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Public perceptions of artificial intelligence in healthcare: ethical concerns and opportunities for patient-centered care. 公众对医疗保健领域人工智能的看法:伦理问题与以患者为中心的护理机会。
IF 3 1区 哲学 Q1 Nursing Pub Date : 2024-06-22 DOI: 10.1186/s12910-024-01066-4
Kaila Witkowski, Ratna Okhai, Stephen R Neely

Background: In an effort to improve the quality of medical care, the philosophy of patient-centered care has become integrated into almost every aspect of the medical community. Despite its widespread acceptance, among patients and practitioners, there are concerns that rapid advancements in artificial intelligence may threaten elements of patient-centered care, such as personal relationships with care providers and patient-driven choices. This study explores the extent to which patients are confident in and comfortable with the use of these technologies when it comes to their own individual care and identifies areas that may align with or threaten elements of patient-centered care.

Methods: An exploratory, mixed-method approach was used to analyze survey data from 600 US-based adults in the State of Florida. The survey was administered through a leading market research provider (August 10-21, 2023), and responses were collected to be representative of the state's population based on age, gender, race/ethnicity, and political affiliation.

Results: Respondents were more comfortable with the use of AI in health-related tasks that were not associated with doctor-patient relationships, such as scheduling patient appointments or follow-ups (84.2%). Fear of losing the 'human touch' associated with doctors was a common theme within qualitative coding, suggesting a potential conflict between the implementation of AI and patient-centered care. In addition, decision self-efficacy was associated with higher levels of comfort with AI, but there were also concerns about losing decision-making control, workforce changes, and cost concerns. A small majority of participants mentioned that AI could be useful for doctors and lead to more equitable care but only when used within limits.

Conclusion: The application of AI in medical care is rapidly advancing, but oversight, regulation, and guidance addressing critical aspects of patient-centered care are lacking. While there is no evidence that AI will undermine patient-physician relationships at this time, there is concern on the part of patients regarding the application of AI within medical care and specifically as it relates to their interaction with physicians. Medical guidance on incorporating AI while adhering to the principles of patient-centered care is needed to clarify how AI will augment medical care.

背景:为了提高医疗质量,以患者为中心的医疗理念几乎融入了医疗界的方方面面。尽管以患者为中心的护理理念已被患者和从业人员广泛接受,但仍有人担心,人工智能的快速发展可能会威胁到以患者为中心的护理理念,例如与护理提供者的个人关系以及由患者主导的选择。本研究探讨了患者在个人护理方面对使用这些技术的信心和适应程度,并确定了可能符合或威胁以患者为中心的护理要素的领域:我们采用了一种探索性的混合方法来分析来自佛罗里达州 600 名美国成年人的调查数据。调查是通过一家领先的市场调研提供商进行的(2023 年 8 月 10 日至 21 日),根据年龄、性别、种族/民族和政治派别收集了具有代表性的回答:受访者更倾向于在与医患关系无关的健康相关任务中使用人工智能,如安排患者预约或复诊(84.2%)。害怕失去与医生相关的 "人情味 "是定性编码中的一个共同主题,这表明人工智能的实施与以患者为中心的护理之间存在潜在冲突。此外,决策自我效能与人工智能的舒适度较高有关,但也有人担心失去决策控制权、劳动力变化和成本问题。一小部分参与者提到,人工智能对医生有用,可以带来更公平的医疗服务,但必须在一定范围内使用:结论:人工智能在医疗护理中的应用正在迅速发展,但在以患者为中心的护理的关键方面缺乏监督、监管和指导。虽然目前还没有证据表明人工智能会破坏患者与医生之间的关系,但患者对人工智能在医疗护理中的应用,特别是与医生的互动表示担忧。在坚持 "以病人为中心 "的医疗原则的同时,需要对人工智能的应用进行医疗指导,以明确人工智能将如何增强医疗服务。
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引用次数: 0
Exploring moral competence regression: a narrative approach in medical ethics education for medical students. 探索道德能力回归:医学生医学伦理教育的叙事方法。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-06-21 DOI: 10.1186/s12910-024-01073-5
Martin Zielina, Jaromír Škoda, Kateřina Ivanová, Daniel Dostál, Lubica Juríčková, David Anthony Procházka, Barbora Straka, Adam Doležal

Background: Studies from different countries report a stagnation or regression of moral competence in medical students between the first and the last year of their studies, and the value of various educational interventions remains uncertain.

Methods: We used Moral Competence Test (MCT) to measure C-scores of moral competence to determine the change in the MCT C-scores between the first- and the fifth-year medical students from two medical schools in the Czech Republic in the academic year 2022/2023 and to analyze factors associated with the C-scores (observational study). In addition, for the first-year students, we compared the results of the MCT before and after an intervention in medical ethics curriculum (interventional study). We used a cross-sectional and descriptive design for the observational study. Students completed the MCT, consisting of two moral dilemmas (Worker´s Dilemma and Doctor´s Dilemma), the results measured by the C-score, which represents moral competence.

Results: In total, 685 students participated in the observational study. Objective 1: based on the analysis of the C-score, we observed a decrease in moral competence between the first and the fifth-year medical students (p < .001). Objective 2: we did not observe a statistically significant effect of gender (p = .278), or self-rated religiosity (p = .163). Objective 3: in the interventional study, 440 students participated in the pretest and 422 students participated in the posttest. The test of statistical significance found no improvement in students' moral competence after the intervention (p = .253).

Conclusion: Medical students show a regression in moral competence during medical education; it was lower in medical students in their fifth year, compared to the first-year medical students without the effect of gender, or self-rated religiosity. Although educational intervention consisting of multiple tools of medical ethics teaching (PBL, CBL, KMDD and StorED) did not lead to increase in moral competence, the longitudinal effect of such intervention remains to be seen.

背景:来自不同国家的研究报告称,医学生的道德能力在第一年和最后一年之间出现了停滞或倒退,各种教育干预措施的价值仍不确定:方法:我们使用道德能力测验(MCT)来测量道德能力的C-分数,以确定2022/2023学年捷克共和国两所医学院的一年级和五年级医学生之间MCT C-分数的变化,并分析与C-分数相关的因素(观察性研究)。此外,对于一年级学生,我们还比较了医学伦理课程干预前后的 MCT 结果(干预性研究)。在观察性研究中,我们采用了横断面和描述性设计。学生们完成了由两个道德困境(工人困境和医生困境)组成的 MCT,其结果由代表道德能力的 C 分数来衡量:共有 685 名学生参加了观察研究。目标 1:根据对 C 评分的分析,我们观察到一年级和五年级医学生的道德能力有所下降(p 结论:医学生的道德能力有所下降:医学生在医学教育期间的道德能力出现了倒退;与一年级医学生相比,五年级医学生的道德能力较低,且不受性别或自评宗教信仰的影响。虽然由多种医学伦理教学工具(PBL、CBL、KMDD 和 StorED)组成的教育干预并未导致道德能力的提高,但这种干预的纵向效果仍有待观察。
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引用次数: 0
"I feel like I'm walking on eggshells": a qualitative study of moral distress among Chinese emergency doctors. "我感觉像在蛋壳上行走":中国急诊医生道德困扰的定性研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-06-20 DOI: 10.1186/s12910-024-01074-4
Jiajun Liu, Fengling Dai, Qitai Song, Jian Sun, Yao Liu

Background: While the number of emergency patients worldwide continues to increase, emergency doctors often face moral distress. It hampers the overall efficiency of the emergency department, even leading to a reduction in human resources.

Aim: This study explored the experience of moral distress among emergency department doctors and analyzed the causes of its occurrence and the strategies for addressing it.

Method: Purposive and snowball sampling strategies were used in this study. Data were collected through in-depth, semi-structured interviews with 10 doctors working in the emergency department of a tertiary general hospital in southwest China. The interview data underwent processing using the Nvivo 14 software. The data analysis was guided by Colaizzi's phenomenological analysis method.

Study findings: This study yielded five themes: (1) imbalance between Limited Medical Resources and High-Quality Treatment Needs; (2) Ineffective Communication with Patients; (3) Rescuing Patients With no prospect of treatment; (4) Challenges in Sustaining Optimal Treatment Measures; and (5) Strategies for Addressing Moral Distress.

Conclusion: The moral distress faced by emergency doctors stems from various aspects. Clinical management and policymakers can alleviate this distress by enhancing the dissemination of emergency medical knowledge to the general public, improving the social and economic support systems, and strengthening multidisciplinary collaboration and doctors' communication skills.

背景:在全球急诊病人数量不断增加的同时,急诊科医生却经常面临道德困扰。目的:本研究探讨了急诊科医生的道德困扰经历,并分析了其发生的原因和应对策略:本研究采用了有目的抽样和滚雪球抽样策略。通过对中国西南地区一家三级综合医院急诊科的 10 名医生进行半结构式深度访谈收集数据。访谈数据使用 Nvivo 14 软件进行处理。数据分析以科莱兹的现象学分析方法为指导:本研究产生了五个主题:(1)有限的医疗资源与高质量的治疗需求之间的不平衡;(2)与患者的无效沟通;(3)抢救无望的患者;(4)维持最佳治疗措施的挑战;(5)解决道德困扰的策略:急诊医生面临的道德压力来自多个方面。临床管理者和政策制定者可以通过加强向公众普及急诊医学知识、改善社会和经济支持系统、加强多学科合作和医生的沟通技巧来缓解这种困扰。
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引用次数: 0
Telling the truth to patients before hip fracture surgery. 在髋部骨折手术前告诉病人真相。
IF 3 1区 哲学 Q1 Nursing Pub Date : 2024-06-19 DOI: 10.1186/s12910-024-01067-3
Rawan Masarwa, Merav Ben Natan, Yaron Berkovich

Background: Hip fracture repair surgery carries a certain mortality risk, yet evidence suggests that orthopedic surgeons often refrain from discussing this issue with patients prior to surgery.

Aim: This study aims to examine whether orthopedic surgeons raise the issue of one-year post-surgery mortality before hip fracture repair surgery and to explore factors influencing this decision.

Method: The study employs a cross-sectional design, administering validated digital questionnaires to 150 orthopedic surgeons.

Results: A minority of orthopedic surgeons reported always informing patients about the risk of mortality in the year following hip fracture surgery. The main reasons for not discussing this risk were a desire to avoid frightening patients, time constraints, and concerns about undermining patient hope. Orthopedic surgeons reported a medium-high level of perceived self-efficacy, with higher self-efficacy associated with a reduced likelihood of discussing one-year mortality risk. Conversely, older age and holding a specialist status in orthopedic surgery were associated with an increased likelihood of discussing this risk with patients.

Conclusions: These findings suggest a need for interventions to address communication barriers and ensure consistent provision of essential information to patients undergoing hip fracture surgery. Additionally, they highlight the importance of considering individual factors such as self-efficacy, age, and expertise in designing strategies to improve patient-provider communication in orthopedic care settings.

Trial registration: The study doesn`t report the results of a health care intervention.

背景:髋部骨折修复手术具有一定的死亡率风险,但有证据表明,骨科医生在手术前往往不与患者讨论这一问题。目的:本研究旨在探讨骨科医生是否在髋部骨折修复手术前提出术后一年的死亡率问题,并探讨影响这一决定的因素:研究采用横断面设计,向 150 名骨科医生发放经过验证的数字问卷:结果:少数骨科医生表示,他们总是告知患者髋部骨折术后一年内的死亡风险。不讨论这一风险的主要原因是希望避免惊吓患者、时间有限以及担心影响患者的希望。骨科医生的自我效能感处于中等偏上水平,自我效能感越高,讨论一年内死亡风险的可能性就越低。相反,年龄越大、拥有矫形外科专家身份的外科医生与患者讨论这一风险的可能性越大:这些研究结果表明,有必要采取干预措施来解决沟通障碍,并确保为接受髋部骨折手术的患者提供一致的基本信息。此外,这些研究还强调了在设计改善骨科护理环境中患者与医护人员沟通的策略时考虑自我效能、年龄和专业知识等个体因素的重要性:该研究未报告医疗干预的结果。
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引用次数: 0
Concept analysis of conscience-based nursing care: a hybrid approach of Schwartz-Barcott and Kim's hybrid model. 良心护理的概念分析:Schwartz-Barcott 和 Kim 混合模式的混合方法。
IF 3 1区 哲学 Q1 Nursing Pub Date : 2024-06-18 DOI: 10.1186/s12910-024-01070-8
Soheyla Kalantari, Mahnaz Modanloo, Abbas Ebadi, Homeira Khoddam

Background: The nursing profession considers conscience as the foundation and cornerstone of clinical practice, which significantly influences professional decision-making and elevates the level of patient care. However, a precise definition of conscience in the nursing field is lacking, making it challenging to measure. To address this issue, this study employed the hybrid approach of Schwartz Barcott and Kim to analyze the concept of conscience-based nursing care.

Methods: This approach involves a three-phase process; theoretical, fieldwork, and analytical. A systematic literature review was conducted using electronic databases during the first phase to find relevant papers. The content of 42 articles that met the inclusion criteria was extracted to determine the attributes, antecedents, and consequences of consciousness care using thematic analysis. Based on the working definition as a product of this phase, the plan of doing the fieldwork phase was designed. During this phase, data were collected through interviews with nurses all of whom were responsible for patient care in hospitals. In this phase, 5 participants were chosen for in-depth interviewing by purposeful sampling. Data were analyzed using directed content analysis. The findings of the theoretical and fieldwork phases were integrated and the final definition was derived.

Results: The integration of the theoretical and fieldwork phases resulted in identifying four key characteristics of conscience-based nursing care. Firstly, it involves providing professional care with a conscientious approach. Secondly, ethics is at the core of conscience-based care. Thirdly, external spirituality plays a significant role in shaping one's conscience in this context. Finally, conscience-based nursing care is both endogenous and exogenous, with professional commitment being the central focus of care.

Conclusion: Conscience-based nursing care is an essential component of ethical care, which elevates clinical practice to professional care. It requires the integration of individual and social values, influenced by personal beliefs and cultural backgrounds, and supported by professional competence, resources, and a conducive organizational atmosphere in the healthcare field. This approach leads to the provision of responsive care, moral integrity, and individual excellence, ultimately culminating in the development of professionalism in nursing.

背景:护理专业认为良知是临床实践的基础和基石,它对专业决策和提升患者护理水平具有重要影响。然而,护理领域缺乏对 "良知 "的准确定义,因此衡量 "良知 "具有挑战性。为解决这一问题,本研究采用了 Schwartz Barcott 和 Kim 的混合方法来分析基于良知的护理概念:该方法包括三个阶段:理论、实地考察和分析。第一阶段使用电子数据库进行了系统的文献综述,以查找相关论文。对符合纳入标准的 42 篇文章的内容进行提取,利用主题分析法确定良心护理的属性、前因和后果。根据这一阶段得出的工作定义,设计了实地调查阶段的工作计划。在这一阶段,通过对医院中负责病人护理的护士进行访谈来收集数据。在这一阶段,通过有目的的抽样,选择了 5 名参与者进行深入访谈。数据采用定向内容分析法进行分析。综合了理论阶段和实地调查阶段的结果,得出了最终定义:综合理论阶段和实地调查阶段的结果,确定了良心护理的四个主要特征。首先,良心护理涉及以认真负责的态度提供专业护理。第二,伦理是良心护理的核心。第三,在这种情况下,外部精神力量在塑造个人良知方面发挥着重要作用。最后,良心护理既是内源性的,也是外源性的,专业承诺是护理的核心:基于良知的护理是伦理护理的重要组成部分,它将临床实践提升为专业护理。它需要整合个人和社会价值观,受到个人信仰和文化背景的影响,并得到专业能力、资源和医疗领域有利的组织氛围的支持。这种方法可提供有针对性的护理、道德诚信和个人卓越,最终实现护理专业化的发展。
{"title":"Concept analysis of conscience-based nursing care: a hybrid approach of Schwartz-Barcott and Kim's hybrid model.","authors":"Soheyla Kalantari, Mahnaz Modanloo, Abbas Ebadi, Homeira Khoddam","doi":"10.1186/s12910-024-01070-8","DOIUrl":"10.1186/s12910-024-01070-8","url":null,"abstract":"<p><strong>Background: </strong>The nursing profession considers conscience as the foundation and cornerstone of clinical practice, which significantly influences professional decision-making and elevates the level of patient care. However, a precise definition of conscience in the nursing field is lacking, making it challenging to measure. To address this issue, this study employed the hybrid approach of Schwartz Barcott and Kim to analyze the concept of conscience-based nursing care.</p><p><strong>Methods: </strong>This approach involves a three-phase process; theoretical, fieldwork, and analytical. A systematic literature review was conducted using electronic databases during the first phase to find relevant papers. The content of 42 articles that met the inclusion criteria was extracted to determine the attributes, antecedents, and consequences of consciousness care using thematic analysis. Based on the working definition as a product of this phase, the plan of doing the fieldwork phase was designed. During this phase, data were collected through interviews with nurses all of whom were responsible for patient care in hospitals. In this phase, 5 participants were chosen for in-depth interviewing by purposeful sampling. Data were analyzed using directed content analysis. The findings of the theoretical and fieldwork phases were integrated and the final definition was derived.</p><p><strong>Results: </strong>The integration of the theoretical and fieldwork phases resulted in identifying four key characteristics of conscience-based nursing care. Firstly, it involves providing professional care with a conscientious approach. Secondly, ethics is at the core of conscience-based care. Thirdly, external spirituality plays a significant role in shaping one's conscience in this context. Finally, conscience-based nursing care is both endogenous and exogenous, with professional commitment being the central focus of care.</p><p><strong>Conclusion: </strong>Conscience-based nursing care is an essential component of ethical care, which elevates clinical practice to professional care. It requires the integration of individual and social values, influenced by personal beliefs and cultural backgrounds, and supported by professional competence, resources, and a conducive organizational atmosphere in the healthcare field. This approach leads to the provision of responsive care, moral integrity, and individual excellence, ultimately culminating in the development of professionalism in nursing.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-06-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11184846/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141421992","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
For, against, and beyond: healthcare professionals' positions on Medical Assistance in Dying in Spain. 支持、反对和超越:西班牙医护人员对临终医疗协助的立场。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-06-14 DOI: 10.1186/s12910-024-01069-1
Iris Parra Jounou, Rosana Triviño-Caballero, Maite Cruz-Piqueras

Background: In 2021, Spain became the first Southern European country to grant and provide the right to euthanasia and medically assisted suicide. According to the law, the State has the obligation to ensure its access through the health services, which means that healthcare professionals' participation is crucial. Nevertheless, its implementation has been uneven. Our research focuses on understanding possible ethical conflicts that shape different positions towards the practice of Medical Assistance in Dying, on identifying which core ideas may be underlying them, and on suggesting possible reasons for this disparity. The knowledge acquired contributes to understanding its complexity, shedding light into ambivalent profiles and creating strategies to increase their participation.

Methods: We conducted an exploratory qualitative research study by means of semi-structured interviews (1 h) with 25 physicians and nurses from primary care (12), hospital care (7), and palliative care (6), 17 women and 8 men, recruited from Madrid, Catalonia, and Andalusia between March and May 2023. Interviews were recorded, transcribed, and coded in Atlas.ti software by means of thematic and interpretative methods to develop a conceptual model.

Results: We identified four approaches to MAiD: Full Support (FS), Conditioned Support (CS), Conditioned Rejection (CR), and Full Rejection (FR). Full Support and Full Rejection fitted the traditional for and against positions on MAiD. Nevertheless, there was a gray area in between represented by conditioned profiles, whose participation cannot be predicted beforehand. The profiles were differentiated considering their different interpretations of four core ideas: end-of-life care, religion, professional duty/deontology, and patient autonomy. These ideas can intersect, which means that participants' positions are multicausal and complex. Divergences between profiles can be explained by different sources of moral authority used in their moral reasoning and their individualistic or relational approach to autonomy.

Conclusions: There is ultimately no agreement but rather a coexistence of plural moral perspectives regarding MAiD among healthcare professionals. Comprehending which cases are especially difficult to evaluate or which aspects of the law are not easy to interpret will help in developing new strategies, clarifying the legal framework, or guiding moral reasoning and education with the aim of reducing unpredictable non-participations in MAID.

背景:2021 年,西班牙成为南欧第一个赋予并提供安乐死和医学协助自杀权利的国家。根据法律规定,国家有义务确保通过医疗服务实现这一权利,这意味着医疗专业人员的参与至关重要。然而,该法的实施情况并不均衡。我们的研究重点是了解可能存在的伦理冲突,这些冲突形成了对临终医疗协助实践的不同立场,找出这些冲突背后的核心理念,并提出造成这种差异的可能原因。所获得的知识有助于理解其复杂性,揭示矛盾的特征,并制定策略以提高他们的参与度:我们在 2023 年 3 月至 5 月期间,通过半结构化访谈(1 小时)的方式,对来自马德里、加泰罗尼亚和安达卢西亚的 25 名医生和护士进行了探索性定性研究,他们分别来自初级医疗(12 人)、医院医疗(7 人)和姑息治疗(6 人),其中有 17 名女性和 8 名男性。访谈由 Atlas.ti 软件记录、转录和编码,采用主题和解释方法建立概念模型:我们确定了 MAiD 的四种方法:完全支持 (FS)、有条件支持 (CS)、有条件拒绝 (CR) 和完全拒绝 (FR)。完全支持和完全拒绝符合 MAiD 的传统支持和反对立场。然而,在这两者之间还有一个灰色区域,这就是无法事先预测其参与程度的条件描述。根据他们对以下四种核心理念的不同诠释,对他们进行了区分:临终关怀、宗教、职业责任/伦理和病人自主权。这些观点可能相互交叉,这意味着参与者的立场是多因果关系和复杂的。他们在进行道德推理时所使用的道德权威来源不同,以及他们对自主的态度是个人主义还是关系主义,这些都可以解释他们立场之间的分歧:医护专业人员对多重急性损伤和残疾的道德观点最终没有达成一致,而是共存的。了解哪些案例特别难以评估,或哪些方面的法律不容易解释,将有助于制定新的策略、澄清法律框架或指导道德推理和教育,从而减少不可预测的不参与医疗援助的情况。
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引用次数: 0
Ethical regulation of biomedical research in Brazil: a quality improvement initiative. 巴西生物医学研究的伦理监管:质量改进倡议。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-06-10 DOI: 10.1186/s12910-024-01065-5
Daniel Ribeiro Paes de Castro, Camilo Hernan Manchola Castillo, João Paulo Dias Ferreira, João Paulo Alves Oliveira, Tassila Fernandes Kirsten, Paulo Henrique Condeixa de França, Lisiane Silveira Zavalhia, Regina Kuhmmer Notti, Renata Kochhann, Sérgio Luís Amantéa

Background: Q-CEP (Qualificação dos Comitês de Ética em Pesquisa que compõem o Sistema CEP/Conep) is a nationwide project resulting from a partnership between the Brazilian National Research Ethics Commission (Conep), the Ministry of Health and Hospital Moinhos de Vento (HMV). It was developed to consolidate policy for ethical review of research with human beings in all members of the CEP/Conep System, Brazil's national system of institutional review boards. The aim of this study was therefore to report on the experience and results of the Q-CEP project.

Methods: An observational, retrospective study includes data from the Q-CEP, obtained from visits to all the institutional research ethics committees (RECs) in the country. The actions implemented by Q-CEP were part of a two-step process: (i) training visits to each REC; (ii) development of distance learning modules on strategic topics pertaining to research ethics evaluation. The data presented herein cover step one (training visits), defined by Q-CEP as the diagnostic stage of the project. For a country with social and economics inequalities such as Brazil, this is a particularly important stage; an accurate picture of reality is needed to inform planning of quality improvement strategies.

Results: In 2019-2021, Q-CEP visited 832 RECs and trained 11,197 people. This sample covered almost all active RECs in the country; only 4 (0.5%) were not evaluated. Of the 94 items evaluated, 62% did not reach the target of at least 80% compliance and around 1/4 (26%) were below 50% compliance. The diagnostic stage of the process revealed inadequacies on the part of the RECs in their ethical reviews. The analysis of informed consent forms showed compliance in only 131 RECs (15.74%). The description of pending issues made by RECs in their reports was compliant in 19.33% (n = 161). Administrative and operational aspects were also considered inadequate by more than half of the RECs.

Conclusions: Overall, Brazilian RECs showed poor compliance in several aspects of their operation, both in ethics evaluation and in other processes, which justifies additional training. The Q-CEP project is part of a quality improvement policy promoted by the Brazilian Ministry of Health. The data obtained in the diagnostic step of the project have contributed to the qualification and consolidation of one of the world's largest research ethics evaluation systems.

项目背景Q-CEP(Qualificação dos Comités de Ética em Pesquisa que compõem o Sistema CEP/Conep)是巴西国家研究伦理委员会(Conep)、卫生部和Moinhos de Vento医院(HMV)合作开展的一个全国性项目。该项目旨在整合 CEP/Conep 系统(巴西全国机构审查委员会系统)所有成员的人类研究伦理审查政策。因此,本研究旨在报告 Q-CEP 项目的经验和成果:观察性、回顾性研究包括 Q-CEP 的数据,这些数据来自对全国所有机构研究伦理委员会 (REC) 的访问。由 Q-CEP 实施的行动分为两个步骤:(i) 对每个 REC 进行培训访问;(ii) 开发与研究伦理评估相关的战略主题远程学习模块。本文提供的数据涵盖了第一步(培训访问),Q-CEP 将其定义为项目的诊断阶段。对于巴西这样一个存在社会和经济不平等的国家来说,这是一个尤为重要的阶段;需要对现实情况有一个准确的了解,以便为质量改进战略的规划提供依据:2019-2021 年,Q-CEP 共访问了 832 个区域医疗中心,培训了 11,197 人。该样本几乎涵盖了全国所有活跃的区域医疗中心;只有 4 个(0.5%)未接受评估。在 94 个评估项目中,62% 没有达到至少 80% 的达标率目标,约 1/4 (26%)的达标率低于 50%。该过程的诊断阶段显示,区域经济委员会在伦理审查方面存在不足。对知情同意书的分析表明,只有 131 个区域执行委员会(15.74%)符合要求。区域执行委员会在报告中对未决问题的描述符合要求的占 19.33%(n = 161)。半数以上的区域协调中心还认为行政和运作方面存在不足:总体而言,巴西的区域经济委员会在道德评估和其他流程的多个运作方面表现不佳,因此有必要开展更多培训。Q-CEP 项目是巴西卫生部推行的质量改进政策的一部分。在项目诊断步骤中获得的数据为世界上最大的研究伦理评估系统之一的资格认证和巩固做出了贡献。
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引用次数: 0
Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research. 研究人员、科学政策制定者和研究伦理委员会成员对非洲基因组学研究中个人基因研究成果反馈的看法。
IF 2.7 1区 哲学 Q1 Nursing Pub Date : 2024-06-07 DOI: 10.1186/s12910-024-01068-2
Faith Musvipwa, Ambroise Wonkam, Benjamin Berkman, Jantina de Vries

Background: Genetic research can yield information that is unrelated to the study's objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent.

Methods: We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.

Results: A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research.

Discussion: Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination.

背景:基因研究可能会产生与研究目的无关的信息,但这些信息可能会引起研究参与者的临床或个人兴趣。目前有一种新出现的、但有争议的责任,即归还某些基因研究成果,但关于非洲大陆基因组研究人员和其他人的观点,现有证据很少:我们在非洲大陆开展了一项调查,征求研究人员、科学政策制定者和研究伦理委员会成员对非洲基因组研究中个人基因研究成果反馈的看法:共有 110 人参与了调查,收到 51 份完整调查问卷和 59 份不完整调查问卷。数据采用描述性分析法进行总结。总体而言,我们的受访者认为,应将具有临床可操作性的个人基因研究结果反馈给研究参与者,这显然是因为参与者有权了解自己的健康状况,而且这也可能是研究参与得到认可的一种手段。然而,在非洲基因组学研究中,有必要就如何返还个人基因研究结果制定精确的指导意见:讨论:参与者应收到可促进更健康生活方式的信息;只应返还具有临床可操作性的研究结果,参与者应收到与其健康直接相关的所有重要信息。然而,详细的指导原则应告知哪些信息应予以反馈。H3Africa 指导方针规定,一般认为研究人员反馈一般研究结果是良好的做法,但对于是否也应反馈个别基因组研究结果却没有达成共识。决定反馈哪些个别结果(如果有的话)非常具有挑战性,具体情况对于做出适当的决定非常重要。
{"title":"Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.","authors":"Faith Musvipwa, Ambroise Wonkam, Benjamin Berkman, Jantina de Vries","doi":"10.1186/s12910-024-01068-2","DOIUrl":"10.1186/s12910-024-01068-2","url":null,"abstract":"<p><strong>Background: </strong>Genetic research can yield information that is unrelated to the study's objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent.</p><p><strong>Methods: </strong>We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.</p><p><strong>Results: </strong>A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research.</p><p><strong>Discussion: </strong>Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11157929/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141288978","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Determining capacity of people with dementia to take part in research: an electronic survey study of researcher confidence, competence and training needs. 确定痴呆症患者参与研究的能力:关于研究人员信心、能力和培训需求的电子调查研究。
IF 2.7 1区 哲学 Q1 Nursing Pub Date : 2024-05-28 DOI: 10.1186/s12910-024-01056-6
Sarah Griffiths, Victoria Shepherd, Anna Volkmer

Background: Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people with dementia to research projects, to inform the future development of training resources.

Methods: A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents' confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs.

Results: 60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling 'very confident' in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers' confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training.

Conclusions: Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person's ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families.

背景:研究人员必须在某人能够参与研究之前,确定其是否有能力同意参与研究。英格兰和威尔士的《心智能力法案》及相应的《行为准则》为这一过程提供了一些指导,但研究人员发现,当一个人有复杂的认知或交流需求时,很难确定其是否有能力同意。本研究旨在了解招募痴呆症患者参与研究项目的研究人员的经验和意见,为今后培训资源的开发提供参考:通过英格兰和威尔士的社交媒体和研究网络发布了一项混合方法横断面电子调查。调查持续十周,包括开放式和封闭式问题,探讨受访者在征得痴呆症患者同意的情况下确定行为能力的信心、他们对所经历的培训和支持的看法以及对未来培训和支持需求的建议:来自英格兰和威尔士的 60 名受访者完成了调查。尽管 75% 的受访者在确定痴呆症患者同意参与研究的能力方面有过经验,但只有 13% 的受访者认为自己对此 "非常有信心"。对公开回复的定性内容分析产生了六个主题,解释了研究人员在这一领域的信心、能力和未来培训需求:(1) 研究人员的不确定性,(2) 缺乏时间,(3) 平衡信息的复杂性与可及性,(4) 守门人,(5) 现有的促进因素,(6) 未来培训设想:研究人员将受益于与痴呆症患者就同意问题进行对话的专门培训。痴呆症患者的行为能力可能会有波动,尽管有护理人员的支持,但研究人员对于如何确定患者是否有能力理解或领会他们在同意过程中提供的信息几乎没有实际指导。鉴于痴呆症研究中大型复杂试验的发展,为痴呆症患者及其家人工作的研究人员制定具体实用的指导和培训迫在眉睫。
{"title":"Determining capacity of people with dementia to take part in research: an electronic survey study of researcher confidence, competence and training needs.","authors":"Sarah Griffiths, Victoria Shepherd, Anna Volkmer","doi":"10.1186/s12910-024-01056-6","DOIUrl":"10.1186/s12910-024-01056-6","url":null,"abstract":"<p><strong>Background: </strong>Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people with dementia to research projects, to inform the future development of training resources.</p><p><strong>Methods: </strong>A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents' confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs.</p><p><strong>Results: </strong>60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling 'very confident' in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers' confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training.</p><p><strong>Conclusions: </strong>Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person's ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11131177/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141158797","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","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 symbiotic empirical ethics to explore the significance of relationships to clinical ethics: findings from the Reset Ethics research project. 利用共生实证伦理学探索关系对临床伦理学的意义:重置伦理学研究项目的发现。
IF 2.7 1区 哲学 Q1 Nursing Pub Date : 2024-05-28 DOI: 10.1186/s12910-024-01053-9
Caroline A B Redhead, Lucy Frith, Anna Chiumento, Sara Fovargue, Heather Draper

Background: At the beginning of the coronavirus (Covid-19) pandemic, many non-Covid healthcare services were suspended. In April 2020, the Department of Health in England mandated that non-Covid services should resume, alongside the continuing pandemic response. This 'resetting' of healthcare services created a unique context in which it became critical to consider how ethical considerations did (and should) underpin decisions about integrating infection control measures into routine healthcare practices. We draw on data collected as part of the 'NHS Reset Ethics' project, which explored the everyday ethical challenges of resetting England's NHS maternity and paediatrics services during the pandemic.

Methods: Healthcare professionals and members of the public participated in interviews and focus group discussions. The qualitative methods are reported in detail elsewhere. The focus of this article is our use of Frith's symbiotic empirical ethics methodology to work from our empirical findings towards the normative suggestion that clinical ethics should explicitly attend to the importance of relationships in clinical practice. This methodology uses a five-step approach to refine and develop ethical theory based on a naturalist account of ethics that sees practice and theory as symbiotically related.

Results: The Reset project data showed that changed working practices caused ethical challenges for healthcare professionals, and that infection prevention and control measures represented harmful barriers to the experience of receiving and offering care. For healthcare professionals, offering care as part of a relational interaction was an ethically important dimension of healthcare delivery.

Conclusions: Our findings suggest that foregrounding the importance of relationships across a hospital community will better promote the ethically important multi-directional expression of caring between healthcare professionals, patients, and their families. We offer two suggestions for making progress towards such a relational approach. First, that there is a change of emphasis in clinical ethics practice to explicitly acknowledge the importance of the relationships (including with their healthcare team) within which the patient is held. Second, that organisational decision-making should take into account the moral significance afforded to caring relationships by healthcare professionals, and the role such relationships can play in the negotiation of ethical challenges.

背景:冠状病毒(Covid-19)大流行之初,许多非冠状病毒医疗保健服务被暂停。2020 年 4 月,英格兰卫生部规定,在继续开展大流行应对工作的同时,应恢复非 Covid 服务。医疗保健服务的 "重启 "创造了一个独特的环境,在此环境下,考虑如何(以及应该)将伦理因素作为将感染控制措施纳入常规医疗保健实践的决策依据变得至关重要。我们借鉴了 "英国国家医疗服务系统重设伦理 "项目中收集的数据,该项目探讨了大流行期间英国国家医疗服务系统重设产科和儿科服务所面临的日常伦理挑战。有关定性方法的详细报道见其他章节。本文的重点是我们使用弗雷斯的共生经验伦理学方法论,从我们的经验发现出发,提出规范性建议,即临床伦理学应明确关注临床实践中人际关系的重要性。该方法论采用五步方法来完善和发展伦理学理论,其基础是将实践与理论视为共生关系的自然主义伦理学论述:Reset 项目数据显示,工作实践的改变给医护人员带来了伦理挑战,感染预防和控制措施对接受和提供护理的体验构成了有害障碍。对医护人员而言,提供护理是关系互动的一部分,是提供医疗服务的一个重要伦理维度:我们的研究结果表明,强调医院社区关系的重要性将更好地促进医护人员、患者及其家属之间在伦理上重要的多向关怀表达。我们提出了两点建议,以便在采用这种关系方法方面取得进展。第一,改变临床伦理实践的重点,明确承认病人所处关系(包括与医护团队的关系)的重要性。其次,组织决策应考虑到医护专业人员对关爱关系所赋予的道德意义,以及这种关系在应对伦理挑战的谈判中所能发挥的作用。
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引用次数: 0
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