Palliative Care and Social Practice最新文献

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Establishing a common definition for care provided by hospice societies in British Columbia, Canada: a Delphi process. 建立加拿大不列颠哥伦比亚省临终关怀协会提供照护的共同定义:德尔菲过程。
IF 2.7
Palliative Care and Social Practice Pub Date : 2025-02-19 eCollection Date: 2025-01-01 DOI: 10.1177/26323524251320104
Simon Anderson, Rachel Z Carter, Della Roberts, Pablita Thomas, Eman Hassan
{"title":"Establishing a common definition for care provided by hospice societies in British Columbia, Canada: a Delphi process.","authors":"Simon Anderson, Rachel Z Carter, Della Roberts, Pablita Thomas, Eman Hassan","doi":"10.1177/26323524251320104","DOIUrl":"10.1177/26323524251320104","url":null,"abstract":"<p><strong>Background: </strong>Currently, there are over 70 hospice societies spread across urban, rural, and remote communities in BC. However, these societies are not utilized to their fullest potential, primarily due to a lack of awareness of the unique role they play in their communities and common misconceptions about the types of care they provide.</p><p><strong>Objectives: </strong>To develop a consensus-based definition of the care provided by hospice societies in BC, suitable for use across government, healthcare, community organizations, and the public.</p><p><strong>Design: </strong>A modified Delphi approach, guided by an environmental scan, was used to reach consensus on a standard definition of care among a panel of experts.</p><p><strong>Methods: </strong>Following an environmental scan of gray and published literature for attributes and components of care delivered by hospice societies, the expert panel participated in a modified Delphi process of iterative surveys asking questions about content, wording, and structure of the definition. The 56-member panel consisted of hospice society experts, palliative care experts, and people with lived experience. Consensus was defined as 75% agreement across the entire panel (all) and 75% agreement across hospice society representatives (hospice).</p><p><strong>Results: </strong>After six survey rounds, consensus was met on a common definition with three different length versions: full- and medium-length versions (85% all, 85% hospice) and a short version (94% all, 100% hospice). Differing opinions within our expert panel about components of care supported the need for this common definition.</p><p><strong>Conclusion: </strong>Our consensus-based definition provides unprecedented clarity and a shared understanding about the care provided by hospice societies in BC. Hospice societies are expected to benefit from this clarity by maximizing their use and access. It is also expected that this definition will guide advocacy efforts, ultimately contributing to the quality and sustainability of hospice care across the province.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251320104"},"PeriodicalIF":2.7,"publicationDate":"2025-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11837070/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143459835","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
Developing and implementing a nurse-delivered and a web-based dyadic psychoeducational program for people with advanced cancer and their family caregivers: sharing experiences from a three-arm international randomized controlled trial (DIAdIC). 为晚期癌症患者及其家庭照顾者开发和实施护士授课和基于网络的二元心理教育项目:来自三组国际随机对照试验(DIAdIC)的经验分享。
IF 2.7
Palliative Care and Social Practice Pub Date : 2025-02-17 eCollection Date: 2025-01-01 DOI: 10.1177/26323524241310458
Aline De Vleminck, Vincent Van Goethem, Sigrid Dierickx, Orphé Matthys, Kim Beernaert, Mogens Gronvold, Philip Larkin, Monica Guberti, Erica Witkamp, Joanne Reid, Katherine Bristowe, Luc Deliens, Lore Lapeire, Peter Hudson, Joachim Cohen
{"title":"Developing and implementing a nurse-delivered and a web-based dyadic psychoeducational program for people with advanced cancer and their family caregivers: sharing experiences from a three-arm international randomized controlled trial (DIAdIC).","authors":"Aline De Vleminck, Vincent Van Goethem, Sigrid Dierickx, Orphé Matthys, Kim Beernaert, Mogens Gronvold, Philip Larkin, Monica Guberti, Erica Witkamp, Joanne Reid, Katherine Bristowe, Luc Deliens, Lore Lapeire, Peter Hudson, Joachim Cohen","doi":"10.1177/26323524241310458","DOIUrl":"10.1177/26323524241310458","url":null,"abstract":"<p><strong>Background: </strong>Each year millions are diagnosed with cancer, impacting both patients and caregivers. Few interventions target both patients and family caregivers together, despite their shared experiences. While dyadic psychoeducational programs are gaining attention, evidence on developing and implementing these in international trials is limited. The DIAdIC trial faced unique challenges requiring innovative solutions to maintain study integrity.</p><p><strong>Objectives: </strong>To present our experiences with the development and implementation of two dyadic psychoeducational home-based programs, FOCUS+ and iFOCUS in the context of a randomized controlled trial (RCT) in six European countries.</p><p><strong>Design: </strong>A case report detailing our experiences in the development and implementation of two dyadic psychoeducational home-based programs (one face-to-face and one web-based) across multiple countries, highlighting the challenges and mitigating strategies in an international context.</p><p><strong>Methods: </strong>A chronological narrative describing experiences with the development and implementation of iFOCUS and FOCUS+.</p><p><strong>Results: </strong>The FOCUS+ and iFOCUS programs were successfully developed for the European context through rigorous translation and adaptation processes. Despite recruitment challenges including COVID-19 restrictions and administrative hurdles, 431 patient-caregiver dyads were enrolled across 6 European countries. Quantitative and qualitative data assessed the outcomes of FOCUS+ and iFOCUS interventions, including the primary endpoints of emotional functioning and self-efficacy. Fidelity was evaluated using audio recordings, checklists, and user data. Challenges in trial management were addressed with flexible timelines and technical support.</p><p><strong>Conclusion: </strong>The international DIAdIC trial developed and implemented two psychoeducational dyadic programs for patients with advanced cancer and their family caregivers. Based on our experiences we share several insights for future similar studies. These relate to the attention needed for context-specific adaptations when using existing interventions or programs, the translation of human-facilitated programs to standalone eHealth versions, the challenges of adopting a dyadic focus in the study, the pragmatic challenges of conducting an RCT and evaluating implementation and effects, and the technology used for study management.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524241310458"},"PeriodicalIF":2.7,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11833810/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143450504","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
"'We don't want them to have to live out their lives in the hospital": mixed-methods study exploring palliative care needs amongst refugees'. “‘我们不希望他们不得不在医院度过一生’:探索难民缓和医疗需求的混合方法研究”。
IF 2.7
Palliative Care and Social Practice Pub Date : 2025-02-06 eCollection Date: 2025-01-01 DOI: 10.1177/26323524251317539
Priya Gupta, Ashlinder Gill, Michael Panza, Olive Wahoush, Humaira Saeed, Jehan Ara Chagani, Christiana Owoo, Christopher Klinger
{"title":"\"'<i>We don't want them to have to live out their lives in the hospital</i>\": mixed-methods study exploring palliative care needs amongst refugees'.","authors":"Priya Gupta, Ashlinder Gill, Michael Panza, Olive Wahoush, Humaira Saeed, Jehan Ara Chagani, Christiana Owoo, Christopher Klinger","doi":"10.1177/26323524251317539","DOIUrl":"10.1177/26323524251317539","url":null,"abstract":"<p><strong>Background: </strong>The increasing life expectancy and resultant chronic medical comorbidities have resulted in more people requiring palliative care. Unfortunately, palliative care is restricted to marginalized populations, including refugees. In Canada, refugees are only eligible for federal health insurance, which provides basic medical and social coverage until they can obtain provincial health insurance.</p><p><strong>Objectives: </strong>This study explored limitations in providing palliative care to refugees who had either federal or provincial health insurance in two care settings in Ontario, Canada.</p><p><strong>Design: </strong>An explanatory sequential mixed-methods approach guided the review of local administrative data and interview data to understand palliative care delivery for refugees.</p><p><strong>Methods: </strong>Local administrative data from a community health centre and an acute care hospital providing a palliative care approach were collected to review healthcare utilization for refugees with palliative care needs. Interviews from two focus groups with fourteen healthcare providers shared their care experiences in coordinating palliative care for refugees with either federal or provincial health insurance.</p><p><strong>Results: </strong>Refugee patients with palliative care needs appeared to be accessing acute care services frequently to meet their needs over a 5-year period. Due to a lack of citizenship or permanent residency status, many refugees have access to only federal health insurance. Compared to those with routine provincial coverage, federally insured patients were admitted more frequently. Furthermore, healthcare provider experiences revealed that refugees with only federal insurance coverage had significant barriers to accessing community palliative care support, leading to increased reliance on acute care for quality palliative care.</p><p><strong>Conclusion: </strong>This study highlights significant gaps in palliative care access for refugees, especially those with federal health insurance. Equitable access is essential in ensuring that patient-centred, quality palliative care is available to all.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251317539"},"PeriodicalIF":2.7,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11803610/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143383852","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
"Don't leave us behind": a qualitative study exploring the feasibility of a palliative care training program for non-health caregivers in Honduras. “不要让我们掉队”:一项探讨洪都拉斯非保健护理人员姑息治疗培训方案可行性的定性研究。
IF 2.7
Palliative Care and Social Practice Pub Date : 2025-02-06 eCollection Date: 2025-01-01 DOI: 10.1177/26323524251316897
Sheryl Ruiz, Martin Stafström, Leda Parham, Luis Orellana
{"title":"\"Don't leave us behind\": a qualitative study exploring the feasibility of a palliative care training program for non-health caregivers in Honduras.","authors":"Sheryl Ruiz, Martin Stafström, Leda Parham, Luis Orellana","doi":"10.1177/26323524251316897","DOIUrl":"10.1177/26323524251316897","url":null,"abstract":"<p><strong>Background: </strong>Palliative care (PC) can alleviate suffering and improve quality of life. Yet, disparities persist, particularly in Honduras. Training efforts in PC for non-health caregivers have proven to reduce burnout and stress while enhancing the quality of life for both caregivers and patients.</p><p><strong>Purpose: </strong>This study aimed to explore the feasibility of a PC training program for non-health caregivers in Honduras.</p><p><strong>Methods: </strong>This exploratory study utilized latent content analysis within an interpretivist paradigm. Data was collected through individual semi-structured interviews with 25 participants belonging to different key groups: patients diagnosed with cancer, non-health caregivers, PC experts, and health-related decision makers. Interviews were conducted in Honduras' three main cities: Tegucigalpa, San Pedro Sula, and La Ceiba. The sampling technique employed was maximum variation.</p><p><strong>Results: </strong>PC patients and caregivers face significant emotional challenges, often worsened by poverty and resource limitations, which leads to a strain in family dynamics. A lack of education, driven by inadequate healthcare education and policies, contributes to widespread misconceptions about PC. However, progress through various sectors aligned with the same goals proves Honduras is a country with potential. A program with a bottom-up approach, with intersectoral collaboration and training tailored to the needs of caregivers and patients, is urgently needed.</p><p><strong>Conclusion: </strong>It highlights the feasibility, necessity, and potential replicability of implementing a PC training program for non-health caregivers in Honduras, which could offer significant benefits at both individual and national levels. A program that truly accounts for health determinants may help mitigate PC shortages in similar regions. Further research and policy advocacy are essential to empower underserved populations and foster health equity across low- and middle-income settings, to ensure no one is left behind.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251316897"},"PeriodicalIF":2.7,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11803733/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143383853","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
Knowledge, Self-Efficacy, and Correlates in Palliative and End-of-Life Care: Quantitative Insights from Final-Year Nursing and Medical Students in a Mixed-Methods Study. 知识,自我效能感,和相关的姑息治疗和临终关怀:定量见解从最后一年护理和医学生在一项混合方法研究。
IF 2.7
Palliative Care and Social Practice Pub Date : 2025-02-06 eCollection Date: 2025-01-01 DOI: 10.1177/26323524251316901
Germanus Natuhwera, Eve Namisango, Peter Ellis
{"title":"Knowledge, Self-Efficacy, and Correlates in Palliative and End-of-Life Care: Quantitative Insights from Final-Year Nursing and Medical Students in a Mixed-Methods Study.","authors":"Germanus Natuhwera, Eve Namisango, Peter Ellis","doi":"10.1177/26323524251316901","DOIUrl":"10.1177/26323524251316901","url":null,"abstract":"<p><strong>Introduction: </strong>About a decade after the introduction of palliative care teaching for undergraduate nurses and medical students in Uganda, no research has examined students' knowledge and self-efficacy to provide palliative and end-of-life care and their correlates.</p><p><strong>Aims: </strong>To: (1) estimate final-year undergraduate nursing and medical students' knowledge of and self-efficacy to provide palliative and end-of-life care, (2) identify correlates of knowledge and self-efficacy to provide palliative and end-of-life care.</p><p><strong>Design: </strong>A multicentre cross-sectional quantitative study.</p><p><strong>Setting/participants: </strong>Final-year undergraduate medical and nursing students in eight medical and nursing schools in Uganda. Instruments included biodata sheet, the Palliative Care Quiz for Nursing questionnaire and the Palliative Care Self-Efficacy scale. Statistical analyses were performed using STATA version 14.0.</p><p><strong>Results: </strong>The mean age of the participants (<i>n</i> = 466) was 24.45 ± 3.31 years. Participants' knowledge of palliative care scores was low in all domains 'Philosophy and principles of palliative care' 1.46 ± 0.93 (range: 0-4), 'Psychosocial and spiritual care' 0.61 ± 0.73 (range: 0-3) and 'Management of pain and other symptoms' 6.32 ± 1.75 (range: 0-13). Predictors of knowledge were Gender (<i>p</i> = 0.0242), course of study (<i>p</i> = 0.0001) and religion (<i>p</i> = 0.0338). Participants had very low self-efficacy scores in the three domains of the Palliative Care Self-Efficacy scale.</p><p><strong>Conclusion: </strong>Participants generally demonstrated limited knowledge and insufficient self-efficacy in providing palliative and end-of-life care. There is a need to integrate and strengthen practical, pedagogical and experiential teaching, review the palliative care curriculum. Future evaluative, longitudinal and interventional as well as qualitative studies are needed to gain deeper insights into this topic.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251316901"},"PeriodicalIF":2.7,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11803644/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143383856","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
Key challenges in providing assisted dying in Belgium: a qualitative analysis of health professionals' experiences. 在比利时提供协助死亡的主要挑战:卫生专业人员经验的定性分析。
IF 2.7
Palliative Care and Social Practice Pub Date : 2025-02-06 eCollection Date: 2025-01-01 DOI: 10.1177/26323524251318044
Madeleine Archer, Lindy Willmott, Kenneth Chambaere, Luc Deliens, Ben P White
{"title":"Key challenges in providing assisted dying in Belgium: a qualitative analysis of health professionals' experiences.","authors":"Madeleine Archer, Lindy Willmott, Kenneth Chambaere, Luc Deliens, Ben P White","doi":"10.1177/26323524251318044","DOIUrl":"10.1177/26323524251318044","url":null,"abstract":"<p><strong>Background: </strong>Assisted dying or 'euthanasia' has been legal in Belgium since 2002. Extensive research has been conducted which investigates Belgian euthanasia practice, however, the current challenges that health professionals face when providing euthanasia are not well known. This knowledge is important for evaluating the current system, especially in light of recent developments in Belgian euthanasia law and practice including judicial decisions, legislative amendments and research highlighting the complexity of its governing regulatory framework.</p><p><strong>Objectives: </strong>This study investigates the key challenges that health professionals experience when providing euthanasia in Belgium.</p><p><strong>Design: </strong>A qualitative interview study with reflexive thematic analysis.</p><p><strong>Methods: </strong>Twenty interviews were conducted between September 2022 and March 2024 using Microsoft Teams videoconferencing. Eligible participants were physicians and nurses who spoke English or Dutch and who had been involved in the euthanasia assessment of at least two patients in the past year.</p><p><strong>Results: </strong>Four themes were generated: (1) the framing of the euthanasia legislation poses challenges; (2) providing euthanasia can place considerable burdens on health professionals; (3) clashing views about euthanasia can hamper opportunities for balanced discussions and (4) euthanasia and processes relating to euthanasia are not always well-understood.</p><p><strong>Conclusion: </strong>This study highlights the numerous and varied challenges physicians and nurses experience when providing euthanasia in Belgium, even 20 years after its law passing. This study contributes to a wider understanding of universal challenges associated with providing assisted dying and sheds light on issues specific to Belgium. The results provide an opportunity for policymakers to take action to better support providers to manage these challenges, including through a formal review of the legislation and the broader system.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251318044"},"PeriodicalIF":2.7,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11803728/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143383855","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
Individual characteristics influencing the general population's level of knowledge of end-of-life practices: a cross-sectional study. 影响一般人群临终实践知识水平的个体特征:一项横断面研究。
IF 2.7
Palliative Care and Social Practice Pub Date : 2025-01-27 eCollection Date: 2025-01-01 DOI: 10.1177/26323524241312922
Diane Tapp, Gina Bravo, Catherine Filion, Vincent Couture, Sophie Dupéré, Marianne Beaulieu, Audrey Chouinard, Pauline Roos, Marie-Pierre Gagnon, Anouk Bérubé, Ariane Plaisance
{"title":"Individual characteristics influencing the general population's level of knowledge of end-of-life practices: a cross-sectional study.","authors":"Diane Tapp, Gina Bravo, Catherine Filion, Vincent Couture, Sophie Dupéré, Marianne Beaulieu, Audrey Chouinard, Pauline Roos, Marie-Pierre Gagnon, Anouk Bérubé, Ariane Plaisance","doi":"10.1177/26323524241312922","DOIUrl":"10.1177/26323524241312922","url":null,"abstract":"<p><strong>Background: </strong>Informed end-of-life decision-making requires a high level of death literacy. We still know little about the general population's level of knowledge and its determinants.</p><p><strong>Aim: </strong>To assess knowledge of the general population regarding the legal status and definitions of various end-of-life practices, and to compare the level of knowledge according to individual characteristics known to influence death literacy.</p><p><strong>Design: </strong>A self-administered questionnaire featuring two evolving vignettes was used to assess participants' knowledge relating to the legal status of various end-of-life practices and whether these practices are Medical Aid in Dying (MAiD), which is legal in Canada. The questionnaire also assessed participants' individual characteristics such as their experience as caregivers for someone who received palliative care, their perception of health, and their financial situation.</p><p><strong>Setting/participants: </strong>Participants were community-based community-based Canadian adults able to read French or English.</p><p><strong>Results: </strong>In total, 27% of the participants associated the description of care withholding with MAiD, 39% incorrectly associated the description of continuous palliative sedation with MAiD, and 34% incorrectly indicated that the described intervention was illegal. Having cared for someone who received palliative care, at a younger age, a higher level of education, and having participated in advance care planning were associated with better knowledge regarding end-of-life practices.</p><p><strong>Conclusion: </strong>Gaps in knowledge about end-of-life practices exist in the general population, they are associated with different individual characteristics and may limit citizens' capacity to engage in informed end-of-life decision-making. Community-based interventions adapted to different audiences are essential to ensure a quality end-of-life for all.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524241312922"},"PeriodicalIF":2.7,"publicationDate":"2025-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11770702/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143053803","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
Assessing and comparing compassionate communities benefits across cities in diverse cultural contexts: a step toward the identification of the most important ones. 评估和比较不同文化背景下城市中富有同情心的社区的利益:朝着确定最重要的利益迈出了一步。
IF 2.7
Palliative Care and Social Practice Pub Date : 2025-01-26 eCollection Date: 2025-01-01 DOI: 10.1177/26323524251314899
Valentina González-Jaramillo, Alicia Krikorian, Vilma Tripodoro, Margarita Jorge, Sebastián Orellana, Francy López, Maria Clara Vélez, Tatiana Noguera, Silvina Montilla, Sibylle Felber, Sofía C Zambrano, Steffen Eychmüller
{"title":"Assessing and comparing compassionate communities benefits across cities in diverse cultural contexts: a step toward the identification of the most important ones.","authors":"Valentina González-Jaramillo, Alicia Krikorian, Vilma Tripodoro, Margarita Jorge, Sebastián Orellana, Francy López, Maria Clara Vélez, Tatiana Noguera, Silvina Montilla, Sibylle Felber, Sofía C Zambrano, Steffen Eychmüller","doi":"10.1177/26323524251314899","DOIUrl":"10.1177/26323524251314899","url":null,"abstract":"<p><strong>Background: </strong>As Compassionate Communities (CCs) are developing worldwide, there is a growing need to systematically assess if they are having the expected effects on the community. Although having a single strategy would be ideal in terms of standardization and comparison, due to the inherent heterogeneity of CCs, it is not known how feasible this would be.</p><p><strong>Objectives: </strong>To assess the feasibility of creating a general strategy, based on the results of a series of focus groups conducted across three diverse CCs, to guide the evaluation of already existing programs and the development of new ones.</p><p><strong>Design: </strong>Focus groups in three cities, including different types of stakeholders, were conducted to identify potential outcomes (benefits) from CCs, as the base of a general strategy to assess CCs.</p><p><strong>Methods: </strong>We coded the discussions and built a list of the outcomes mentioned. Then, we merged those similar enough into a more general one that encompassed the others. We extracted from reviews all the CCs outcomes that have been measured. We merged the outcomes from the focus groups and the reviews and built a single list.</p><p><strong>Results: </strong>We obtained a final list of 46 outcomes; 44 were reported from the focus groups, and two more were added from the reviews. Of the 44 from the focus groups, 22 (50%) were present in the three CCs, 14(32%) were present in two CCs, and the remaining 8 (18%) were present only in one compassionate community. There were outcomes commonly reported both in the three CCs and in the literature reviews related to training the general community in compassion and end-of-life topics, facilitating the development of community networks, and generating public spaces for social integration.</p><p><strong>Conclusion: </strong>Half of the identified outcomes were reported in the three CCs. This indicates the feasibility of creating a single strategy but also reflects the need to leave room to include other aspects specific to each community according to its context in the assessment.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251314899"},"PeriodicalIF":2.7,"publicationDate":"2025-01-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11770713/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143053702","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
Important factors in municipality-based pediatric palliation from healthcare professionals' perspective: A qualitative study. 从卫生保健专业人员的角度来看,市级儿童姑息治疗的重要因素:一项定性研究。
IF 2.7
Palliative Care and Social Practice Pub Date : 2025-01-26 eCollection Date: 2025-01-01 DOI: 10.1177/26323524241312915
Kristin Skjærseth, Natalie Preminger, May Aasebø Hauken
{"title":"Important factors in municipality-based pediatric palliation from healthcare professionals' perspective: A qualitative study.","authors":"Kristin Skjærseth, Natalie Preminger, May Aasebø Hauken","doi":"10.1177/26323524241312915","DOIUrl":"10.1177/26323524241312915","url":null,"abstract":"<p><strong>Background: </strong>Municipality-based pediatric palliative care (PPC) is recommended to promote the quality of life for the child and family by enabling them to stay at home as much as possible. However, municipality-based PPC presents complex challenges and places significant demands on healthcare professionals. Yet, it remains an underexplored field.</p><p><strong>Objectives: </strong>Semi-structured and individual interviews with 16 healthcare professionals with experiences from PPC were conducted and transcribed. Data was analyzed using systematic text condensation.</p><p><strong>Results: </strong>To increase the knowledge base and understanding of important factors for municipality-based PPC from healthcare professionals' perspective.</p><p><strong>Design: </strong>A qualitative method with an interpretive descriptive design was applied.</p><p><strong>Methods: </strong>The bridging theme \"Establishing a sense of security and predictability for the family and healthcare professionals\" emerged from the analysis. This was elaborated by three main themes: (1) \"A comprehensive approach to the family,\" (2) \"Establishing and maintaining a dedicated, multidisciplinary pediatric palliative team in the municipality,\" and (3) \"Collaboration and communication between involved services.\" Each main theme was further elaborated by subthemes.</p><p><strong>Conclusion: </strong>The importance of establishing security and predictability in municipality-based PPC was emphasized. To achieve this, holistic support for the entire family and ensuring sufficient competence in the municipality seem crucial. Establishing municipality PPC teams is proposed, and the need for early referral, routines for collaboration, and a designated coordinator appear to be key systemic factors.</p><p><strong>Registration and reporting guidelines: </strong>The study is registered in the institutional system for research project (RETTE ID: R2082), and the study is reported according to the COREQ checklist for qualitative studies.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524241312915"},"PeriodicalIF":2.7,"publicationDate":"2025-01-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11770719/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143053800","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
Integration of social work into specialist palliative home service. 将社会工作纳入专科姑息治疗家庭服务。
IF 2.7
Palliative Care and Social Practice Pub Date : 2025-01-26 eCollection Date: 2025-01-01 DOI: 10.1177/26323524241310457
Janice Lee Wartchow, Stefan Bär, Bernd Alt-Epping, Christina Gerlach
{"title":"Integration of social work into specialist palliative home service.","authors":"Janice Lee Wartchow, Stefan Bär, Bernd Alt-Epping, Christina Gerlach","doi":"10.1177/26323524241310457","DOIUrl":"10.1177/26323524241310457","url":null,"abstract":"<p><strong>Background: </strong>The specialist palliative home service (SAPV) federal framework contract for adults, to be enacted in Germany until 2028, does not legally mandate the hiring of a third professional group beyond specialist nurses and physicians, although palliative care embraces the psychosocial dimension and an interprofessional approach.</p><p><strong>Objectives: </strong>This article aims to explore the role of medical staff in integrating social work (SW) into SAPV.</p><p><strong>Design: </strong>Qualitative case study.</p><p><strong>Methods: </strong>The study utilised theoretical and qualitative quota sampling to explore barriers to integrating SW into SAPV-teams, ensuring diverse perspectives. Sequential analysis was applied to uncover collective interpretations, generating and validating interpretive hypotheses directly from the data.</p><p><strong>Results: </strong>Four physicians and four nurses from the SAPV-team based at Heidelberg University Hospital participated. The medical staff's attributions to SW significantly impact its integration into SAPV. Their perception of the SW profession determines the extent and manner of its integration into daily practices. Attributions on SW in SAPV as determined by nurses and physicians were social-medical knowledge, counselling, being a core competence in SAPV and similarities to the profession of psychologists. In the examined case, the integration was effective, and there was a desire for an increased presence of SW because there is still a lack of their working hours, and the medical staff wished for the social workers' presence during home visits.</p><p><strong>Conclusion: </strong>This study highlights that SAPV requires SW to be effective, nonetheless, not being considered in the new federal contract to allocate resources. Possible barriers against the integration of SW within the real-world clinical practice of palliative care should be further investigated in future studies by involving social workers' and healthcare managers' experiences and strategies to understand why the employment of social workers in SAPV is progressing slowly and inform strategies to enhance their integration.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524241310457"},"PeriodicalIF":2.7,"publicationDate":"2025-01-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11770773/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143053806","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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