BMC Palliative Care最新文献

{"title":"Multi-level determinants of comprehensive palliative care delivery for breast and cervical cancer patients in Ethiopia: using the socio-ecological model as an analytical framework.","authors":"Kalkidan Solomon Deribe, Sarona Shewaye, Nahom Solomon Habtamu, Abigiya Wondimagegnehu, Yoseph Mamo Azmera, Adamu Addissie, Eva J Kantelhardt, Mirgissa Kaba","doi":"10.1186/s12904-026-02300-z","DOIUrl":"10.1186/s12904-026-02300-z","url":null,"abstract":"<p><strong>Introduction: </strong>Comprehensive palliative care is essential for improving the quality of life of women with breast and cervical cancer in Ethiopia, yet services remain poorly organized, largely inaccessible, and concentrated in the capital. While existing studies have quantified service gaps, the multi-level determinants enabling or hindering comprehensive care remain under-explored, particularly how these factors differ between urban and rural settings.</p><p><strong>Objective: </strong>To explore the multi-level determinants of implementing comprehensive palliative care for women with breast and cervical cancer in Ethiopia.</p><p><strong>Methods: </strong>An exploratory qualitative study was conducted from January to March 2025 in urban Addis Ababa and Sidama. Using purposive sampling with maximum variation, ninety-three participants including 37 women with breast or cervical cancer, 20 caregivers, and 36 key informants were recruited. Data were collected through open ended interview guides, transcribed verbatim, and analyzed using framework analysis guided by the Socio-Ecological Model. The analysis focused on identifying determinants at individual, interpersonal, community, organizational, and policy levels. ATLAS. ti V.09 was used to analyze the data.</p><p><strong>Findings: </strong>Determinants of comprehensive palliative care access and quality emerged across five socio-ecological levels, with urban-rural variations. At the individual level, determinants included personal health literacy, assets, and financial resources. Patient resilience and health literacy enabled care, but outweighed by catastrophic out-of-pocket costs and misconceptions of cancer as a curse more pronounced in Sidama. At the interpersonal level, social support and family dynamics were critical. Supportive families enabled care, while family stigma and partner abandonment were major barriers with stigma more intense in Sidama. At the community level, social capital, community networks, and traditional structures served as determinants. Survivor-led groups, edirs, and religious leaders enabled support, yet their impact was constrained by resource deficits. Sidama relied on informal support. Cervical cancer patients experienced stigma rooted in sexually transmitted infection leading to social exclusion, whereas breast cancer patients' stigma was linked to fears of contagion and visible disfigurement. At the organizational level, access to healthcare services, resource allocation, and organizational culture were dominant determinants. Specialized cancer centers and community based health insurance enabled access, but systemic undervaluation of comprehensive palliative care, opioid shortages, lack of trained staff, and broken referral systems were barriers, worse in Sidama. At the policy level, governance, regulations, and health system financing were the overarching determinants. A national guideline exists but lacks rural implementation guidance, and is ","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-08-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13504818/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148819957","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":"Inequities in access to palliative care and community-based indigenous palliative care programs in Canada: a scoping review.","authors":"Muhammad Saim, Hayder Al-Kazzaz, Ishaan Boparai, Mohamed Diarrassouba, Ahnaf Kazi, Haris Ahmad, Bruce D Martin","doi":"10.1186/s12904-026-02265-z","DOIUrl":"10.1186/s12904-026-02265-z","url":null,"abstract":"<p><strong>Introduction: </strong>Approximately two-thirds of deaths in Canada require palliative care. Indigenous Peoples continue to experience inequities in access to culturally safe, community-based palliative and end-of-life care. This scoping review examined experiences of care, barriers to access, and community-based palliative care programs among Indigenous Peoples in Canada to identify key gaps and inform future research and practice.</p><p><strong>Methods: </strong>This review was guided by the Arksey and O'Malley framework and reported in accordance with PRISMA-ScR guidelines. Searches of Medline, PubMed, Google Scholar, Indigenous Collections, and Indigenous Peoples of North America databases were conducted from inception to May 2026.</p><p><strong>Results: </strong>Thirty-four studies met the inclusion criteria, including studies on stakeholder experiences and community-based programs and interventions. Four overarching themes were identified: structural barriers and patterns in palliative care; cultural safety, communication, and misalignment with Western models of care; end-of-life preferences and experiences; and community-led approaches and capacity building. Indigenous Peoples have fewer home care nursing hours, physician home visits, and an increased likelihood of dying in an acute care setting. Indigenous participants consistently described preferences for home and community-based dying, family involvement, and integration of spiritual and cultural practices within care. Significant research gaps were also identified, including the absence of Métis-specific studies, limited research involving urban Indigenous populations, and lack of long-term evaluation of community-based programs. No identified studies were from Prince Edward Island or New Brunswick, despite the presence of Mi'kmaq and Wolastoqiyik communities in these provinces.</p><p><strong>Discussion: </strong>Current research exploring palliative care for Indigenous Peoples in Canada remains limited despite increasing attention toward health reconciliation. Community-led and culturally safe palliative care models have the potential to improve end-of-life experiences and align care with Indigenous values. Indigenous-led models show promise, but longer-term evaluations are needed to assess their effectiveness and applicability beyond small pilot settings.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13520227/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148841907","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":"Psychometric properties of the Person-Centered Palliative Care Nursing Instrument (PPCNI): validity and reliability study.","authors":"Melis Şen Yılmaz, Anita Karaca, Selmin Köse, Dilek Özdemir Ürkmez, Gülay Yıldırım","doi":"10.1186/s12904-026-02287-7","DOIUrl":"10.1186/s12904-026-02287-7","url":null,"abstract":"<p><strong>Introduction: </strong>The most effective approach for patients and healthcare professionals to manage multiple symptoms during treatment or care is palliative care support focused on symptom control. This study aimed to evaluate the validity and reliability of the Turkish version of the Person-Centered Palliative Care Nursing Instrument.</p><p><strong>Methods: </strong>A methodological and descriptive cross-sectional study was conducted at a city hospital in Istanbul. The sample included 200 nurses who worked in the intensive care unit. Data were collected using the Person-Centered Palliative Care Nursing Instrument and the Frommelt Attitude Toward Care of the Dying Scale.</p><p><strong>Results: </strong>The content validity index of the scale was calculated as 0.84. The Kaiser-Meyer-Olkin measure of sampling adequacy was 0.918, and Bartlett's Test of Sphericity yielded a χ² value of 8395.116 (p < 0.001). Item-total correlation coefficients ranged from 0.519 to 0.762, while factor loadings varied between 0.514 and 0.866. Confirmatory Factor Analysis revealed acceptable goodness-of-fit indices: χ² = 2355.612, df = 0.8, RMSEA = 0.07, GFI = 0.92, CFI = 0.97, and AGFI = 0.87. The internal consistency reliability of the subscales ranged from 0.905 to 0.965, with a Cronbach's alpha coefficient of 0.98 for the overall scale. Exploratory Factor Analysis confirmed the original structure of the scale, consisting of 37 items and four factors.</p><p><strong>Discussion: </strong>Families of people with chronic illness often struggle to provide adequate care, increasing the demand for professional support. Poor satisfaction levels of palliative patients, families and health care providers indicate the need for improvements in the palliative care system. Assessing the quality of palliative care provided by nurses is essential to improve the quality of patient care.</p><p><strong>Conclusion: </strong>The Turkish version of the scale was found to be a valid and reliable instrument for clinical use, enabling nurses to deliver palliative care tailored to patients' needs and preferences.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-08-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13602621/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149031505","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":"Facilitating advance care planning in oncology: study protocol for the evaluation of a tailored implementation of an advance care planning tool (the INDEED study).","authors":"Joica A M Benschop, Ida J Korfage, Agnes van der Heide, Annemieke van der Padt-Pruijsten, Carin C D van der Rijt, Wendy H Oldenmenger","doi":"10.1186/s12904-026-02285-9","DOIUrl":"https://doi.org/10.1186/s12904-026-02285-9","url":null,"abstract":"<p><strong>Background: </strong>Advance care planning (ACP) improves patient outcomes, but integration of ACP in daily practice for patients with cancer in hospitals remains suboptimal. Systematic implementation of tools to facilitate ACP could overcome the barriers for ACP. In this study we will evaluate the multifaceted tailored implementation of a digital ACP tool embedded in the electronic health record (EHR) in daily clinical cancer care. We will analyse the implementation process, its effect on use of the ACP tool, and the impact of use of the tool on healthcare use and healthcare costs.</p><p><strong>Methods: </strong>We will perform a multicentre, convergent mixed-methods implementation study. The digital ACP tool supports healthcare professionals in conducting and documenting ACP conversations, and sharing this documentation with colleagues within and outside the hospital. The implementation will encompass four phases guided by the Implementation of Change model: 1) diagnostic analysis; 2) tailored implementation protocol development; 3) protocol implementation and testing; and 4) evaluation of the implementation process and its effects. We will evaluate both qualitative and quantitative aspects of the implementation process. Additionally, use of the tool and its impact on in-hospital healthcare use in the last three months of life and associated costs are measured.</p><p><strong>Discussion: </strong>This study will provide knowledge on how to effectively implement ACP in routine care in hospitals for patients with cancer, by identifying effective implementation strategies. Furthermore, it will give insight in the effect of integration of ACP conversations in daily clinical care on healthcare use of patients with cancer in the last three months of life and the associated costs.</p><p><strong>Trial registration: </strong>This study is registered at ClinicalTrials.gov (NCT06350968, Registration date: April 8, 2024).</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149247153","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Hospice referral patterns in India during COVID-19: A retrospective study on advanced cancer patients.","authors":"Megha Reddy, Seema Rao, Sangeetha N","doi":"10.1186/s12904-026-02019-x","DOIUrl":"10.1186/s12904-026-02019-x","url":null,"abstract":"<p><strong>Context: </strong>Despite, its benefits, palliative care, especially in oncology, remains underutilized globally. The COVID-19 pandemic posed several challenges that may have further exacerbated the timing of referrals and access to care.</p><p><strong>Objective: </strong>This descriptive study examines hospice referral patterns and patient characteristics among advanced cancer patients admitted to an inpatient hospice center in urban India during the COVID-19 pandemic, including demographics, commonly reported cancer types, referral sources, and the timing from referral and admission to death.</p><p><strong>Methods: </strong>A retrospective study was conducted using admission records from January to April 2021 (second wave), September to December 2021 (intermediate period), and January to April 2022 (third wave) of the pandemic. Descriptive and quantitative analyses were performed to analyze patient characteristics and the timing of admission and referral to death.</p><p><strong>Results: </strong>The study included 740 new admissions of advanced cancer patients to the hospice across the three pandemic periods. Carcinoma breast was the most common cancer type referred to the hospice with doctors being the primary referral source. The median time from admission to death remained consistent across the three waves, and was less than 30 days. This suggests late transition to inpatient hospice care in the final weeks of life. No significant differences were observed in referral timing by age group or socioeconomic status.</p><p><strong>Conclusion: </strong>Advanced cancer patients in our study sample were consistently referred late to hospice care, irrespective of age or socioeconomic status. This highlights the urgent need for improved and timely referral systems, especially given that advanced cancer patients comprise the majority of cancer patients in India. Addressing gaps in access to care and awareness of the benefits offered by end-of-life care, particularly for younger patients and men, is crucial for ensuring equitable and cost-efficient palliative care delivery.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13584415/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148992046","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":"State of development of regional hospice and palliative care networks in Germany and a descriptive comparison of the role of coordination: results of an online survey using a maturity model.","authors":"Hanna A A Röwer, Eileen Doctor, Christoph Buck, Franziska A Herbst, Sven Schwabe","doi":"10.1186/s12904-026-02279-7","DOIUrl":"https://doi.org/10.1186/s12904-026-02279-7","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Regional hospice and palliative care networks (RHPCNs) aim to establish frameworks for care-management level collaboration between end-of-life care providers within specific regions. Since 2022, political support for RHPCNs in Germany has been bolstered by a new funding guideline for network coordination under § 39d SGB V. However, despite this political backing, limited data exist on the development of these networks. The present study, conducted within the framework of the HOPAN project, aimed to systematically assess the maturity of RHPCNs in Germany and offer first insights in differences in observed maturity levels, further depending on coordination.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A maturity model comprising six dimensions (moderation, infrastructure, public relations and information exchange, establishment and development, training and educational programs, development of regional care services and practices), further divided into n = 28 subdimensions developed de novo for the RHPCN context was applied as a self-assessment instrument. An online survey was conducted between November 2023 and January 2024. Invitations were sent via e-mail to N = 390 contacts involved in RHPCNs and disseminated through newsletters of two professional associations. Data were descriptively analyzed using SPSS.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;A total of n = 70 complete datasets were collected, n = 64 being included in the final analysis. The analyzed RHPCNs were established between 2001 and 2024. The \"Financing\" subdimension received the least mature self-assessments, with 46.7% of participating RHPCNs (n = 28) self-classifying at the lowest level. The \"Structure of network meetings\" subdimension demonstrated the highest level of maturity, with 42.6% of RHPCNs (n = 26) self-classifying full maturity. A comparative overview of maturity based on coordination type revealed that RHPCNs with paid coordination tended to exhibit more structured organization, systematic communication and funding, and comprehensive planning; moreover, also volunteer coordinators and coordination by network members demonstrated greater maturity than RHPCNs with no coordination at all.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;While many RHPCNs have well-structured coordination practices and effective meeting formats, significant challenges remain concerning the procurement of stable and systematic funding and project management. These insights suggest a need for targeted strategies to improve infrastructure and support the establishment of effective coordination roles to encourage the further development and sustainability of RHPCNs.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Trial registration: &lt;/strong&gt;The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien Registration N° DRKS00030629 date of registration November 2, 2022). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the Worl","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13480089/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148800379","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 coping strategies related to constipation among individuals with cancer: a qualitative study.","authors":"Derya Bıçak Ayık, Ayşe Serpici, Derya Akça Doğan","doi":"10.1186/s12904-026-02284-w","DOIUrl":"10.1186/s12904-026-02284-w","url":null,"abstract":"<p><strong>Purpose: </strong>Constipation is a common and distressing symptom among individuals with cancer, yet its subjective impact on patients' daily lives remains insufficiently understood. This study aimed to explore the experiences of constipation and the coping strategies used by individuals receiving cancer treatment.</p><p><strong>Methods: </strong>A qualitative descriptive design was used. Between February and June 2024, semi-structured interviews were conducted with 20 cancer patients in the oncology unit of a hospital. Data were audio-recorded, transcribed verbatim, and analyzed using inductive content analysis.</p><p><strong>Results: </strong>Four themes emerged from the analysis: physical effects, psychological effects, social and lifestyle effects, and coping strategies. Participants described constipation as a multidimensional experience characterized by abdominal pain, bloating, nausea, fatigue, reduced mobility, emotional distress, persistent symptom-related concerns, social withdrawal, and disruption of daily activities. Participants frequently reported difficulties maintaining household responsibilities, social relationships, and everyday routines. To manage symptoms, they employed a range of dietary, behavioral, and psychological coping strategies, including increased fluid intake, dietary modifications, physical activity, positive thinking, and support from family members. Across all themes, constipation was experienced as a loss of bodily and daily-life control that extended beyond bowel dysfunction and affected physical, emotional, and social well-being.</p><p><strong>Conclusion: </strong>Constipation was perceived not merely as a gastrointestinal symptom but as a multidimensional burden affecting autonomy, daily functioning, and quality of life. These findings highlight the importance of comprehensive constipation assessment and person-centered supportive care that addresses physical, psychological, and social dimensions of symptom burden. Early identification and holistic management of constipation may help improve quality of life among individuals living with cancer.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13560352/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148931644","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":"Investigating the impact of ambulance service models on paramedic delivery of end-of-life care in England: an exploratory study using case study design.","authors":"Natasha Campling, Sydney Anstee, Sue Latter, Alison Richardson, Joanne Turnbull, Jennifer Scott-Green, Sarah Voss","doi":"10.1186/s12904-026-02283-x","DOIUrl":"https://doi.org/10.1186/s12904-026-02283-x","url":null,"abstract":"<p><strong>Background: </strong>Rising demand for end-of-life care in developed countries, driven by ageing populations and multimorbidity, has led to increased calls to emergency ambulance services. Despite this little is known about paramedic practice in this context and service provision varies. As part of a wider study evaluating paramedic delivery of end-of-life care, in-depth case studies were undertaken to investigate how different models of ambulance service shape paramedic practice and influence experiences.</p><p><strong>Methods: </strong>Embedded case study design. The unit of analysis for each case comprised a distinct service model. Three ambulance services in England, UK were selected for their end-of-life service specifications. Semi-structured interviews and focus groups were undertaken with patients, family carers and healthcare professionals and data extracted from ambulance patient records. Qualitative data were analysed using Framework Analysis and patient ambulance record data using descriptive statistics and directed content analysis. Data were collected in parallel and analysed together utilising a mixed method, convergent parallel design. Integration occurred initially within cases, then across the cases.</p><p><strong>Results: </strong>Three cases were studied. They represented a usual model of end-of-life care delivery (Case 1) and more innovative models (Cases 2 & 3). Anticipatory medicines were carried by advanced paramedics in Case 2, and Case 3 had an in-service specialist palliative care team and access to palliative care ambulances. One hundred and one (n = 101) individuals participated, including n = 75 healthcare professionals and n = 26 patients and carers. In all cases, paramedics worked hard to provide supportive care, often attending due to primary and community service shortages. Learning on the job and limited access to essential resources (patient healthcare records, anticipatory medicines and/or palliative care advice) dominated practice across the cases. Access to advanced paramedics who carry anticipatory medicines in Case 2 and palliative care ambulances in Case 3 facilitated care provision and improved patient outcomes (death in preferred place).</p><p><strong>Conclusions: </strong>This study provides an in-depth exploration of paramedic practice at end-of-life via case studies of service models. To best support paramedics in practice, services should facilitate end-of-life care training, access to and ability to administer medicines, and promote interdisciplinary collaboration, underpinned by access to shared digital patient healthcare records.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149247067","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Managers' experiences of implementing palliative care in nursing homes: a qualitative follow-up study after an educational intervention for the staff.","authors":"Helene Åvik Persson, Anna Sandgren, Gerd Ahlström","doi":"10.1186/s12904-026-02276-w","DOIUrl":"10.1186/s12904-026-02276-w","url":null,"abstract":"<p><strong>Background: </strong>It is crucial to implement knowledge-based, high-quality palliative care for the increasing number of frail older people with multimorbidities in nursing homes. The manager's role in a successful implementation is often taken for granted despite scarce evidence. Therefore, the aim of this long-term follow-up study was to explore how managers experienced the implementation of palliative care in nursing homes after a multicentre educational intervention for staff. This Implementation of Knowledge-Based Palliative Care in Nursing Homes (KUPA) program consisted of workplace seminars, reflective activities, and practice-based tasks between seminars. The implementation was research-led before the participating managers took over its governance.</p><p><strong>Methods: </strong>This qualitative follow-up study considered semi-structured interviews with 22 managers responsible for implementing palliative care in 20 nursing homes in Sweden. The analysis was conducted using a reflexive thematic approach.</p><p><strong>Results: </strong>Our findings are presented under three main themes: Navigating Organisational Barriers, Empowering the Action Plan, and Ripple Benefits of Education. The managers navigate organisational barriers by establishing stability, maintaining continuity and supporting staff members' knowledge development despite structural barriers and limited resources. Empowering the action plan meant supporting staff to maintain motivation and a positive attitude towards workplace change. Managers emphasised their responsibility for the continuation of implementation of palliative care. The ripple benefits of education, from the managers' perspective, include increased knowledge and use of holistic palliative care, a shared language, and a consensus on the meaning of palliative care, thereby expanding cooperation and mutual understanding across the team's professions.</p><p><strong>Conclusions: </strong>This long-term follow-up study revealed several challenges to the implementation of palliative care and underscored the demanding work of managers. Staff shortage, limited budget and support led to work-related instability. Closer interprofessional collaboration and a broader approach to palliative care as a process from early signs to the end of life need to continue and deepen to be knowledge-based nursing care. From a leadership perspective, a successful implementation requires a long-term commitment, financial resources, a supportive organisation, and manager competence.</p><p><strong>Trial registration: </strong>NCT02708498. Date of registration: 26 February 2016.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-08-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13459225/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148708258","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":"\"The less they talk about it, the more we think about it\": a qualitative interview study of the existential agency of children and young people when they are relatives of a family member dying from cancer in a hospice in Denmark.","authors":"Sara Stage Voetmann, Dorte Ejg Jarbøl, Jens Søndergaard, Ricko Damberg Nissen, Dorte Toudal Viftrup","doi":"10.1186/s12904-026-02110-3","DOIUrl":"10.1186/s12904-026-02110-3","url":null,"abstract":"<p><strong>Background: </strong>Young relatives often grapple with a range of complex emotions, including fear, loneliness, and isolation, which are compounded by a lack of support and recognition. These experiences are deeply existential in nature, affecting their sense of meaning, identity, and emotional well-being. Despite the significance of these experiences, there remains a lack of scientific knowledge regarding the existential dimensions of the lives of young relatives facing the imminent death of a family member, particularly from the perspective of children and young people, whose voices and experiences are frequently underrepresented in research. In this phenomenological interview study, we explored the existential agency, emotions, thoughts, and concerns of children and young people who are relatives of a family member dying from cancer in a hospice in Denmark.</p><p><strong>Methods: </strong>In collaboration with four hospices in Denmark, we conducted 17 qualitative interviews with young relatives aged 6 to 23 years from September 2021 to January 2023. All interviews were audio recorded, transcribed verbatim, and subjected to phenomenological analysis following a modified Husserlian approach, as developed by Amedeo Giorgi. The empirical findings were discussed in relation to The integrated process model of loss and grief - An interprofessional understanding, as developed by Guldin and Leget.</p><p><strong>Findings: </strong>We found that being a young relative resembles a balancing act through unknown and uncertain territory, navigating an adaptive process that entails dealing with various ultimate existential concerns. Free spaces for being and being perceived as oneself are significant, likewise when dealing with existential concerns and tensions. Young relatives discern authenticity, and the balancing act is reciprocal; their immediate surroundings must also balance and align their care and communication.</p><p><strong>Trial registration: </strong>The study was retrospectively registered at SDU Research & Innovation Organisation (SDU RIO) and granted permission to commence processing of personal data, with a legal basis under the Data Protection Act §10, notification number 11,500.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13452090/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148698186","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}