Palliative & Supportive Care最新文献

{"title":"What are family caregivers' experiences of coordinating end-of-life care at home? A narrative review.","authors":"Harriet Nicholls, Matthew Carey, Kevin Hambridge","doi":"10.1017/S1478951524001895","DOIUrl":"10.1017/S1478951524001895","url":null,"abstract":"<p><strong>Objectives: </strong>People with life-limiting diseases, who are no longer receiving active or curable treatment, often state their preferred place of care and death as the home. This requires coordinating a multidisciplinary approach, using available health and social care services to synchronize care. Family caregivers are key to enabling home-based end-of-life support; however, the 2 elements that facilitate success - coordination and family caregiver - are not necessarily associated as being intertwined or one and the same. This narrative review explores family caregiver experiences of coordinating end-of-life care in the home setting.</p><p><strong>Methods: </strong>Studies were identified systematically following the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A search of 5 databases (CINAHL, AMED, MEDLINE, Joanna Briggs Institute for Systematic Reviews, and the Cochrane Database) was conducted using Medical Subject Headings search terms and Boolean operators. Seven hundred and eighty papers were screened. Quality assessment was conducted using the JBI Critical Appraisal Checklist for Qualitative Research. Characteristics of included studies were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) extraction tool.</p><p><strong>Results: </strong>Ten qualitative studies were included. A meta-aggregative approach was used to assemble findings and categories extracted from the included papers, which led to identification of 3 overall themes: (1) family caregiver identity, (2) strategies for care, and (3) practicalities of care.</p><p><strong>Significance of results: </strong>Research suggests there should be a designated care coordinator to support people nearing the end of life at home. However, this review shows that family caregivers intrinsically take on this role. Their experiences, frequently share commonalities across different cultures and regions, highlighting the universal nature of their challenges. Difficulties associated with providing home-based care are evident, but the undertaking of care coordination by relatives highlights a need for a change in approach. Future studies could explore the impact of having a designated \"facilitator\" or single point of contact for families, as well as the development of tailored communication strategies.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e44"},"PeriodicalIF":1.9,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143029785","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":"Upper arm movements in the last days of life: A new possible sign of impending death.","authors":"Miguel Julião, Carolina Simões, Patrícia Calaveiras, Paula Câmara, Miguel Castelo-Branco","doi":"10.1017/S1478951524002001","DOIUrl":"10.1017/S1478951524002001","url":null,"abstract":"<p><p>One of the most crucial stages of palliative care is the last days and hours of life, which require special attention and knowledgeable identification of clinical signs described as signs of impending death (SID). Our case series of 11 patients receiving home palliative care describes bilateral hypoactive, stereotyped upper arm movements (scratching of the head, forehead, and nose) that were previously unknown or described, often accompanied by SID.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e29"},"PeriodicalIF":1.9,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143025325","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 and carer experiences of advanced care planning processes and outcomes.","authors":"Gail Whiteford, Dan Curley, Graeme Mooney, Leigh Kinsman, Tony Lower, Megan Hobbs","doi":"10.1017/S1478951524001603","DOIUrl":"10.1017/S1478951524001603","url":null,"abstract":"<p><strong>Objectives: </strong>Despite practice development in the area of advanced care planning (ACP) and systems wide changes implemented to support ACP processes, there has been a paucity of research which has addressed the experiences of a key stakeholder group - family and carers - as they navigate their way through these often very challenging processes. The study described in this article focussed on this key group.</p><p><strong>Methods: </strong>In-depth qualitative interviews were undertaken with family members and carers in a regional area of Australia in order to illuminate their lived experiences of ACP processes.</p><p><strong>Results: </strong>Thematic analysis of the narrative data yielded 4 key themes: Being overwhelmed on the ACP journey; unifying effects of completing and using an advanced care directive (ACD); experiencing the highlights and lowlights of care; and paying it forward in advice to staff, carers and families.</p><p><strong>Significance of results: </strong>The ACP journey is unique for each carer/family and can be overwhelming. Whilst he lived experiences of families/carers indicated that the quality of care received was of a high standard, feedback to staff suggested their communications be timelier and more empathic. All participants in this study reported benefitting from engaging in ACP early and appreciated support to do so. All benefitted from the preparation of an ACD and found the outcomes (in terms of concordance) gratifying.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e17"},"PeriodicalIF":1.9,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143025323","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":"Resonance, self-reflection, and preparedness through a web-based intervention for family caregivers of patients with life-threatening illness receiving specialised home care.","authors":"Cecilia Bauman, Viktoria Wallin, Sandra Doveson, Peter Hudson, Ulrika Kreicbergs, Anette Alvariza","doi":"10.1017/S1478951524002086","DOIUrl":"10.1017/S1478951524002086","url":null,"abstract":"<p><strong>Objectives: </strong>In home-based care for severely ill patients, family caregivers' contributions are crucial. This study aimed to explore how a web-based psychoeducational intervention influences family caregivers' experiences in addressing challenges while caring for a patient with life-threatening illnesses during specialized home care.</p><p><strong>Methods: </strong>This qualitative study undertook semi-structured interviews with family caregivers of patients with life-threatening illness receiving specialized home care. Family caregivers participated in a randomized controlled trial evaluating a psychoeducational intervention delivered through a website. Interviews were performed with 17 family caregivers; 13 spouses, 2 adult children, 1 parent, and 1 sibling, and analyzed using qualitative content analysis.</p><p><strong>Results: </strong>The results indicate that the intervention resonated with the family caregivers' situation which gave them comfort and awareness. It inspired self-reflection on the caregiver role that provided new insights and encouraged communication with the patient. The intervention prepared family caregivers for the patient's progressing illness and death. While preparing was a help for some, others did not feel ready to face this, which led them to avoid parts of the website.</p><p><strong>Significance of results: </strong>This psychoeducational web-based intervention guided family caregivers as they addressed challenges in caregiving and prepared for the future, and they valued having access to such an intervention. In a time of decreasing healthcare resources, web-based support may be a useful alternative to in-person interventions. It is important to continue developing, evaluating, and implementing web-based interventions to meet the needs of family caregivers.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e48"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143014010","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 effect of caregiver mastery on the associations of depression, anxiety, caregiver burden, fear of disease progression with quality of life among children with solid tumors.","authors":"Fangfang Cheng, Rui Gao, Huanhuan Zhu, Yu Zhang, Hui Xiong, Yingtao Meng","doi":"10.1017/S1478951524001998","DOIUrl":"10.1017/S1478951524001998","url":null,"abstract":"<p><strong>Objectives: </strong>Caring for children with solid tumors (STs) can impact caregiver's physical and mental health. Caregiver mastery, which influences psychological well-being, is vital in improving outcomes for both caregivers and children. The study aimed to investigate the relationship between caregiver mastery, anxiety, depression, fear of disease progression (FoP), caregiver burden, and the quality of life (QOL) of children with ST.</p><p><strong>Methods: </strong>This cross-sectional study was conducted from June 2022 to April 2023 at a Grade A tertiary hospital in Shandong. Family caregivers of children with ST completed several validated measures, including the Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Module, the Fear of Progression Questionnaire-parent version (FoP-Q-SF/PR), the Zarit Burden Interview Scale (ZBI), the hospital anxiety and depression scale (HADS), and the Caregiver Mastery Scale. Multiple linear regression analyses assessed the relationships between FoP, caregiver burden, anxiety, depression, caregiver mastery, and children's QOL. Results were expressed as <i>β</i> and 95% confidence intervals (CIs).</p><p><strong>Results: </strong>A total of 454 caregivers participated. Caregiver mastery was positively correlated with children's QOL (<i>β</i> = 0.80, 95% CI: 0.20 to 1.39). Depression (<i>β</i> = -0.64, 95% CI: -0.83 to -0.45), anxiety (<i>β</i> = -0.67, 95% CI: -0.85 to -0.49), caregiver burden (<i>β</i> = -1.20, 95% CI: -1.60 to -0.80), and FoP (<i>β</i> = -0.04, 95% CI: -0.05 to -0.03) were negatively related to children's QOL. Caregiver mastery moderated the associations between depression, caregiver burden, FoP, and children's QOL, while also improving the effect of mild anxiety on QOL.</p><p><strong>Significance of results: </strong>The study underscores the importance of fostering caregiver mastery to mitigate the negative impact of caregiver distress on children's QOL and improve outcomes for both caregivers and children with solid tumors.</p><p><strong>Conclusion: </strong>Caregiver mastery moderates the effects of anxiety, depression, FoP, and caregiver burdenon children's QOL. Supporting caregiver mastery can alleviate caregiver burden and enhance both caregiver and child well-being.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e28"},"PeriodicalIF":1.9,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143013948","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":"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":"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":"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":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12145489/pdf/","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":"OA","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":"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":"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":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12145490/pdf/","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":"OA","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":"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}