Palliative Care and Social Practice最新文献

{"title":"Integrating patient-centred and tumour-centred cancer care: the EU-MyPath implementation project offers an innovative digital solution with care pathways.","authors":"Anne-Lore Scherrens, An Jacobs, Kim Beernaert, Koen Pardon, Eveline Raemdonck, Marie Fallon, Kathrin Cresswell, Nusa Faric, Robin Williams, Tonje Lundeby, Marianne J Hjermstad, Luc Deliens, Stein Kaasa","doi":"10.1177/26323524241296143","DOIUrl":"10.1177/26323524241296143","url":null,"abstract":"<p><p>Cancer is one of the leading causes of mortality, with new cases expected to rise. Medical advances increase cure rates and prolong patient lives, but survivorship involves high symptom burden, loss of function and emotional distress. Improving patient-centred care (PCC) and quality of life throughout the care process is essential. Key to this improvement are systematic use of patient-reported outcome measures (PROMs) and patient-centred care pathways (PCCPs). Despite established benefits, current cancer care focuses on tumour-centred care approaches often neglecting the patient perspective. Evidence-based PCC guidelines fail to be routinely incorporated into clinical practices. The Horizon 2020-funded European MyPath project aims to address these gaps by developing, implementing and evaluating digital PCCPs with PROMs. MyPath will be tailored to enhance the organisational contexts of cancer centres across Europe through the application of implementation science strategies. This paper describes the current state of applying PCC in routine cancer care and presents a forward-looking perspective on how the MyPath project can successfully adopt and implement digital PROMs across countries. A literature search was conducted to provide the state-of-the art.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241296143"},"PeriodicalIF":2.7,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11577466/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142682483","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Professional Guest: conceptualizing home visits in palliative care settings.","authors":"Ron Sabar, Inbal Halevi Hochwald, Moran Weiss, Gila Yakov","doi":"10.1177/26323524241293821","DOIUrl":"10.1177/26323524241293821","url":null,"abstract":"<p><strong>Background: </strong>Home-based palliative care is a growing trend, necessitating a deeper understanding of the unique challenges faced by professional staff members in this setting. The shift to home-based care has been driven by advances in technology, changing demographics, and a move toward more patient-centered approaches. As a care setting, the home environment offers distinct characteristics, presenting both advantages and drawbacks for patients and healthcare providers.</p><p><strong>Objectives: </strong>This study aims to explore the experiences and perceptions of professional staff members providing palliative care in patients' homes.</p><p><strong>Design: </strong>A qualitative descriptive study.</p><p><strong>Methods: </strong>Qualitative study with 36 home-based hospice professionals using questionnaires and interviews. Thematic analysis identified key themes in staff experiences and challenges.</p><p><strong>Results: </strong>The central theme of \"The Professional Guest\" highlights the hybrid identity and boundary role professional staff members must navigate, being both medical professionals and guests in the patient's domain. Four sub-themes emerged: (1) Observing and Applying, emphasizing the conscious scanning of the home environment to build trust and tailor care plans; (2) Asking for Permission, respecting the patient's territory and adapting to their norms; (3) Expecting the Unexpected, maintaining flexibility and improvising in unfamiliar situations; and (4) Preparing the Ground for Your Absence, equipping patients and families with comprehensive self-care guidance during professional staff members' absences.</p><p><strong>Conclusion: </strong>The \"Professional Guest\" phenomenon captures the complexities of providing care in patient's homes, necessitating a delicate balance between professionalism and personal vulnerability. Specialized training programs and policies should be developed to support professional staff members in navigating this hybrid identity and effectively negotiating the boundaries between professional and personal spheres.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241293821"},"PeriodicalIF":2.7,"publicationDate":"2024-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11571253/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142669337","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Medical influence: what does success look like?","authors":"Diane Wintz, Kelly Wright, Kathryn B Schaffer","doi":"10.1177/26323524241297695","DOIUrl":"10.1177/26323524241297695","url":null,"abstract":"<p><strong>Background: </strong>Social media influencers have revolutionized information, gaining viewers, retention, and interest with short videos. Medical teams could potentially benefit from this medium for educating patients. Defining success in this endeavor remains unclear.</p><p><strong>Objective: </strong>We are a surgeon-nurse team that sought to promote our messages on social media to gain viewers and interest in our website.</p><p><strong>Design: </strong>An educational podcast focusing on end-of-life discussions was linked to social media platforms, including <i>Instagram</i> and <i>TikTok</i>, to gain views on our website.</p><p><strong>Methods: </strong>Eleven podcast episodes were produced and published over a 3-month period, between November 2023 and January 2024. The podcast episodes were promoted to \"similar clients\" based on internal algorithms by a podcast streaming service, <i>Spotify</i>. The promotion provided by <i>Spotify</i> and website views were compared to responses evident by other social media posts.</p><p><strong>Results: </strong>After 3 months of publishing podcast episodes on <i>Spotify</i>, with free publicity, our podcast gained 10,400 promotions, 486 listeners, 49 followers, and approximately 1200 random website views. In comparison, the podcast content garnered more than 50,000 video clip views on <i>TikTok</i> and <i>Instagram</i>, after funding these brief video promotions. <i>TikTok</i> and <i>Instagram</i> both charged $20 or more per promotion. Paid promotion opportunities resulted in no website visits or podcast followers.</p><p><strong>Conclusion: </strong>Our own experience with social media promotion was inadequate in generating interest in our content. The authors would encourage other teams to be strategic with paid promotions and to consider engaging a marketing expert to improve the potential for mass interest in content and promotional efficiency. Additionally, based on these findings, the authors would appreciate more transparency in the algorithms behind successful promotions to better understand \"what success looks like\" for medical messaging.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241297695"},"PeriodicalIF":2.7,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11558736/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142629867","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Palliative care consultation in the last week of life and associated factors: a cross-sectional general population study.","authors":"Susanna Böling, Hanna Gyllensten, My Engström, Emma Lundberg, Johan Berlin, Joakim Öhlén","doi":"10.1177/26323524241293818","DOIUrl":"https://doi.org/10.1177/26323524241293818","url":null,"abstract":"<p><strong>Background: </strong>Knowledge of access to palliative care services, such as palliative care consultation teams, is crucial to identify areas of improvement for policy and practice. Research on general populations spanning all disease groups and multiple healthcare contexts is needed.</p><p><strong>Objective: </strong>The objective was to investigate the sociodemographic, disease- and care-related, and care structure-related factors associated with palliative care consultations for adult patients in the last week of life.</p><p><strong>Design: </strong>Cross-sectional, general population-level study based on linked Swedish national public authority registers and a national palliative care quality register.</p><p><strong>Methods: </strong>The study population included all adult patients deceased in Sweden between 2013 and 2019 and registered in the Swedish Register of Palliative Care, with an anticipated death, and not enrolled in specialised palliative care. Multivariable logistic regression analyses to investigate association with palliative care consultations.</p><p><strong>Results: </strong>In total, 8.2% of the 265,129 participants had received a palliative care consultation in the last week of life. The main multivariable analysis (Model 1) showed that those dying from neoplasms were more likely to receive a palliative care consultation (odds ratio (OR) 8.55, 95% CI 8.15-8.98) than those dying from circulatory diseases. Palliative care consultation was more likely with an increasing number of symptoms (OR 1.35, CI 1.32-1.37). Patients of old age and patients deceased in hospitals were less likely to receive a palliative care consultation. Moreover, factors such as educational attainment, healthcare region, living in a single-person household, and year of death were also associated with a palliative care consultation in the last week of life.</p><p><strong>Conclusion: </strong>Our findings show inequities in access to palliative care consultations in the last week of life. Considering changes to policy and clinical practice is motivated.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241293818"},"PeriodicalIF":2.7,"publicationDate":"2024-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11549695/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142629876","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using relational ethics to approach equity in palliative care.","authors":"Kristina A Smith, Kelli Stajduhar","doi":"10.1177/26323524241293820","DOIUrl":"https://doi.org/10.1177/26323524241293820","url":null,"abstract":"<p><p>Evidence suggests that people experiencing inequities and who are highly marginalized (e.g., people impacted by racism, sexism, discrimination, stigma, mental illness, substance use issues, disability, and the effects of homelessness; also referred to as structurally vulnerable individuals) often die alone, in pain, and not receiving the care they need. Some research even points to highly marginalized people not feeling worthy of care. The need to consider equity in the context of palliative care has recently emerged but little attention has been paid to how ethical decision-making generally, and relational ethics, specifically, could provide guidance in the care of highly marginalized people who are on a palliative trajectory. Relational ethics offers a model of care and decision-making framework that emphasizes how clients, healthcare providers, and larger social structures are interwoven and acknowledge that structural conditions can position people to have less choice than others. Relational approaches in the context of palliative care for highly marginalized people have the potential to provide a lens to better support the delivery of equitable palliative care. This critical essay explores relational ethics as a way to approach equity in palliative care to support clients facing structural vulnerabilities. We discuss relational ethical considerations to approach collaborative partnerships between clients, healthcare providers, and the larger community with the goal of aligning care with clients' values. An ethical case for how a relational ethics approach might be used to promote equitable access to palliative care will be explored, highlighting how such approaches have the potential to better align client wishes with their needs and to ensure decision-making and care delivery is trauma-informed, harm reduction focused, and culturally respectful. Relational ethics can support social change in equity and palliative care by contributing ethically informed ways of caring for/with/about highly marginalized people.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241293820"},"PeriodicalIF":2.7,"publicationDate":"2024-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11544665/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142629898","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Fostering timely integrated palliative care in nursing homes through critical companionship: experiences from a Padi-Palli interventional study in France.","authors":"Emmanuel Bagaragaza, Benoite Umubyeyi, Danièle Leboul","doi":"10.1177/26323524241293819","DOIUrl":"10.1177/26323524241293819","url":null,"abstract":"<p><strong>Background: </strong>One of the fundamental pillars of integrating a palliative approach in nursing home care is increasing professional competencies and institutional capacity. However, conventional training designs have been proven to fall short of supporting this integration. This paper details the results of a practice development intervention that used critical companionship as a learning design to facilitate the integration of a palliative approach in the care of nursing home residents in France.</p><p><strong>Objectives: </strong>This study aimed to explore the perceived outcomes of Padi-Palli critical companionship in supporting the integration of a palliative approach in the care of residents in nursing homes in France.</p><p><strong>Design: </strong>Qualitative multiple case study situated within a constructivist theoretic lens.</p><p><strong>Methods: </strong>This qualitative multiple case study is part of a larger interventional mixed-method study. Nurses with palliative care clinical expertise facilitated experiential learning with nursing home professionals for 10 months spread across three phases. At the end of the intervention, a purposive sampling method was used to select professionals from six nursing homes that participated, including leaders and critical companions. Focus groups and individual interviews were used to collect data between February 2023 and March 2024. Data analysis followed Braun and Clarke's reflexive thematic analysis.</p><p><strong>Results: </strong>Four interrelated themes explained how Padi-Palli critical companionship enhanced the palliative care competencies of professionals, improved nursing home palliative care practices, supported organisational practices for palliative care and facilitated collaborative learning at the bedside. The collaborative and co-creative principles that informed the delivery of the Padi-Palli critical companionship program facilitated a culture shift towards integrating a palliative approach in resident care at individual, team and organisational levels.</p><p><strong>Conclusion: </strong>Critical companionship offers an innovative practice development approach that can support the delivery of timely palliative care for residents in nursing homes.</p><p><strong>Trial registration: </strong>ID-RCB 2020-A01832-37.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241293819"},"PeriodicalIF":2.7,"publicationDate":"2024-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11533194/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142576574","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experience or perception: What healthcare providers need when using the Utrecht Symptom Diary-4 Dimensional, a mixed-methods study.","authors":"Tom Lormans, Everlien de Graaf, Carlo Leget, Saskia Teunissen","doi":"10.1177/26323524241281748","DOIUrl":"10.1177/26323524241281748","url":null,"abstract":"<p><strong>Background: </strong>The Utrecht Symptom Diary-4 Dimensional (USD-4D), an adaptation of the Edmonton Symptom Assessment System, supports healthcare providers (HCPs) in identifying, monitoring, and exploring multidimensional symptoms and needs of patients in the palliative phase. For the USD-4D to be optimally implemented in clinical palliative care, it is essential to know and understand the needs of HCPs when using it.</p><p><strong>Objective: </strong>To identify and interpret the needs of HCPs when using the USD-4D in clinical palliative care, operationalized as perceived facilitators and barriers.</p><p><strong>Design: </strong>An explanatory mixed-methods study with a sequential design.</p><p><strong>Methods: </strong>Data were collected between October 2019 and September 2020. In phase I, quantitative data were collected through a survey targeting Dutch HCPs working in palliative care. Facilitators were identified as items answered positively by ⩾80% of participants, while barriers were identified as items answered negatively by ⩾20% of participants. In phase II, these identified facilitators and barriers were explored in depth through mixed composition focus groups. The Capability-Opportunity-Motivation-Behavior (COM-B) model was utilized to contextualize and interpret the perceived facilitators and barriers.</p><p><strong>Results: </strong>A total of 122 HCPs completed the survey, with 95% of the respondents being women with a mean age of 48 years and 72% being nurses. Additionally, 53% of the respondents had no prior experience with the USD-4D. In phase II, 21 HCPs participated in focus groups. 95% of the participants were women with a mean age of 49 years and 67% being nurses. HCPs pinpointed facilitators primarily related to the potential benefits of the USD-4D for daily patient care. Conversely, the identified barriers included issues related to HCPs' behavior, knowledge gaps, uncertainty regarding their abilities and attitudes toward the USD-4D, and technical obstacles.</p><p><strong>Conclusion: </strong>Facilitators and barriers across all facets of the COM-B model were recognized, with a notable emphasis on motivational barriers. It should be acknowledged that facilitators and barriers can evolve throughout the implementation process, underscoring the importance of viewing implementation and integration as fluid and continuous endeavors. Facilitators and barriers are closely linked to HCPs' reflective capacities, emphasizing the need for tailored intervention strategies that align with different stages of USD-4D implementation.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241281748"},"PeriodicalIF":2.7,"publicationDate":"2024-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11528593/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142569635","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Willingness to be present throughout patient death via medical aid in dying in a national sample of interdisciplinary US hospice clinicians: a content analysis of rationales.","authors":"Todd D Becker, Cindy L Cain, John G Cagle, Joan K Davitt, Nancy Kusmaul, Paul Sacco","doi":"10.1177/26323524241288881","DOIUrl":"10.1177/26323524241288881","url":null,"abstract":"<p><strong>Background: </strong>Although medical aid in dying (MAID) legalization continues to expand across the United States, limited research has elucidated attitudes toward its clinical provision, especially in terms of clinician presence.</p><p><strong>Objective: </strong>The objective of the current study was to explore attitudes toward presence throughout a patient's death via MAID in hospice physicians, nurses, social workers, and chaplains. Aims included (1) characterizing willingness to be present throughout patient death via MAID and (2) describing rationales for willingness.</p><p><strong>Design: </strong>We employed a cross-sectional design.</p><p><strong>Methods: </strong>A national convenience sample of interdisciplinary hospice clinicians in the United States (<i>N</i> = 413) completed a self-administered, mixed-method survey via Qualtrics. A quantitative item assessing participants' willingness (no, unsure, yes) to be present throughout a patient's death via MAID preceded a qualitative probe inquiring about their rationales behind their previous response. Quantitative responses were characterized through frequencies and percentages. Qualitative responses within each resulting quantitative subsample were content analyzed for surface-level meaning using inductive coding.</p><p><strong>Results: </strong>Participants who were willing to be present (<i>n</i> = 305 [74%]) attributed their willingness to personal support, definitions of quality clinical care, and values from their professional training. Some engaged in boundary setting, describing particular conditions under which they would be willing to be present. Those who were unwilling (<i>n</i> = 63 [15%]) noted personal objections to the concept of MAID, personal objections to MAID participation, and perceptions of MAID's misalignment with healthcare. Those who were unsure (<i>n</i> = 45 [11%]) premised their responses on ambivalence and a lack of experience, both of which precluded formulating a definitive position.</p><p><strong>Conclusion: </strong>Although three-quarters of participants were willing to be present during MAID, qualitative responses revealed great nuance within and across quantitative subsamples. Hospice clinicians would benefit from greater professional guidance and support pertaining to MAID.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241288881"},"PeriodicalIF":2.7,"publicationDate":"2024-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11528647/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142569656","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Adapting, implementing and evaluating a navigation intervention for older people with cancer and their family caregivers in six countries in Europe: the Horizon Europe-funded EU NAVIGATE project.","authors":"Rose Miranda, Tinne Smets, Lara Pivodic, Kenneth Chambaere, Barbara Pesut, Wendy Duggleby, Bregje D Onwuteaka-Philipsen, Barbara Gomes, Peter May, Katarzyna Szczerbińska, Andrew N Davies, Davide Ferraris, H Roeline Pasman, Maja Furlan de Brito, Ilona Barańska, Laura Gangeri, Lieve Van den Block","doi":"10.1177/26323524241288873","DOIUrl":"10.1177/26323524241288873","url":null,"abstract":"<p><strong>Background: </strong>Navigation interventions could support, educate and empower older people with cancer and/or their family caregivers by addressing barriers and ensuring timely access to needed services and resources throughout the continuum of supportive, palliative and end-of-life care.</p><p><strong>Objectives: </strong>European Union (EU) NAVIGATE is an interdisciplinary and cross-country Horizon Europe-funded project (2022-2027) aiming to evaluate the effectiveness, cost-effectiveness and implementation of a navigation intervention for older people with cancer and their family caregivers in Europe. EU NAVIGATE aims to advance the evidence on cancer patient navigation in Europe.</p><p><strong>Design: </strong>Adaptation, implementation and evaluation of a navigation intervention with an international pragmatic randomized controlled trial (RCT) and embedded mixed-method process evaluation at its core. A logic model guides dissemination and impact-generating strategies. EU NAVIGATE involves six experienced EU academic partners; one EU national cancer league with their affiliated academic partner; three EU dissemination partners; and a Canadian partner.</p><p><strong>Methods: </strong>We adapted the Canadian Navigation: Connecting, Advocating, Resourcing, and Engaging (Nav-CARE^©) volunteer programme to healthcare contexts in Belgium, Ireland, Italy, the Netherlands, Poland and Portugal following the new ADAPT guidance. Nav-CARE was developed over the past 15 years and supports people with declining health and their families to improve their quality of life and well-being, foster empowerment and facilitate timely and equitable access to healthcare and social services. In EU NAVIGATE, the navigation intervention is being provided by trained and mentored social workers in Poland and by trained and mentored volunteers in the other five countries. Via a pragmatic RCT with process evaluation, we implement and evaluate the navigation intervention to study its impact on older people with cancer and their family caregivers. We also aim to understand its cost-effectiveness, how to optimally implement it in different countries, and its differential effects in patient subgroups. We will also map existing cancer navigation interventions in Europe, the United States and Canada to position EU NAVIGATE within the field of navigation interventions worldwide.</p><p><strong>Conclusion: </strong>EU NAVIGATE aims to deliver high-quality evidence on a navigation intervention for older people with cancer in Europe and to develop practice and policy recommendations for sustainable implementation of navigation interventions in Europe and beyond.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241288873"},"PeriodicalIF":2.7,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11492236/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476748","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding end-of-life doula care provision: reporting on the design of a bereavement survey to evaluate doula support.","authors":"Kirsten Bashir, Emma Clare, Catherine Pestano, Esther Ramsey-Jones, Erica Borgstrom","doi":"10.1177/26323524241273489","DOIUrl":"10.1177/26323524241273489","url":null,"abstract":"<p><strong>Background: </strong>Delivery of consistent patient-centred care at end-of-life care continues to challenge healthcare providers and research continues to suggest that peoples' needs are not being reliably met. Consequently, healthcare services are looking to innovate how support is provided, such as commissioning doulas to support dying people and those close to them.</p><p><strong>Objective: </strong>Within the United Kingdom, there is little existing research about peoples' experience of receiving end-of-life doula support. This paper outlines the design of a survey for the family or friends of a person who received end-of-life doula support.</p><p><strong>Design: </strong>To evaluate the role of an end-of-life doula in supporting the dying person and those who care for them, we designed a post-bereavement survey as part of a wider evaluation strategy of doula services. Following multiple literature reviews and an iterative process of consulting with the professional organisation and previous service users, a questionnaire was developed to collect this data. This survey is hosted online, with paper copies available to widen accessibility.</p><p><strong>Conclusion: </strong>End-of-life doula support is a relatively new area of provision for dying people and those important to them, such as family and friends. It is even more innovative to have doula support commissioned as part of a locality's healthcare service. There is a dire need for empirical research to understand the impact of this further. The process of researching the area and designing the evaluation survey for this service revealed the complexity of the role and the difficulty of capturing what was found to be helpful for the dying person and those around them.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241273489"},"PeriodicalIF":2.7,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11489920/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476750","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}