Cecilie Knagenhjelm Hertzberg, Morten Magelssen, Anne Kari Tolo Heggestad
{"title":"Putting patients first: when home-based care staff prioritise loyalty to patients above the system and themselves. An ethnographic study","authors":"Cecilie Knagenhjelm Hertzberg, Morten Magelssen, Anne Kari Tolo Heggestad","doi":"10.1186/s12910-024-01094-0","DOIUrl":"https://doi.org/10.1186/s12910-024-01094-0","url":null,"abstract":"The growing number of older people worldwide poses challenges for health policy, particularly in the Global North, where policymakers increasingly expect seniors to live and receive care at home. However, healthcare professionals, particularly in home-based care, face dilemmas between adhering to care ideals and meeting external demands. Although they strive to uphold ethical care standards, they must deal with patients’ needs, cooperation with colleagues and management guidelines. Home-based care is an essential part of healthcare services in Norway, but staff struggle with high patient numbers and time management. This article focuses on how staff deal with ethical challenges related to contextual and organisational constraints. An ethnographic fieldwork in three municipalities in South-East Norway. The first author conducted three to four months of participant observation in each municipality. In addition, she conducted in-depth interviews with key informants in two municipalities and a focus group interview with seven home-based care workers in one municipality. The data was analysed by using a reflexive thematic analysis. Staff in home-based care are frequently more loyal to the patient than to the system and to their own needs. To provide good care, all informants disregarded the patient’s formal decision, i.e. they provided more care than the formalised decision stipulated. To prioritise beneficence to patients, informants also disregarded some of the rules applicable in home-based care. In addition, staff accepted risks to their own safety and health to provide care in the patient’s home. The loyalty of home-based care staff to their patients can go beyond their loyalty to the rules of the system and even their own safety. This commitment might be attributed to a sense of doing meaningful work, to providing relationship-based and individualised care, and to strong moral courage. However, the staff’s emphasis on flexibility and individualised care also brings challenges related to unclear boundaries related to patient care.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142224819","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Min Jae Kim, Dong Eun Lee, Jong Kun Kim, In Hwan Yeo, Haewon Jung, Jung Ho Kim, Tae Chang Jang, Sang-Hun Lee, Jinwook Park, Deokhyeon Kim, Hyun Wook Ryoo
{"title":"Impact of the life-sustaining treatment decision act on organ donation in out-of-hospital cardiac arrests in South Korea: a multi-centre retrospective study.","authors":"Min Jae Kim, Dong Eun Lee, Jong Kun Kim, In Hwan Yeo, Haewon Jung, Jung Ho Kim, Tae Chang Jang, Sang-Hun Lee, Jinwook Park, Deokhyeon Kim, Hyun Wook Ryoo","doi":"10.1186/s12910-024-01090-4","DOIUrl":"10.1186/s12910-024-01090-4","url":null,"abstract":"<p><strong>Background: </strong>The demand for organ transplants, both globally and in South Korea, substantially exceeds the supply, a situation that might have been aggravated by the enactment of the Life-Sustaining Treatment Decision Act (LSTDA) in February 2018. This legislation may influence emergency medical procedures and the availability of organs from brain-dead donors. This study aimed to assess LSTDA's impact, introduced in February 2018, on organ donation status in out-of-hospital cardiac arrest (OHCA) patients in a metropolitan city and identified related factors.</p><p><strong>Methods: </strong>We conducted a retrospective analysis of a regional cardiac arrest registry. This study included patients aged 16 or older with cardiac arrest and a cerebral performance category (CPC) score of 5 from January 2015 to December 2022. The exclusion criteria were CPC scores of 1-4, patients under 16 years, and patients declared dead or transferred from emergency departments. Logistic regression analysis was used to analyse factors affecting organ donation.</p><p><strong>Results: </strong>Of the 751 patients included in this study, 47 were organ donors, with a median age of 47 years. Before the LSTDA, there were 30 organ donations, which declined to 17 after its implementation. In the organ donation group, the causes of cardiac arrest included medical (34%), hanging (46.8%), and trauma (19.2%). The adjusted odds ratio for organ donation before the LSTDA implementation was 6.12 (95% CI 3.09-12.12), with non-medical aetiology as associated factors.</p><p><strong>Conclusion: </strong>The enactment of the LSTDA in 2018 in South Korea may be linked to reduced organ donations among patients with OHCA, underscoring the need to re-evaluate the medical and legal aspects of organ donation, especially considering end-of-life care decisions.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11367808/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142121235","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}
Anamaria Malešević, Mária Kolesárová, Anto Čartolovni
{"title":"Encompassing trust in medical AI from the perspective of medical students: a quantitative comparative study.","authors":"Anamaria Malešević, Mária Kolesárová, Anto Čartolovni","doi":"10.1186/s12910-024-01092-2","DOIUrl":"10.1186/s12910-024-01092-2","url":null,"abstract":"<p><strong>Background: </strong>In the years to come, artificial intelligence will become an indispensable tool in medical practice. The digital transformation will undoubtedly affect today's medical students. This study focuses on trust from the perspective of three groups of medical students - students from Croatia, students from Slovakia, and international students studying in Slovakia.</p><p><strong>Methods: </strong>A paper-pen survey was conducted using a non-probabilistic convenience sample. In the second half of 2022, 1715 students were surveyed at five faculties in Croatia and three in Slovakia.</p><p><strong>Results: </strong>Specifically, 38.2% of students indicated familiarity with the concept of AI, while 44.8% believed they would use AI in the future. Patient readiness for the implementation of technologies was mostly assessed as being low. More than half of the students, 59.1%, believe that the implementation of digital technology (AI) will negatively impact the patient-physician relationship and 51,3% of students believe that patients will trust physicians less. The least agreement with the statement was observed among international students, while a higher agreement was expressed by Slovak and Croatian students 40.9% of Croatian students believe that users do not trust the healthcare system, 56.9% of Slovak students agree with this view, while only 17.3% of international students share this opinion. The ability to explain to patients how AI works if they were asked was statistically significantly different for the different student groups, international students expressed the lowest agreement, while the Slovak and Croatian students showed a higher agreement.</p><p><strong>Conclusion: </strong>This study provides insight into medical students' attitudes from Croatia, Slovakia, and international students regarding the role of artificial intelligence (AI) in the future healthcare system, with a particular emphasis on the concept of trust. A notable difference was observed between the three groups of students, with international students differing from their Croatian and Slovak colleagues. This study also highlights the importance of integrating AI topics into the medical curriculum, taking into account national social & cultural specificities that could negatively impact AI implementation if not carefully addressed.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11367737/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142121234","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}
Ah Ra Lee, Dongjun Koo, Il Kon Kim, Eunjoo Lee, Sooyoung Yoo, Ho-Young Lee
{"title":"Opportunities and challenges of a dynamic consent-based application: personalized options for personal health data sharing and utilization.","authors":"Ah Ra Lee, Dongjun Koo, Il Kon Kim, Eunjoo Lee, Sooyoung Yoo, Ho-Young Lee","doi":"10.1186/s12910-024-01091-3","DOIUrl":"10.1186/s12910-024-01091-3","url":null,"abstract":"<p><strong>Background: </strong>The principles of dynamic consent are based on the idea of safeguarding the autonomy of individuals by providing them with personalized options to choose from regarding the sharing and utilization of personal health data. To facilitate the widespread introduction of dynamic consent concepts in practice, individuals must perceive these procedures as useful and easy to use. This study examines the user experience of a dynamic consent-based application, in particular focusing on personalized options, and explores whether this approach may be useful in terms of ensuring the autonomy of data subjects in personal health data usage.</p><p><strong>Methods: </strong>This study investigated the user experience of MyHealthHub, a dynamic consent-based application, among adults aged 18 years or older living in South Korea. Eight tasks exploring the primary aspects of dynamic consent principles-including providing consent, monitoring consent history, and managing personalized options were provided to participants. Feedback on the experiences of testing MyHealthHub was gathered via multiple-choice and open-ended questionnaire items.</p><p><strong>Results: </strong>A total of 30 participants provided dynamic consent through the MyHealthHub application. Most participants successfully completed all the provided tasks without assistance and regarded the personalized options favourably. Concerns about the security and reliability of the digital-based consent system were raised, in contrast to positive responses elicited in other aspects, such as perceived usefulness and ease of use.</p><p><strong>Conclusions: </strong>Dynamic consent is an ethically advantageous approach for the sharing and utilization of personal health data. Personalized options have the potential to serve as pragmatic safeguards for the autonomy of individuals in the sharing and utilization of personal health data. Incorporating the principles of dynamic consent into real-world scenarios requires remaining issues, such as the need for powerful authentication mechanisms that bolster privacy and security, to be addressed. This would enhance the trustworthiness of dynamic consent-based applications while preserving their ethical advantages.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11365279/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142115003","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}
{"title":"Compromised informed consent due to functional health literacy challenges in Chinese hospitals.","authors":"Dangui Zhang, Zhilin Hu, Zhuojia Wu, Ting Huang, Tingting Huang, Junhao Liu, Hongkun Sun, William Ba-Thein","doi":"10.1186/s12910-024-01089-x","DOIUrl":"10.1186/s12910-024-01089-x","url":null,"abstract":"<p><strong>Background: </strong>Medical informed consent stands as an ethical and legal requisite preceding any medical intervention. Hospitalized patients face functional health literacy (FHL) challenges when dealing with informed consent forms (ICFs). The legitimacy of ICFs and informed consent procedures in China remains substantially undisclosed. The study's aim was to investigate if Chinese patients have adequate FHL to be truly informed before providing medical consent.</p><p><strong>Methods: </strong>In this cross-sectional, structured interview-based study, FHL was assessed within the context of the informed consent scenarios in two teaching hospitals (a 1500-bed general tertiary hospital and a 700-bed cancer hospital) affiliated with Shantou University Medical College. Twenty-seven patients admitted across clinical departments, along with their relatives (n = 59), were enrolled in the study after obtaining informed consent. The participants underwent a three-step assessment with two selected ICFs -teach-back skills, perceived understanding (perception), and informed knowledge (cognizance), with each component carrying a maximum score of 10. Data were analyzed with SPSS (version 22.0) for descriptive and inferential statistics, with consideration of significant P values as < 0.05.</p><p><strong>Results: </strong>The median age (IQR and range) of participants was 35.5 (28 - 49 and 13 - 74) years. Most participants had only high school education (24.4%, 21/86) or below high school education (47.7%, 41/86). The median score (IQR) of FHL assessments-teach-back, perception, and cognizance-was 4.0 (2.5, 5.8), 8.0 (6.8, 8.8), and 6.5 (5.5, 8.0) out of 10, respectively. A moderate correlation was observed between the scores of cognizance and teach-back (r = 0.359, P = 0.002) or perception (r = 0.437, P < 0.001). Multivariate linear regression analysis predicted being a patient and having lower education levels as independent risk factors of inadequate FHL (Ps = 0.001). Lack of patient-centeredness in ICFs, time constraints, and poor clinical communication were identified as barriers impeding informed consent.</p><p><strong>Conclusions: </strong>This study demonstrates inadequacy in personal FHL and impaired organizational HL, resulting in compromised informed consent in Chinese teaching hospitals. As a remedy, we propose improving the quality of ICFs and institutionally mandated outcome-focused training on informed consent for all concerned clinicians to enhance medical ethics, ensure quality health care, address patient values, and mitigate potential medical conflicts.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11342605/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142047559","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}
{"title":"Issues and implications of the life-sustaining treatment decision act: comparing the data from the survey and clinical data of inpatients at the end-of-life process.","authors":"Eunjeong Song, Dongsoon Shin, Jooseon Lee, Seonyoung Yun, Minjeong Eom, Suhee Oh, Heejung Lee, Jiwan Lee, Rhayun Song","doi":"10.1186/s12910-024-01088-y","DOIUrl":"10.1186/s12910-024-01088-y","url":null,"abstract":"<p><strong>Background: </strong>Health professionals had difficulty choosing the right time to discuss life-sustaining treatments (LSTs) since the Korean Act was passed in 2018.</p><p><strong>Objective: </strong>This study aimed to understand how patients decide to undergo LSTs in clinical practice and to compare the perceptions of these decisions among health professionals, patients, and families with suggestions to support the self-directed decisions of patients.</p><p><strong>Research design: </strong>A retrospective observational study with electronic medical records (EMRs) and a descriptive survey was used.</p><p><strong>Methods: </strong>The data obtained from the EMRs included all adult patients who died in end-of-life care at a university hospital in 2021. We also conducted a survey of 214 health professionals and 100 patients and their families (CNUH IRB approval no. 2022-07-006).</p><p><strong>Results: </strong>Based on the EMR data of 916 patients in end-of-life care, 78.4% signed do-not-attempt-resuscitation consents, 5.6% completed the documents for LSTs, and 10.2% completed both forms. LST decisions were mostly made by family members (81.5%). Most survey participants agreed that meaningless LSTs should be suspended, and the decision should be made by patients. Patients and family members (42-56%) and health professionals (56-58%) recommended discussing LST suspension when the patient is still conscious but with predicted deterioration of their condition. The suffering experienced by the patient was considered to be a priority by most patients (58%) and families (54%) during the decision-making process, while health professionals considered \"the possibility of the patient's recovery\" to be the highest priority (43-55%).</p><p><strong>Conclusions: </strong>There is still a significant discrepancy in the perceptions of LST decisions among health professionals, patients, and their families despite high awareness of the Act. This situation makes it challenging to implement the Act to ensure respect for the rights of patients to self-determination and dignified end-of-life. Further effort is needed to improve the awareness of LSTs and to clarify the ambiguity of document preparation timing.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11331642/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142005931","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}
Georg Starke, Tugba Basaran Akmazoglu, Annalisa Colucci, Mareike Vermehren, Amanda van Beinum, Maria Buthut, Surjo R Soekadar, Christoph Bublitz, Jennifer A Chandler, Marcello Ienca
{"title":"Qualitative studies involving users of clinical neurotechnology: a scoping review.","authors":"Georg Starke, Tugba Basaran Akmazoglu, Annalisa Colucci, Mareike Vermehren, Amanda van Beinum, Maria Buthut, Surjo R Soekadar, Christoph Bublitz, Jennifer A Chandler, Marcello Ienca","doi":"10.1186/s12910-024-01087-z","DOIUrl":"10.1186/s12910-024-01087-z","url":null,"abstract":"<p><strong>Background: </strong>The rise of a new generation of intelligent neuroprostheses, brain-computer interfaces (BCI) and adaptive closed-loop brain stimulation devices hastens the clinical deployment of neurotechnologies to treat neurological and neuropsychiatric disorders. However, it remains unclear how these nascent technologies may impact the subjective experience of their users. To inform this debate, it is crucial to have a solid understanding how more established current technologies already affect their users. In recent years, researchers have used qualitative research methods to explore the subjective experience of individuals who become users of clinical neurotechnology. Yet, a synthesis of these more recent findings focusing on qualitative methods is still lacking.</p><p><strong>Methods: </strong>To address this gap in the literature, we systematically searched five databases for original research articles that investigated subjective experiences of persons using or receiving neuroprosthetics, BCIs or neuromodulation with qualitative interviews and raised normative questions.</p><p><strong>Results: </strong>36 research articles were included and analysed using qualitative content analysis. Our findings synthesise the current scientific literature and reveal a pronounced focus on usability and other technical aspects of user experience. In parallel, they highlight a relative neglect of considerations regarding agency, self-perception, personal identity and subjective experience.</p><p><strong>Conclusions: </strong>Our synthesis of the existing qualitative literature on clinical neurotechnology highlights the need to expand the current methodological focus as to investigate also non-technical aspects of user experience. Given the critical role considerations of agency, self-perception and personal identity play in assessing the ethical and legal significance of these technologies, our findings reveal a critical gap in the existing literature. This review provides a comprehensive synthesis of the current qualitative research landscape on neurotechnology and the limitations thereof. These findings can inform researchers on how to study the subjective experience of neurotechnology users more holistically and build patient-centred neurotechnology.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323440/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141977335","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}
Dave Bovens, Eva van Baarle, Kirsten Ziesemer, Bert Molewijk
{"title":"The ethical dimension of personal health monitoring in the armed forces: a scoping review.","authors":"Dave Bovens, Eva van Baarle, Kirsten Ziesemer, Bert Molewijk","doi":"10.1186/s12910-024-01086-0","DOIUrl":"10.1186/s12910-024-01086-0","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-08-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11316322/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141914668","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}
Mayi Mayega Nanyonga, Paul Kutyabami, Olivia Kituuka, Nelson K Sewankambo
{"title":"Exploration of clinical ethics consultation in Uganda: a case study of Uganda Cancer Institute.","authors":"Mayi Mayega Nanyonga, Paul Kutyabami, Olivia Kituuka, Nelson K Sewankambo","doi":"10.1186/s12910-024-01085-1","DOIUrl":"10.1186/s12910-024-01085-1","url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-08-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11312825/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141914667","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}
Catherine El Ashkar, Rima Nakkash, Amal Matar, Jihad Makhoul
{"title":"Behind the scenes of research ethics committee oversight: a qualitative research study with committee chairs in the Middle East and North Africa region.","authors":"Catherine El Ashkar, Rima Nakkash, Amal Matar, Jihad Makhoul","doi":"10.1186/s12910-024-01083-3","DOIUrl":"10.1186/s12910-024-01083-3","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11308332/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141908448","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}