Palliative & Supportive Care最新文献

{"title":"Sleep quality, anxiety, and depression in palliative care patients.","authors":"Gülşah Çamcı, Sıdıka Oğuz, Ömer Oktay, Ömürcan Aydın","doi":"10.1017/S1478951525000136","DOIUrl":"10.1017/S1478951525000136","url":null,"abstract":"<p><strong>Objectives: </strong>Sleep problems are common in palliative care patients. In addition, psychological problems can affect sleep quality. The aim of this study was to investigate sleep quality, anxiety, and depression in palliative care patients.</p><p><strong>Methods: </strong>The study was conducted between May 1, 2023 and October 31, 2023 in Turkey. The patient information form, the Pittsburgh Sleep Quality Index (PSQI), and the Hospital Anxiety and Depression Scale (HADS) were used to collect data. The data were analyzed using the Pearson correlation and multiple linear regression test.</p><p><strong>Results: </strong>A total of 59.3% of patients were male, 76.7% were married, 89.3% had poor sleep quality, 61.3% had anxiety, and 86.7% were at risk of depression. A positive moderate correlation was found between HADS-anxiety, HADS-depression, and HADS total with subjective sleep quality. A positive moderate correlation was found between HADS-anxiety, HADS depression, and HADS total with the PSQI total. Sleep latency, sleep duration, sleep disturbances, use of sleep medication, and daytime dysfunction showed a weak positive correlation with HADS-depression and HADS total. In the regression analysis, anxiety proved to be a statistically significant predictor of sleep quality, while depression was not a significant predictor. These variables were found to explain 22% of the total variance in sleep quality.</p><p><strong>Significance of results: </strong>The patients' sleep quality was poor. Anxiety and the risk of depression were high. A positive moderate correlation was found between the total score of sleep quality and anxiety and depression. Anxiety was found to be a statistically significant predictor of sleep quality.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e60"},"PeriodicalIF":1.9,"publicationDate":"2025-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143484482","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":"\"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":"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":"Healthcare professionals' discussion of loss and grief with parents of children with life-limiting severe neurological impairment: Findings from a scoping review.","authors":"Elaine Brennan, Marian Mya Clarke, Suzanne Guerin","doi":"10.1017/S1478951524001743","DOIUrl":"10.1017/S1478951524001743","url":null,"abstract":"<p><strong>Objectives: </strong>Parents' experiences of loss and grief in the context of caring for a child with life-limiting severe neurological conditions are complex. Supportive interventions delivered by multidisciplinary teams have the potential to mitigate illness-related and anticipatory grief before and after bereavement. To date, the literature on professionals' discussion of loss and grief with parents has not been synthesized. This systematic review aims to synthesize the evidence to establish what is known about professionals' experience of these discussions with this population, with particular emphasis on timing, frequency, and the setting in which discussions occur.</p><p><strong>Methods: </strong>A scoping review was developed, informed by the Preferred Reporting Items for Systematic Reviews and Meta analyses - Scoping Extension guidelines and the PCC (Population, Concept, Context) framework. Three electronic databases (PsycINFO, CINAHL, and PubMED) were searched using medical subject heading (MeSH) terms and keywords search strings in January 2023. The search was not limited to year of publication. Overall, 35 articles were analyzed using a combination of descriptive analysis and thematic synthesis.</p><p><strong>Results: </strong>Two overarching themes were identified, \"loss and grief are part of this context\" and \"lack of recognition of loss and grief,\" illustrating that despite the lack of evidence of explicit discussion of these issues, some aspects of loss and grief appeared to guide or implicitly influence healthcare professionals' practice. Failure to acknowledge loss and grief was associated with an increase in parental distress and had implications for future care planning.</p><p><strong>Significance of results: </strong>Healthcare professionals are well placed to discuss loss and grief with parents of children with life-limiting severe neurological conditions. However, these discussions are only implicitly reported in the literature. Findings suggest that some professionals avoided discussing loss and grief. Bereavement outcomes are not typically considered in findings of the papers reviewed. Based on these findings, future research should focus on what this means for understanding professionals' capacity to engage with loss and grief.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e58"},"PeriodicalIF":1.9,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469432","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":"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":"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":"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":"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":"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":"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":"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":"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}