Palliative & Supportive Care最新文献

{"title":"\"You sure feel like you're alone, kind of flailing away out there\": Family caregiver perspectives of caring for an individual with glioblastoma multiforme.","authors":"Christy Muasher-Kerwin, Abby Baumbach, Yujun Liu, M Courtney Hughes","doi":"10.1017/S147895152500015X","DOIUrl":"https://doi.org/10.1017/S147895152500015X","url":null,"abstract":"<p><strong>Objectives: </strong>Glioblastoma multiforme (GBM) is the most common and aggressive form of brain cancer. Family caregivers of individuals with GBM must navigate a wide range of their care recipients' physical, cognitive, and psychosocial deficits to provide effective care, which is both mentally and physically demanding. This study aimed to investigate the perspectives of family caregivers of GBM patients about the barriers and challenges they encounter when providing care to their care recipients.</p><p><strong>Methods: </strong>Nineteen current and former family caregivers for individuals with GBM participated in semi-structured interviews from October 2023 through January 2024. We conducted interviews virtually and used applied thematic analysis to code transcripts to determine themes among participant responses.</p><p><strong>Results: </strong>Three themes emerged from the interview analysis: (1) overwhelming caregiver burden, (2) difficulties coping with the caregiver role, and (3) gaps in caregiver support. These themes demonstrated a significant physical and mental toll on caregivers and a lack of time for engaging in coping strategies. The family caregivers described a lack of resources, minimal education, and limited time with their medical providers left them feeling ill-prepared for their role. Most family caregivers indicated their care recipients did not use rehabilitation services and the family caregivers expressed confusion about hospice and palliative care.</p><p><strong>Significance of results: </strong>Family caregivers for individuals with GBM desire more straightforward and proactive information and education about their care recipients from their medical providers. There is an opportunity for more utilization of hospice, palliative, and rehabilitation services to provide necessary training to GBM patients and their caregivers.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e62"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143468374","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":"Asymmetric facial edema with transdermal fentanyl: when listening to patients and caregivers helps to diagnose.","authors":"Carolina Simões, Miguel Julião, Patrícia Calaveiras, Paula Câmara, Eduardo Bruera","doi":"10.1017/S1478951524002177","DOIUrl":"https://doi.org/10.1017/S1478951524002177","url":null,"abstract":"<p><strong>Objectives: </strong>Dignity Therapy (DT) is a brief psychotherapeutic intervention designed to address the psychosocial and spiritual needs of terminally ill patients. Research demonstrates DT's efficacy in reducing dignity-related distress and alleviating psychosocial symptoms like depression and anxiety in terminally ill patients. Its application has been extended to non-terminal patients with chronic conditions, mental health challenges, and children nearing the end of life, with promising results. However, the potential for proxy applications, such as posthumous p-DT (p-DT) - conducted by relatives after a patient's death or on behalf of individuals unable to participate - remains underexplored.</p><p><strong>Methods: </strong>A case series report that examines three relatives who engaged in posthumous p-DT, highlighting its feasibility and potential benefits.</p><p><strong>Results: </strong>p-DT seems to benefit families and caregivers, promoting emotional resilience and facilitating grieving.</p><p><strong>Significance of results: </strong>Findings suggest p-DT may serve as a valuable tool for bereavement support, warranting further research to expand its scope and accessibility.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e67"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469215","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":"Situations in which caregivers and patients are likely to collude: Perspectives from caregivers of advanced cancer patients in Bangladesh.","authors":"Jheelam Biswas, Salma Ahsan Khanam, Md Shamsudduha Tauhid, Shima Rani Sarker, Nahid Afsar, Nashid Islam","doi":"10.1017/S1478951524002074","DOIUrl":"https://doi.org/10.1017/S1478951524002074","url":null,"abstract":"<p><strong>Objectives: </strong>This study aimed to explore situations where caregivers and patients are likely to collude, from the perspective of caregivers of advanced cancer patients in Bangladesh.</p><p><strong>Methods: </strong>This study took place in 2 different tertiary care hospitals in Bangladesh. The study design included both quantitative and qualitative components. In this study, we focused on situations in which caregivers choose not to disclose the truth, regardless of their patients' desire to know it. This may include instances of mutual withholding or cases of deliberate withholding by caregivers, even when patients express a desire to know the truth. While collusion may occur in some instances, not all situations qualify as collusion; nonetheless, all of these situations were broadly considered as collusion-prone. The intensity of enactment was assessed using the \"Caregiver Collusion Questionnaire,\" and in-depth exploration of collusion-prone situations was conducted through key person interviews with the caregivers.</p><p><strong>Results: </strong>The intensity of enactment was medium to high among two-thirds (83.1%) of caregivers. This intensity was significantly associated with the caregivers' relationship with the patients and their intention to disclose the truth (<i>p</i> < 0.01). Higher intensity of enactment has been observed among the children who are tending to their terminally ill parents. Four major themes regarding collusion-prone situation were generated by the qualitative analysis: (1) Reasons for nondisclosure; (2) Time of disclosure; (3) Selective disclosure; and (4) Discloser of truth.</p><p><strong>Significance of results: </strong>The nature of collusion-prone situations is shaped by culture and social values. By gradually and indirectly addressing these situations, healthcare professionals can assist families in navigating through difficult conversations and ensure that the patient's wishes and values are respected.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e68"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469446","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":"When I am on the verge of departing (a poetic advance directive, for my loved ones).","authors":"Carlos Eduardo Paiva","doi":"10.1017/S1478951525000185","DOIUrl":"https://doi.org/10.1017/S1478951525000185","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e65"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469363","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":"Embracing goodbye: A personal reflection on virtual reality intervention in palliative care.","authors":"Olive Kit Ling Woo","doi":"10.1017/S1478951525000161","DOIUrl":"https://doi.org/10.1017/S1478951525000161","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e63"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469324","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":"Family caregivers' role in dignity: A qualitative study can we change the title to : Dignity in Serious Illness: A Qualitative Exploration of Family Caregivers' Contributions in low middle-income country.","authors":"Silva Dakessian Sailian, Yakubu Salifu, Nancy Preston","doi":"10.1017/S1478951525000100","DOIUrl":"https://doi.org/10.1017/S1478951525000100","url":null,"abstract":"<p><strong>Objectives: </strong>Dignity is perceived as being valued and respected. Maintaining dignity throughout illness is a fundamental principle of palliative care. Dignity can be influenced through family caregiver's communication, support, and acts of empathy or indifference among other factors. The perception of dignity and the practices adopted by family caregivers to preserve the dignity of their ill relative with serious illness in Lebanon are explored in this paper.</p><p><strong>Methods: </strong>This is a part of a larger study that explored the understanding of dignity from patients' and family caregivers' perspectives in a palliative care context. Data collection involved in-depth interviews with 15 family caregivers. Interviews were analyzed using reflective thematic analysis.</p><p><strong>Results: </strong>Four main themes, that explained how family caregivers understand, and uphold their relative's dignity during illness, were developed:(a) Familial duty expressed through presence and compassion;(b) Holistic care and financial stability;(c) Social connection and family roles;(d) Compassionate services and communication.Family caregivers maintained the dignity of their ill relatives through being there, compassionate communication, supporting the personal and medical needs of the patient, and helping them preserve their family role. Family caregiving was often underpinned by religious values and a sense of duty. Compassionate services and effective communication were essential to preserve dignity of the ill relative during hospitalizations.</p><p><strong>Significance of results: </strong>Family caregivers assume multiple roles in fostering the dignity of relatives with serious illnesses. It is crucial that family caregivers are supported by policies, healthcare systems, and community initiatives as patients cannot thrive nor sustain dignity without their support.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e61"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469341","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":"Non-curative care options for patients with advanced-stage head and neck cancer: Current state of the science and future opportunities.","authors":"Melissa C White, Julia E Canick, Yvonne M Mowery, Daniel J Rocke, Katherine Ramos, Nosayaba Osazuwa-Peters","doi":"10.1017/S1478951524002049","DOIUrl":"https://doi.org/10.1017/S1478951524002049","url":null,"abstract":"<p><strong>Objectives: </strong>Head and neck cancer (HNC) often requires complex management and care. While the primary goal of treatment is curative, some advanced cases require consideration of non-curative pathways to optimize patients' quality of life (QOL) and survival. This narrative review describes important aspects of palliative care and highlights strategies for employing these non-curative options in HNC.</p><p><strong>Methods: </strong>We identified peer-reviewed articles on the state of palliative care in HNC and its implementation. We searched for articles using terms including \"palliative care,\" \"non-curative care,\" \"comfort care,\" \"head and neck cancer,\" and \"head and neck squamous cell carcinoma.\"</p><p><strong>Results: </strong>HNC is associated with a high disease burden; patients report high levels of pain, and both disease and treatment often compromise ability to carry out activities of daily living. There exist several non-curative routes of treatment, including palliation of symptoms, acute end-of-life (EOL) care, and hospice and home care. These care options provide comfort and optimize QOL of patients. Unfortunately, non-curative care could be misconstrued as withdrawal of treatment, or the provider team \"giving up\" on patient; these misconception can discourage patients from embracing palliative measures designed to alleviate symptom burden. Proper physician-patient communication, normalization, and early incorporation of these non-curative strategies into mainstream treatment could potentially ease patient concerns, and, eventually in EOL cases, help patients achieve dignified deaths.</p><p><strong>Significance of results: </strong>Patients with HNC have unique palliative care needs due to their complex treatment and symptom burden. Early incorporation of non-curative plans such as palliative care alongside active treatment could help reduce symptom burden. Clinicians should strive to build trusting relationships with patients with HNC and effectively communicate with them about palliative care options. Guidelines that include such recommendations can help physicians regularly introduce palliation into the realm of active HNC treatment for advanced/incurable disease.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e59"},"PeriodicalIF":1.9,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143434162","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":"Promising results of a resource- and activity-oriented intervention integrating rehabilitation into palliative care in people with advanced cancer: A feasibility study testing outcome measures.","authors":"Marie Brunsgaard Laursen, Marc Sampedro Pilegaard, Karen la Cour","doi":"10.1017/S1478951524001652","DOIUrl":"https://doi.org/10.1017/S1478951524001652","url":null,"abstract":"<p><strong>Objectives: </strong>People with advanced cancer express the need for support to balance everyday activities to experience quality of life. The <i>Balance, Activity and Quality of Life Intervention</i> was developed to address this need using a resource- and activity-oriented approach that integrates rehabilitation into palliative care. To inform a future full-scale evaluation, the objective of this feasibility study was to test if the selected outcome measures of health-related quality of life, including physical function and fatigue, and occupational balance could capture any possible changes of the <i>Balance, Activity and Quality of Life Intervention</i> in people with advanced cancer.</p><p><strong>Methods: </strong>Repeated-measurement feasibility study without a control group (ClinicalTrials.gov NCT04772690). Twenty-two home-living adults with advanced cancer participated in the study. The intervention was delivered at the research clinic of REPHA, The Danish Knowledge Centre for Rehabilitation and Palliative Care. Data regarding health-related quality of life, including physical function and fatigue, and occupational balance were collected with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 and the Occupational Balance Questionnaire at baseline, after a 5-day intervention stay and at 6- and 12-week follow-up.</p><p><strong>Results: </strong>The outcome measure of health-related quality of life captured a statistically significant improvement (<i>p</i> = 0.0046) after the 5-day intervention stay, with 64% of the participants experiencing clinically relevant improvements. No other statistically significant changes were found. Missing data were minor.</p><p><strong>Significance of results: </strong>Health-related quality of life is a promising outcome measure to capture the possible changes of the <i>Balance, Activity and Quality of Life Intervention</i>. The results indicate that a resource- and activity-oriented approach may be helpful when integrating rehabilitation into palliative care.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e55"},"PeriodicalIF":1.9,"publicationDate":"2025-02-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143366559","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 \"off-script\": A qualitative analysis of providers' empathic self-disclosures during dignity therapy.","authors":"Emily L Mroz, Tithi Amin, Sheri Kittelson, Mary Kate Koch, Alyssa Crowe, Susan Bluck, Joshua Hauser, George F Handzo, Diana J Wilkie, Carma L Bylund","doi":"10.1017/S1478951524002098","DOIUrl":"https://doi.org/10.1017/S1478951524002098","url":null,"abstract":"<p><strong>Objectives: </strong>Healthcare provider self-disclosures are common although sometimes controversial. Providers have unique opportunities to self-disclose for the purpose of conveying empathic concern during Dignity Therapy sessions. We examine the topics of empathic self-disclosures (ESDs) during Dignity Therapy sessions.</p><p><strong>Methods: </strong>We analyzed 203 audio-recorded, transcribed Dignity Therapy sessions from a stepped-wedge, randomized trial of Dignity Therapy led by 14 nurses and chaplains in outpatient palliative care. We extracted 117 ESDs across sessions and applied thematic analysis guided by the constant comparative method to generate ESD topic themes and properties.</p><p><strong>Results: </strong>Providers disclosed ESDs referring to topics of <i>Relationships and Family, Personal Experiences and Characteristics, Cohort Communalities, Location and Geography,</i> and <i>Values.</i> Though each provider led multiple Dignity Therapy sessions in this dataset, providers rarely disclosed the same information to more than one patient. Some disclosures subtly shifted the patient's life review. Providers often acknowledged patients that their self-disclosures were not prescribed elements of Dignity Therapy sessions.</p><p><strong>Significance of results: </strong>Providers engage in ESD across a range of personal topics in a Dignity Therapy context. Some ESD topics overlapped with those considered appropriate in existing health communication literature. Other topics involved complex or underexamined types of disclosures. While self-disclosures appear to be made with empathic intent, providers undermined the impact of some ESDs by portraying them as unprescribed components of the conversation. More research is needed to assess the positive and negative impacts of ESDs during Dignity Therapy and to support augmentation of Dignity Therapy training protocols to account for providers' ESDs.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e57"},"PeriodicalIF":1.9,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143257050","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":"Evaluating the acceptability of a self-directed, self-management intervention for patients and caregivers facing advanced cancer.","authors":"Sydney Wasserman, Lydia Ould Brahim, Andrea Maria Laizner, Anita Mehta, José Côté, Melissa Henry, Kimberly Thibodeau, Vasiliki Bessy Bitzas, Sylvie D Lambert","doi":"10.1017/S1478951524001755","DOIUrl":"https://doi.org/10.1017/S1478951524001755","url":null,"abstract":"<p><strong>Objectives: </strong>Coping-Together is a self-directed, self-management intervention initially developed for patients in early-stages of cancer and their caregivers. This study evaluated its acceptability among patients with advanced cancer and their caregivers.</p><p><strong>Methods: </strong>Twenty-six participants (patients with advanced cancer <i>n</i> = 15 and their caregivers <i>n</i> = 11) were given the Coping-Together materials (6 booklets and a workbook) for 7 weeks. Participants were interviewed twice during this time to solicit feedback on the intervention's content, design, and recommended changes. Audio-recorded interviews were transcribed verbatim, and thematic analysis was conducted.</p><p><strong>Results: </strong>Participants found Coping-Together was mostly relevant. All (<i>n</i> = 26, 100%) participants expressed interest and a desire to improve their self-management skills. Perceived benefits included learning to develop SMARTTER (specific, measurable, attainable, relevant, timely, and done together) self-management plans, normalizing challenges, and enhancing communication within the dyad and with their healthcare team. Most (<i>n</i> = 25, 96%) identified strategies from the booklets that benefited them. Top strategies learned were skills to manage physical health (<i>n</i> = 20, 77%) (e.g., monitoring symptoms), emotional well-being (<i>n</i> = 21, 81%) (e.g., reducing stress by reframing thoughts), as well as social well-being (<i>n</i> = 24, 92%) (e.g., communicating with their healthcare team). Barriers included illness severity and time constraints. The unique advanced cancer needs that are to be integrated include support related to fear of death, uncertainty, palliative care and advanced care planning. Suggested modifications involved enhancing accessibility and including more advanced cancer information (e.g., end-of-life planning, comfort care, resources).</p><p><strong>Significance of results: </strong>Participants reported several benefits from using Coping-Together, with minimal adaptations needed. Creating SMARTTER self-management plans helped them implement self-management strategies. Specific areas for improvement addressed the need for improved accessibility and more content related to advanced cancer. Findings demonstrate how Coping-Together is acceptable for those living with advanced cancer and their caregivers, offering much of the support needed to enhance day-to-day quality of life.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e56"},"PeriodicalIF":1.9,"publicationDate":"2025-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143190898","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}