Palliative & Supportive Care最新文献

{"title":"I Am More.","authors":"Zhaohui Su","doi":"10.1017/S1478951525000215","DOIUrl":"https://doi.org/10.1017/S1478951525000215","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e82"},"PeriodicalIF":1.9,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143693436","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and validation of the Terminal Delirium-Related Distress Scale - Shortform.","authors":"Megumi Uchida, Tatsuo Akechi, Tatsuya Morita, Kento Masukawa, Yoshiyuki Kizawa, Satoru Tsuneto, Mitsunori Miyashita","doi":"10.1017/S1478951525000227","DOIUrl":"10.1017/S1478951525000227","url":null,"abstract":"<p><strong>Background: </strong>We previously developed a 24-item Terminal Delirium-Related Distress Scale (TDDS) to evaluate patient and family distress due to terminal delirium. However, a scale with fewer evaluation items was needed to reduce the burden on terminally ill patients and their families. Thus, the TDDS Shortform (TDDS-SF) was developed, and the validity and reliability of the scale were evaluated.</p><p><strong>Objectives: </strong>The aim of this study is to evaluate the validity and reliability of TDDS-SF.</p><p><strong>Methods: </strong>Items with insufficient loading (<0.6) based on factor analysis were removed from the TDDS. Palliative care experts reviewed each item and checked the structure of the scale. Based on their feedback, we developed the TDDS-SF, a 15-item questionnaire consisting of 4 subscales, including \"Care for the family,\" \"Ability to communicate,\" \"Psychiatric symptoms,\" and \"Adequate information and discussion about treatment for delirium.\" A cross-sectional, self-completed questionnaire survey of bereaved families of cancer patients who were admitted to a hospice/palliative care unit was conducted in August 2018. The survey included the TDDS-SF, Good Death Inventory (GDI), Care Evaluation Scale (CES), and distress score in the Delirium Experience Questionnaire. The validity, including construct validity, convergent validity, discriminant validity, and internal consistency, and reliability, including the Cronbach's alpha coefficient for internal consistency, of the TDDS-SF were evaluated.</p><p><strong>Results: </strong>The study included 366 bereaved family members. Factor analysis revealed good construct validity. Convergent validity was demonstrated based on good correlations with the CES (<i>r</i> = - 0.54, <i>P</i> < 0.001) and the GDI (<i>r</i> = - 0.54, <i>P</i> < 0.001). Discriminant validity was demonstrated by a low correlation (<i>r</i> = 0.23, <i>P</i> < 0.001) with the distress scores of bereaved families. The internal consistency was also good (Cronbach's alpha = 0.70-0.94).</p><p><strong>Significance of results: </strong>The TDDS-SF is a valid and feasible tool for assessing irreversible terminal delirium-related distress. A study targeting patients and their families with end-of-life delirium is planned for the near future.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e78"},"PeriodicalIF":1.9,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626481","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How to improve dealing with desire to die in hospice volunteers and informal caregivers.","authors":"Kathleen Boström, Thomas Dojan, Axel Doll, Thomas Montag, Raymond Voltz, Kerstin Kremeike","doi":"10.1017/S1478951525000239","DOIUrl":"10.1017/S1478951525000239","url":null,"abstract":"<p><strong>Objectives: </strong>Up to 40% of severely ill patients report at least an occasional desire to die, opening up not only to professionals but also to hospice volunteers and patients' informal caregivers. Based on an existing, evaluated 2-day desire to die training for professionals, we intend to adapt the training for hospice volunteers and informal caregivers, both face-to-face and online and provide a preliminary evaluation.</p><p><strong>Methods: </strong>Multi-method approach to (1) assess needs regarding content and form for (online) trainings for hospice volunteers and formats for informal care givers using online focus groups and (additional) individual interviews, (2) adapt existing training materials for both groups accompanied by expert discussion, and (3) pilot and evaluate the (online) trainings and formats through (online) surveys.</p><p><strong>Results: </strong>In an online focus group with <i>n</i> = 4 informal caregivers and <i>n</i> = 2 additional online interviews, participants reported wishes for form (e.g. short formats in plain language) and content (e.g. needs in relation to health professional and patient). The <i>n</i> = 6 hospice volunteers also wished for form (e.g. plain language) and content (e.g. volunteer role). Results were implemented in (a) a volunteer adaptation of the training, e.g. with target-group-specific case studies and (b) the development of an online format for informal caregivers. For evaluation, we conducted (a) 2 face-to-face trainings for hospice volunteers (<i>n</i> = 14 and <i>n</i> = 20) and (b) 2 online formats for informal caregivers (<i>n</i> = 7 and <i>n</i> = 13). Both groups benefited strongly from participation.</p><p><strong>Significance of results: </strong>Hospice volunteers and informal caregivers deal with patients' desires to die - often without being adequately prepared. Through (online) trainings and formats, their awareness and self-confidence regarding desire to die can increase. It is therefore of high relevance to meet the demand for easily accessible and target group specific (online) trainings on dealing with desire to die.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e77"},"PeriodicalIF":1.9,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626482","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Peaceful acceptance and struggle with terminal cancer: The role of mindfulness, self-compassion, and body image distress.","authors":"Francesco De Vincenzo, Rossella Mattea Quinto, Luca Iani, Sieva Durante, Chiara Scalpelli, Luigi Lombardo","doi":"10.1017/S1478951525000094","DOIUrl":"10.1017/S1478951525000094","url":null,"abstract":"<p><strong>Objectives: </strong>This study aimed to examine the extent to which mindfulness, self-compassion, and body image distress are associated with peaceful acceptance or struggle with illness in terminally ill cancer patients, after controlling for psychological distress, sociodemographic characteristics (age, gender, education, marital status), and clinical characteristics (body mass index, Karnofsky Performance Status, time since diagnosis).</p><p><strong>Methods: </strong>A cross-sectional study was conducted with 135 terminally ill cancer patients. Participants were consecutively sampled. Two five-step hierarchical regression models were performed, one for peaceful acceptance and the other for struggle with illness. The models included sociodemographic (step 1), clinical characteristics (step 2), psychological distress (step 3), mindfulness and self-compassion (step 4), and body image distress (step 5).</p><p><strong>Results: </strong>Body image distress was negatively associated with peaceful acceptance after controlling for the other variables. Both body image distress and self-compassion were uniquely associated with struggle with illness, in a positive and negative direction, respectively. The overall models explained 33% of the variance in peaceful acceptance and 61% in struggle with illness.</p><p><strong>Significance of results: </strong>Targeting body image distress may be important for both enhancing peaceful acceptance and reducing struggle with one's terminal condition. Addressing self-compassion, however, may help patients alleviate the struggle alone. These findings suggest that peaceful acceptance and struggle with illness may follow different clinical pathways with partly different underlying mechanisms. This study provides a foundation for future research to develop interventions for body image and self-compassion specifically tailored to the needs of terminally ill cancer patients.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e76"},"PeriodicalIF":1.9,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626483","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Resilient living program for patients with advanced cancer and their caregivers.","authors":"Sherry Chesak, Lori Rhudy, Susanne M Cutshall, Konstantinos Leventakos, Cindy Tofthagen, Jay Mandrekar, Teresa A Rummans, Matthew M Clark, Shawna Ehlers, Maria I Lapid, Amit Sood, Deirdre R Pachman","doi":"10.1017/S1478951524002128","DOIUrl":"10.1017/S1478951524002128","url":null,"abstract":"<p><strong>Objectives: </strong>Patients with advanced cancer and their caregivers experience a substantial amount of anxiety and distress. The purpose of this study was to assess the feasibility, acceptability, and preliminary effects of an 8-week, remotely delivered Resilient Living Program (RLP) for adult patients with advanced cancer and their caregivers.</p><p><strong>Methods: </strong>Eligible patients included adults (≥18 years) with advanced cancer. Their caregiver had the option to participate. The RLP components included online modules, a print journal, and 4 video-telehealth-delivered sessions. Content focused on techniques for managing stress and building resilience (mindful presence, uplifting emotions, reframing experiences through practicing principles of gratitude, compassion, acceptance, meaning, and forgiveness). Feasibility and acceptability were assessed quantitatively and with semi-structured interviews conducted with a subset of participants. Effectiveness measures (anxiety, stress, quality of life [QOL], sleep, resiliency, and fatigue) were administered at baseline, week 5, week 9, and week 12.</p><p><strong>Results: </strong>Of the eligible patients, 33/72 (46%) were enrolled. In all, 15 caregivers enrolled. Thirty participants (21 patients/9 caregivers) completed at least 3 video-telehealth sessions (63% adherence). For patients, there were statistically significant improvements in anxiety and fatigue at week 12 (<i>p</i> = 0.05). Other effectiveness measures (stress, QOL, sleep, resiliency) showed positive trends. Eleven participants were interviewed and qualitative analysis revealed 4 themes: Easy to Use, Learning Key Principles, Practice is Essential, and Examples of Benefits.</p><p><strong>Significance of results: </strong>Participation in the RLP was feasible and acceptable for patients with advanced cancer and their caregivers. Participants tended to indicate that the practices were easy to integrate into their everyday lives, engendered their ability to focus on the positive, and would recommend the RLP to other individuals living with advanced cancer. Preliminary effectiveness data suggest the program may positively impact anxiety, stress, QOL, sleep, resiliency, and fatigue. A larger randomized clinical trial is warranted to confirm these preliminary findings.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e75"},"PeriodicalIF":1.9,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143625050","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Dignity in Serious Illness: A Qualitative Exploration of Family Caregivers' Contributions in low middle-income country - ERRATUM.","authors":"Silva Dakessian Sailian, Yakubu Salifu, Nancy Preston","doi":"10.1017/S1478951525000288","DOIUrl":"10.1017/S1478951525000288","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e74"},"PeriodicalIF":1.9,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143617624","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Opioid withdrawal syndrome induced by naldemedine administration in a cancer patient without brain metastasis.","authors":"Mayumi Ishida, Kojun Okamoto, Isamu Koyama, Nozomu Uchida, Izumi Sato, Akira Yoshioka, Ryota Sato, Hideki Onishi","doi":"10.1017/S147895152500001X","DOIUrl":"10.1017/S147895152500001X","url":null,"abstract":"<p><strong>Objectives: </strong>Naldemedine is a peripherally acting μ-opioid receptor antagonist used to treat opioid-induced constipation. As this drug does not cross the blood-brain barrier, it is believed that patients without brain metastases do not experience opioid withdrawal symptoms.</p><p><strong>Methods: </strong>Here, we experienced a case in which a cancer patient without brain metastasis presented with anxiety and restlessness that was severe enough to interfere with daily life. The patient was diagnosed with naldemedine-induced opioid withdrawal syndrome.</p><p><strong>Results: </strong>The patient was a 66-year-old male with liver cancer metastasizing to the chest wall, but without brain metastasis. Oxycodone was started at 10 mg/day 2 months prior to his visit to our department to treat pain related to the chest wall metastasis, and was increased to 100 mg/day 1 month later and maintained at that dose. Naldemedine was administered as a countermeasure against opioid-induced constipation. The patient developed anxiety and restlessness 10 days prior to his initial visit to our department. After detailed examination, naldemedine-related opiod withdrawal syndrome was suspected on the basis of anxiety, agitation, and episodes of sudden onset sweating, and these symptoms disappeared within 2 days after the discontinuation of naldemedine, with no recurrence observed thereafter. In addition, head MRI revealed no brain metastasis.</p><p><strong>Significance of the results: </strong>Even in patients without brain metastasis, naldemedine can induce opioid withdrawal symptoms, so caution is required with patients receiving this drug. In addition, when psychiatric symptoms are pronounced, as in this case, withdrawal symptoms may be underdiagnosed.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e64"},"PeriodicalIF":1.9,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143617628","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Memento mori.","authors":"Ellen Zhang","doi":"10.1017/S1478951525000203","DOIUrl":"https://doi.org/10.1017/S1478951525000203","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e74"},"PeriodicalIF":1.9,"publicationDate":"2025-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143574347","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Sharing the burden: The experiences of HIV psychiatrists delivering primary palliative care.","authors":"Sanam Bhatia, Maureen I Ekwebelem, Chloe Nims, Catherine Riffin, M Carrington Reid, Daniel Shalev","doi":"10.1017/S1478951525000124","DOIUrl":"10.1017/S1478951525000124","url":null,"abstract":"<p><strong>Objectives: </strong>People living with HIV experience an elevated risk of serious medical illnesses as they age, but access palliative care (PC) at lower rates than individuals without HIV. HIV psychiatrists provide longitudinal psychosocial care to individuals living with HIV. As such, HIV psychiatrists can play an important role in providing PC to people living with HIV (PLWH). This qualitative study was conducted to explore the perspectives and experiences of HIV psychiatrists in addressing the PC of PLWH.</p><p><strong>Methods: </strong>We conducted semi-structured interviews with HIV psychiatrists. Data were analyzed using thematic analysis.</p><p><strong>Results: </strong>Nineteen HIV psychiatrists were interviewed. Three core themes with several subthemes were identified. These were: (1) lack of an operationalized role for HIV psychiatrists in supporting PC provision, (2) heterogeneity in engagement with PC among HIV psychiatrists, and (3) HIV psychiatrists have valuable skills to address patients' PC needs but also face unique challenges in doing so.</p><p><strong>Significance of results: </strong>Overall, we found that there is significant heterogeneity in how HIV psychiatrists provide PC. Psychiatrists were interested in engagement with PC but felt their roles and scope were poorly defined. This study points to the possibility for greater integration of HIV psychiatrists in the provision of PC for patients with HIV through improvements in PC training for psychiatrists who work with patients with medical illness and through a more operationalized role and scope of practice in this domain of care.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e73"},"PeriodicalIF":1.9,"publicationDate":"2025-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11893077/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143574349","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the challenges experienced by patients and families using palliative and end-of-life care services: A qualitative focus group study.","authors":"Gina Kallis, Gary Hodge, Hannah Wheat, Tomasina M Oh, Susie Pearce","doi":"10.1017/S1478951525000057","DOIUrl":"10.1017/S1478951525000057","url":null,"abstract":"<p><strong>Objectives: </strong>In the UK, access to dignified and compassionate palliative care is increasingly being reported as inadequate. This is a particular issue in South-West England, where there is an ageing population, historical lack of research, and particular challenges due to its rural and coastal location. The aim of this study was to provide a holistic view of patient and family experiences of care toward the end-of-life in this location and to collaboratively identify the challenges they face.</p><p><strong>Methods: </strong>Six qualitative focus groups were held with people who were toward the end of their life, family/carers, and people who were bereaved. Participants were recruited via hospice networks. Most focus groups were face-to-face, and all were facilitated by two researchers.</p><p><strong>Results: </strong>A range of challenges were identified at different stages of the patient and family carer journey near the end-of-life. These included issues related to the delivery of care, such as communication challenges, a lack of out of hours care, and also a lack of personalized care. Patients and families also experienced everyday challenges due to the impact of living with a life-shortening condition and altered family dynamics as family members became carers. There were also some traumatic experiences of death and a sense of abandonment when care could not be accessed.</p><p><strong>Significance of results: </strong>This study provides a core first step in developing partnership working with members of the public, which can be built upon to develop future research agendas. This work has identified areas for improvement, so that ultimately, end-of-life experience for the individual, their carers, and families can be improved.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e70"},"PeriodicalIF":1.9,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143537925","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}