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The ethical dimension of personal health monitoring in the armed forces: a scoping review. 武装部队中个人健康监测的伦理层面:范围界定审查。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-10 DOI: 10.1186/s12910-024-01086-0
Dave Bovens, Eva van Baarle, Kirsten Ziesemer, Bert Molewijk

Background: Personal Health Monitoring (PHM) has the potential to enhance soldier health outcomes. To promote morally responsible development, implementation, and use of PHM in the armed forces, it is important to be aware of the inherent ethical dimension of PHM. In order to improve the understanding of the ethical dimension, a scoping review of the existing academic literature on the ethical dimension of PHM was conducted.

Methods: Four bibliographical databases (Ovid/Medline, Embase.com, Clarivate Analytics/Web of Science Core Collection, and Elsevier/SCOPUS) were searched for relevant literature from their inception to June 1, 2023. Studies were included if they sufficiently addressed the ethical dimension of PHM and were related to or claimed relevance for the military. After selection and extraction, the data was analysed using a qualitative thematic approach.

Results: A total of 9,071 references were screened. After eligibility screening, 19 articles were included for this review. The review identifies and describes three categories reflecting the ethical dimension of PHM in the military: (1) utilitarian considerations, (2) value-based considerations, and (3) regulatory responsibilities. The four main values that have been identified as being of concern are those of privacy, security, trust, and autonomy.

Conclusions: This review demonstrates that PHM in the armed forces is primarily approached from a utilitarian perspective, with a focus on its benefits, without explicit critical deliberation on PHM's potential moral downsides. Also, the review highlights a significant research gap with a specific lack of empirical studies focussing specifically on the ethical dimension of PHM. Awareness of the inherent ethical dimension of PHM in the military, including value conflicts and how to balance them, can help to contribute to a morally responsible development, implementation, and use of PHM in the armed forces.

背景:个人健康监测(PHM)具有提高士兵健康水平的潜力。为了促进武装部队在道义上负责任地开发、实施和使用 PHM,必须认识到 PHM 固有的伦理层面。为了加深对道德层面的理解,我们对现有的有关 PHM 道德层面的学术文献进行了范围审查:对四个文献数据库(Ovid/Medline、Embase.com、Clarivate Analytics/Web of Science Core Collection 和 Elsevier/SCOPUS)进行了检索,以查找从开始到 2023 年 6 月 1 日的相关文献。如果研究充分论述了公共健康管理的伦理维度,并且与军队相关或声称与军队相关,则将其纳入研究范围。经过筛选和提取后,采用定性主题方法对数据进行了分析:共筛选出 9,071 篇参考文献。经过资格筛选,本综述共纳入 19 篇文章。综述确定并描述了反映军队 PHM 伦理层面的三个类别:(1) 功利考虑,(2) 基于价值的考虑,(3) 监管责任。已确定的四个主要关注价值是隐私、安全、信任和自主:本综述表明,在武装部队中使用 PHM 主要是从功利主义的角度出发,重点关注 PHM 的益处,而没有对 PHM 潜在的道德弊端进行明确的批判性思考。此外,本综述还强调了一个重大的研究空白,即缺乏专门针对 PHM 道德层面的实证研究。认识到军队中 PHM 固有的道德维度,包括价值冲突以及如何平衡这些冲突,有助于促进军队中 PHM 在道德上负责任的发展、实施和使用。
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引用次数: 0
Exploration of clinical ethics consultation in Uganda: a case study of Uganda Cancer Institute. 乌干达临床伦理咨询探索:乌干达癌症研究所案例研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-09 DOI: 10.1186/s12910-024-01085-1
Mayi Mayega Nanyonga, Paul Kutyabami, Olivia Kituuka, Nelson K Sewankambo

Introduction: Globally, healthcare providers (HCPs), hospital administrators, patients and their caretakers are increasingly confronted with complex moral, social, cultural, ethical, and legal dilemmas during clinical care. In high-income countries (HICs), formal and informal clinical ethics support services (CESSs) have been used to resolve bioethical conflicts among HCPs, patients, and their families. There is limited evidence about mechanisms used to resolve these issues as well as experiences and perspectives of the stakeholders that utilize them in most African countries including Uganda.

Methods: This phenomenological qualitative study utilized in-depth interviews (IDIs) and focus group discussions (FGDs) to collect data from Uganda Cancer Institute (UCI) staff, patients, and caretakers who were purposively selected. Data was analyzed deductively and inductively yielding themes and sub-themes that were used to develop a codebook.

Results: The study revealed there was no formal committee or mechanism dedicated to resolving ethical dilemmas at the UCI. Instead, ethical dilemmas were addressed in six forums: individual consultations, tumor board meetings, morbidity and mortality meetings (MMMs), core management meetings, rewards and sanctions committee meetings, and clinical departmental meetings. Participants expressed apprehension regarding the efficacy of these fora due to their non-ethics related agendas as well as members lacking training in medical ethics and the necessary experience to effectively resolve ethical dilemmas.

Conclusion: The fora employed at the UCI to address ethical dilemmas were implicit, involving decisions made through various structures without the guidance of personnel well-versed in medical or clinical ethics. There was a strong recommendation from participants to establish a multidisciplinary clinical ethics committee comprising members who are trained, skilled, and experienced in medical and clinical ethics.

导言:在全球范围内,医疗服务提供者(HCPs)、医院管理者、患者及其护理人员在临床护理过程中越来越多地面临复杂的道德、社会、文化、伦理和法律困境。在高收入国家(HICs),正规和非正规的临床伦理支持服务(CESSs)被用来解决 HCPs、患者及其家属之间的生物伦理冲突。在包括乌干达在内的大多数非洲国家,有关解决这些问题的机制以及利用这些机制的利益相关者的经验和观点的证据十分有限:这项现象学定性研究采用深入访谈(IDI)和焦点小组讨论(FGD)的方法,从乌干达癌症研究所(UCI)的工作人员、患者和护理人员中收集数据。对数据进行了演绎和归纳分析,得出的主题和次主题被用于编制编码手册:研究显示,加州大学洛杉矶分校没有专门解决伦理困境的正式委员会或机制。取而代之的是在六个论坛上解决伦理困境:个人咨询、肿瘤委员会会议、发病率和死亡率会议(MMMs)、核心管理会议、奖惩委员会会议和临床科室会议。由于这些论坛的议程与伦理无关,而且论坛成员缺乏医学伦理培训和有效解决伦理困境的必要经验,与会者对这些论坛的效果表示担忧:美国加州大学洛杉矶分校用于解决伦理困境的论坛是隐性的,涉及在没有精通医学或临床伦理学的人员指导下通过各种结构做出的决定。与会者强烈建议成立一个多学科临床伦理委员会,其成员应接受过医学和临床伦理方面的培训,具备相关技能和经验。
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引用次数: 0
Behind the scenes of research ethics committee oversight: a qualitative research study with committee chairs in the Middle East and North Africa region. 研究伦理委员会监督的幕后:对中东和北非地区委员会主席的定性研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-08 DOI: 10.1186/s12910-024-01083-3
Catherine El Ashkar, Rima Nakkash, Amal Matar, Jihad Makhoul

Background: Research cites shortcomings and challenges facing research ethics committees in many regions across the world including Arab countries. This paper presents findings from qualitative in-depth interviews with research ethics committee (REC) chairs to explore their views on the challenges they face in their work with the oversight of research involving human populations.

Methods: Virtual in-depth interviews were conducted with chairs (n = 11) from both biomedical and/or social-behavioral research ethics committees in six countries, transcribed, coded and subject to thematic analysis for recurring themes.

Results: Two sets of recurring themes impede the work of the committees and pose concerns for the quality of the research applications: (1) procedures and committee level challenges such as heavy workload, variations in member qualification, impeding bureaucratic procedures, member overwork, and intersecting socio-cultural values in the review process; (2) inconsistencies in the researchers' competence in both applied research ethics and research methodology as revealed by their applications.

Conclusions: Narratives of REC chairs are important to shed light on experiences and issues that are not captured in surveys, adding to the body of knowledge with implications for the region, and low- and middle-income countries (LMICs) in other parts of the world. International research collaborations could benefit from the findings.

背景:研究表明,包括阿拉伯国家在内的世界许多地区的研究伦理委员会都存在不足并面临挑战。本文介绍了对研究伦理委员会(REC)主席进行定性深入访谈的结果,以探讨他们对在监督涉及人类群体的研究工作中所面临的挑战的看法:对六个国家的生物医学和/或社会行为研究伦理委员会的主席(n = 11)进行了虚拟深入访谈,对访谈内容进行了转录和编码,并对重复出现的主题进行了专题分析:有两组重复出现的主题阻碍了委员会的工作,并对研究申请的质量造成了担忧:(1) 程序和委员会层面的挑战,如繁重的工作量、成员资质的差异、官僚程序的阻碍、成员过度劳累以及审查过程中相互交织的社会文化价值观;(2) 研究人员在应用研究伦理和研究方法方面的能力不一致,这一点从他们的申请中可以看出:区域经济共同体(REC)主席的叙述非常重要,可以揭示调查中没有反映的经验和问题,丰富知识体系,对该地区和世界其他地区的中低收入国家(LMICs)产生影响。国际研究合作可从调查结果中受益。
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引用次数: 0
The relationship professional commitment and ethics with patient rights: a cross-sectional descriptive study. 职业承诺和职业道德与患者权利的关系:一项横断面描述性研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-08-02 DOI: 10.1186/s12910-024-01084-2
Sara Mohammadnejad, Afsaneh Raiesifar, Zoleikha Karamelahi, Razhan Chehreh

Background: Ethical behavior of health workers is an important part of health services. The aim of the present study was to determine the relationship between ethics and professional commitment and its relationship with the level of respect for patient rights in medical students.

Material & methods: A cross-sectional descriptive study was conducted with the participation of nursing, midwifery and emergency medicine students of Ilam University of Medical Sciences. Sampling was done by stratified random method. The data was collected using Demographic, Professional Commitment, Professional ethics and a researcher made questioner on compliance with patient rights questionnaires.

Results: 300 students were participated. The results showed that the average score of professional ethics in middle school students is high (64.07 ± 8.01), the average score of professional commitment is also high (64.07 ± 8.01) and the score of respect for patient rights is also high (10.74). ± 83.46) was obtained. The professional ethics score it showed a positive and statistically significant relationship with the patient's rights compliance score. only professional commitment is related to gender, but the average of all three variables in different age groups and the type of residence (dormitory, private home, etc.) have meaningful statistical difference.

Conclusion: The findings of the study show that the level of ethics and professional commitment and respect for patient rights among nursing, midwifery and emergency medicine students was good. It is hoped that the results of this research will provide a basis for better planning for the development of knowledge and respect for patient rights among students.

背景:医务工作者的道德行为是医疗服务的重要组成部分。本研究旨在确定医科学生的职业道德与职业承诺之间的关系,及其与尊重患者权利程度之间的关系:本研究对伊拉姆医科大学护理、助产和急诊医学专业的学生进行了横断面描述性研究。抽样采用分层随机抽样法。使用人口统计学、职业承诺、职业道德和研究人员制作的患者权利遵守情况调查问卷收集数据:结果:300 名学生参与了调查。结果显示,中学生的职业道德平均得分较高(64.07 ± 8.01),职业承诺平均得分也较高(64.07 ± 8.01),尊重患者权利得分也较高(10.74)。在职业道德方面的平均得分(± 83.46)分。只有职业承诺与性别有关,但不同年龄组和居住地类型(宿舍、私人住宅等)的三个变量的平均值有有意义的统计学差异:研究结果表明,护理学、助产学和急诊医学专业学生的道德水平、职业承诺和尊重病人权利的情况良好。希望本研究的结果能为更好地规划学生对患者权利的了解和尊重提供依据。
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引用次数: 0
Ethics, design, and implementation criteria of digital assistive technologies for people with dementia from a multiple stakeholder perspective: a qualitative study 从多方利益相关者的角度看痴呆症患者数字辅助技术的伦理、设计和实施标准:一项定性研究
IF 2.7 1区 哲学 Q1 ETHICS Pub Date : 2024-07-27 DOI: 10.1186/s12910-024-01080-6
Stefanie Köhler, Julia Perry, Olga A. Biernetzky, Thomas Kirste, Stefan J. Teipel
Dementia impairs the ability of people with dementia to be autonomous and independent. They need support from third parties, who should ideally respect their autonomy and independence as much as possible. Supporting people with dementia can be very burdensome for caregivers and numbers of patients increase while numbers of potential caregivers decline. Digital assistive technologies (DATs) that directly support patients or their caregivers may help bridging the increasing gap between need of support and available resources. DATs have the potential to preserve the autonomy and independence of people with dementia and promote their abilities, if they are properly designed in close interaction with future users. In our study, we focused on ethical concerns, technological requirements, and implementation criteria for DAT in general and specifically to support outdoor mobility of people with dementia. We applied a qualitative approach and conducted a World Café (2 tables, n = 7) and an online focus group (n = 6) with people with dementia, relatives, healthcare professionals, scientists, ethics experts, and experts for digitally-assisted medical care. We descriptively analyzed the data using a content analysis approach. The participants reported technological (e.g., lack of Wi-Fi), financial (e.g., expensive devices or lack of budget for DATs), political (e.g., legal hurdles such as the European Medical Device Law or data protection regulations) as well as user-related hurdles (e.g., lack of digital competence) for the implementation of DAT in dementia care. Among the issues discussed were the importance of autonomy, independence, safety, privacy, and questions of decision making capacity in DAT’s use. Participants identified opportunities and benefits in self-learning, situation-aware DATs and wished for dementia-friendly communities. They emphasized the value of personal interaction that should not be replaced, but rather supported by DAT. The results revealed multiple hurdles and ethical concerns for DAT use and provided recommendations for designing and implementing DATs. Further investigations are needed on the impact of DAT on personal interactions in caregiving and the role of DAT in dementia-friendly communities.
痴呆症削弱了痴呆症患者的自主和独立能力。他们需要第三方的支持,而第三方最好应尽可能尊重他们的自主性和独立性。为痴呆症患者提供支持可能会给照顾者带来很大负担,患者人数增加的同时,潜在的照顾者人数却在减少。直接支持患者或其护理者的数字辅助技术(DATs)可能有助于缩小支持需求与可用资源之间日益扩大的差距。如果在与未来用户密切互动的基础上进行适当设计,数字辅助技术有可能保护痴呆症患者的自主性和独立性,并提高他们的能力。在我们的研究中,我们重点关注了一般 DAT 的伦理问题、技术要求和实施标准,特别是支持痴呆症患者户外行动的标准。我们采用定性方法,与痴呆症患者、亲属、医护人员、科学家、伦理专家和数字辅助医疗专家开展了 "世界咖啡馆"(2 张桌子,n = 7)和在线焦点小组(n = 6)活动。我们采用内容分析法对数据进行了描述性分析。参与者报告了在痴呆症护理中实施 DAT 所面临的技术(如缺乏 Wi-Fi)、资金(如昂贵的设备或缺乏 DAT 的预算)、政治(如法律障碍,如欧洲医疗设备法或数据保护法规)以及与用户相关的障碍(如缺乏数字能力)。讨论的问题包括自主性、独立性、安全性、隐私性的重要性,以及 DAT 使用中的决策能力问题。与会者指出了自学型、情境感知型 DAT 的机遇和益处,并希望建立痴呆症友好型社区。他们强调了人际交往的价值,认为 DAT 不应该取代人际交往,而应该为人际交往提供支持。研究结果揭示了使用数据采集器的多重障碍和伦理问题,并为数据采集器的设计和实施提供了建议。还需要进一步调查 DAT 对护理过程中个人互动的影响以及 DAT 在痴呆症友好社区中的作用。
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引用次数: 0
Acceptance of euthanasia by students of selected study disciplines at universities in Lublin, Poland. 波兰卢布林大学部分专业学生对安乐死的接受程度。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-07-26 DOI: 10.1186/s12910-024-01071-7
Stanisław Lachowski, Bogusława Lachowska, Magdalena Florek-Łuszczki

Background: In the context of discussions between supporters and opponents of euthanasia, and legal regulations regarding this type of practices, the attitude of young people with respect to this phenomenon is a very interesting issue. According to Polish law, euthanasia is prohibited. The aim of this study was to determine the degree of acceptance of euthanasia among students from Polish universities across three different fields of study: psychology, medicine, and economic-technical disciplines, and to identify the factors associated with the acceptance of this phenomenon.

Methods: The study included 627 persons studying in Lublin, Poland: medicine (280), psychology (170), and economic-technical studies (177). The study was conducted as a survey using questionnaire containing items concerning students' attitudes towards euthanasia. The analysis of the collected data was conducted using the SPSS software (version 29) with the following methods: Chi2, Student's t-test, Phi test, Cramer's V test, Kolmogorov-Smirnov test, one-way ANOVA with Dunnett's post hoc test, linear regression analysis, and categorical regression analysis using optimal scaling (CATREG).

Results: Nearly half of the students participating in the study (45.9%) rated the practice of euthanasia as decidedly negative. The highest number of strongly negative evaluations was found among psychology students, and the least among students of economic-technical disciplines. The level of acceptance of euthanasia is significantly associated with religious involvement and studying psychology. Being religious and being a psychology student both contribute to lower acceptance of euthanasia and a lower willingness to consent to euthanasia. Consent to euthanasia is more commonly declared by individuals with experience of living with elderly people.

Conclusions: Although nearly half of the respondents expressed a negative attitude towards euthanasia, considering the secularization process among Polish youth, it can be assumed that the level of acceptance of euthanasia in this social group will increase. The lower level of acceptance of euthanasia among psychology and medical students compared to students of economic-technical disciplines suggests that the curricula of these studies present alternative solutions to the problems of terminally ill patients other than euthanasia.

背景:在安乐死的支持者和反对者之间的讨论以及有关此类做法的法律规定的背景下,年轻人对这一现象的态度是一个非常有趣的问题。波兰法律禁止安乐死。本研究旨在确定波兰大学心理学、医学和经济技术学科等三个不同专业的学生对安乐死的接受程度,并找出与接受这一现象相关的因素:研究对象包括在波兰卢布林学习的 627 名学生:医学(280 人)、心理学(170 人)和经济技术学(177 人)。研究以问卷调查的形式进行,问卷中包含有关学生对安乐死态度的项目。收集到的数据使用 SPSS 软件(29 版)进行分析,分析方法如下:采用以下方法对收集到的数据进行了分析:Chi2、学生 t 检验、Phi 检验、Cramer's V 检验、Kolmogorov-Smirnov 检验、单因素方差分析与 Dunnett 后检验、线性回归分析和使用最佳比例的分类回归分析 (CATREG):参与研究的学生中有近一半(45.9%)对安乐死的做法给予了坚决否定的评价。心理学专业学生的强烈负面评价最多,而经济技术专业学生的强烈负面评价最少。安乐死的接受程度与宗教信仰和心理学专业有很大关系。宗教信仰和心理学专业学生都会降低对安乐死的接受程度,也会降低同意安乐死的意愿。有与老人共同生活经验的人更常宣布同意安乐死:尽管近一半的受访者对安乐死持否定态度,但考虑到波兰青年的世俗化进程,可以认为这一社会群体对安乐死的接受程度将会提高。与经济技术专业的学生相比,心理学和医学专业的学生对安乐死的接受程度较低,这表明这些专业的课程为临终病人问题提供了安乐死之外的其他解决方案。
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引用次数: 0
The body as an obstacle and the "other". How patients with chronic inflammatory bowel diseases view their body, self and the good life. 身体是障碍和 "他人"。慢性炎症性肠病患者如何看待自己的身体、自我和美好生活。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-07-24 DOI: 10.1186/s12910-024-01076-2
Anke Erdmann, Christoph Rehmann-Sutter, Florian Schrinner, Claudia Bozzaro

Background: Treatment of chronic inflammatory bowel disease (IBD) aims to improve patients' quality of life and the extent of treatment success is measured via patient reported outcomes (PROs). However, questionnaires used to collect PROs often include scales that are not specific to IBDs. Improving these scales requires a deeper understanding of patients' lived experience. With this study we give first insights and develop hypotheses on how patients with IBDs experience their body and self and how they adjust their life plans in the context of precision medicine (PM). The guiding question is to understand what they need to achieve a good life, while facing their disease.

Methods: We developed a conception of the "good life" that draws on Philippa Foot's "naturalized" approach and distinguishes six different dimensions that are relevant for a good life. This conception guided us as we conducted 10 qualitative interviews with patients suffering from IBD who were in precision medicine clinical research settings. The interviews aimed to gain insights for answering our research question: How do body experiences affect the good life of patients with IBD? We analyzed the interviews with interpretative phenomenological analysis (IPA).

Results: Five group experiential themes emerged: (i) Life options and plans, (ii) other people's responses, (iii) strategies to deal with others' responses, (iv) perception of the body and self, and (v) perception of life as good despite suffering. We report here on three of them (i, iv and v), which are primarily relevant for evaluating the outcomes of PM care. Whereas with "life options and plans (i)," our study predominantly confirmed previous research, with "perception of the body and self (iv)," we found that some of the patients changed their relationship to their body and themselves. They perceived the body or the disease as the "other" and their self appears divorced from their own body. Although this might be an avoidance strategy patients use to assign responsibility for their condition and its "disgusting" symptoms to the "other," it is important to include it in patient reported outcome (PRO) assessments.

Conclusions: We conclude with the insight that the multi-dimensional approach based on Foot's concept of a good life is well-suited as a basis for investigating the quality of life of people with IBD. Interviews based on this concept produced results that go beyond the understanding of health-related quality of life (HRQoL). Additionally, we offer some considerations about patients' opportunities for achieving a good life and suggestions for further developing patient reported outcome scales.

背景:慢性炎症性肠病(IBD)的治疗旨在改善患者的生活质量,治疗成功的程度通过患者报告结果(PROs)来衡量。然而,用于收集 PROs 的调查问卷通常包含一些并非专门针对 IBD 的量表。改进这些量表需要更深入地了解患者的生活经历。通过这项研究,我们首次深入了解了 IBD 患者如何体验自己的身体和自我,以及他们如何在精准医疗(PM)的背景下调整自己的生活计划,并提出了相关假设。指导性问题是了解他们在面对疾病的同时,需要什么来实现美好生活:我们借鉴 Philippa Foot 的 "自然化 "方法,提出了 "美好生活 "的概念,并区分了与美好生活相关的六个不同维度。在这一概念的指导下,我们对精准医学临床研究环境中的 IBD 患者进行了 10 次定性访谈。访谈的目的是为了回答我们的研究问题:身体体验如何影响 IBD 患者的美好生活?我们采用解释现象学分析法(IPA)对访谈进行了分析:结果:出现了五个群体体验主题:(i) 生活选择和计划,(ii) 其他人的反应,(iii) 应对他人反应的策略,(iv) 对身体和自我的感知,以及 (v) 尽管遭受痛苦,但仍认为生活是美好的。我们在此报告其中的三个方面(i、iv 和 v),它们主要与评估 PM 护理的结果相关。在 "生活选择和计划(i)"方面,我们的研究主要证实了以往的研究,而在 "对身体和自我的感知(iv)"方面,我们发现一些患者改变了他们与身体和自身的关系。他们将身体或疾病视为 "他者",自我似乎与自己的身体相分离。虽然这可能是患者用来将自身病情及其 "恶心 "症状的责任归咎于 "他人 "的一种回避策略,但将其纳入患者报告结果(PRO)评估非常重要:我们的结论是,基于 Foot 美好生活概念的多维方法非常适合作为调查 IBD 患者生活质量的基础。基于这一概念的访谈结果超越了对健康相关生活质量(HRQoL)的理解。此外,我们还就患者实现美好生活的机会提出了一些思考,并就进一步开发患者报告结果量表提出了建议。
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引用次数: 0
'It's not making a decision, it's prompting the discussions': a qualitative study exploring stakeholders' views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE). 这不是做决定,而是引发讨论":一项定性研究,探讨利益相关者对预先研究规划(CONSULT-ADVANCE)的可接受性和可行性的看法。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-07-23 DOI: 10.1186/s12910-024-01081-5
Victoria Shepherd, Kerenza Hood, Fiona Wood

Background: Health and care research involving people who lack capacity to consent requires an alternative decision maker to decide whether they participate or not based on their 'presumed will'. However, this is often unknown. Advance research planning (ARP) is a process for people who anticipate periods of impaired capacity to prospectively express their preferences about research participation and identify who they wish to be involved in future decisions. This may help to extend individuals' autonomy by ensuring that proxy decisions are based on their actual wishes. This qualitative study aimed to explore stakeholders' views about the acceptability and feasibility of ARP and identify barriers and facilitators to its implementation in the UK.

Methods: We conducted semi-structured interviews with 27 researchers, practitioners, and members of the public who had participated in a preceding survey. Interviews were conducted remotely between April and November 2023. Data were analysed thematically.

Results: Participants were supportive of the concept of ARP, with differing amounts of support for the range of possible ARP activities depending on the context. Six main themes were identified: (1) Planting a seed - creating opportunities to initiate/engage with ARP; (2) A missing part of the puzzle - how preferences expressed through ARP could help inform decisions; (3) Finding the sweet spot - optimising the timing of ARP; (4) More than a piece of paper - finding the best mode for recording preferences; (5) Keeping the door open to future opportunities - minimising the risk of unintended consequences; and (6) Navigating with a compass - principles underpinning ARP to ensure safeguarding and help address inequalities. Participants also identified a number of implementation challenges, and proposed facilitative strategies that might overcome them which included embedding advance research planning in existing future planning processes and research-focused activities.

Conclusions: This study provides a routemap to implementing ARP in the UK to enable people anticipating impaired capacity to express their preferences about research, thus ensuring greater opportunities for inclusion of this under-served group, and addressing the decisional burden experienced by some family members acting as proxies. Development of interventions and guidance to support ARP is needed, with a focus on ensuring accessibility.

背景:涉及缺乏同意能力者的健康和护理研究需要有一个替代决策者,根据他们的 "推定意愿 "决定是否参与。然而,这往往是未知的。预先研究规划 (ARP) 是一种程序,让预计能力受损的人预先表达他们对参与研究的偏好,并确定他们希望谁参与未来的决策。通过确保代理决定基于个人的实际意愿,这可能有助于扩大个人的自主权。本定性研究旨在探讨利益相关者对 ARP 可接受性和可行性的看法,并确定在英国实施 ARP 的障碍和促进因素:我们对 27 名研究人员、从业人员以及参与过之前调查的公众进行了半结构化访谈。访谈于 2023 年 4 月至 11 月间远程进行。对数据进行了专题分析:结果:参与者对 ARP 概念表示支持,但对 ARP 可能开展的一系列活动的支持程度因情况而异。确定了六大主题:(1) 播下一粒种子--创造机会启动/参与评估与研究计划;(2) 拼图中缺失的部分--通过评估与研究计划表达的偏好如何有助于为决策提供信息;(3) 找到最佳点--优化评估与研究计划的时机;(4) 不仅仅是一张纸--找到记录偏好的最佳模式;(5) 为未来的机会敞开大门--最大限度地降低意外后果的风险;(6) 用指南针导航--评估与研究计划的基本原则,以确保安全并帮助解决不平等问题。与会者还确定了一些实施挑战,并提出了可能克服这些挑战的促进战略,其中包括将预先研究规划纳入现有的未来规划流程和以研究为重点的活动:本研究提供了在英国实施预先研究规划的路线图,使预期能力受损的人能够表达他们对研究的偏好,从而确保这一服务不足的群体有更多机会参与其中,并解决一些作为代理人的家庭成员所经历的决策负担。需要制定支持 ARP 的干预措施和指南,重点是确保无障碍性。
{"title":"'It's not making a decision, it's prompting the discussions': a qualitative study exploring stakeholders' views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE).","authors":"Victoria Shepherd, Kerenza Hood, Fiona Wood","doi":"10.1186/s12910-024-01081-5","DOIUrl":"10.1186/s12910-024-01081-5","url":null,"abstract":"<p><strong>Background: </strong>Health and care research involving people who lack capacity to consent requires an alternative decision maker to decide whether they participate or not based on their 'presumed will'. However, this is often unknown. Advance research planning (ARP) is a process for people who anticipate periods of impaired capacity to prospectively express their preferences about research participation and identify who they wish to be involved in future decisions. This may help to extend individuals' autonomy by ensuring that proxy decisions are based on their actual wishes. This qualitative study aimed to explore stakeholders' views about the acceptability and feasibility of ARP and identify barriers and facilitators to its implementation in the UK.</p><p><strong>Methods: </strong>We conducted semi-structured interviews with 27 researchers, practitioners, and members of the public who had participated in a preceding survey. Interviews were conducted remotely between April and November 2023. Data were analysed thematically.</p><p><strong>Results: </strong>Participants were supportive of the concept of ARP, with differing amounts of support for the range of possible ARP activities depending on the context. Six main themes were identified: (1) Planting a seed - creating opportunities to initiate/engage with ARP; (2) A missing part of the puzzle - how preferences expressed through ARP could help inform decisions; (3) Finding the sweet spot - optimising the timing of ARP; (4) More than a piece of paper - finding the best mode for recording preferences; (5) Keeping the door open to future opportunities - minimising the risk of unintended consequences; and (6) Navigating with a compass - principles underpinning ARP to ensure safeguarding and help address inequalities. Participants also identified a number of implementation challenges, and proposed facilitative strategies that might overcome them which included embedding advance research planning in existing future planning processes and research-focused activities.</p><p><strong>Conclusions: </strong>This study provides a routemap to implementing ARP in the UK to enable people anticipating impaired capacity to express their preferences about research, thus ensuring greater opportunities for inclusion of this under-served group, and addressing the decisional burden experienced by some family members acting as proxies. Development of interventions and guidance to support ARP is needed, with a focus on ensuring accessibility.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"80"},"PeriodicalIF":3.0,"publicationDate":"2024-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11265470/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141749825","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
Evaluation of an interactive education workshop on hospital pharmacists' ethical reasoning: an observational study. 医院药剂师伦理推理互动教育研讨会评估:一项观察研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-07-23 DOI: 10.1186/s12910-024-01082-4
Nallini McCleery, Adam La Caze, Karl Winckel, H Laetitia Hattingh

Background: Pharmacists are often faced with scenarios in practice that require application of ethical reasoning and decision-making skills. There is limited research on the ethical decision-making processes of hospital pharmacists. Pharmacists who are compassionate and put the interests of their patients first are thought to positively impact on patient care, but there are often complex health-care system pressures in the hospital setting that cause pharmacists to behave in ways that may conflict with professional values and behaviours. This multisite study aimed to evaluate an interactive education workshop on hospital pharmacists' ethical reasoning skills and explore the need for ongoing training and support.

Methods: This mixed-methods study was carried out across two health services including three hospitals. It incorporated a pre-workshop survey, a feedback survey immediately post-workshop and a third survey four weeks after the workshop. Semi-structured interviews were conducted with hospital pharmacists at least four weeks after the ethics workshop.

Results: In total, 32 participants completed the pre-workshop survey, nominating peers/colleagues as the most common source of support they would consult to inform ethical decision-making (17/118 sources of support). Almost all (n = 31/33; 94%) strongly agreed/agreed that the education session provided them with ethical reasoning skills and a process/framework which they could use when faced with an ethical issue. Pre- and post-survey responses showed increased self-confidence in identifying the regulatory frameworks applicable to pharmacy privacy requirements (p = 0.011) and ethical issues applicable to pharmacy privacy requirements (p = 0.002), as well as applying ethical reasoning to scenarios that involve pharmacy privacy dilemmas/issues (p = 0.004). Participants' self confidence in knowing where to find support when faced with clinical and non-clinical ethics questions was improved (p = 0.002 and p = 0.003 respectively). Participants supported the introduction of quarterly ethics cafes after the workshop, compared to before the workshop (p = 0.001).

Conclusion: Hospital pharmacists rely on discussions with colleagues to brainstorm how to address ethical issues. This study showed that a targeted interactive education workshop facilitated familiarity with ethics resources and decision-making processes. It also demonstrated that this approach could be used to enhance hospital pharmacists' readiness, confidence, and capabilities to recognise and respond to challenging ethical issues.

背景:药剂师在实践中经常会遇到需要运用道德推理和决策技能的情况。有关医院药剂师伦理决策过程的研究十分有限。富有同情心并将患者利益放在首位的药剂师被认为会对患者护理产生积极影响,但医院环境中往往存在复杂的医疗保健系统压力,导致药剂师的行为可能与专业价值观和行为相冲突。这项多地点研究旨在评估医院药剂师道德推理技能互动教育研讨会,并探讨持续培训和支持的必要性:这项混合方法研究在两家医疗服务机构(包括三家医院)进行。其中包括一项工作坊前调查、一项工作坊后即时反馈调查和一项工作坊四周后的第三次调查。在伦理研讨会结束至少四周后,对医院药剂师进行了半结构式访谈:共有 32 名学员完成了工作坊前的问卷调查,他们认为同行/同事是他们在做出伦理决策时最常咨询的支持来源(17/118 支持来源)。几乎所有学员(n = 31/33;94%)都非常同意/同意教育课程为他们提供了伦理推理技能以及在遇到伦理问题时可以使用的程序/框架。会前和会后调查显示,参与者在识别适用于药房隐私要求的监管框架(p = 0.011)和适用于药房隐私要求的伦理问题(p = 0.002),以及将伦理推理应用于涉及药房隐私困境/问题的情景(p = 0.004)方面的自信心有所增强。参与者在面对临床和非临床伦理问题时知道从哪里寻求支持的自信心得到了提高(分别为 p = 0.002 和 p = 0.003)。与研讨会前相比,与会者支持在研讨会后引入季度伦理咖啡馆(p = 0.001):医院药剂师依赖与同事的讨论来集思广益解决伦理问题。本研究表明,有针对性的互动教育研讨会有助于熟悉伦理资源和决策流程。研究还表明,这种方法可用于提高医院药剂师的准备度、信心以及识别和应对具有挑战性的伦理问题的能力。
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引用次数: 0
Ethical considerations during Mpox Outbreak: a scoping review. 麻疹疫情爆发期间的伦理考虑因素:范围审查。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-07-22 DOI: 10.1186/s12910-024-01078-0
Fatma Badr El Dine, Assem Gebreal, Dalia Samhouri, Haimanot Estifanos, Islam Kourampi, Hasnaa Abdelrhem, Hamed Abdelma'aboud Mostafa, Ahmed Gamal Elshaar, Tarun Kumar Suvvari, Ramy Mohamed Ghazy

Background: Historically, epidemics have been accompanied by the concurrent emergence of stigma, prejudice, and xenophobia. This scoping review aimed to describe and map published research targeting ethical values concerning monkeypox (mpox). In addition, it aimed to understand the research gaps related to mpox associated stigma.

Methods: We comprehensively searched databases (PubMed Central, PubMed Medline, Scopus, Web of Science, Ovid, and Google Scholar) to identify published literature concerning mpox ethical issues and stigma from May 6, 2022, to February 15, 2023. The key search terms used were "monkeypox", "ethics", "morals", "social stigma", "privacy", "confidentiality", "secrecy", "privilege", "egoism", and "metaethics". This scoping review followed the framework proposed by Arksey and O'Malley in 2005 and was further improved by the recommendations of Levac et al. in 2010.

Results: The search strategies employed in the scoping review yielded a total of 454 articles. We analyzed the sources, types, and topics of the retrieved articles/studies. The authors were able to identify 32 studies that met inclusion criteria. Six of the 32 included studies were primary research. The study revealed that the ongoing mpox outbreak is contending with a notable surge in misinformation and societal stigma. It highlights the adverse impacts of stigma and ethical concerns associated with mpox, which can negatively affect people with the disease.

Conclusion: The study's findings underscore the imperative need to enhance public awareness; involve civil society; and promote collaboration among policymakers, medical communities, and social media platforms. These collective endeavors are crucial for mitigating stigma, averting human-to-human transmission, tackling racism, and dispelling misconceptions associated with the outbreak.

背景:从历史上看,流行病的发生都伴随着污名化、偏见和仇外心理的同时出现。本综述旨在描述和描绘已发表的针对猴痘伦理价值的研究。此外,它还旨在了解与猴痘相关的耻辱感方面的研究空白:我们对数据库(PubMed Central、PubMed Medline、Scopus、Web of Science、Ovid 和 Google Scholar)进行了全面检索,以确定 2022 年 5 月 6 日至 2023 年 2 月 15 日期间发表的有关猴痘伦理问题和耻辱感的文献。使用的关键检索词包括 "猴痘"、"伦理"、"道德"、"社会污名"、"隐私"、"保密"、"机密"、"特权"、"利己主义 "和 "元伦理学"。此次范围界定研究遵循了 Arksey 和 O'Malley 于 2005 年提出的框架,并根据 Levac 等人于 2010 年提出的建议作了进一步改进:此次范围界定审查采用的搜索策略共搜索到 454 篇文章。我们对检索到的文章/研究的来源、类型和主题进行了分析。作者确定了 32 项符合纳入标准的研究。在 32 项纳入的研究中,有 6 项是初级研究。研究显示,目前正在爆发的水痘疫情正受到误传和社会污名化的严重影响。研究强调了与天花相关的污名化和伦理问题的负面影响,这可能会对患者产生负面影响:研究结果强调,当务之急是提高公众意识,让民间社会参与进来,并促进决策者、医疗界和社交媒体平台之间的合作。这些集体努力对于减轻耻辱感、避免人际传播、解决种族主义问题以及消除与疫情相关的误解至关重要。
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