招募了 24 名姑息关怀医生,他们分别来自加拿大各地的家庭护理、临终关怀和医院机构。结果:四个主题代表了改善对 SGM 患者姑息关怀的观点:(1)增加对 SGM 社区的经验和了解可增强临床医生的信心和能力;(2)将包容性的性取向和性别认同(SOGI)数据收集和记录标准化可改善患者关怀;(3)解决个人、系统和社会偏见可改善对 SGM 患者的姑息关怀;以及(4)了解 SOGI 可提高关怀质量。结论:临床医生必须熟悉SOGI对所提供护理的重要性以及SGM群体的姑息关怀需求。医疗机构应针对 SGM 患者的独特需求提供有针对性的培训,并实施相关政策和工具,规范性取向和性别取向数据的收集和记录。
{"title":"Providing Palliative Care for Sexual and Gender Minority Individuals: A Qualitative Interview Study of Physicians' Attitudes and Experiences.","authors":"Alexandre Coholan, Justin J Sanders, Carey Candrian","doi":"10.1089/jpm.2024.0283","DOIUrl":"10.1089/jpm.2024.0283","url":null,"abstract":"<p><p><b><i>Introduction:</i></b> Sexual and gender minority (SGM) individuals face increased risk of receiving suboptimal care, including palliative care. Despite research demonstrating strategies to improve care, little is known about the experiences of palliative care clinicians providing care to these communities. <b><i>Objectives:</i></b> The primary aim of this study is to characterize attitudes and practices of palliative care physicians around providing care to SGM individuals. <b><i>Design:</i></b> This exploratory, qualitative study used semi-structured interviewing. Interviews were transcribed and coded using reflexive thematic analysis. <b><i>Setting and Participants:</i></b> Twenty-four palliative care physicians practicing in the homecare, hospice, and hospital settings from geographically diverse sites across Canada were recruited from palliative care organizations using convenience and snowball sampling. <b><i>Results:</i></b> Four main themes represent perspectives on improving palliative care for SGM individuals: (1) increasing experience with and knowledge about SGM communities increases clinicians' confidence and competency; (2) standardizing inclusive sexual orientation and gender identity (SOGI) data collection and documentation can improve patient care; (3) addressing individual, systemic, and societal biases may improve palliative care provided to SGM individuals; and (4) knowing SOGI improves care quality. <b><i>Conclusions:</i></b> Clinicians must familiarize themselves with the importance of SOGI to the care provided as well as the palliative care needs of SGM communities. Institutions should provide tailored training around the unique needs of SGM patients and implement policies and tools that standardize sexual and gender orientation data collection and documentation.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"224-233"},"PeriodicalIF":2.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142739609","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Regret in Clinical Trial Participation Among Cancer Patients. 癌症患者参与临床试验后的后悔。
IF 2.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-11-28 DOI: 10.1089/jpm.2024.0147
Kayla M Baker, Lucy Andersen, Molly McHugh, Anessa M Foxwell, Qiuping Zhou, Sarah J Ratcliffe, Liming Huang, Subhash Aryal, Christine Grady, Connie M Ulrich

Background: This analysis examined regret from participation in cancer clinical trials (CCT) and explored associations between regret and symptom burden, symptom bother, therapeutic optimism, and the importance of spiritual beliefs. Methods: This is a secondary analysis of cross-sectional data from a study of American CCT patient-participants conducted from 2015 to 2019. Descriptive statistics, bivariate associations, and logistic regression were used to evaluate regret in this sample (n = 325). Results: About 10% of the sample reported regret. Younger age, increased symptom burden, increased symptom bother, increased severe symptoms, and a lower level of therapeutic optimism were significantly associated with regret (p < 0.05) compared to those who did not experience regret. The final regression model identified that younger age, symptom burden, and therapeutic optimism significantly predicted regret (p < 0.05). Conclusions: Understanding regret among research participants may improve CCT retention and ensure ethical research practices. Symptom experiences may play a key role in experiences of regret in CCT participation.

背景:这项分析研究了因参与癌症临床试验(CCT)而产生的遗憾,并探讨了遗憾与症状负担、症状困扰、治疗乐观主义以及精神信仰的重要性之间的关联。研究方法这是对2015年至2019年进行的一项美国CCT患者参与者研究的横截面数据进行的二次分析。使用描述性统计、二元关联和逻辑回归来评估该样本(n = 325)中的遗憾。结果显示约 10% 的样本报告了遗憾。与没有后悔经历的人相比,年龄较小、症状负担加重、症状困扰增加、严重症状增加以及治疗乐观程度较低与后悔有显著关联(p < 0.05)。最终的回归模型表明,年龄较小、症状负担和治疗乐观程度明显预示着后悔(p < 0.05)。结论:了解研究参与者的遗憾可以提高 CCT 的保留率,确保研究实践符合道德规范。在参与 CCT 研究的过程中,症状体验可能是造成遗憾体验的关键因素。
{"title":"Regret in Clinical Trial Participation Among Cancer Patients.","authors":"Kayla M Baker, Lucy Andersen, Molly McHugh, Anessa M Foxwell, Qiuping Zhou, Sarah J Ratcliffe, Liming Huang, Subhash Aryal, Christine Grady, Connie M Ulrich","doi":"10.1089/jpm.2024.0147","DOIUrl":"10.1089/jpm.2024.0147","url":null,"abstract":"<p><p><b><i>Background:</i></b> This analysis examined regret from participation in cancer clinical trials (CCT) and explored associations between regret and symptom burden, symptom bother, therapeutic optimism, and the importance of spiritual beliefs. <b><i>Methods:</i></b> This is a secondary analysis of cross-sectional data from a study of American CCT patient-participants conducted from 2015 to 2019. Descriptive statistics, bivariate associations, and logistic regression were used to evaluate regret in this sample (<i>n</i> = 325). <b><i>Results:</i></b> About 10% of the sample reported regret. Younger age, increased symptom burden, increased symptom bother, increased severe symptoms, and a lower level of therapeutic optimism were significantly associated with regret (<i>p</i> < 0.05) compared to those who did not experience regret. The final regression model identified that younger age, symptom burden, and therapeutic optimism significantly predicted regret (<i>p</i> < 0.05). <b><i>Conclusions:</i></b> Understanding regret among research participants may improve CCT retention and ensure ethical research practices. Symptom experiences may play a key role in experiences of regret in CCT participation.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"185-192"},"PeriodicalIF":2.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142739729","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Letter to the Editor: Collaborative Management of Suspected Anencephaly as Part of Perinatal Palliative Care. 致编辑的信:作为围产期姑息治疗一部分的疑似无脑畸形的协同管理。
IF 2.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-12-09 DOI: 10.1089/jpm.2024.0134
Christine Mott, William Lo
{"title":"<i>Letter to the Editor:</i> Collaborative Management of Suspected Anencephaly as Part of Perinatal Palliative Care.","authors":"Christine Mott, William Lo","doi":"10.1089/jpm.2024.0134","DOIUrl":"10.1089/jpm.2024.0134","url":null,"abstract":"","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"147-148"},"PeriodicalIF":2.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142794826","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
"If We Don't Beat It, How Long Will It Take?" Worries and Concerns of Children with Advanced Cancer and Their Parents. "如果我们不能战胜它,还要等多久?晚期癌症患儿及其父母的担忧和顾虑。
IF 2.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-11-28 DOI: 10.1089/jpm.2024.0307
Megan R Schaefer, Andrea Wojtowicz, Molly Gardner, Priyal Patel, Malcolm Sutherland-Foggio, Ansley E Kenney, Alexandra C Himelhoch, Lisa Humphrey, Randal Olshefski, Micah A Skeens, Cynthia Gerhardt

Background: Navigating pediatric advanced cancer is challenging for children and parents, resulting in increased risk for psychological distress. While research has explored parent worries/concerns, few studies have included children's perspectives. Objectives: To explore worries/concerns in children with advanced cancer and their parents. Design: This was a part of a larger, mixed-methods study examining shared decision-making. Setting/Subjects: Children (of age 5-25) with advanced cancer (i.e., relapsed/refractory disease or physician estimated prognosis of <60%) and their parents in the Midwestern United States. Measurements: Children and parents completed the Response to Stress Questionnaire and individual semi-structured interviews. Coders analyzed the qualitative data via thematic analysis. Results: Parent and child worries/concerns included: (1) prognosis, (2) symptom burden and side effects of treatment, (3) emotional well-being, (4) impact on future, and (5) no concerns/uncertainty (child-only theme). Benefit-finding emerged as a minor theme. Many expressed concerns about treatment response, resulting in worries about death/dying. Others shared fear about managing current symptoms and the impact of long-term treatment side effects on the child's future. Parents reported worry about their child's emotional well-being, while children expressed worries about their families if they died. While all parents were able to identify worries/concerns, some children denied worries/concerns. Quantitatively, parents similarly identified worries about prognosis and symptom burden but also endorsed concern about being unable to help their child feel better. Conclusions: Our findings highlight similarities and differences in worries/concerns among children and parents as they navigate a child's advanced cancer journey. Early integration of palliative care may be helpful in mitigating these issues.

背景:儿科晚期癌症的治疗对儿童和家长来说都具有挑战性,导致心理困扰的风险增加。虽然有研究探讨了父母的担忧/顾虑,但很少有研究纳入儿童的观点。研究目的探讨晚期癌症儿童及其父母的担忧/顾虑。设计:这是一项规模较大的混合方法研究的一部分,研究内容是共同决策。环境/受试者:癌症晚期儿童(5-25 岁)(即复发/难治性疾病或医生估计的预后):儿童和家长完成压力反应问卷和个人半结构化访谈。编码人员通过主题分析对定性数据进行了分析。结果家长和儿童的担忧/顾虑包括(1) 预后,(2) 症状负担和治疗副作用,(3) 情绪稳定,(4) 对未来的影响,(5) 不担心/不确定(仅儿童主题)。获益是一个次要主题。许多人对治疗反应表示担忧,从而担心死亡/死亡。其他人则担心如何控制目前的症状以及长期治疗副作用对儿童未来的影响。家长们表示担心孩子的情绪健康,而孩子们则表示担心自己一旦死亡会影响家人。虽然所有家长都能说出自己的担心/忧虑,但有些儿童却否认自己的担心/忧虑。从数量上看,家长们同样表示出对预后和症状负担的担忧,但同时也表示出对无法帮助孩子感觉更好的担忧。结论:我们的研究结果突显了儿童和家长在经历儿童晚期癌症过程中的担忧/顾虑的异同。早期整合姑息关怀可能有助于缓解这些问题。
{"title":"\"If We Don't Beat It, How Long Will It Take?\" Worries and Concerns of Children with Advanced Cancer and Their Parents.","authors":"Megan R Schaefer, Andrea Wojtowicz, Molly Gardner, Priyal Patel, Malcolm Sutherland-Foggio, Ansley E Kenney, Alexandra C Himelhoch, Lisa Humphrey, Randal Olshefski, Micah A Skeens, Cynthia Gerhardt","doi":"10.1089/jpm.2024.0307","DOIUrl":"10.1089/jpm.2024.0307","url":null,"abstract":"<p><p><b><i>Background:</i></b> Navigating pediatric advanced cancer is challenging for children and parents, resulting in increased risk for psychological distress. While research has explored parent worries/concerns, few studies have included children's perspectives. <b><i>Objectives:</i></b> To explore worries/concerns in children with advanced cancer and their parents. <b><i>Design:</i></b> This was a part of a larger, mixed-methods study examining shared decision-making. <b><i>Setting/Subjects:</i></b> Children (of age 5-25) with advanced cancer (i.e., relapsed/refractory disease or physician estimated prognosis of <60%) and their parents in the Midwestern United States. <b><i>Measurements:</i></b> Children and parents completed the Response to Stress Questionnaire and individual semi-structured interviews. Coders analyzed the qualitative data via thematic analysis. <b><i>Results:</i></b> Parent and child worries/concerns included: (1) prognosis, (2) symptom burden and side effects of treatment, (3) emotional well-being, (4) impact on future, and (5) no concerns/uncertainty (child-only theme). Benefit-finding emerged as a minor theme. Many expressed concerns about treatment response, resulting in worries about death/dying. Others shared fear about managing current symptoms and the impact of long-term treatment side effects on the child's future. Parents reported worry about their child's emotional well-being, while children expressed worries about their families if they died. While all parents were able to identify worries/concerns, some children denied worries/concerns. Quantitatively, parents similarly identified worries about prognosis and symptom burden but also endorsed concern about being unable to help their child feel better. <b><i>Conclusions:</i></b> Our findings highlight similarities and differences in worries/concerns among children and parents as they navigate a child's advanced cancer journey. Early integration of palliative care may be helpful in mitigating these issues.</p>","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"207-216"},"PeriodicalIF":2.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142739509","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
期刊
Journal of palliative medicine
全部 Acc. Chem. Res. ACS Applied Bio Materials ACS Appl. Electron. Mater. ACS Appl. Energy Mater. ACS Appl. Mater. Interfaces ACS Appl. Nano Mater. ACS Appl. Polym. Mater. ACS BIOMATER-SCI ENG ACS Catal. ACS Cent. Sci. ACS Chem. Biol. ACS Chemical Health & Safety ACS Chem. Neurosci. ACS Comb. Sci. ACS Earth Space Chem. ACS Energy Lett. ACS Infect. Dis. ACS Macro Lett. ACS Mater. Lett. ACS Med. Chem. Lett. ACS Nano ACS Omega ACS Photonics ACS Sens. ACS Sustainable Chem. Eng. ACS Synth. Biol. Anal. Chem. BIOCHEMISTRY-US Bioconjugate Chem. BIOMACROMOLECULES Chem. Res. Toxicol. Chem. Rev. Chem. Mater. CRYST GROWTH DES ENERG FUEL Environ. Sci. Technol. Environ. Sci. Technol. Lett. Eur. J. Inorg. Chem. IND ENG CHEM RES Inorg. Chem. J. Agric. Food. Chem. J. Chem. Eng. Data J. Chem. Educ. J. Chem. Inf. Model. J. Chem. Theory Comput. J. Med. Chem. J. Nat. Prod. J PROTEOME RES J. Am. Chem. Soc. LANGMUIR MACROMOLECULES Mol. Pharmaceutics Nano Lett. Org. Lett. ORG PROCESS RES DEV ORGANOMETALLICS J. Org. Chem. J. Phys. Chem. J. Phys. Chem. A J. Phys. Chem. B J. Phys. Chem. C J. Phys. Chem. Lett. Analyst Anal. Methods Biomater. Sci. Catal. Sci. Technol. Chem. Commun. Chem. Soc. Rev. CHEM EDUC RES PRACT CRYSTENGCOMM Dalton Trans. Energy Environ. Sci. ENVIRON SCI-NANO ENVIRON SCI-PROC IMP ENVIRON SCI-WAT RES Faraday Discuss. Food Funct. Green Chem. Inorg. Chem. Front. Integr. Biol. J. Anal. At. Spectrom. J. Mater. Chem. A J. Mater. Chem. B J. Mater. Chem. C Lab Chip Mater. Chem. Front. Mater. Horiz. MEDCHEMCOMM Metallomics Mol. Biosyst. Mol. Syst. Des. Eng. Nanoscale Nanoscale Horiz. Nat. Prod. Rep. New J. Chem. Org. Biomol. Chem. Org. Chem. Front. PHOTOCH PHOTOBIO SCI PCCP Polym. Chem.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1