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Investigating ethical considerations in the communication network of married women undergone hysterectomy: instrumentation of a questionnaire. 调查已婚妇女子宫切除术后通信网络中的伦理考虑:问卷的工具。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-12-21 DOI: 10.1186/s12910-024-01152-7
Elahe Bahador, Laleh Tajadiny, Abolfazl Hossein Nataj, Masumeh Ghazanfarpour, Azam Zare Arashlouei, Atefeh Ahmadi, Fahimeh Khorasani, Mina Mobasher, Jaleh Tajadini

Introduction: Considering the importance of complying medical and general ethics and the lack of a study on determining ethical considerations in the communication network of women undergoing hysterectomy surgery, this study aimed to present these aspects in the patients' lives by a standard researcher-made instrument.

Method: This mixed method analysis (exploratory sequential mixed methods design was conducted in the whole of 2020 to create the "ethical considerations in communication network of women undergone hysterectomy" questionnaire and investigate its psychometric properties. A researched-made instrument was validated and its psychometric properties were checked among 218 women by confirmatory factor analysis (CFA).

Results: Accordingly, the 8 factors extracted included "complying ethical consideration by the physician (a)", "complying ethical consideration by medical team (b)", "complying ethical consideration in the hospital (c)", "complying ethical consideration by the secretory in the clinic (d)", "complying ethical consideration by the spouse (e)", and "complying ethical consideration by the family and friends (f)", "complying ethical consideration by the media and society (g)" and "complying ethical consideration by herself (h)". The results of Cronbach's alpha test showed that there is moderate to good internal consistency in all dimensions. Cronbach's alpha for the whole questionnaire was calculated as 0.75, which shows that the internal consistency is at a good level.

Conclusion: According to the results of this study, the reliability (internal consistency) and construct validity of the ethical considerations in the communication network of women undergoing hysterectomy questionnaire were confirmed. However, in light of the study limitations, caution should be practiced in the interpretation of the results. There is a need for further longitudinal studies in multiple settings using random sampling methods.

导论:考虑到遵守医学和一般伦理的重要性,以及缺乏关于确定子宫切除术妇女沟通网络中的伦理考虑的研究,本研究旨在通过标准的研究人员自制仪器来呈现患者生活中的这些方面。方法:采用混合方法分析(探索性序贯混合方法设计),在2020年全年编制“子宫切除术妇女沟通网络中的伦理考虑”问卷,并考察其心理测量学性质。采用验证性因子分析(CFA)对研制的心理测量仪进行了验证,并对218名妇女的心理测量特性进行了检验。结果:因此,提取的8个因素包括“医生(a)的符合道德考虑”、“医疗小组(b)的符合道德考虑”、“医院(c)的符合道德考虑”、“诊所秘书(d)的符合道德考虑”、“配偶(e)的符合道德考虑”和“家人和朋友(f)的符合道德考虑”。“符合传媒及社会的道德考虑(g)”及“符合本人的道德考虑(h)”。Cronbach's alpha检验结果显示,各维度均存在中等至良好的内部一致性。整个问卷的Cronbach’s alpha值计算为0.75,表明内部一致性处于较好的水平。结论:根据本研究结果,确认了子宫切除术妇女问卷沟通网络中伦理考虑因素的信度(内部一致性)和结构效度。然而,鉴于研究的局限性,在解释结果时应谨慎。有必要使用随机抽样方法在多种环境下进行进一步的纵向研究。
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引用次数: 0
'Some parts of the consent form are written using complex scientific language': community perspectives on informed consent for research with pregnant and lactating mothers in Uganda. “同意书的某些部分是用复杂的科学语言写的”:社区对乌干达孕妇和哺乳期母亲的知情同意研究的看法。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-12-21 DOI: 10.1186/s12910-024-01147-4
Adelline Twimukye, Sylvia Nabukenya, Aida N Kawuma, Josephine Bayigga, Ritah Nakijoba, Simon Peter Asiimwe, Fredrick Byenume, Francis Williams Ojara, Catriona Waitt
<p><strong>Background: </strong>Appropriate language use is essential to ensure inclusion of diverse populations in research. We aimed to identify possible language-related barriers regarding the informed consent process and propose interventions to improve clarity and understanding of pregnant and breastfeeding women participating in research.</p><p><strong>Methods: </strong>A cross-sectional qualitative study employing focus group discussions (FGD) was conducted in Uganda from August 2023 to September 2023, involving a diverse group of stakeholders from the community, including community members, research participants, and Community Advisory Board members. 19 FGD comprised adult participants representing at least six different mother tongues (Luganda, Acholi, Runyankole, Runyoro, Lugbara and English). An inductive thematic approach was utilized for data analysis using NVivo version 12 software to identify language factors that influence informed consent. A series of community validation workshops ensured concurrence.</p><p><strong>Results: </strong>At the individual level, language barriers, and low levels of literacy contributed to poor comprehension, thus hindering ability to achieve genuine informed consent. At the health facility level, participants reported that there was use of inappropriate, unclear language including inaccurate translations, with poor and complicated grammar in some consent forms. Participants reported that complex medical terminologies are difficult to translate to local languages. Community members highlighted that social/cultural norms in language use affected cultural perceptions of informed consent. To enhance understanding for individuals without education in science, participants suggested simplification of terminologies and avoidance of complex medical jargon. Researchers should identify participants' preferred languages and communicate in those languages whenever possible. If researchers are not fluent, trained interpreters should be identified. Informed consent documents must be translated into local languages to ensure participants comprehend the study's purpose, procedures, risks, and benefits. Involving community members during development and translation of these documents can provide valuable insights into local dialects and culturally specific concepts, ensuring that study tools like surveys and consent forms are accurate and respectful.</p><p><strong>Conclusion: </strong>Language barriers influence the informed consent process within communities in Uganda. These can potentially be resolved at individual, health system and community levels. Consideration of locally understandable terms in community-facing study documentation is likely to enhance understanding and could improve research participation, although further studies are needed to assess these. The use of appropriate language ensures that informed consent is genuine in keeping with principles of Good Clinical Practice, and developing a research c
背景:适当的语言使用是确保在研究中纳入不同人群的必要条件。我们旨在确定知情同意过程中可能存在的语言障碍,并提出干预措施,以提高参与研究的孕妇和哺乳期妇女的清晰度和理解。方法:采用焦点小组讨论(FGD)的横断面定性研究于2023年8月至2023年9月在乌干达进行,涉及来自社区的不同利益相关者群体,包括社区成员、研究参与者和社区咨询委员会成员。19 . FGD由代表至少六种不同母语(卢干达语、阿乔利语、伦扬科尔语、伦约罗语、卢格巴拉语和英语)的成年参与者组成。采用归纳专题方法使用NVivo version 12软件进行数据分析,以确定影响知情同意的语言因素。一系列社区验证研讨会确保了并发性。结果:在个人层面上,语言障碍和低水平的读写能力导致理解能力差,从而阻碍了实现真正的知情同意的能力。在卫生机构一级,与会者报告说,在一些同意表格中使用了不恰当、不清晰的语言,包括翻译不准确,语法糟糕而复杂。与会者报告说,复杂的医学术语很难翻译成当地语言。社区成员强调,语言使用中的社会/文化规范影响了对知情同意的文化看法。为了加强没有接受过科学教育的个人的理解,与会者建议简化术语,避免使用复杂的医学术语。研究人员应该确定参与者的首选语言,并尽可能使用这些语言进行交流。如果研究人员不流利,应确定训练有素的口译员。知情同意文件必须翻译成当地语言,以确保参与者理解研究的目的、程序、风险和益处。让社区成员参与这些文件的开发和翻译,可以提供对当地方言和特定文化概念的宝贵见解,确保调查和同意书等研究工具的准确性和尊重性。结论:语言障碍影响乌干达社区内的知情同意过程。这些问题有可能在个人、卫生系统和社区层面得到解决。在面向社区的研究文件中考虑当地可理解的术语可能会增进理解,并可能改善研究参与,尽管需要进一步的研究来评估这些术语。使用适当的语言确保知情同意是真实的,符合良好临床实践的原则,制定研究沟通策略应该是包容性研究设计的一部分。
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引用次数: 0
Development, reliability, and validity of the nurses' conscientious objection attitude scale (COAS-N). 护士良心反对态度量表(COAS-N)的编制、信度和效度。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-12-21 DOI: 10.1186/s12910-024-01155-4
Seyhan Demir Karabulut, Şenay Gül, Eylem Gül Ateş, Zehra Göçmen Baykara

Background: Conscientious objection poses ethical dilemmas frequently encountered by nurses, allowing them to prioritize personal beliefs in caregiving. However, it may also be viewed as a stance jeopardizing patients' healthcare access. There is no measurement tool to measure conscientious objection in nurses. This study aimed to develop a measurement tool for nurses' conscientious objection attitudes.

Methods: This research is a methodological study conducted with a total of 261 nurses in Turkiye. Following content validity assessments by ten experts, a 29-item draft scale was developed. Exploratory and confirmatory factor analyses examined the factor structure, and reliability was assessed via the Spearman-Brown coefficient, intraclass correlation coefficient (ICC), and Bland Altman plot. Cronbach's alpha estimated internal consistency and discrimination, which were evaluated by comparing lower and upper 27% groups.

Results: The Nurses' Conscientious Objection Attitude Scale (COAS-N) comprises 29 items and three sub-dimensions (prioritizing professional values, prioritizing personal values, and requesting the right to conscientious objection). Cronbach's alpha for the entire scale is 0.81.

Conclusion: Validity and reliability were established for the newly developed scale measuring nurses' conscientious objection attitudes.

背景:良心反对提出伦理困境经常遇到护士,使他们优先考虑个人信仰护理。然而,这也可能被视为一种危及患者获得医疗保健的立场。没有测量工具来衡量护士的良心反对。本研究旨在开发一种测量护士良心反对态度的工具。方法:对土耳其261名护士进行方法学研究。经过10位专家的内容效度评估,制定了一份包含29个项目的量表草案。探索性和验证性因子分析检验了因子结构,并通过Spearman-Brown系数、类内相关系数(ICC)和Bland Altman图评估了信度。Cronbach's alpha估计内部一致性和歧视,通过比较低27%和高27%的组来评估。结果:护士良心拒服兵役态度量表(COAS-N)包含29个条目和3个子维度(优先考虑职业价值、优先考虑个人价值和要求良心拒服兵役权)。整个量表的Cronbach's alpha为0.81。结论:新编制的护士良心反对态度量表具有良好的信度和效度。
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引用次数: 0
Shared care planning in people with cognitive disorders and dementia: a survey among patients and caregivers in Italy. 认知障碍和痴呆症患者的共享护理计划:意大利患者和护理人员的一项调查。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-12-20 DOI: 10.1186/s12910-024-01150-9
Corinna Porteri, Giulia Ienco, Edda Mariaelisa Turla, Mariassunta Piccinni, Patrizio Pasqualetti

Background: There is wide convergence in the positions of scientific societies, patient associations and public bodies regarding the advisability of advance care planning (ACP) in cognitive disorders and dementia to respect the specificity of the person. Nevertheless, planning in advance for dementia represents a unique challenge. In Italy, law n. 219/2017 introduced ACP for the first time at the regulatory level, under the name of shared care planning (SCP). Few surveys on the law implementation have been conducted in Italy, but none have specifically involved patients with cognitive disorders and their caregivers. To contribute filling the gap, we conducted a survey among patients and caregivers attending a memory clinic to investigate what their knowledge, attitudes and experiences were regarding SCP.

Methods: We developed two semi-structured questionnaires for patients and caregivers organized into the following sections: (i) knowledge of the law; (ii) general attitude on SCP; (iii) experience about SCP; (iv) attitude about realizing a SCP; (v) advance directives. Participation in the survey was offered to consecutive patients discharged from the memory clinic during 26 target weeks and to their caregivers. The interviews were conducted on the occasion of the last scheduled visit to the facility; telephone interview was also provided. Information was collected by means of an online platform (Google Forms). Descriptive and basic inferential analysis was performed by means of SPSS (IBM). The analysis of the open-ended questions was also conducted with the support of the Voyant Tools.

Results: Sixty-six patient and 65 caregiver interviews were collected. No participant reported that a doctor has ever talked to the patient about SCP. The large majority of patients (85%) and almost all caregivers (95%) agree/absolutely agree with the opportunity for patients to realize SCP. Almost all participants agree/absolutely agree with the usefulness for the patients of indicating a trusted person to act on their behalf (91% patients and 95% caregivers). Forty-three (65%) patients and 48 (74%) caregivers believe it would be good to start SCP with the patient when the time is right. Among them, 20 caregivers and 12 patients believe it is already time to talk about SCP.

Conclusions: Study results showed patients' and caregivers' interest in the SCP process and, at the same time, their mixed attitude when SCP is referred specifically to themselves or their loved ones. This indicates the need to introduce the discourse on SCP into clinical practice while remaining very sensitive to the individual patient's pace and wishes, including his/her possible refusal to talk about SCP.

背景:科学学会、患者协会和公共机构对于提前护理计划(ACP)在认知障碍和痴呆中是否可取,尊重患者的特殊性的立场广泛趋同。然而,提前规划痴呆症是一项独特的挑战。在意大利,第219/2017号法律首次在监管层面以共享护理计划(SCP)的名义引入了ACP。意大利很少对法律实施情况进行调查,但没有一项调查专门涉及认知障碍患者及其护理人员。为了填补这一空白,我们对参加记忆诊所的患者和护理人员进行了一项调查,调查他们对SCP的知识、态度和经历。方法:我们为患者和护理人员开发了两份半结构化问卷,分为以下部分:(i)法律知识;(ii)对SCP的一般态度;(iii) SCP经验;(iv)对SCP实现的态度;(v)预先指示。在26个目标周内连续从记忆诊所出院的病人和他们的护理人员都可以参与这项调查。采访是在最后一次预定访问该设施的时候进行的;还提供了电话采访。信息是通过在线平台(谷歌表格)收集的。采用SPSS (IBM)软件进行描述性分析和基本推理分析。对开放式问题的分析也在Voyant工具的支持下进行。结果:收集了66名患者和65名护理人员的访谈。没有参与者报告说医生曾与患者谈论过SCP。绝大多数患者(85%)和几乎所有护理人员(95%)同意/绝对同意患者有机会实现SCP。几乎所有的参与者(91%的患者和95%的护理人员)都同意/绝对同意指定一个值得信赖的人代表他们行事对患者是有用的。43名(65%)患者和48名(74%)护理人员认为,在合适的时间与患者一起开始SCP是件好事。其中,20名护理人员和12名患者认为已经到了谈论SCP的时候了。结论:研究结果显示患者和照顾者对SCP过程的兴趣,同时,当SCP被专门提及自己或其亲人时,他们的态度不一。这表明需要将关于SCP的论述引入临床实践,同时对个体患者的节奏和愿望保持高度敏感,包括他/她可能拒绝谈论SCP。
{"title":"Shared care planning in people with cognitive disorders and dementia: a survey among patients and caregivers in Italy.","authors":"Corinna Porteri, Giulia Ienco, Edda Mariaelisa Turla, Mariassunta Piccinni, Patrizio Pasqualetti","doi":"10.1186/s12910-024-01150-9","DOIUrl":"10.1186/s12910-024-01150-9","url":null,"abstract":"<p><strong>Background: </strong>There is wide convergence in the positions of scientific societies, patient associations and public bodies regarding the advisability of advance care planning (ACP) in cognitive disorders and dementia to respect the specificity of the person. Nevertheless, planning in advance for dementia represents a unique challenge. In Italy, law n. 219/2017 introduced ACP for the first time at the regulatory level, under the name of shared care planning (SCP). Few surveys on the law implementation have been conducted in Italy, but none have specifically involved patients with cognitive disorders and their caregivers. To contribute filling the gap, we conducted a survey among patients and caregivers attending a memory clinic to investigate what their knowledge, attitudes and experiences were regarding SCP.</p><p><strong>Methods: </strong>We developed two semi-structured questionnaires for patients and caregivers organized into the following sections: (i) knowledge of the law; (ii) general attitude on SCP; (iii) experience about SCP; (iv) attitude about realizing a SCP; (v) advance directives. Participation in the survey was offered to consecutive patients discharged from the memory clinic during 26 target weeks and to their caregivers. The interviews were conducted on the occasion of the last scheduled visit to the facility; telephone interview was also provided. Information was collected by means of an online platform (Google Forms). Descriptive and basic inferential analysis was performed by means of SPSS (IBM). The analysis of the open-ended questions was also conducted with the support of the Voyant Tools.</p><p><strong>Results: </strong>Sixty-six patient and 65 caregiver interviews were collected. No participant reported that a doctor has ever talked to the patient about SCP. The large majority of patients (85%) and almost all caregivers (95%) agree/absolutely agree with the opportunity for patients to realize SCP. Almost all participants agree/absolutely agree with the usefulness for the patients of indicating a trusted person to act on their behalf (91% patients and 95% caregivers). Forty-three (65%) patients and 48 (74%) caregivers believe it would be good to start SCP with the patient when the time is right. Among them, 20 caregivers and 12 patients believe it is already time to talk about SCP.</p><p><strong>Conclusions: </strong>Study results showed patients' and caregivers' interest in the SCP process and, at the same time, their mixed attitude when SCP is referred specifically to themselves or their loved ones. This indicates the need to introduce the discourse on SCP into clinical practice while remaining very sensitive to the individual patient's pace and wishes, including his/her possible refusal to talk about SCP.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"145"},"PeriodicalIF":3.0,"publicationDate":"2024-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11660457/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142866269","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
Decision-making and ethical dilemmas experienced by hospital physicians during the COVID-19 pandemic in the Czech Republic. 在捷克共和国COVID-19大流行期间,医院医生经历的决策和道德困境。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-12-04 DOI: 10.1186/s12910-024-01133-w
Ilona Tietzova, Radka Buzgova, Ondrej Kopecky

Background: During the COVID-19 pandemic, global healthcare systems faced unprecedented challenges, with a lack of resources and suboptimal patient care emerging as primary concerns.

Methods: Our research, using a comprehensive 24-item electronic questionnaire, "Reflections on the Provision of Healthcare during the COVID-19 Pandemic," delved into the experiences of 938 physicians across the Czech Republic.

Results: Over fifty per cent observed a "lower standard of care" compared to pre-pandemic levels. A division arose among physicians regarding a decision's medical, ethical, or legal basis, with a notable gender disparity: male doctors leaned towards medical perspectives, whereas females accented the ethical perspective. Decision-making concerning health care limitations required agreement among the physicians on duty, interdisciplinary teams, or shift supervisors. Physicians reported varying degrees of patient or family participation in health care decisions. Variables such as age, pre-existing health conditions, and life expectancy influenced care decisions. Surprisingly, half of the physicians faced refusals of patients' transportation to better-equipped facilities due to resource constraints. One-third of physicians never discuss the decision about care limitation and other options with patients or their families. As a result, almost fifty per cent of the physicians rarely or never imparted information about care limitations to patients.

Conclusion: The survey shed light on the profound ethical dilemmas hospital physicians face across different types of healthcare facilities during the pandemic. It uncovered the need for open dialogue and scholarly debate on resource allocation and strengthening the role of patients and their families in care decisions in future healthcare crises.

背景:在2019冠状病毒病大流行期间,全球卫生保健系统面临着前所未有的挑战,缺乏资源和不理想的患者护理成为主要问题。方法:我们的研究使用了一份包含24个项目的综合电子问卷,“对COVID-19大流行期间医疗服务提供的思考”,深入研究了捷克共和国938名医生的经验。结果:超过50%的人观察到,与大流行前的水平相比,“护理标准较低”。医生之间就决定的医学、伦理或法律依据产生了分歧,性别差异明显:男医生倾向于医学观点,而女医生则强调伦理观点。有关医疗保健限制的决策需要当班医生、跨学科团队或轮班主管达成一致。医生报告了不同程度的患者或家庭参与医疗保健决策。年龄、既往健康状况和预期寿命等变量影响护理决策。令人惊讶的是,由于资源限制,一半的医生面临着将患者转移到设备更好的医院的拒绝。三分之一的医生从不与患者或其家属讨论有关护理限制和其他选择的决定。因此,几乎50%的医生很少或从不向患者传授有关护理限制的信息。结论:该调查揭示了大流行期间不同类型医疗机构的医院医生面临的深刻伦理困境。它揭示了需要就资源分配和加强患者及其家属在未来医疗保健危机中的护理决策中的作用进行公开对话和学术辩论。
{"title":"Decision-making and ethical dilemmas experienced by hospital physicians during the COVID-19 pandemic in the Czech Republic.","authors":"Ilona Tietzova, Radka Buzgova, Ondrej Kopecky","doi":"10.1186/s12910-024-01133-w","DOIUrl":"10.1186/s12910-024-01133-w","url":null,"abstract":"<p><strong>Background: </strong>During the COVID-19 pandemic, global healthcare systems faced unprecedented challenges, with a lack of resources and suboptimal patient care emerging as primary concerns.</p><p><strong>Methods: </strong>Our research, using a comprehensive 24-item electronic questionnaire, \"Reflections on the Provision of Healthcare during the COVID-19 Pandemic,\" delved into the experiences of 938 physicians across the Czech Republic.</p><p><strong>Results: </strong>Over fifty per cent observed a \"lower standard of care\" compared to pre-pandemic levels. A division arose among physicians regarding a decision's medical, ethical, or legal basis, with a notable gender disparity: male doctors leaned towards medical perspectives, whereas females accented the ethical perspective. Decision-making concerning health care limitations required agreement among the physicians on duty, interdisciplinary teams, or shift supervisors. Physicians reported varying degrees of patient or family participation in health care decisions. Variables such as age, pre-existing health conditions, and life expectancy influenced care decisions. Surprisingly, half of the physicians faced refusals of patients' transportation to better-equipped facilities due to resource constraints. One-third of physicians never discuss the decision about care limitation and other options with patients or their families. As a result, almost fifty per cent of the physicians rarely or never imparted information about care limitations to patients.</p><p><strong>Conclusion: </strong>The survey shed light on the profound ethical dilemmas hospital physicians face across different types of healthcare facilities during the pandemic. It uncovered the need for open dialogue and scholarly debate on resource allocation and strengthening the role of patients and their families in care decisions in future healthcare crises.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"144"},"PeriodicalIF":3.0,"publicationDate":"2024-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11619269/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142781354","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
Hematologists' perspective on advance directives, a French national cross-sectional survey - the ADORE-H study. 血液科医生对预先医疗指示的看法,法国全国横断面调查--ADORE-H 研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-11-27 DOI: 10.1186/s12910-024-01146-5
K Serey, A Cambriel, Adrien Pollina-Bachellerie, Jacques-Olivier Bay, Carole Bouleuc, Laure Ladrat, Jean-Pierre Lotz, Francois Philippart

Background: The onset of hematological malignancies can lead to acute and critical situations. It can also result in adverse outcome despite the significant advancements made in their therapeutic management. In this context, advance care planning and, in particular, advance directives (AD) play an essential role. However, the use of AD in patients with malignant hematological conditions remains very rare.

Material & methods: The aim was to evaluate the perception of AD by hematologists. We conducted a national online survey in France. All hematologist working in a hospital setting and treating malignant hemopathies were solicited. The questionnaire covered five areas: personal perception of AD; assistance in writing AD; patient information about AD; use of ADs; and demographic data.

Results: 318 hematologists (33.7% of the whole population), working in 103 different centers across France participated in the study. 72.6% (n = 231) of the respondents believed that AD could be beneficial for patient's care. Only 32.7% talked about AD with their patients on a regular basis. The lack of utilization was correlated with the fear of creating anxiety for the patient (64.9%; n = 172) or for relatives (30.9%; n = 80), as well as the belief that AD were deemed inappropriate for their patients (57.8%; n = 145). 19.5% (n = 62) of responding hematologist offered their assistance to patients in writing AD. This proportion was higher in physicians who had previously worked in palliative care unit (35,6% vs. 16,8%, p = 0,0004).

Conclusion: The majority of the surveyed hematologist hold a positive opinion about AD. However, only a few discuss the matter with their patients. The fear of consequences for patients and relatives, particularly anxiety, remains the primary barrier to providing information about AD.

背景:血液恶性肿瘤的发病可导致急危重症。尽管在血液恶性肿瘤的治疗管理方面取得了重大进展,但仍可能导致不良后果。在这种情况下,预先护理计划,尤其是预先指示(AD)发挥着至关重要的作用。然而,在恶性血液病患者中使用预先医疗指示的情况仍然非常罕见:我们的目的是评估血液科医生对预先医疗指示的认识。我们在法国开展了一项全国性在线调查。调查对象为所有在医院工作并治疗恶性血液病的血液科医生。调查问卷涵盖五个方面:个人对AD的认知;协助撰写AD;患者对AD的了解;AD的使用;人口统计学数据:共有 318 名血液学专家(占总人数的 33.7%)参与了这项研究,他们分别在法国 103 个不同的中心工作。72.6%(n = 231)的受访者认为,AD 可以为患者的治疗带来益处。只有 32.7% 的受访者经常与病人谈论 AD。不使用 AD 与担心给病人(64.9%;n = 172)或亲属(30.9%;n = 80)带来焦虑以及认为 AD 不适合病人(57.8%;n = 145)有关。19.5%(n = 62)的受访血液科医生会协助患者撰写 AD。这一比例在曾在姑息治疗病房工作过的医生中更高(35.6% vs. 16.8%,p = 0.0004):结论:大多数接受调查的血液科医生对AD持积极态度。然而,只有少数人与他们的病人讨论过这一问题。病人和亲属对后果的恐惧,尤其是焦虑,仍然是提供 AD 信息的主要障碍。
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引用次数: 0
Regulating professional ethics in a context of technological change. 在技术变革的背景下规范职业道德。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-11-27 DOI: 10.1186/s12910-024-01140-x
Tracey L Adams, Kathleen Leslie, Sophia Myles, Bruna Moraes

Background: Technological change is impacting the work of health professionals, especially with recent developments in artificial intelligence. Research has raised many ethical considerations respecting clinical applications of artificial intelligence, and it has identified a role for professional regulation in helping to guide practitioners in the ethical use of technology; however, regulation in this area has been slow to develop. This study seeks to identify the challenges that health professionals face in the context of technological change, and whether regulators' codes of ethics and guidance are sufficient to help workers navigate these changes.

Methods: We conducted mixed methods research in Ontario, Canada, using qualitative content analysis of regulators' codes of ethics and practice guidance (26 regulators, 63 documents analysed), interviews with 7 representatives from 5 health profession regulatory bodies, and focus groups with 17 healthcare practitioners across 5 professions in the province. We used thematic analysis to analyse the data and answer our core research questions.

Results: We find that codes of ethics focus more on general principles and managing practitioners' relationships with clients/patients; hence, it is not clear that these documents can successfully guide professional practice in a context of rapid technological change. Practitioners and regulatory body staff express ambivalence and uncertainty about regulators' roles in regulating technology use. In some instances, health professionals experience conflict between the expectations of their regulator and their employer. These gaps and conflicts leave some professionals uncertain about how to practice ethically in a digital age.

Conclusions: There is a need for more guidance and regulation in this area, not only for practitioners, but with respect to the application of technology within the environments in which health professionals work.

背景:技术变革正在影响医疗专业人员的工作,尤其是人工智能的最新发展。研究提出了许多有关人工智能临床应用的伦理问题,并确定了专业监管在帮助指导从业人员合乎伦理地使用技术方面的作用;然而,该领域的监管发展缓慢。本研究旨在确定卫生专业人员在技术变革背景下面临的挑战,以及监管机构的道德规范和指导是否足以帮助从业人员驾驭这些变革:我们在加拿大安大略省开展了混合方法研究,对监管机构的道德规范和实践指南(26 家监管机构,分析了 63 份文件)进行了定性内容分析,对来自 5 个医疗专业监管机构的 7 名代表进行了访谈,并对该省 5 个专业的 17 名医疗从业人员进行了焦点小组讨论。我们采用主题分析法对数据进行了分析,并回答了我们的核心研究问题:我们发现,道德规范更侧重于一般原则和管理从业人员与客户/患者的关系;因此,在技术快速变化的背景下,这些文件能否成功指导专业实践并不明确。从业人员和监管机构工作人员对监管机构在监管技术使用方面的作用表示矛盾和不确定。在某些情况下,医疗专业人员会遇到监管机构的期望与其雇主的期望之间的冲突。这些差距和冲突让一些专业人员不确定如何在数字时代以合乎道德的方式执业:结论:在这一领域需要更多的指导和监管,不仅是对从业人员,而且对卫生专业人员工作环境中的技术应用也是如此。
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引用次数: 0
Community engagement conduct for genetics and genomics research: a qualitative study of the experiences and perspectives of key stakeholders in Uganda. 遗传学和基因组学研究的社区参与行为:对乌干达主要利益相关者的经验和观点的定性研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-11-27 DOI: 10.1186/s12910-024-01137-6
Harriet Nankya, Vincent P Alibu, Enock Matovu, Edward Wamala, John Barugahare

Background: Community engagement (CE) is one of the key strategies to optimize ethical integrity in research. However, the knowledge base on how CE should be effectively and ethically conducted, particularly for genetics and genomics research (GGR), is limited. Lessons have not been drawn from the experiences of key stakeholders in GGR, on CE, in Uganda.

Aim: To analyze the experiences and perspectives of the key stakeholders (GGR researchers, lay communities, and REC members) on engaging communities in GGR, to consequently inform how communities could be ethically engaged in such research, in Uganda.

Method: A cross-sectional qualitative study was conducted at; Makerere University, Uganda Virus Research Institute, and Mulago National Referral Hospital. Twenty-five GGR researchers, twenty REC members, and thirty-eight community members, participated in this study. Data were collected using in-depth interviews guides, and Focus group discussions. Data was analyzed thematically, using NVivo version 12 Plus.

Study findings: Thirteen of the twenty-five GGR researchers had conducted CE in their studies, seven REC members had ever reviewed GGR protocols, and all the community respondents had ever participated in GGR. The goal for CE was reported to depend on the type of GGR as either basic or applied. Planning for CE involved; defining the community and for GGR this includes individuals not directly involved in the research but share the study gene with participants; a bigger CE budget to cover extra costs in GGR. The conduct of CE was reported to mainly occur at sample collection stage, rarely at study conception, and had not occurred at the return of results stage. Implementation of CE involved; engaging leaders first to gain access and acceptance of the research in the community; having a genetic counsellor on the CE team to handle the social issues in GGR.

Conclusion: This study provides challenges and facilitators on the conduct of CE in GGR in Uganda. Measures including the building of capacity especially knowledge in both GGR and CE for all the stakeholders, and using this study findings to inform policy, regulation, and further research will potentially contribute to ethical CE in GGR in Uganda and similar research contexts.

背景:社区参与 (CE) 是优化研究伦理完整性的关键策略之一。然而,关于如何有效、合乎伦理地开展社区参与,尤其是遗传学和基因组学研究(GGR)的社区参与,相关知识却十分有限。目的:分析主要利益相关者(遗传学和基因组学研究人员、非专业社区和区域经济委员会成员)在让社区参与遗传学和基因组学研究方面的经验和观点,从而为乌干达社区如何以合乎伦理的方式参与此类研究提供信息:在马凯雷雷大学、乌干达病毒研究所和穆拉戈国家转诊医院开展了一项横向定性研究。25 名 GGR 研究人员、20 名 REC 成员和 38 名社区成员参与了这项研究。采用深入访谈指南和焦点小组讨论的方式收集数据。研究结果:在 25 名性别问题研究人员中,有 13 人曾在其研究中开展过 CE,7 名 REC 成员曾审查过性别问题研究协议,所有社区受访者都曾参与过性别问题研究。据报告,全民教育的目标取决于全球基因资源评估的基本类型或应用类型。行政首长协调会的规划涉及:界定社区,对于全球基因资源评估,这包括未直接参与研究但与参与者共享研究基因的个人;更多的行政首长协调会预算,以支付全球基因资源评估的额外费用。据报告,开展 CE 主要发生在样本收集阶段,很少发生在研究构想阶段,也没有发生在返回结果阶段。实施全民教育涉及:首先让领导参与,以获得社区对研究的接触和接受;在全民教育团队中配备一名遗传咨询师,以处理 GGR 中的社会问题:本研究提供了在乌干达开展基因遗传学研究的挑战和促进因素。包括能力建设在内的各项措施,尤其是所有利益相关者在 GGR 和 CE 方面的知识建设,以及利用本研究结果为政策、法规和进一步研究提供信息,将有可能促进乌干达和类似研究环境下 GGR 中符合伦理的 CE。
{"title":"Community engagement conduct for genetics and genomics research: a qualitative study of the experiences and perspectives of key stakeholders in Uganda.","authors":"Harriet Nankya, Vincent P Alibu, Enock Matovu, Edward Wamala, John Barugahare","doi":"10.1186/s12910-024-01137-6","DOIUrl":"10.1186/s12910-024-01137-6","url":null,"abstract":"<p><strong>Background: </strong>Community engagement (CE) is one of the key strategies to optimize ethical integrity in research. However, the knowledge base on how CE should be effectively and ethically conducted, particularly for genetics and genomics research (GGR), is limited. Lessons have not been drawn from the experiences of key stakeholders in GGR, on CE, in Uganda.</p><p><strong>Aim: </strong>To analyze the experiences and perspectives of the key stakeholders (GGR researchers, lay communities, and REC members) on engaging communities in GGR, to consequently inform how communities could be ethically engaged in such research, in Uganda.</p><p><strong>Method: </strong>A cross-sectional qualitative study was conducted at; Makerere University, Uganda Virus Research Institute, and Mulago National Referral Hospital. Twenty-five GGR researchers, twenty REC members, and thirty-eight community members, participated in this study. Data were collected using in-depth interviews guides, and Focus group discussions. Data was analyzed thematically, using NVivo version 12 Plus.</p><p><strong>Study findings: </strong>Thirteen of the twenty-five GGR researchers had conducted CE in their studies, seven REC members had ever reviewed GGR protocols, and all the community respondents had ever participated in GGR. The goal for CE was reported to depend on the type of GGR as either basic or applied. Planning for CE involved; defining the community and for GGR this includes individuals not directly involved in the research but share the study gene with participants; a bigger CE budget to cover extra costs in GGR. The conduct of CE was reported to mainly occur at sample collection stage, rarely at study conception, and had not occurred at the return of results stage. Implementation of CE involved; engaging leaders first to gain access and acceptance of the research in the community; having a genetic counsellor on the CE team to handle the social issues in GGR.</p><p><strong>Conclusion: </strong>This study provides challenges and facilitators on the conduct of CE in GGR in Uganda. Measures including the building of capacity especially knowledge in both GGR and CE for all the stakeholders, and using this study findings to inform policy, regulation, and further research will potentially contribute to ethical CE in GGR in Uganda and similar research contexts.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"141"},"PeriodicalIF":3.0,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11600932/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142741304","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
Exploring patients' rights awareness and implementations amongst hospitalized patients in Northern Palestine: insights from a local perspective. 探讨巴勒斯坦北部住院病人的权利意识和落实情况:从当地视角提出的见解。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-11-26 DOI: 10.1186/s12910-024-01139-4
Anas Odeh, Nadeem Khayat, Saad Abuzahra, Amira Shaheen, Zaher Nazzal

Background and aim: Promoting ethical medical practices and preserving human rights principles require an understanding of patient rights. Studies show varying awareness levels among patients regarding their rights. This study aims to assess the level of awareness among patients in Palestine about their rights and the compliance of healthcare professionals.

Methods: A cross-sectional study was conducted between November 2023 and January 2024 in the Northern West Bank cities. Data collection was conducted by three trained medical students utilizing an interviewer-administered questionnaire. The association between participant characteristics and awareness was assessed using the Chi-square test, followed by a multivariate regression analysis to control for confounding variables.

Results: Of 400 patients surveyed, 47.0% had good awareness of their rights. Multivariate analysis showed that awareness was associated with patients in the age group of 18-30 years and 46-60 years, having private insurance, more prior hospitalizations, non-governmental settings, and prior charter awareness. Awareness was highest for respectful care and lowest for staff introductions. Non-governmental facilities performed better than governmental on explaining procedures, alternatives, and costs, though both settings scored highly on non-discrimination and consent.

Conclusions: Our findings underscore global gaps in ensuring adequate patients' rights awareness and implementation, with over half exhibiting inadequate knowledge. Significant deficiencies exist in involving patients in decision-making, informing about procedures/costs, and providing accessible complaint mechanisms, particularly in governmental facilities. Comprehensive, culturally-appropriate initiatives involving multisectoral collaborations are crucial to drive substantive reforms translating patient-centered care principles into consistent practice worldwide.

背景和目的:促进合乎道德的医疗实践和维护人权原则需要了解病人的权利。研究表明,患者对自身权利的认识水平参差不齐。本研究旨在评估巴勒斯坦患者对自身权利的认识水平以及医护人员的遵从情况:这项横断面研究于 2023 年 11 月至 2024 年 1 月在约旦河西岸北部城市进行。数据收集工作由三名训练有素的医科学生进行,采用的是由访谈者发放的调查问卷。利用卡方检验评估了参与者特征与认知度之间的关系,随后进行了多变量回归分析以控制混杂变量:结果:在接受调查的 400 名患者中,47.0% 的人对自己的权利有良好的认识。多变量分析表明,患者的权利意识与以下因素有关:年龄在 18-30 岁和 46-60 岁之间、有私人保险、以前住院次数较多、非政府机构、以前有宪章意识。对尊重护理的认知度最高,对工作人员介绍的认知度最低。非政府机构在解释程序、替代方案和费用方面的表现优于政府机构,但在不歧视和同意方面,非政府机构和政府机构的得分都很高:我们的研究结果表明,全球在确保充分认识和落实患者权利方面存在差距,一半以上的机构对患者权利的认识不足。在让患者参与决策、告知程序/费用以及提供便捷的投诉机制方面存在重大缺陷,尤其是在政府机构。要推动实质性改革,将 "以患者为中心 "的护理原则转化为全球一致的实践,涉及多部门合作的全面、文化适宜的倡议至关重要。
{"title":"Exploring patients' rights awareness and implementations amongst hospitalized patients in Northern Palestine: insights from a local perspective.","authors":"Anas Odeh, Nadeem Khayat, Saad Abuzahra, Amira Shaheen, Zaher Nazzal","doi":"10.1186/s12910-024-01139-4","DOIUrl":"10.1186/s12910-024-01139-4","url":null,"abstract":"<p><strong>Background and aim: </strong>Promoting ethical medical practices and preserving human rights principles require an understanding of patient rights. Studies show varying awareness levels among patients regarding their rights. This study aims to assess the level of awareness among patients in Palestine about their rights and the compliance of healthcare professionals.</p><p><strong>Methods: </strong>A cross-sectional study was conducted between November 2023 and January 2024 in the Northern West Bank cities. Data collection was conducted by three trained medical students utilizing an interviewer-administered questionnaire. The association between participant characteristics and awareness was assessed using the Chi-square test, followed by a multivariate regression analysis to control for confounding variables.</p><p><strong>Results: </strong>Of 400 patients surveyed, 47.0% had good awareness of their rights. Multivariate analysis showed that awareness was associated with patients in the age group of 18-30 years and 46-60 years, having private insurance, more prior hospitalizations, non-governmental settings, and prior charter awareness. Awareness was highest for respectful care and lowest for staff introductions. Non-governmental facilities performed better than governmental on explaining procedures, alternatives, and costs, though both settings scored highly on non-discrimination and consent.</p><p><strong>Conclusions: </strong>Our findings underscore global gaps in ensuring adequate patients' rights awareness and implementation, with over half exhibiting inadequate knowledge. Significant deficiencies exist in involving patients in decision-making, informing about procedures/costs, and providing accessible complaint mechanisms, particularly in governmental facilities. Comprehensive, culturally-appropriate initiatives involving multisectoral collaborations are crucial to drive substantive reforms translating patient-centered care principles into consistent practice worldwide.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"139"},"PeriodicalIF":3.0,"publicationDate":"2024-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11590486/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142734862","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
Parental awareness and perspectives on newborn screening in China: a questionnaire-based study. 中国家长对新生儿疾病筛查的认识和看法:一项基于问卷的研究。
IF 3 1区 哲学 Q1 ETHICS Pub Date : 2024-11-26 DOI: 10.1186/s12910-024-01145-6
Xiaoshan Yin, Peiyao Wang, Ziyan Cen, Zinan Yu, Qimin He, Benqing Wu, Xinwen Huang

Background: Low parental awareness and knowledge about newborn screening have been identified as a public issue. This study explored Chinese parents' self-evaluation of awareness, knowledge, and methods of receiving information about newborn screening.

Methods: Using convenience sampling, we included 614 respondents who were expectant parents or parents of children aged 0-3 years. Our self-made questionnaire comprised four sections: sociodemographic characteristics, self-evaluation of awareness, detailed knowledge about newborn screening, and practical and expected methods of receiving newborn screening information.

Results: We found that 72.9% of participants were classified as aware of newborn screening. However, only 14.2% of the participants received a passing score on the newborn screening detailed knowledge questions. Knowledge level about newborn screening was significantly associated with gender (P < .001), age (P < .05), education level (P < .05), residence (P < .05), family income (P < .05), and number of children (P < .05). The knowledge acquisition about newborn screening mainly came from hospital-related training (62.1%). Additionally, nearly half of the respondents (48.0%) expressed a preference for learning more about newborn screening through social media platforms, such as WeChat.

Conclusions: While the majority of expectant or new parents were aware of newborn screening, only a minority had a thorough understanding of it. Various sociodemographic factors were associated with the level of parental knowledge about newborn screening. It is recommended to use hospital lectures or social media initiatives to educate parents in China.

背景:家长对新生儿疾病筛查的认识和知识不足已被认为是一个公共问题。本研究探讨了中国父母对新生儿疾病筛查的认识、知识和接受信息的方法的自我评价:方法:我们采用便利抽样的方法,纳入了 614 名准父母或 0-3 岁儿童的父母。我们自制的问卷包括四个部分:社会人口学特征、对新生儿筛查认知的自我评价、对新生儿筛查知识的详细了解以及接收新生儿筛查信息的实用方法和预期方法:我们发现,72.9% 的参与者对新生儿疾病筛查有所了解。然而,只有 14.2% 的参与者在新生儿筛查详细知识问题上获得了及格分数。新生儿筛查知识水平与性别有明显的相关性(P 结论:新生儿筛查知识水平与性别有明显的相关性:虽然大多数准父母或新父母都知道新生儿筛查,但只有少数人对其有透彻的了解。各种社会人口因素与父母对新生儿疾病筛查的了解程度有关。建议在中国利用医院讲座或社交媒体对父母进行教育。
{"title":"Parental awareness and perspectives on newborn screening in China: a questionnaire-based study.","authors":"Xiaoshan Yin, Peiyao Wang, Ziyan Cen, Zinan Yu, Qimin He, Benqing Wu, Xinwen Huang","doi":"10.1186/s12910-024-01145-6","DOIUrl":"10.1186/s12910-024-01145-6","url":null,"abstract":"<p><strong>Background: </strong>Low parental awareness and knowledge about newborn screening have been identified as a public issue. This study explored Chinese parents' self-evaluation of awareness, knowledge, and methods of receiving information about newborn screening.</p><p><strong>Methods: </strong>Using convenience sampling, we included 614 respondents who were expectant parents or parents of children aged 0-3 years. Our self-made questionnaire comprised four sections: sociodemographic characteristics, self-evaluation of awareness, detailed knowledge about newborn screening, and practical and expected methods of receiving newborn screening information.</p><p><strong>Results: </strong>We found that 72.9% of participants were classified as aware of newborn screening. However, only 14.2% of the participants received a passing score on the newborn screening detailed knowledge questions. Knowledge level about newborn screening was significantly associated with gender (P < .001), age (P < .05), education level (P < .05), residence (P < .05), family income (P < .05), and number of children (P < .05). The knowledge acquisition about newborn screening mainly came from hospital-related training (62.1%). Additionally, nearly half of the respondents (48.0%) expressed a preference for learning more about newborn screening through social media platforms, such as WeChat.</p><p><strong>Conclusions: </strong>While the majority of expectant or new parents were aware of newborn screening, only a minority had a thorough understanding of it. Various sociodemographic factors were associated with the level of parental knowledge about newborn screening. It is recommended to use hospital lectures or social media initiatives to educate parents in China.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"140"},"PeriodicalIF":3.0,"publicationDate":"2024-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11590612/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142734863","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
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