Linda J Martinsen, Simen A Steindal, Heidi Holmen, Anette Winger
{"title":"Help us make a better flow in everyday life - family needs in home-based pediatric palliative care: a qualitative study.","authors":"Linda J Martinsen, Simen A Steindal, Heidi Holmen, Anette Winger","doi":"10.1186/s12904-025-01881-5","DOIUrl":"10.1186/s12904-025-01881-5","url":null,"abstract":"","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"232"},"PeriodicalIF":2.5,"publicationDate":"2025-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12466035/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145179724","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Siyu Li, Zhuoran Gao, Yanzhongcheng Xu, Min Zhang, Jingjing Wang, Xinghua Bai
{"title":"Social participation and its associated factors among head and neck cancer patients: a cross‑sectional study.","authors":"Siyu Li, Zhuoran Gao, Yanzhongcheng Xu, Min Zhang, Jingjing Wang, Xinghua Bai","doi":"10.1186/s12904-025-01875-3","DOIUrl":"10.1186/s12904-025-01875-3","url":null,"abstract":"<p><strong>Background: </strong>The special anatomical location and side effects of head and neck tumors (such as appearance change and dysphagia) can easily cause social isolation and psychological problems in patients. Social participation, as an important rehabilitation index that affects their quality of life and prognosis, is rarely studied in China, and the associated factors remain underexplored.</p><p><strong>Objectives: </strong>The purpose of this study is to evaluate the social participation level of patients with head and neck tumors and explore its associated factors, to provide a reference for formulating targeted intervention measures.</p><p><strong>Methods: </strong>Between September 2023 and July 2024, 176 patients with head and neck tumors from a tertiary hospital in Liaoning Province, China, participated in a cross-sectional study. The research instruments comprised the Demographic and Clinical Characteristics Questionnaire, the Social Dysfunction Screening Scale (SDSS), the Lubben Social Network Scale-6 (LSNS-6), and the Functional Assessment of Cancer Therapy-Head & Neck (FACT-H&N).</p><p><strong>Results: </strong>The defect rate of social participation in patients with head and neck tumors was 86.36%. Multivariable stepwise linear regression analysis showed that the total social participation score was negatively correlated with the total social network score (β=-0.327, P < 0.001), negatively correlated with the total quality of life score (β=-0.201, P < 0.001), negatively correlated with per capita monthly household income (β=-0.193, P = 0.003), positively correlated with divorce/widowhood (β = 0.166, P = 0.011) correlation, and positively correlated with radiotherapy (β = 0.133, P = 0.035).</p><p><strong>Conclusions: </strong>The degree of social participation of patients with head and neck cancer is low. It is suggested that medical staff should pay attention to the feelings of social participation of patients with head and neck cancer, focusing on patients who are unmarried, divorced or widowed, with low monthly family income and entering the radiotherapy stage, and take clinical nursing intervention measures to improve the social network of patients and pay attention to their quality of life, to improve the feelings of social participation of patients.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"231"},"PeriodicalIF":2.5,"publicationDate":"2025-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12465946/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145179758","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jeffrey J Walsh, Tamara Sussman, Harvey Bosma, Rachel Z Carter, Émilie Cormier, Sarah L Canham
{"title":"The intersections of palliative care and homelessness in social policy: A content analysis of Canadian policy documents.","authors":"Jeffrey J Walsh, Tamara Sussman, Harvey Bosma, Rachel Z Carter, Émilie Cormier, Sarah L Canham","doi":"10.1186/s12904-025-01866-4","DOIUrl":"10.1186/s12904-025-01866-4","url":null,"abstract":"<p><strong>Background: </strong>Palliative care for people experiencing homelessness (PEH) is a social issue of increasing importance. Policymakers are best positioned to lead societal responses by naming the issue in policy documents, allocating resources to address palliative care for PEH, and creating frameworks or guiding principles to inform action. This study aims to examine how, if at all, policymakers in Canada are identifying and addressing the issue of palliative care for diverse PEH in policies and frameworks governing the palliative care and/or homelessness sectors.</p><p><strong>Methods: </strong>We conducted a content analysis of 75 Canadian policy documents governing palliative care or homelessness for the presence of discussion of homelessness (in palliative care documents) and end-of-life (in homelessness documents). The level of discussion (no, indirect, minimal, significant), the jurisdictional level (municipal/city, provincial/territorial, national), and mention of intersecting identities were also recorded.</p><p><strong>Results: </strong>Of the 75 documents analyzed, 42 contained no discussion of palliative care and homelessness, and only five contained significant discussions by explicitly identifying barriers, describing unique needs, and identifying competencies or innovative practices to promote access and inclusion. All significant or national level discussions were palliative care documents. Intersectional discussions of palliative care for PEH were found in 9 of 75 of documents, with ethnicity and Indigeneity mainly mentioned in palliative care documents, and older age and gender mentioned solely in homelessness documents.</p><p><strong>Conclusions: </strong>There are critical gaps in Canadian policy documents governing palliative care and homelessness. Most policy documents fail to name or address the issues, with the gap most pronounced in homelessness documents, which contained no national level or significant discussions about end-of-life. Additionally, policy documents from both sectors seldomly discussed the unique needs and barriers of older, racialized, and/or gender-marginalized PEH at end-of-life. While competencies and service level solutions appear to be emerging within palliative care policies at the national level, policymakers from both sectors and across all levels of government must collaborate to address the unique needs of diverse PEH at end-of-life.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"229"},"PeriodicalIF":2.5,"publicationDate":"2025-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12462172/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145139172","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
J Müller-Kühnle, M Schanz, J Latus, D Marschner, S Schricker
{"title":"Life after hepatorenal syndrome: unraveling quality of life, psychological distress, and treatment preferences.","authors":"J Müller-Kühnle, M Schanz, J Latus, D Marschner, S Schricker","doi":"10.1186/s12904-025-01871-7","DOIUrl":"10.1186/s12904-025-01871-7","url":null,"abstract":"<p><strong>Background: </strong>Hepatorenal syndrome (HRS) is a life-threatening complication of advanced liver disease, associated with high short-term mortality and persistent symptom burden among survivors. While therapeutic advances have improved survival, little is known about the long-term quality of life (QoL), psychological distress, symptom management, and care preferences in this vulnerable population.</p><p><strong>Methods: </strong>In this prospective mixed-methods study, conducted between September 2024 and March 2025 at Robert Bosch Hospital in Stuttgart, Germany, patients who survived an HRS episode between 2019 and 2024 were identified retrospectively and invited for structured surveys. Patient-reported outcomes were assessed using the Short Form-12 (SF-12), targeted symptom and psychosocial questionnaires, and preference-oriented items. Quantitative data were analyzed descriptively and comparatively; open-ended responses were evaluated using qualitative content analysis.</p><p><strong>Results: </strong>Fifteen HRS survivors (mean age 62 ± 13 years; 33% male; 73% with alcohol-related cirrhosis) participated. Mean scores on the physical component summary (PCS-12) and mental component summary (MCS-12) of the SF-12 were 42.6 ± 8.5 and 41.7 ± 7.4, respectively, indicating moderate impairment in physical and mental health. Fatigue (73%), fluid retention (53%), and dyspnea (47%) were the most frequently reported symptoms. Psychological distress was reported by 87% of patients, and 53% expressed substantial fear of rehospitalization. Treatment preferences varied: 53% favored intensive care in case of deterioration, 7% preferred a palliative approach, and 40% remained undecided.</p><p><strong>Conclusion: </strong>Survivors of HRS face considerable long-term impairments and psychosocial vulnerability. These findings underscore the need for structured multidisciplinary follow-up that integrates symptom relief, psychological support, and individualized decision-making. Given the exploratory nature and small sample size, further longitudinal studies are needed to confirm these findings and inform targeted supportive care strategies.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"228"},"PeriodicalIF":2.5,"publicationDate":"2025-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12455802/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145132422","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Experiences and perspectives of older adults in nursing homes and their families participating in advance care planning: a meta-synthesis of qualitative studies.","authors":"Yanping Li, Fang Li, Yuli Li, Qingbo Zhou","doi":"10.1186/s12904-025-01886-0","DOIUrl":"10.1186/s12904-025-01886-0","url":null,"abstract":"<p><strong>Background: </strong>Against the backdrop of an increasingly aging global population, improving the quality of life and end-of-life care for older adults has become a critical public health concern. Advance care planning(ACP) offers potential benefits, including enhancing the quality of end-of-life care, reducing unnecessary medical interventions, and alleviating the burden on family members. However, in the unique context of nursing homes, the willingness and actual participation of residents and their families in ACP are influenced by various factors.</p><p><strong>Aim: </strong>This systematic review and meta-synthesis aims to comprehensively explore the experiences, perceptions, challenges, and facilitators related to ACP participation among older adults and their families in nursing homes, in order to provide an evidence base for developing more effective ACP implementation strategies.</p><p><strong>Methods: </strong>A qualitative meta-synthesis was conducted to systematically review and synthesize existing qualitative studies, guided by the ENTREQ statement and PRISMA guidelines. A systematic search was conducted across PubMed, Web of Science, Embase, EBSCO, The Cochrane Library, Sinomed, CNKI, and WanFang databases (from inception to October 2024) identified qualitative studies pertaining to the experiences and perspectives of nursing home residents and their families regarding ACP. The search was based on three key concepts: advance care planning, nursing homes, and qualitative research. Eligibility criteria included (1) participants being nursing home residents or their family members discussing ACP experiences; (2) studies published in English or Chinese; and (3) qualitative or mixed-method studies (qualitative data only extracted from mixed-methods). The methodological quality of the included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research. The data was synthesized using thematic synthesis method.</p><p><strong>Results: </strong>A total of 1,097 articles were retrieved through database searches, and 21 studies met the inclusion criteria. Three overarching themes were identified: (1) Attitudes of older adults and their families towards ACP; (2) Individualized needs for ACP; and (3) Factors affecting the implementation of ACP. Most older adults and their families perceived ACP as a facilitator of emotional expression and communication and acknowledged its educational value. However, some family members expressed avoidance, ambivalence, or uncertainty toward ACP. Moreover, ACP was found to be highly individualized, with varying needs among participants. Key facilitators of ACP in nursing homes included the provision of clear and concise information, adequate cognitive functioning among residents, supportive policies, an open cultural environment, a compassionate multidisciplinary team, and strong trusting relationships.</p><p><strong>Conclusion: </strong>An increasing","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"227"},"PeriodicalIF":2.5,"publicationDate":"2025-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12455779/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145126304","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Natália Rocha Tardelli, Fernanda Bono Fukushima, Jenny T van der Steen, Manuel Iván Cobas Rodríguez, Rasa Mikelyte, Daniel Neves Forte, Alex Sander Watanabe Palácio, Vilma Adriana Tripodoro, Mirna Garcia Burgoa, Douglas Henrique Crispim, Alfredo Rodríguez-Núñez, Luis Ricardo González Cruz, Mariuska Forteza Sáez, Patricia Bonilla Sierra, Ancu Tatiana Feng Escobar, María Elena Del Rosario Alcántara Godoy, Tulio Enrique Velásquez Castellanos, Mónica Osio Saldaña, Nisla Camaño Reyes, Miriam Elisa Riveros Ríos, Maria Del Rosario Berenguel Cook, Gloria Castillo Pichardo, Carlos Fernando Acuña Aguilar, Gabriela Píriz Alvarez, Ismariel Inés Espín Gonzalez, Leonardo de Andrade Rodrigues Brito, Edison Iglesias de Oliveira Vidal
{"title":"Mapping advance care planning and advance directives in Latin America.","authors":"Natália Rocha Tardelli, Fernanda Bono Fukushima, Jenny T van der Steen, Manuel Iván Cobas Rodríguez, Rasa Mikelyte, Daniel Neves Forte, Alex Sander Watanabe Palácio, Vilma Adriana Tripodoro, Mirna Garcia Burgoa, Douglas Henrique Crispim, Alfredo Rodríguez-Núñez, Luis Ricardo González Cruz, Mariuska Forteza Sáez, Patricia Bonilla Sierra, Ancu Tatiana Feng Escobar, María Elena Del Rosario Alcántara Godoy, Tulio Enrique Velásquez Castellanos, Mónica Osio Saldaña, Nisla Camaño Reyes, Miriam Elisa Riveros Ríos, Maria Del Rosario Berenguel Cook, Gloria Castillo Pichardo, Carlos Fernando Acuña Aguilar, Gabriela Píriz Alvarez, Ismariel Inés Espín Gonzalez, Leonardo de Andrade Rodrigues Brito, Edison Iglesias de Oliveira Vidal","doi":"10.1186/s12904-025-01849-5","DOIUrl":"10.1186/s12904-025-01849-5","url":null,"abstract":"<p><strong>Background/aims: </strong>The extent to which low- and middle-income countries have implemented Advance Care Planning (ACP) and Advance Directives (AD) remains unclear. We aimed to map the current status of ACP/AD in Latin America.</p><p><strong>Methods: </strong>This cross-sectional, mixed-methods survey of ACP/AD in LA comprised interviews with 18 key informants from 18 out of 20 countries, most of whom were appointed by national Palliative Care Associations. Online interviews were conducted with each informant, covering a range of relevant topics from AD regulations to the use of ACP/AD in the context of end-of-life clinical decision making. We performed member checking and data triangulation to confirm our findings.</p><p><strong>Results: </strong>Only eight (44%) countries have some form of ACP/AD regulations. Most regulatory frameworks tend to adopt a legalistic pattern heavily influenced by the North American model. Despite that characteristic of AD regulations in LA, the leading strategy used by patients to avoid unwanted treatment at the end of life is through conversations with their families, whereas the least common strategy was consulting with a lawyer. In six (33%) countries, informants believed it was common for patients to grant their families permission to modify their previous choices regarding future treatments. The religiosity/spirituality of populations play an important role in the implementation of ACP in the region. Additionally, respecting patients' preferences of care at the end of life appears to be tied more to aspects related to the characteristics of doctor-patient relationship, and the degree of integration of palliative care into the healthcare system than the existence or content of AD regulations. There was consensus that none of the countries provide sufficient education about ACP/AD to healthcare professionals.</p><p><strong>Conclusions: </strong>Our findings encourage rethinking ACP/AD in LA from a decolonial perspective, considering characteristics such as the preference for a relational model of autonomy in several countries and the importance of taking the religiosity/spirituality of individuals into account during ACP conversations. Our data also suggest that honoring patients' preferences of care at the end of life entails integrating palliative care into health care systems, educating healthcare professionals and the population, and fostering longitudinal trusting relationships between those professionals, patients, and their families.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"226"},"PeriodicalIF":2.5,"publicationDate":"2025-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12413744/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145006631","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mpho Ratshikana, Witness Mapanga, Sukoluhle Pilime, Peedi Mathobela, Oluwatosin Ayeni, Anu Abrahams, Lawrence Mandikiana, Phillip Makume, Sonti Imogene Pilusa, Jacob Merika Tsitsi
{"title":"Does palliative care improve the quality of life for cancer patients in three tertiary hospitals in South Africa?","authors":"Mpho Ratshikana, Witness Mapanga, Sukoluhle Pilime, Peedi Mathobela, Oluwatosin Ayeni, Anu Abrahams, Lawrence Mandikiana, Phillip Makume, Sonti Imogene Pilusa, Jacob Merika Tsitsi","doi":"10.1186/s12904-025-01861-9","DOIUrl":"https://doi.org/10.1186/s12904-025-01861-9","url":null,"abstract":"<p><strong>Background: </strong>Quality of life (QoL) is a crucial treatment outcome for cancer patients, who often experience significant symptom burden and distress. Despite its benefits, access to palliative care remains limited in many settings, including South Africa. This study assessed changes in QoL before and after palliative care interventions and examined factors associated with QoL improvements.</p><p><strong>Methods: </strong>A retrospective cohort study was conducted among cancer patients referred for palliative care at three tertiary hospitals in Johannesburg, South Africa. Interdisciplinary teams provided palliative care, and patient data on sociodemographic and clinical characteristics were collected. QoL was measured using the World Health Organization Quality Of Life-BREF (WHOQOL BREF) tool at baseline and follow-up. Paired t-tests compared mean QoL scores, and mixed regression analysis identified factors associated with QoL improvements. Data were analyzed using Stata version 18 SE.</p><p><strong>Results: </strong>Among 724 patients (68.51% female, mean age 51.78 years, SD: 16.62), the most common cancers were breast (29.83%), gastrointestinal/hepatobiliary (21.27%), and cervical (16.71%). Baseline QoL mean (SD) scores were low across all domains. Following palliative care, significant improvements (p < 0.001) were observed: general health improved from 43.64 (26.17) to 66.28 (26.71); physical health from 48.46 (15.45) to 53.42 (15.08); psychological health from 57.54 (17.39) to 65.44 (18.75); environmental health from 60.97 (19.90) to 71.49 (18.84) and social health from 59.26 (25.60) to 71.08 (23.54) (all p < 0.001). HIV-negative status was associated with better outcomes across all domains, with coefficients ranging from 0.19 to 0.46 (p < 0.05) compared to those living with HIV.</p><p><strong>Conclusions: </strong>Palliative care significantly improved QoL across all measured domains among cancer patients at tertiary hospitals in Johannesburg. These findings highlight the need to integrate palliative care into routine oncology treatment to enhance patient well-being.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"225"},"PeriodicalIF":2.5,"publicationDate":"2025-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12395754/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144975638","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nuriye Efe Erturk, Hatice Polat, Sinan Aslan, Afitap Ozdelikara
{"title":"Correction: Cultural adaptation and validation of Turkish version of The Spiritual Needs Assessment for Patients (T-SNAP) scale in patients with cancer.","authors":"Nuriye Efe Erturk, Hatice Polat, Sinan Aslan, Afitap Ozdelikara","doi":"10.1186/s12904-025-01864-6","DOIUrl":"https://doi.org/10.1186/s12904-025-01864-6","url":null,"abstract":"","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"224"},"PeriodicalIF":2.5,"publicationDate":"2025-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12374410/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144975567","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Roxane Pellerin, Diane Tapp, Catherine Filion, Sophie Castonguay-Paradis, Gina Bravo, Guillaume Robert
{"title":"Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review.","authors":"Roxane Pellerin, Diane Tapp, Catherine Filion, Sophie Castonguay-Paradis, Gina Bravo, Guillaume Robert","doi":"10.1186/s12904-025-01862-8","DOIUrl":"https://doi.org/10.1186/s12904-025-01862-8","url":null,"abstract":"<p><strong>Background: </strong>Caregivers of individuals with major neurocognitive disorders often bear the responsibility of participating in decisions related to the provision of palliative care for their loved ones due to the loss of capacity to consent as the disease progresses. This role is highly significant, as caregivers can influence both the quality of life and life expectancy of those they care for. Since they make decisions based on their knowledge, skills, preferences, and values, It is essential to develop a more comprehensive understanding of theses concepts regarding palliative and end-of-life care (PEoLC).</p><p><strong>Objectives: </strong>Provide an overview of the existing scientific data on caregiver's knowledge, attitudes and representations of palliative and end-of-life care and to analyze it in order to gain a deeper comprehension of the positioning of caregivers on the subject.</p><p><strong>Methods: </strong>A narrative literature review was conducted to address the research question: \"What are the knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care?\" Searches in PubMed, CINAHL, and PsycINFO targeted articles published between 2000 and 2023 addressing the knowledge, attitudes, or representations of caregivers of individuals with major neurocognitive disorders on any of the PEoLC topics.</p><p><strong>Results: </strong>Of the 900 articles found, 25 were included in the analysis. In addition to the palliative care approach, end-of-life practices founded included advance care planning, hospital transfer, artificial nutrition and hydration, treatment withdrawal, palliative sedation, and medically assisted dying. The analysis revealed a disparity in the number of studies on various PEoLC practices, with more data available on advance care planning than other practices. Caregivers had a general understanding of the palliative care approach but limited knowledge of specific PEoLC practices. While there was some consensus on representations of the palliative care approach, ambivalent attitudes and representations were observed regarding PEoLC practices.</p><p><strong>Conclusion: </strong>With the evolution of palliative care services and the increasing role and responsibility of caregivers in decision-making, a deeper understanding of their knowledge, attitudes, and representations of PEoLC is essential to better identify their support and informational needs. Further research is needed to enable healthcare professionals to provide targeted support and education to caregivers as patient conditions evolve, thereby improving overall care quality.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"223"},"PeriodicalIF":2.5,"publicationDate":"2025-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12372408/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144975581","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sabine H Krauss, Constanze Rémi, Claudia Bausewein, Jeremias Bazata, Alina Grebe, Christoph Ostgathe, Jan Schildmann, Eva Schildmann
{"title":"Correction: \"Is this sedation?\" - a Group Delphi process to define cut-off doses and dosing intervals for potentially sedating drugs in palliative care.","authors":"Sabine H Krauss, Constanze Rémi, Claudia Bausewein, Jeremias Bazata, Alina Grebe, Christoph Ostgathe, Jan Schildmann, Eva Schildmann","doi":"10.1186/s12904-025-01865-5","DOIUrl":"10.1186/s12904-025-01865-5","url":null,"abstract":"","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"222"},"PeriodicalIF":2.5,"publicationDate":"2025-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12363059/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144884145","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}