Journal of palliative medicine最新文献_第6页

Parent Perceptions of Appearance in Seriously Ill Infants in the Neonatal Intensive Care Unit. 新生儿重症监护病房重病婴儿的父母外观感知。

IF 2.1 3区医学

Journal of palliative medicine Pub Date : 2025-09-01 DOI: 10.1177/10966218251377084

Christine A Fortney, Cristy Gao, Judith A Tate

{"title":"Parent Perceptions of Appearance in Seriously Ill Infants in the Neonatal Intensive Care Unit.","authors":"Christine A Fortney, Cristy Gao, Judith A Tate","doi":"10.1177/10966218251377084","DOIUrl":"https://doi.org/10.1177/10966218251377084","url":null,"abstract":"Background: Parents of infants admitted to the neonatal intensive care unit (NICU) are often overwhelmed with distress. Infant appearance contributes to parent distress, but the meaning parents assign to their observations remains unclear. Objective: This study explored parents' thoughts about their infant's appearance during NICU admission. Design: The current question was asked as part of a broader prospective, longitudinal study that examined parent and nurse observations of infant condition and parent coping and distress. Participant data were captured each week they were enrolled (maximum 12 weeks). Setting/Subjects: Parents of infants admitted to a large level IV NICU in the Midwestern United States. Measurements: Each week parents were asked via paper-pencil survey to describe, \"What is the most distressing thing you saw in your baby during the last week?\" Handwritten responses were de-identified, transcribed, and analyzed using manifest content analysis. Comments were grouped by mothers and fathers for comparison. Results: A total of 78 mothers and 53 fathers of 82 infants completed the study. Three primary themes emerged: technology dependence, behaviors and symptoms, and physical appearance. Secondary themes of uncertainty, feelings of helplessness, lack of parental role attainment, and infant symptoms also caused distress. Parents understood there were benefits that outweighed the burdens of the treatments, and they sought to assign meaning to their experiences. Conclusions: Parents are distressed by their infant's physical appearance and their own emotional responses. Further research is needed to understand how distress affects decision-making, coping, and adjustment. Interventions to prepare parents for what they may observe in the NICU are recommended.","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":"28 S1","pages":"S27-S34"},"PeriodicalIF":2.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145176088","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

End-of Life Care Disparities Experienced by American Indian and Alaska Natives Peoples: An Analysis of Data from the 2019 Medicare Master Beneficiary Summary File. 美国印第安人和阿拉斯加原住民经历的临终关怀差异：对2019年医疗保险总受益人摘要文件数据的分析。

IF 2.1 3区医学

Journal of palliative medicine Pub Date : 2025-09-01 Epub Date: 2025-05-28 DOI: 10.1089/jpm.2024.0481

Elizabeth Anderson, R Turner Goins, Ruqoyat Abdulsalam, Luohua Jiang, Joan O'Connell

{"title":"End-of Life Care Disparities Experienced by American Indian and Alaska Natives Peoples: An Analysis of Data from the 2019 Medicare Master Beneficiary Summary File.","authors":"Elizabeth Anderson, R Turner Goins, Ruqoyat Abdulsalam, Luohua Jiang, Joan O'Connell","doi":"10.1089/jpm.2024.0481","DOIUrl":"10.1089/jpm.2024.0481","url":null,"abstract":"Background: American Indian and Alaska Native (AI/AN) adults experience higher rates of chronic diseases and mortality than non-Hispanic White (NHW) adults. Hospice can improve quality of life and reduce hospitalizations for those with terminal illness(es). Aims: To examine hospitalization and hospice use at the end-of-life between AI/AN and NHW patients and the associations of end-of-life hospitalization and hospice use with chronic diseases. Design: Using data extracted from the 2019 Medicare Master Beneficiary Summary File, we estimated regression models to examine our aims among patients who died in 2019. Setting/Participants: Our sample included 6975 AI/AN patients and a 5% sample of 53,465 NHW patients aged ≥65 years. Measurements: Data included patient demographics, health coverage, date of death, diagnosed chronic conditions, hospital inpatient days, and hospice days. The country of study was the United States. Results: AI/AN patients at the end-of-life were more likely to be hospitalized and less likely to use hospice compared with their NHW counterparts. For both AI/AN and NHW patients, having a chronic condition was associated with increased hospital days; having dementia and cancer was associated with more hospice days; while diabetes, cardiovascular disease, chronic kidney disease, end-stage renal disease, and liver disease were associated with fewer hospice days. Conclusions and Relevance: Compared with NHW patients, AI/AN patients received poorer quality end-of-life care. More efforts are needed to understand the barriers and facilitators to hospice for AI/AN patients and in developing strategies that improve access to high-quality end-of-life care for AI/AN patients.","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1185-1192"},"PeriodicalIF":2.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144159615","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

Fireproofing the Soul: Navigating Fear of the Afterlife Among Palliative Care Patients. 灵魂的防火：在姑息治疗患者中导航对来世的恐惧。

IF 2.1 3区医学

Journal of palliative medicine Pub Date : 2025-09-01 Epub Date: 2025-06-17 DOI: 10.1089/jpm.2025.0058

Ptr Shannon Blower, Jonathan Walker, Lucius Walker, Steven Radwany

引用次数: 0

Benefits and Burdens of Vaporized Botanical Cannabis Flower Bud for Cancer-Related Anorexia: A Qualitative Study of the Experiences of People with Advanced Cancer Enrolled as Inpatients in a Phase I/IIb Clinical Trial and Their Family Carers. 汽化植物大麻花蕾治疗癌症相关厌食症的益处和负担：一项I/IIb期临床试验中住院的晚期癌症患者及其家庭护理人员的定性研究

IF 2.1 3区医学

Journal of palliative medicine Pub Date : 2025-09-01 Epub Date: 2025-08-28 DOI: 10.1177/10966218251372439

Tim Luckett, Valentina Razmovski-Naumovski, Maja Garcia, Jane Phillips, Richard Chye, Beverley Noble, Belinda Fazekas, Jennifer Martin, Meera Agar

{"title":"Benefits and Burdens of Vaporized Botanical Cannabis Flower Bud for Cancer-Related Anorexia: A Qualitative Study of the Experiences of People with Advanced Cancer Enrolled as Inpatients in a Phase I/IIb Clinical Trial and Their Family Carers.","authors":"Tim Luckett, Valentina Razmovski-Naumovski, Maja Garcia, Jane Phillips, Richard Chye, Beverley Noble, Belinda Fazekas, Jennifer Martin, Meera Agar","doi":"10.1177/10966218251372439","DOIUrl":"10.1177/10966218251372439","url":null,"abstract":"Background: Clinical trials are underway of medicinal cannabis for cancer-related anorexia, using various formulations and modes of administration. Objectives: To explore the benefits and burdens of vaporized medicinal cannabis flower bud for anorexia from the perspectives of trial participants with advanced cancer and their carers. Design: People with advanced cancer enrolled as inpatients in a Phase I/IIb clinical trial, and their carers participated in face-to-face semi-structured interviews. Analysis used the framework method. Setting: Inpatient specialist palliative care. Results: Ten out of 12 trial participants and 6 carers were interviewed. All perceived benefits to eating but, in two cases, this arose from reduced nausea rather than appetite stimulation. Carers sometimes perceive more benefit than patients. Psychoactive effects were well-tolerated and even enjoyed. Burdens included throat irritation and adverse smell and taste, but these were transient. Conclusions: Vaporized flower bud warrants comparison with other formulations/modes of medicinal cannabis for cancer-related anorexia.","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1246-1250"},"PeriodicalIF":2.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144958100","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

Concordance of the World Health Organization, Oral Assessment Guide, and Tardieu Scales for Assessment of Oral Mucositis and Oral Disorders in Palliative Care Patients. 世界卫生组织的一致性，口腔评估指南，和Tardieu量表评估口腔黏膜炎和口腔疾病姑息治疗患者。

IF 2.1 3区医学

Journal of palliative medicine Pub Date : 2025-09-01 Epub Date: 2025-04-08 DOI: 10.1089/jpm.2024.0505

Chiara Mastroianni, Anna Marchetti, Marco Sguanci, Simone Amato, Diana Giannarelli, Giuseppe Casale, Michela Piredda, Maria Grazia De Marinis

{"title":"Concordance of the World Health Organization, Oral Assessment Guide, and Tardieu Scales for Assessment of Oral Mucositis and Oral Disorders in Palliative Care Patients.","authors":"Chiara Mastroianni, Anna Marchetti, Marco Sguanci, Simone Amato, Diana Giannarelli, Giuseppe Casale, Michela Piredda, Maria Grazia De Marinis","doi":"10.1089/jpm.2024.0505","DOIUrl":"10.1089/jpm.2024.0505","url":null,"abstract":"Background: Oral disorders affect function, nutrition, and well-being in palliative care (PC) patients. Existing measures focus on patients actively treated for cancer, with no validated tools for PC populations. Objectives: To evaluate the concordance between the Oral Assessment Guide (OAG), Tardieu scale (Tardieu) and World Health Organization mucositis scale (WHO) for assessing oral disorders. Design: This study was part of a secondary analysis of a prospective, open-label, single-center, phase II study involving adult PC patients with cancer or noncancer diagnoses who could swallow and had a life expectancy of more than one week. Results: A total of 837 assessments were conducted in 77 patients. Strong correlations were observed between OAG, Tardieu, and WHO scores. The OAG had better agreement with WHO, showing a symmetric score distribution without outliers. Conclusion: Both OAG and Tardieu scales are effective for assessing oral disorders in PC, but OAG's simplicity, brevity, and ability to assess individual disorders make it preferable. Further validation in PC is recommended. Study registration: The study protocol was prospectively registered at ClinicalTrials.gov: NCT04911335.","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1239-1245"},"PeriodicalIF":2.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143803413","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

Integrating Therapeutic Silence in Serious Illness Communication #509. 将治疗性沉默融入严重疾病沟通#509。

IF 2.1 3区医学

Journal of palliative medicine Pub Date : 2025-09-01 Epub Date: 2025-05-07 DOI: 10.1089/jpm.2025.0215

Alice Bottussi, William E Rosa, Jacopo D'Andria Ursoleo, Donald R Sullivan, Fabrizio Monaco

引用次数: 0

Letter: Palliative Medicine Advanced Practice Provider Productivity in Academic Medical Centers. 信函：姑息医学高级实践提供者生产力在学术医疗中心。

IF 2.1 3区医学

Journal of palliative medicine Pub Date : 2025-09-01 Epub Date: 2025-05-13 DOI: 10.1089/jpm.2025.0232

Sheri M Kittelson, Raed Al Yacoub, Celine Cattier, Diana J Wilkie, Chris A Jones

引用次数: 0

Communicating after the Death of a Child: Bereaved Parent Insights on the GRIEV_ING Framework. 孩子死后的沟通：丧亲父母对悲伤框架的见解。

IF 2.1 3区医学

Journal of palliative medicine Pub Date : 2025-09-01 Epub Date: 2025-05-19 DOI: 10.1089/jpm.2024.0250

Lena Baker, Kahla Gagne-Loparo, Noam Stern, Brittany Rouchou, Allison Remy, Ingrid M Anderson

{"title":"Communicating after the Death of a Child: Bereaved Parent Insights on the GRIEV_ING Framework.","authors":"Lena Baker, Kahla Gagne-Loparo, Noam Stern, Brittany Rouchou, Allison Remy, Ingrid M Anderson","doi":"10.1089/jpm.2024.0250","DOIUrl":"10.1089/jpm.2024.0250","url":null,"abstract":"Background: Communicating with a parent or guardian after their child's death is considered one of the most difficult tasks in medicine. While several frameworks have been developed to aid clinicians when delivering bad news, they are incomplete without the perspectives of bereaved family members. The GRIEV_ING Educational Intervention is one well-established framework for death notification that currently lacks feedback from bereaved family members. Objective: Bereaved parents have valuable insights for trainees learning to communicate with grieving families. Our aim was to elicit and analyze bereaved parent feedback on the GRIEV_ING framework. Design: Pediatric Critical Care Medicine and Pediatric Emergency Medicine fellows completed simulated conversations with standardized actors using the GRIE_VING framework. Conversations were audiovisually recorded for analysis by bereaved parent volunteers. Parent volunteers reviewed recordings of selected sessions and provided feedback on participants' performances and the GRIEV_ING framework via semistructured interviews. These interviews were then qualitatively analyzed for common themes. Setting: A pediatric tertiary hospital in the United States. Results: Five bereaved parents provided feedback on the GRIEV_ING framework. From this feedback, we identified five themes that were important to bereave parents and were absent from the GRIE_VING framework: (1) Reassurance, (2) Avoiding False Hope, (3) Preparing for the Child's Appearance, (4) Sacred Space, and (5) Offering Guidance. Conclusions: The five themes that emerged from interviews with bereaved parents demonstrate the importance of including family members when developing communication curricula. Eliciting feedback from bereaved parents added more nuance to the already well-established GRIEV_ING framework.","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1170-1174"},"PeriodicalIF":2.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144093994","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

Physicians' Difficulties and Consultation Needs in Hospitals Without Palliative Care Specialists. 无姑息治疗专科医院医师的困难与咨询需求

IF 2.1 3区医学

Journal of palliative medicine Pub Date : 2025-09-01 Epub Date: 2025-05-28 DOI: 10.1089/jpm.2025.0105

Yoko Nakazawa, Richi Takahashi, Naoto Ishimaru, Jun Hamano, Yoshiyuki Kizawa

{"title":"Physicians' Difficulties and Consultation Needs in Hospitals Without Palliative Care Specialists.","authors":"Yoko Nakazawa, Richi Takahashi, Naoto Ishimaru, Jun Hamano, Yoshiyuki Kizawa","doi":"10.1089/jpm.2025.0105","DOIUrl":"10.1089/jpm.2025.0105","url":null,"abstract":"Background: Despite the proven effectiveness of palliative care, approximately half of cancer patients in Japan die in hospitals without palliative care specialists, and the difficulties physicians perceive when providing such care remain unclear. Objectives: To explore palliative care difficulties perceived by physicians in nonspecialist hospitals and identify consultation needs, focusing on their association with physicians' backgrounds and hospital characteristics. Design, Subjects: A nationwide cross-sectional survey of 2160 hospital-based physicians from 126 hospitals and 579 certified primary care physicians in Japan was conducted between December 2023 and January 2024. Measurements: Physicians' palliative care difficulties and consultation needs were assessed. Generalized linear models were employed to identify the factors associated with difficulties. Logistic regression was used to compare consultation needs with hospital cancer mortality. Results: A total of 430 responses were analyzed. The score for difficulties in alleviating symptoms ranged from 8.0 to 10.0 (score range 3.0-12.0), with a significant difference by number of cancer patients treated annually (<10 patients: 10.0 vs. >50 patients: 8.4, difference -1.6, 95%CI: -2.4, -0.8). Physicians in communities with emergency admission facilities reported fewer difficulties. Unfamiliar medications (57.7%-60.2%) and advice on medication choice (53.4%-60.1%) presented the most consultation needs. Physicians in hospitals with <50 cancer deaths annually had significant consultation needs for nerve blocks (OR 1.57, 95%CI: 1.05-2.35) and radiation therapy (OR 2.47, 95%CI: 1.62-3.82) for symptom relief. Conclusions: Difficulties and consultation needs varied by physician and hospital factors. Targeted support may enhance palliative care delivery in nonspecialist hospitals.","PeriodicalId":16656,"journal":{"name":"Journal of palliative medicine","volume":" ","pages":"1220-1229"},"PeriodicalIF":2.1,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144159618","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

Exit Strategies: Living Lessons from Dying People. 退出策略：垂死之人的生活经验。

IF 2.1 3区医学

Journal of palliative medicine Pub Date : 2025-09-01 Epub Date: 2025-05-15 DOI: 10.1089/jpm.2025.0222

Morgan M Nakatani

引用次数: 0