Palliative & Supportive Care最新文献

{"title":"The Palliative Story Exchange: An innovative storytelling intervention to build community, foster shared meaning, and improve sustainability.","authors":"Alexis Drutchas, Rachel Rusch, Richard Leiter","doi":"10.1017/S1478951524001226","DOIUrl":"https://doi.org/10.1017/S1478951524001226","url":null,"abstract":"<p><strong>Objective: </strong>Palliative care (PC) faces a workforce crisis. Seriously ill patients surpass the supply of PC cliniciansin their work clinicians face repeated loss and extreme suffering which can have deleterious consequences, such as burnout and attrition. We urgently need interventions that foster thriving communities in this emotionally complex environment. Storytelling represents a promising path forward. In response to widespread loneliness and moral distress among PC clinicians before, during, and after the early months of the COVID-19 pandemic, we created the Palliative Story Exchange (PSE), a storytelling intervention to build community, decrease isolation, and help clinicians rediscover the shared meaning in their work. This paper discusses this novel intervention and initial program evaluation data demonstrating the PSE's impact thus far.</p><p><strong>Methods: </strong>Participants voluntarily complete a post-then-pre wellness survey reflecting on their experience.</p><p><strong>Results: </strong>Thus far, over 1,000 participants have attended a PSE. In the fall of 2022, we began distributing a post-then-pre-evaluation survey. To date, 130 interprofessional participants from practice locations across 10 different countries completed the survey. Responses demonstrate an increase in the connection that participants felt toward their work and the larger palliative care community after attending a PSE. Further, more than half of all free-text responses include terms such as, \"meaningful,\" \"healing,\" \"powerful,\" and \"universal,\" to describe their participation.</p><p><strong>Significance of results: </strong>Training programs and healthcare organizations use the humanities to support clinician wellness and improve patient care. The PSE builds upon this work through a novel combination of storytelling, community co-creation using reflection, and shared meaning making. Initial survey data demonstrates that after attending a PSE, participants feel increased meaning in their work, in the significance of their own stories, and connection with the PC community. Moving forward, we seek to expand our community of practice, host a facilitator leadership course, and rigorously study the PSE's impact on clinician wellness outcomes.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-8"},"PeriodicalIF":1.9,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142337068","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":"\"We don't do any of these things because we are a death-denying culture\": Sociocultural perspectives of Black and Latinx cancer caregivers.","authors":"Candidus Nwakasi, Darlingtina Esiaka, Chizobam Nweke, Runcie C W Chidebe, Wilson Villamar, Kate de Medeiros","doi":"10.1017/S1478951524001184","DOIUrl":"10.1017/S1478951524001184","url":null,"abstract":"<p><strong>Objectives: </strong>Cancer is an enormous public health burden among Black and Latinx cancer survivors, and they are at risk of facing barriers to accessing cancer treatment and support in the United States. This study explored the unique challenges and experiences faced by Black and Latinx cancer survivors through the lens of their caregivers, including the specific cultural, social, and systemic factors that influence cancer survivorship experience and quality of life within these communities in the United States.</p><p><strong>Methods: </strong>We used a qualitative descriptive design for the study, and conducted 6 focus group discussions (3 Latinx and 3 Black groups) with a total of 33 caregivers of cancer survivors, (Mean age = 63 years). Data were analyzed using inductive content analysis.</p><p><strong>Results: </strong>We identified 3 main themes: (1) families as (un)stressors in survivorship such as the vitality of social connections and families as unintended burden; (2) responses after diagnosis specifically whether to conceal or accept a diagnosis, and (3) experiencing health care barriers including communication gaps, biased prioritizing of care, and issues of power, trust, and need for stewardship.</p><p><strong>Significance of results: </strong>The findings align with previous research, highlighting the complex interplay between cultural, familial, and healthcare factors in cancer survivorship experiences within underserved communities. The study reiterates the need for culturally tailored emotional, physical, financial, and informational support for survivors and their caregivers. Also, to improve quality of life, the study highlights a need to strengthen mental health and coping strategies, to help address psychological distress and improve resilience among survivors and their caregivers.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-6"},"PeriodicalIF":1.9,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142337061","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":"People with altruism who choose to end their lives: Do they experience irrational beliefs?","authors":"Dominikus David Biondi Situmorang, Venna Puspita Sari, Sri Ayatina Hayati, Albert Lodewyk Sentosa Siahaan","doi":"10.1017/S1478951524001287","DOIUrl":"https://doi.org/10.1017/S1478951524001287","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-2"},"PeriodicalIF":1.9,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142337065","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":"Exploring the contribution of cancer palliative care development toward alleviating the human crisis of suffering in low- and middle-income countries: A framework synthesis protocol.","authors":"Shrikant Atreya, Arathi Rao, Vijay Shree Dhyani, Mebin Mathew, Roop Gursahani, Srinagesh Simha, Nancy Preston, Catherine Walshe, Naveen Salins","doi":"10.1017/S1478951524001214","DOIUrl":"https://doi.org/10.1017/S1478951524001214","url":null,"abstract":"<p><strong>Objectives: </strong>Inadequate access to cancer care, high mortality, and out-of-pocket expenditure contribute to health-related suffering in low- and middle-income countries, making palliative care a relevant option. How palliative care development has alleviated suffering is not systematically studied, necessitating this review's conduct. The objective of this systematic review with a framework synthesis approach is to identify and map the dimensions and indicators of cancer palliative care development and the components of integration between cancer and palliative care in LMICs.</p><p><strong>Methods: </strong>Uni- and multi-disciplinary databases like Cochrane, MEDLINE (PubMed), EMBASE, CINAHL Complete, and PsycINFO will be systematically searched for eligible studies exploring cancer palliative care development in LMICs and their contribution to alleviating health-related suffering in the cancer context. Our selection process will encompass countries classified by the World Bank as low-income (26 countries), lower-income (54 countries), and upper-middle-income (54 countries).</p><p><strong>Results: </strong>Review findings will be synthesised and analysed using a best-fit framework synthesis method using 2 frameworks (the WHO model of components and indicators for palliative care development and integration elements between oncology and palliative care), and the findings will be developed as themes and subthemes, and patterns interpreted using these 2 models.</p><p><strong>Significance of results: </strong>This review will analyse the development of cancer palliative care in LMICs. It will identify gaps in provision, solutions derived at the regional level to address them, and best practices and failed models with reasons underpinning them.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-7"},"PeriodicalIF":1.9,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142337063","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":"Improving palliative care in Nepal through virtual education.","authors":"Rikas Saputra, Yenni Lidyawati, Kadek Suhardita, I Made Suarta, Suci Nora Julina Putri","doi":"10.1017/S1478951524001299","DOIUrl":"https://doi.org/10.1017/S1478951524001299","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-2"},"PeriodicalIF":1.9,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142337064","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":"\"It's not a one-person show\" E-learning course in neuropalliative care: A qualitative analysis of participants' educational gains and self-reported outcomes.","authors":"Sarah K Bublitz, Mara Lugassy, Roop Gursahani, Winnie Lau, Susan DeSanto-Madeya, Jessica Besbris, Neha M Kramer, John Y Rhee, Seema R Rao, Krithika S Rao, Naveen Salins, Piret Paal","doi":"10.1017/S147895152400124X","DOIUrl":"https://doi.org/10.1017/S147895152400124X","url":null,"abstract":"<p><strong>Objectives: </strong>Patients with progressive neurologic illness still lack access to quality palliative care services. Barriers to the comprehensive provision of neuropalliative care include gaps in palliative care education. To address this barrier, a novel international model of neuropalliative care education e-learning program was launched in 2022.</p><p><strong>Methods: </strong>This is a qualitative study on the self-reported learning outcomes and educational gains of participants of a neuropalliative care e-learning course.</p><p><strong>Results: </strong>Thematic analysis shows changes in the participants' perceptions of neuropalliative care and several specific educational gains. After attending the course, participants recognized neuropalliative care as a multiprofessional and interdisciplinary effort requiring more than medical knowledge and disease-specific treatment skills. They gained understanding of the complexity of prognosis in neurological diseases, as well as ethical concepts as the basis to approach difficult decisions. Valuing the needs of patients and caregivers, as well as honest and open communication were recognized as key components of the caring process. In particular, providing emotional support and building relationships to enhance the spiritual component of care were avidly discussed as essential nonmedical treatment options.</p><p><strong>Significance of results: </strong>E-learning courses are helping to close the gaps in healthcare professionals' knowledge and skills about neuropalliative care.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-6"},"PeriodicalIF":1.9,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142337060","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":"Digging deeper: A critique of the mediation study of spirituality in ALS patients.","authors":"Hartika Utami Fitri, Rikas Saputra, Kadek Suhardita, I Made Suarta, Maria Oktasari, Siti Aminah, Palasara Brahmani Laras","doi":"10.1017/S1478951524001275","DOIUrl":"https://doi.org/10.1017/S1478951524001275","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-2"},"PeriodicalIF":1.9,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142337062","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":"Strengthening and expanding cross-cultural care: The strategic role of chaplains in palliative care.","authors":"Rizky Andana Pohan, Khairiyah Khadijah, Putri Bunga Aisyah Pohan, Ririn Dwi Astuti, Ranesya Azzahra Pohan, Muhammad Rayhanif Annizam Pohan, Marimbun Marimbun","doi":"10.1017/S1478951524001366","DOIUrl":"https://doi.org/10.1017/S1478951524001366","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-2"},"PeriodicalIF":1.9,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142337067","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":"What is left.","authors":"Christopher Kim","doi":"10.1017/S1478951524001317","DOIUrl":"https://doi.org/10.1017/S1478951524001317","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1"},"PeriodicalIF":1.9,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142337069","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":"The association of compassion with dignity and symptoms in end-of-life cancer patients","authors":"Andrea Bovero, Irene Di Girolamo, Rossana Botto, Giuliano Carlo Geminiani","doi":"10.1017/s1478951524000956","DOIUrl":"https://doi.org/10.1017/s1478951524000956","url":null,"abstract":"Objectives Compassion is essential in palliative care; however, there is a lack of evidence of the association between this construct and patients’ dignity-related distress. The present study aimed to investigate the association between end-of-life cancer patients’ sense of dignity, the level of compassion of the healthcare professionals (HCPs) noticed and perceived by the patients, and levels of compassion that HCPs felt they had toward patients, investigating through specific attitudes and behaviors. Furthermore, the relationship between compassion and patients’ physical and psychological symptoms, such as levels of anxiety and depression, was also investigated. Methods The study was cross-sectional. The sample consisted of 105 end-of-life cancer patients and 40 HCPs. Patients had a Karnofsky Performance Status of 50 or lower and a life expectancy of less than 4 months. For each patient, sociodemographic data were collected, and a set of rating scales assessing compassion, dignity as well as physical and psychological symptoms were administered. Results The results showed significant negative associations between patients’ perception of compassion and dignity-related distress as well as significant negative associations between patients’ perception of compassion and patients’ symptoms. Significance of results Compassion seems to be involved in diminishing dignity-related distress and alleviating physical and psychological symptoms. Other studies are needed to understand whether patients’ symptoms or whether specific HCPs’ conditions influence compassion. Exploring compassion and at the end-of-life could encourage a dignity-conserving care.","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"31 1","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142265342","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}