Palliative & Supportive Care最新文献

{"title":"Patients with advanced cancer in Uganda: Gender, social norms, and family relationship icebergs in the face of terminal illness.","authors":"Julia D Kulikowski, Eve Namisango, William E Rosa","doi":"10.1017/S1478951524002189","DOIUrl":"https://doi.org/10.1017/S1478951524002189","url":null,"abstract":"<p><strong>Objectives: </strong>Cancer is associated with physical, social, spiritual, and psychological changes in patients and their caregivers. However, in sub-Saharan Africa, there is lack of evidence on the impact of gender, social norms, and relationship dynamics in the face of terminal illness. The aim of this paper is to explore how gender identity, social norms, and power relations are impacted when a person is living in Uganda with advanced cancer.</p><p><strong>Methods: </strong>Focus groups with adult men and women living with advanced cancer in Uganda were conducted. Interviews explored the social effects of cancer and common challenges, including how both disease and treatment affect the patient and marital relationships within their families. Participants' recommendations were sought to improve the social well-being of patients and their families. Data were analyzed using inductive thematic analysis.</p><p><strong>Results: </strong>Men and women experienced negative changes in their roles and identities, often feeling unable to fulfill their marital duties in terms of intimacy, their social roles and responsibilities based on societal expectations. Men expressed loss of a \"masculine\" identity when unable to provide economically for the household. This led to tension in the familial power dynamics, contributing to relationship breakdown and gender-based violence (GBV) against spouses. Women noted challenges with parenting, relationship breakdowns, and increased GBV.</p><p><strong>Significance of results: </strong>Gender impacts the patient and the family dynamic throughout the life course, including during advanced cancer. Patients and caregivers experience a change in their roles and identities while coping with existential distress and end-of-life tasks. Given these results, gender considerations and dynamics should be incorporated into overall palliative care provision. In addition, there is a need to integrate GBV screening and support in cancer services to address social health and safety needs in the context of serious illness.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e31"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014007","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 death is desired: A case of MAiD & the CL psychiatrist.","authors":"Amvrine Ganguly, Monique James, Yesne Alici","doi":"10.1017/S1478951524002037","DOIUrl":"https://doi.org/10.1017/S1478951524002037","url":null,"abstract":"<p><strong>Objectives: </strong>Since physician-assisted dying (PAD) has become a part of the clinical dialogue in the United States (US) and other Western countries, it has spawned controversy in the moral, ethical, and legal realm, with significant cross-country variation. The phenomenon of PAD includes 2 practices: Euthanasia and medical aid in dying (MAiD). Although euthanasia has been allowed in different parts of the world, in the US it is illegal. MAiD has been enacted into law in some jurisdictions. As the practice involves people at the end of life (EOL), often with cancer, and sometimes struggling with psychiatric symptoms; they gain added salience in the field of Consultation-Liaison (CL) Psychiatry in general and Psycho-Oncology in particular.</p><p><strong>Methods: </strong>The current paper reviews a case where a patient did request for MAiD and successfully carried it through, this case became more salient, as the CL Psychiatry department was intimately linked at various stages of care for the patient.</p><p><strong>Results: </strong>In describing the case several other aspects of EOL care issues were touched upon, and the various debates as well as treatment modalities, for an individual requesting for medical aid in dying were described.</p><p><strong>Significance of results: </strong>MAiD will possibly remain a sensitive and controversial topic of discussion across the spectrum of healthcare, and as responsible and compassionate advocates for the patients, clinicians need to engage more with the debate surrounding it and facilitate informed decision making. We believe that the present case will throw light on to this enigmatic practice and help in furthering the dialogue surrounding MAiD.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e30"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014081","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":"In the letting go.","authors":"Antonio Yaghy","doi":"10.1017/S1478951524002116","DOIUrl":"https://doi.org/10.1017/S1478951524002116","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e32"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143013999","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":"Mapping the evidence of self-compassion in caregiver wellbeing for caregivers of persons with neurodegenerative disease: A scoping review.","authors":"Christi M Lero, Soobin Park, Emily L Mroz","doi":"10.1017/S1478951524001639","DOIUrl":"https://doi.org/10.1017/S1478951524001639","url":null,"abstract":"<p><strong>Objectives: </strong>Caregivers of those with neurodegenerative disease (ND) manage complex symptoms which impact their wellbeing. Self-compassion can promote maintenance of wellbeing during challenging experiences, including caregiving. Little guidance exists for observationally studying self-compassion or targeted interventions for this population. Our objective was to complete a scoping review of research describing self-compassion in the context of caregiver wellbeing of caregivers of those living with ND.</p><p><strong>Methods: </strong>Following Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for Scoping Reviews (PRISMA-ScR) guidelines, 3 online databases identified 350 peer-reviewed articles, 18 of which were included in this study. Eligibility included being written in English, targeting caregivers of those living with ND, and examination of self-compassion. Articles were organized by the incorporation or characterization of self-compassion in the study design.</p><p><strong>Results: </strong>Alzheimer's disease predominated study samples of care recipients. Across study types self-compassion appeared as a theoretical concept, emerging theme, variable associated with other outcomes, and main outcome variable. Self-compassion is frequently measured using the Self-Compassion Scale, full or short form .</p><p><strong>Significance of results: </strong>The study of self-compassion with caregivers of individuals living with ND is growing. Current literature is somewhat unfocussed, leading to gaps in understanding conceptualization to achieve maximum intervention benefits. Clarifying the role of self-compassion in caregiver wellbeing will provide a lens through which non-pharmacologic, psychotherapeutic, and behavioral intervention development may be framed to reduce negative psychological outcomes. The most frequently represented ND is Alzheimer's disease or other dementia, obscuring other NDs like amyotrophic lateral sclerosis, Parkinson's disease, and others.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e38"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014003","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":"Cosmology of belonging: The role of community in the therapeutic use of psychedelics.","authors":"Caroline Dorsen, Lola Noero, Michelle Knapp, Kristin Arden, William E Rosa","doi":"10.1017/S1478951524001688","DOIUrl":"https://doi.org/10.1017/S1478951524001688","url":null,"abstract":"<p><strong>Background: </strong>The recent wave of clinical trials of psychedelic substances among patients with life-limiting illness has largely focused on individual healing. This most often translates to a single patient receiving an intervention with researchers guiding them. As social isolation and lack of connection are major drivers of current mental health crises and group work is expected to be an important aspect of psychedelic assisted psychotherapy, it is essential that we understand the role of community in psychedelic healing.</p><p><strong>Objectives: </strong>To explore how psychedelic guides in the United States discuss the role of \"community\" in naturalistic psychedelic groups.</p><p><strong>Methods: </strong>This is a secondary qualitative data study of data from a larger modified ethnographic study of psychedelic plant medicine use in the US. Fifteen facilitators of naturalistic psychedelic groups were recruited via snowball sampling. Content analysis was used to identify themes.</p><p><strong>Results: </strong>Participants viewed the concept of community as essential to every aspect of psychedelic work, from the motivation to use psychedelics, to the psychedelic dosing experience and the integration of lessons learned during psychedelic experiences into everyday life. Themes and subthemes were identified. <i>Theme 1</i>: The arc of healing through community (<i>Subthemes</i>: Community as intention, the group psychedelic journey experience, community and integration); <i>Theme 2</i>: Naturally occurring psychedelic communities as group therapy (<i>Subthemes [as described in Table 2]</i>: Belonging, authenticity, corrective experience, trust, touch).</p><p><strong>Significance: </strong>Results suggest that existing knowledge about therapeutic group processes may be helpful in structuring and optimizing group psychedelic work. More research is needed on how to leverage the benefit of community connection in the therapeutic psychedelic context, including size and composition of groups, selection and dosing of psychedelic substances in group settings, facilitator training, and role of community integration. Psychedelic groups may provide benefits that individual work does not support.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e27"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014118","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":"Toward comprehensive palliative care through the vital role of culturally adapted spiritual interventions.","authors":"Riza Amalia, Ahmad Razak, Lutfi Hidayati Fauziah, Ria Angin, Wikan Galuh Widyarto, Tamama Rofiqoh, Hanik Mufaridah","doi":"10.1017/S1478951524001780","DOIUrl":"https://doi.org/10.1017/S1478951524001780","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e40"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143013960","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 role of structured remembrance programs in supporting the wellbeing of pediatric health workers.","authors":"Rikas Saputra, Isnaria Rizki Hayati, Elni Yakub, Yenni Lidyawati, Rizky Andana Pohan, Mei Sarri","doi":"10.1017/S1478951524001949","DOIUrl":"https://doi.org/10.1017/S1478951524001949","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e47"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143013956","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":"Ivan Illich and convivial palliative care.","authors":"Aldis H Petriceks","doi":"10.1017/S1478951524001937","DOIUrl":"https://doi.org/10.1017/S1478951524001937","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e46"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014021","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 hope and expectations amidst the shadows: Navigating through the hearts of cancer patients admitted to a palliative care unit.","authors":"Maria Nikoloudi, Florian Thanasko, Ioanna Tsatsou, Alexandra Mantoudi, Kyriaki Mystakidou","doi":"10.1017/S1478951524002165","DOIUrl":"https://doi.org/10.1017/S1478951524002165","url":null,"abstract":"<p><strong>Objectives: </strong>The objective of this study is to conduct an in-depth exploration of the psychological well-being, hope, and expectations of cancer patients receiving care in a palliative care unit, utilizing a qualitative research approach.</p><p><strong>Methods: </strong>We employed the methodology of interpretative phenomenological analysis (IPA). Our data collection involved conducting 1-hour semi-structured interviews with the patients. In the subsequent data analysis, we applied investigator triangulation to ensure rigor and reliability.</p><p><strong>Results: </strong>Understanding patients' hope and expectations from palliative care is crucial as it can serve as an indicator of the quality of care and motivate care providers to fulfill these expectations as much as possible. Throughout the IPA, 3 superordinate themes emerged from the qualitative data: cancer diagnosis and the spectrum of emotions, hope and cancer patient, and oncology patient expectations of palliative care.</p><p><strong>Significance of results: </strong>From the patient's perspective, making sense of their cancer experience involves managing symptoms, redefining their understanding of illness, adapting to functional changes, and fostering open communication among themselves, their families, physicians, and the palliative care team. This underscores the crucial necessity for an interdisciplinary approach and emphasizes the importance of reinforcing positive support systems. In essence, our study delves into the multifaceted psychological aspects of cancer patients in the context of palliative care, shedding light on their hope and expectations as they navigate the challenging terrain of cancer treatment and palliative support.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e26"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143013631","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":"Adapting to the emotional complexity of palliative care communication: Palliative care clinicians' experiences.","authors":"Anna Niederhauser, Martina Egloff, Steffen Eychmueller, Sofia C Zambrano","doi":"10.1017/S1478951524001883","DOIUrl":"https://doi.org/10.1017/S1478951524001883","url":null,"abstract":"<p><strong>Objectives: </strong>Communication is essential to medical care and is key in improving patient outcomes. We aimed to understand clinicians' emotions when communicating with patients in palliative care (PC) and the evolution of their communication skills.</p><p><strong>Methods: </strong>Between October and November 2021, 231 Swiss PC clinicians participated in an online cross-sectional survey (65% nurses, 35% physicians). Three questions invited participants to reflect on the development of their communication skills and on their emotions when communicating with patients in PC. Answers to these questions were analyzed thematically.</p><p><strong>Results: </strong><i>Constantly adapting to complex emotions in communication</i> was the overarching theme. Three main themes further allowed for an understanding of different communication challenges: <i>emotions as a dynamic compass, not always under control</i>, and <i>evolving comfort and competence through personal and professional growth</i>. In <i>evolving comfort and competence</i>, 6 strategies helped clinicians overcome fears and improve their confidence in communication: learning by doing and formal training, integrating life experiences and gaining insight from private life, taking time, collaborating and connecting with peers, acknowledging individuality, and connecting with one's own and patients' emotions.</p><p><strong>Significance of results: </strong>Participants described powerful emotional experiences when communicating with patients in PC, underscoring the emotional labor involved in PC communication. Our study highlights the need to re-conceptualize emotions as a valuable resource rather than a hindrance in clinical practice. The interplay between personal and professional identities in shaping communication skills, emphasizes the importance of emotional competence as a core professional skill. As clinicians often develop these skills individually, our findings suggest a need for earlier integration of emotional competence training in medical education, along with ongoing support through collaboration, and improved allocation of time resources, to enhance clinician well-being and patient care.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e43"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014106","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}