Palliative Care and Social Practice最新文献

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Medical influence: what does success look like? 医疗影响力:成功是什么样的?
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-11-12 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241297695
Diane Wintz, Kelly Wright, Kathryn B Schaffer
{"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}
引用次数: 0
Palliative care consultation in the last week of life and associated factors: a cross-sectional general population study. 生命最后一周的姑息关怀咨询及相关因素:一项普通人群横断面研究。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-11-08 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241293818
Susanna Böling, Hanna Gyllensten, My Engström, Emma Lundberg, Johan Berlin, Joakim Öhlén
{"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}
引用次数: 0
Using relational ethics to approach equity in palliative care. 在姑息关怀中运用关系伦理来实现公平。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-11-07 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241293820
Kristina A Smith, Kelli Stajduhar
{"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}
引用次数: 0
Fostering timely integrated palliative care in nursing homes through critical companionship: experiences from a Padi-Palli interventional study in France. 通过关键陪伴促进疗养院及时开展综合姑息关怀:法国 Padi-Palli 干预研究的经验。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-11-03 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241293819
Emmanuel Bagaragaza, Benoite Umubyeyi, Danièle Leboul
{"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}
引用次数: 0
Experience or perception: What healthcare providers need when using the Utrecht Symptom Diary-4 Dimensional, a mixed-methods study. 经验或感知:使用乌得勒支症状日记-4 维度时医疗服务提供者的需求,一项混合方法研究。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-10-31 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241281748
Tom Lormans, Everlien de Graaf, Carlo Leget, Saskia Teunissen
{"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}
引用次数: 0
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. 美国跨学科临终关怀临床医生的全国抽样调查:对理由的内容分析,他们是否愿意在病人死亡的整个过程中,通过医疗协助进行临终关怀。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-10-31 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241288881
Todd D Becker, Cindy L Cain, John G Cagle, Joan K Davitt, Nancy Kusmaul, Paul Sacco
{"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}
引用次数: 0
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. 在欧洲六个国家调整、实施和评估针对癌症老年人及其家庭照顾者的导航干预措施:欧洲地平线资助的欧盟 NAVIGATE 项目。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-10-17 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241288873
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
{"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<sup>©</sup>) 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}
引用次数: 0
Understanding end-of-life doula care provision: reporting on the design of a bereavement survey to evaluate doula support. 了解临终朵拉提供的护理:报告设计丧亲调查以评估朵拉支持的情况。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-10-17 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241273489
Kirsten Bashir, Emma Clare, Catherine Pestano, Esther Ramsey-Jones, Erica Borgstrom
{"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}
引用次数: 0
How social workers are positioned and constructed as contributors within national palliative care policies in Sweden: a policy analysis. 社会工作者如何在瑞典国家姑息关怀政策中被定位和构建为贡献者:一项政策分析。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-10-17 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241289601
Axel Ågren, Bodil Holmberg
{"title":"How social workers are positioned and constructed as contributors within national palliative care policies in Sweden: a policy analysis.","authors":"Axel Ågren, Bodil Holmberg","doi":"10.1177/26323524241289601","DOIUrl":"10.1177/26323524241289601","url":null,"abstract":"<p><strong>Background: </strong>Palliative care is expected to acknowledge physical, psychological, emotional, spiritual, and social needs, to which social workers can contribute with expertise on recognizing the importance of social relations and how social inequalities impact on individuals. The social work profession faces challenges in claiming their contributions in the hierarchies of medical professions. Polices play an important role in constructing and positioning responsibilities of professions.</p><p><strong>Objectives: </strong>To analyze how social workers are positioned as contributors to palliative care within national-level policies in Sweden.</p><p><strong>Methods and materials: </strong>A policy analysis was conducted through a constructivist lens. Data were collected from 10 Swedish national-level policy documents on palliative care.</p><p><strong>Results: </strong>Three themes emerged: \"A natural presence conveying special expertise\"; \"Emotional conversational support before and after death\"; and \"Practical support.\" Overall, social workers' contribution was vaguely described and in similar ways as registered nurses.</p><p><strong>Conclusion: </strong>In Swedish policies analyzed, social workers' contributions were difficult to differentiate from that of registered nurses, which may complicate their mutual collaborations and cause confusion for individuals at the end of life and their next of kin. Future research on how different professions are positioned within palliative care is needed to reduce risks of role blurring between professions with similar aims. Moreover, given social workers long history of psychosocial knowledge, meanings of this concept need to be further acknowledged.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241289601"},"PeriodicalIF":2.7,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11503901/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142509742","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}
引用次数: 0
Unlocking compassion: expanding access to palliative care in Saudi Arabia. 释放同情心:在沙特阿拉伯扩大姑息关怀的可及性。
IF 2.7
Palliative Care and Social Practice Pub Date : 2024-10-17 eCollection Date: 2024-01-01 DOI: 10.1177/26323524241290828
Fhaied Almobarak
{"title":"Unlocking compassion: expanding access to palliative care in Saudi Arabia.","authors":"Fhaied Almobarak","doi":"10.1177/26323524241290828","DOIUrl":"10.1177/26323524241290828","url":null,"abstract":"<p><strong>Background: </strong>Palliative care is an essential element of the healthcare system. It has profound benefits for patients with life-limiting illnesses. The Saudi Arabian healthcare system lags in integrating this vital component effectively. Hence, estimating the palliative care needs of the Saudi Arabian population is crucial to understanding the country's demand for palliative care.</p><p><strong>Aim: </strong>To assess the past trends in adult palliative care needs in Saudi Arabia.</p><p><strong>Methods: </strong>The current research used population-based secondary data analysis by employing two palliative care needs estimation methods: the direct or fixed estimation method by Gómez-Batiste and the maximum or maximal method by Murtagh and Rosenwax. The estimated palliative care needs were stratified by gender.</p><p><strong>Results: </strong>An upward trend in the palliative care needs of the Saudi Arabian population is evident through the estimation techniques. The proportion of palliative care needs relative to deaths climaxed at 95% in the observed years. By 2022, the number of people requiring palliative care skyrocketed to 79,725 (fixed method) and 101,623 (maximal method).</p><p><strong>Conclusion: </strong>The need for palliative care in Saudi Arabia substantially rose in the observed years. It is inevitable to bridge the gap between palliative care needs and supply with advanced integration of palliative care services in the national healthcare system.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241290828"},"PeriodicalIF":2.7,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11487501/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476751","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}
引用次数: 0
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