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1.	Gustavsson, Martina E., et al. (author) "Being prevented from providing good care : a conceptual analysis of moral stress among health care workers during the COVID-19 pandemic" 2023 In: BMC Medical Ethics. - Stockholm : BioMed Central (BMC). - 1472-6939. ; 24:1 Journal article (peer-reviewed)abstract BackgroundHealth care workers (HCWs) are susceptible to moral stress and distress when they are faced with morally challenging situations where it is difficult to act in line with their moral standards. In times of crisis, such as disasters and pandemics, morally challenging situations are more frequent, due to the increased imbalance between patient needs and resources. However, the concepts of moral stress and distress vary and there is unclarity regarding the definitions used in the literature. This study aims to map and analyze the descriptions used by HCWs regarding morally challenging situations (moral stress) and refine a definition through conceptual analysis.MethodsQualitative data were collected in a survey of 16,044 Swedish HCWs who attended a COVID-19 online course in autumn 2020. In total, 643 free-text answers with descriptions of moral stress were analyzed through content analysis.ResultsThree themes emerged from the content analysis (1) "Seeing, but being prevented to act; feeling insufficient/inadequate and constrained in the profession," (2) "Someone or something hindered me; organizational structures as an obstacle," and (3) "The pandemic hindered us; pandemic-related obstacles." The three themes correspond to the main theme, "Being prevented from providing good care."DiscussionThe main theme describes moral stress as various obstacles to providing good care to patients in need and acting upon empathic ability within the professional role. The themes are discussed in relation to established definitions of moral stress and are assessed through conceptual analysis. A definition of moral stress was refined, based on one of the established definitions.ConclusionsOn the basis of the study results and conceptual analysis, it is argued that the presented definition fulfils certain conditions of adequacy. It is essential to frame the concept of moral stress, which has been defined in different ways in different disciplines, in order to know what we are talking about and move forward in developing prevention measures for the negative outcomes of this phenomenon.
2.	Hansson, Mats G, et al. (author) Ethics takes time, but not that long 2007 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 8, s. 6- Journal article (peer-reviewed)abstract BACKGROUND: Time and communication are important aspects of the medical consultation. Physician behavior in real-life pediatric consultations in relation to ethical practice, such as informed consent (provision of information, understanding), respect for integrity and patient autonomy (decision-making), has not been subjected to thorough empirical investigation. Such investigations are important tools in developing sound ethical praxis. METHODS: 21 consultations for inguinal hernia were video recorded and observers independently assessed global impressions of provision of information, understanding, respect for integrity, and participation in decision making. The consultations were analyzed for the occurrence of specific physician verbal and nonverbal behaviors and length of time in minutes. RESULTS: All of the consultations took less than 20 minutes, the majority consisting of 10 minutes or less. Despite this narrow time frame, we found strong and consistent association between increasing time and higher ratings on all components of ethical practice: information, (beta = .43), understanding (beta = .52), respect for integrity (beta = .60), and decision making (beta = .43). Positive nonverbal behaviors by physicians during the consultation were associated particularly with respect for integrity (beta =.36). Positive behaviors by physicians during the physical examination were related to respect for children's integrity. CONCLUSION: Time was of essence for the ethical encounter. Further, verbal and nonverbal positive behaviors by the physicians also contributed to higher ratings of ethical aspects. These results can help to improve quality of ethical practice in pediatric settings and are of relevance for teaching and policy makers.
3.	Praestegaard, Jeanette, et al. (author) The perceptions of danish physiotherapists on the ethical issues related to the physiotherapist-patient relationship during the first session : a phenomenological approach 2011 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 12 Journal article (peer-reviewed)abstract Background: In the course of the last four decades, the profession of physiotherapy has progressively expanded its scope of responsibility and its focus on professional autonomy and evidence-based clinical practice. To preserve professional autonomy, it is crucial for the physiotherapy profession to meet society's expectations and demands of professional competence as well as ethical competence. Since it is becoming increasingly popular to choose a carrier in private practice in Denmark this context constitutes the frame of this study. Physiotherapy in private practice involves mainly a meeting between two partners: the physiotherapist and the patient. In the meeting, power asymmetry between the two partners is a condition that the physiotherapist has to handle. The aim of this study was to explore whether ethical issues rise during the first physiotherapy session discussed from the perspective of the physiotherapists in private practice. Methods: A qualitative approach was chosen and semi-structured interviews with 21 physiotherapists were carried out twice and analysed by using a phenomenological framework. Results: Four descriptive themes emerged: general reflections on ethics in physiotherapy; the importance of the first physiotherapy session; the influence of the clinical environment on the first session and; reflections and actions upon beneficence towards the patient within the first session. The results show that the first session and the clinical context in private practice are essential from an ethical perspective. Conclusions: Ethical issues do occur within the first session, the consciousness about ethical issues differs in Danish physiotherapy private practice, and reflections and acts are to a lesser extent based on awareness of ethical theories, principles and ethical guidelines. Beneficence towards the patient is a fundamental aspect of the physiotherapists' understanding of the first session. However, if the physiotherapist lacks a deeper ethical awareness, the physiotherapist may reason and/or act ethically to a varying extent: only an ethically conscious physiotherapist will know when he or she reflects and acts ethically. Further exploration of ethical issues in private practice is recommendable, and as management policy is deeply embedded within the Danish public sector there are reasons to explore public contexts of physiotherapy as well.
4.	Fischer Grönlund, Catarina, et al. (author) Feeling trapped and being torn : Physicians' narratives about ethical dilemmas in hemodialysis care that evoke a troubled conscience. 2011 In: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 12 Journal article (peer-reviewed)abstract BACKGROUND: This study is part of a major study about difficulties in communicating ethical problems within and among professional groups working in hemodialysis care. Describing experiences of ethically difficult situations that induce a troubled conscience may raise consciousness about ethical problems and thereby open the way to further reflection. The aim of this study was to illuminate the meanings of being in ethically difficult situations that led to the burden of a troubled conscience, as narrated by physicians working in dialysis care.METHOD: A phenomenological hermeneutic method was used to analyze the transcribed narrative interviews with five physicians who had varying lengths of experience in nephrology.RESULTS: The analysis shows that physicians working in hemodialysis care suffered from a troubled conscience when they felt torn by conflicting demands and trapped in irresolution. They faced ethical dilemmas where they were forced to make crucial decisions about life or death, or to prioritize when squeezed between time restraints and professional and personal demands. In these ethical dilemmas the physicians avoided arousing conflicts, were afraid of using their authority, were burdened by moral responsibility and felt devalued and questioned about their way of handling the situation. The findings point to another way of encountering ethical dilemmas, being guided by their conscience. This mean sharing the agony of deciding how to act, being brave enough to bring up the crucial problem, feeling certain that better ways of acting have not been overlooked, being respected and confirmed regarding decisions made.CONCLUSION: The meanings of being in ethically difficult situations that led to the burden of a troubled conscience in those working in hemodialysis care, indicate the importance of increasing the level of communication within and among various professional groups - to transform being burdened by a troubled conscience into using conscience as a guide - in situations where no way of solving the problem seems to be good.
5.	Juth, N, et al. (author) Are there morally relevant differences between hymen restoration and bloodless treatment for Jehovah's Witnesses? 2014 In: BMC medical ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 15, s. 89- Journal article (peer-reviewed)
6.	London, Leslie, et al. (author) Ethics in occupational health : deliberations of an international workgroup addressing challenges in an African context 2014 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 15, s. 48- Journal article (peer-reviewed)abstract Background: International codes of ethics play an important role in guiding professional practice in developing countries. In the occupational health setting, codes developed by international agencies have substantial import on protecting working populations from harm. This is particularly so under globalisation which has transformed processes of production in fundamental ways across the globe. As part of the process of revising the Ethical Code of the International Commission on Occupational Health, an Africa Working Group addressed key challenges for the relevance and cogency of an ethical code in occupational health for an African context through an iterative consultative process. Discussion: Firstly, even in the absence of strong legal systems of enforcement, and notwithstanding the value of legal institutionalisation of ethical codes, guidelines alone may offer advantageous routes to enhancing ethical practice in occupational health. Secondly, globalisation has particularly impacted on health and safety at workplaces in Africa, challenging occupational health professionals to be sensitive to, and actively redress imbalance of power. Thirdly, the different ways in which vulnerability is exemplified in the workplace in Africa often places the occupational health professional in invidious positions of Dual Loyalty. Fourth, the particular cultural emphasis in traditional African societies on collective responsibilities within the community impacts directly on how consent should be sought in occupational health practice, and how stigma should be dealt with, balancing individual autonomy with ideas of personhood that are more collective as in the African philosophy of ubuntu. To address stigma, practitioners need to be additionally sensitive to how power imbalances at the workplace intersect with traditional cultural norms related to solidarity. Lastly, particularly in the African context, the inseparability of workplace and community means that efforts to address workplace hazards demand that actions for occupational health extend beyond just the workplace. Summary: A stronger articulation of occupational health practice with advocacy for prevention should be an ethical norm. Ethical codes should ideally harmonize and balance individual and community needs so as to provide stronger moral authority guidelines. There is a need to consider an African Charter on Bioethics as complementary and strengthening of existing codes for the region.
7.	Mamhidir, Anna-Greta, et al. (author) Ethical challenges related to elder care : high level decision-makers' experiences 2007 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 8:3 Journal article (peer-reviewed)abstract Background Few empirical studies have been found that explore ethical challenges among persons in high public positions that are responsible for elder care. The aim of this paper was to illuminate the meaning of being in ethically difficult situations related to elder care as experienced by high level decision-makers. Methods A phenomenological-hermeneutic method was used to analyse the eighteen interviews conducted with political and civil servant high level decision-makers at the municipality and county council level from two counties in Sweden. The participants worked at a planning and control as well as executive level and had both budget and quality of elder care responsibilities. Results Both ethical dilemmas and the meaning of being in ethically difficult situations related to elder care were revealed. No differences were seen between the politicians and the civil servants. The ethical dilemmas mostly concerned dealings with extensive care needs and working with a limited budget. The dilemmas were associated with a lack of good care and a lack of agreement concerning care such as vulnerable patients in inappropriate care settings, weaknesses in medical support, dissimilar focuses between the caring systems, justness in the distribution of care and deficient information. Being in ethically difficult situations was challenging. Associated with them were experiences of being exposed, having to be strategic and living with feelings such as aloneness and loneliness, uncertainty, lack of confirmation, the risk of being threatened or becoming a scapegoat and difficult decision avoidance. Conclusion The high level decision-makers feel that something worthwhile is at stake in elder care. A risk exists that older adult and decision-maker needs are not being met. The results provide further insight into the ethical challenges and reasoning found among high level decision-makers, which are important since their decisions affect older patients, relatives and caregivers, and can be useful when conducting discussions within health care organisations. Future research is suggested on how people are affected when loyalties to a position come into conflict with personal convictions. Since ethical dilemmas that confront all levels of health care organisation will persist, the concept of organisational ethics also needs further research.
8.	Mamhidir, Anna-Greta, et al. (author) Malnutrition in elder care : qualitative analysis of ethical perceptions of politicians and civil servants 2010 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 11:1 Journal article (peer-reviewed)abstract BackgroundFew studies have paid attention to ethical responsibility related to malnutrition in elder care. The aim was to illuminate whether politicians and civil servants reason about malnutrition in elder care in relation to ethical responsibility, and further about possible causes and how to address them. MethodEighteen elected politicians and appointed civil servants at the municipality and county council level from two counties in Sweden were interviewed. They worked at a planning, control and executive level, with responsibility for both the elder care budget and quality of care. Qualitative method was used for the data analysis. ResultsTwo themes emerged from their reasoning about malnutrition related to ethical responsibility. The theme assumed role involves the subthemes quality of care and costs, competent staff and govern at a distance. Old and ill patients were mentioned as being at risk for malnutrition. Caregivers were expected to be knowledgeable and stated primary responsible for providing adequate nutritional care. Extended physician responsibility was requested owing to patients' illnesses. Little was reported on the local management's role or on their own follow-up routines. The theme moral perception includes the subthemes discomfort, trust and distrust. Feelings of discomfort concerned caregivers having to work in a hurried, task-oriented manner. Trust meant that they believed for the most part that caregivers had the competence to deal appropriately with nutritional care, but they felt distrust when nutritional problems reappeared on their agenda. No differences could be seen between the politicians and civil servants. ConclusionNew knowledge about malnutrition in elder care related to ethical responsibility was illuminated by persons holding top positions. Malnutrition was stressed as an important dimension of the elder care quality. Governing at a distance meant having trust in the staff, on the one hand, and discomfort and distrust when confronted with reports of malnutrition, on the other. Distrust was directed at caregivers, because despite the fact that education had been provided, problems reappeared. Discomfort was felt when confronted with examples of poor nutritional care and indicates that the participants experienced failure in their ethical responsibility because the quality of nutritional care was at risk.
9.	Pelto-Piri, Veikko, 1959-, et al. (author) Paternalism, autonomy and reciprocity : ethical perspectives in encounters with patients in psychiatric in-patient care. 2013 In: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 14:1, s. 49- Journal article (peer-reviewed)abstract BACKGROUND: Psychiatric staff members have the power to decide the options that frame encounters with patients. Intentional as well as unintentional framing can have a crucial impact on patients' opportunities to be heard and participate in the process. We identified three dominant ethical perspectives in the normative medical ethics literature concerning how doctors and other staff members should frame interactions in relation to patients; paternalism, autonomy and reciprocity. The aim of this study was to describe and analyse statements describing real work situations and ethical reflections made by staff members in relation to three central perspectives in medical ethics; paternalism, autonomy and reciprocity.METHODS: All staff members involved with patients in seven adult psychiatric and six child and adolescent psychiatric clinics were given the opportunity to freely describe ethical considerations in their work by keeping an ethical diary over the course of one week and 173 persons handed in their diaries. Qualitative theory-guided content analysis was used to provide a description of staff encounters with patients and in what way these encounters were consistent with, or contrary to, the three perspectives.RESULTS: The majority of the statements could be attributed to the perspective of paternalism and several to autonomy. Only a few statements could be attributed to reciprocity, most of which concerned staff members acting contrary to the perspective. The result is presented as three perspectives containing eight values.Paternalism; 1) promoting and restoring the health of the patient, 2) providing good care and 3) assuming responsibility.Autonomy; 1) respecting the patient's right to self-determination and information, 2) respecting the patient's integrity and 3) protecting human rights.Reciprocity; 1) involving patients in the planning and implementation of their care and 2) building trust between staff and patients.CONCLUSIONS: Paternalism clearly appeared to be the dominant perspective among the participants, but there was also awareness of patients' right to autonomy. Despite a normative trend towards reciprocity in psychiatry throughout the Western world, identifying it proved difficult in this study. This should be borne in mind by clinics when considering the need for ethical education, training and supervision.
10.	Svantesson, Mia, 1960-, et al. (author) Outcomes of Moral Case Deliberation : the development of an evaluation instrument for clinical ethics support (the Euro-MCD) 2014 In: BMC Medical Ethics. - London : BioMed Central. - 1472-6939. ; 15 Journal article (peer-reviewed)abstract Background: Clinical ethics support, in particular Moral Case Deliberation, aims to support health care providers to manage ethically difficult situations. However, there is a lack of evaluation instruments regarding outcomes of clinical ethics support in general and regarding Moral Case Deliberation (MCD) in particular. There also is a lack of clarity and consensuses regarding which MCD outcomes are beneficial. In addition, MCD outcomes might be context-sensitive. Against this background, there is a need for a standardised but flexible outcome evaluation instrument. The aim of this study was to develop a multi-contextual evaluation instrument measuring health care providers' experiences and perceived importance of outcomes of Moral Case Deliberation.Methods: A multi-item instrument for assessing outcomes of Moral Case Deliberation (MCD) was constructed through an iterative process, founded on a literature review and modified through a multistep review by ethicists and health care providers. The instrument measures perceived importance of outcomes before and after MCD, as well as experienced outcomes during MCD and in daily work. A purposeful sample of 86 European participants contributed to a Delphi panel and content validity testing. The Delphi panel (n = 13), consisting of ethicists and ethics researchers, participated in three Delphi-rounds. Health care providers (n = 73) participated in the content validity testing through `think-aloud' interviews and a method using Content Validity Index.Results: The development process resulted in the European Moral Case Deliberation Outcomes Instrument (Euro-MCD), which consists of two sections, one to be completed before a participant's first MCD and the other after completing multiple MCDs. The instrument contains a few open-ended questions and 26 specific items with a corresponding rating/response scale representing various MCD outcomes. The items were categorised into the following six domains: Enhanced emotional support, Enhanced collaboration, Improved moral reflexivity, Improved moral attitude, Improvement on organizational level and Concrete results.Conclusions: A tentative instrument has been developed that seems to cover main outcomes of Moral Case Deliberation. The next step will be to test the Euro-MCD in a field study.
11.	Af Sandeberg, Margareta, et al. (author) To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised (MDS-R) 2017 In: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 18:14, s. 1-9 Journal article (peer-reviewed)abstract BACKGROUND: Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised (MDS-R) is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction.METHODS: The procedure included linguistic translation and cultural adaptation of MDS-R's paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care.RESULTS: To achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens.CONCLUSIONS: Translation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients.
12.	Andersson, Henrik, et al. (author) Ethics education to support ethical competence learning in healthcare : an integrative systematic review 2022 In: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 23 Research review (peer-reviewed)abstract Background: Ethical problems in everyday healthcare work emerge for many reasons and constitute threats to ethi- cal values. If these threats are not managed appropriately, there is a risk that the patient may be inflicted with moral harm or injury, while healthcare professionals are at risk of feeling moral distress. Therefore, it is essential to support the learning and development of ethical competencies among healthcare professionals and students. The aim of this study was to explore the available literature regarding ethics education that promotes ethical competence learning for healthcare professionals and students undergoing training in healthcare professions.Methods: In this integrative systematic review, literature was searched within the PubMed, CINAHL, and PsycInfo databases using the search terms ‘health personnel’, ‘students’, ‘ethics’, ‘moral’, ‘simulation’, and ‘teaching’. In total, 40 arti- cles were selected for review. These articles included professionals from various healthcare professions and students who trained in these professions as subjects. The articles described participation in various forms of ethics education. Data were extracted and synthesised using thematic analysis.Results: The review identified the need for support to make ethical competence learning possible, which in the long run was considered to promote the ability to manage ethical problems. Ethical competence learning was found to be helpful to healthcare professionals and students in drawing attention to ethical problems that they were not previ- ously aware of. Dealing with ethical problems is primarily about reasoning about what is right and in the patient’s best interests, along with making decisions about what needs to be done in a specific situation.Conclusions: The review identified different designs and course content for ethics education to support ethical competence learning. The findings could be used to develop healthcare professionals’ and students’ readiness and capabilities to recognise as well as to respond appropriately to ethically problematic work situations.
13.	Asplund, Kjell, et al. (author) Reporting ethical approval in health and social science articles : an audit of adherence to GDPR and national legislation 2021 In: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 22:1, s. 92- Journal article (peer-reviewed)abstract BACKGROUND: Previous studies have indicated that failure to report ethical approval is common in health science articles. In social sciences, the occurrence is unknown. The Swedish Ethics Review Act requests that sensitive personal data, in accordance with the EU General Data Protection Regulation (GDPR), should undergo independent ethical review, irrespective of academic discipline. We have explored the adherence to this regulation.METHODS: Using the Web of Science databases, we reviewed 600 consecutive articles from three domains (health sciences with and without somatic focus and social sciences) based on identifiable personal data published in 2020.RESULTS: Information on ethical review was lacking in 12 of 200 health science articles with somatic focus (6%), 21 of 200 health science articles with non-somatic focus (11%), and in 54 of 200 social science articles (27%; p < 0.001 vs. both groups of health science articles). Failure to report on ethical approval was more common in (a) observational than in interventional studies (p < 0.01), (b) articles with only 1-2 authors (p < 0.001) and (c) health science articles from universities without a medical school (p < 0.001). There was no significant association between journal impact factor and failure to report ethical approval.CONCLUSIONS: We conclude that reporting of research ethics approval is reasonably good, but not strict, in health science articles. Failure to report ethical approval is about three times more frequent in social sciences compared to health sciences. Improved adherence seems needed particularly in observational studies, in articles with few authors and in social science research.
14.	Bell, Jessica, et al. (author) Challenges and opportunities for ELSI early career researchers 2016 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 17 Journal article (peer-reviewed)abstract BACKGROUND: Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications (ELSI) of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health (NIH) Human Genomic Project budget in 1990 stimulated the growth of this emerging field; ELSI research has continued to develop and is starting to emerge as a field in its own right. The evolving subject matter of ELSI research continues to raise new research questions as well as prompt re-evaluation of earlier work and a growing number of scholars working in this area now identify themselves as ELSI scholars rather than with a particular discipline.MAIN TEXT: Due to the international and interdisciplinary nature of ELSI research, scholars can often find themselves isolated from disciplinary or regionally situated support structures. We conducted a workshop with Early Career Researchers (ECRs) in Oxford, UK, and this paper discusses some of the particular challenges that were highlighted. While ELSI ECRs may face many of the universal challenges faced by ECRs, we argue that a number of challenges are either unique or exacerbated in the case of ELSI ECRs and discuss some of the reasons as to why this may be the case. We identify some of the most pressing issues for ELSI ECRs as: interdisciplinary angst and expertise, isolation from traditional support structures, limited resources and funding opportunities, and uncertainty regarding how research contributions will be measured. We discuss the potential opportunity to use web 2.0 technologies to transform academic support structures and address some of the challenges faced by ELSI ECRs, by helping to facilitate mentoring and support, access to resources and new accreditation metrics.CONCLUSION: As our field develops it is crucial for the ELSI community to continue looking forward to identify how emerging digital solutions can be used to facilitate the international and interdisciplinary research we perform, and to offer support for those embarking on, progressing through, and transitioning into an ELSI research career.
15.	Bertilsson, Emilie, et al. (author) Usage of do-not-attempt-to-resuscitate orders in a Swedish community hospital : patient involvement, documentation and compliance 2020 In: BMC Medical Ethics. - : Springer. - 1472-6939. ; 21:1, s. 1-6 Journal article (peer-reviewed)abstract Background: To characterize patients dying in a community hospital with or without attempting cardiopulmonary resuscitation (CPR) and to describe patient involvement in, documentation of, and compliance with decisions on resuscitation (Do-not-attempt-to-resuscitate orders; DNAR).Methods: All patients who died in Kalmar County Hospital during January 1, 2016 until December 31, 2016 were included. All information from the patients’ electronic chart was analysed.Results: Of 660 patients (mean age 77.7 ± 12.1 years; range 21–101; median 79; 321 (48.6%) female), 30 (4.5%) were pronounced dead in the emergency department after out-of-hospital CPR. Of the remaining 630 patients a DNAR order had been documented in 558 patients (88.6%). Seventy had no DNAR order and 2 an explicit order to do CPR. In 43 of these 70 patients CPR was unsuccessfully attempted while the remaining 27 patients died without attempting CPR. In 2 of 558 (0.36%) patients CPR was attempted despite a DNAR order in place. In 412 patients (73.8%) the DNAR order had not been discussed with neither patient nor family/friends. Moreover, in 75 cases (13.4%) neither patient nor family/friends were even informed about the decision on code status.Conclusions: In general, a large percentage of patients in our study had a DNAR order in place (88.6%). However, 27 patients (4.3%) died without CPR attempt or DNAR order. DNAR orders had not been discussed with the patient/surrogate in almost three fourths of the patients. Further work has to be done to elucidate the barriers to discussions of CPR decisions with the patient.
16.	Bjork, J, et al. (author) 'Are smokers less deserving of expensive treatment? A randomised controlled trial that goes beyond official values' 2015 In: BMC medical ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 16, s. 28- Journal article (peer-reviewed)
17.	Bjork, J, et al. (author) "Right to recommend, wrong to require"- an empirical and philosophical study of the views among physicians and the general public on smoking cessation as a condition for surgery 2018 In: BMC medical ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 19:1, s. 2- Journal article (peer-reviewed)
18.	Bremer, Anders, Docent, 1957-, et al. (author) Do-not-attempt-resuscitation orders : attitudes, perceptions and practices of Swedish physicians and nurses 2021 In: BMC Medical Ethics. - : BioMed Central (BMC). - 1472-6939. ; 22:1 Journal article (peer-reviewed)abstract Background: The values and attitudes of healthcare professionals influence their handling of ‘do-not-attempt- resuscitation’ (DNAR) orders. The aim of this study was a) to describe attitudes, perceptions and practices among Swedish physicians and nurses towards discussing cardiopulmonary resuscitation and DNAR orders with patients and their relatives, and b) to investigate if the physicians and nurses were familiar with the national ethical guidelines for cardiopulmonary resuscitation.Methods: This was a retrospective observational study based on a questionnaire and was conducted at 19 wards in two regional hospitals and one county hospital.Results: 210 physicians and 312 nurses (n = 522) responded to the questionnaire. Every third (35%) professional had read the guidelines with a lower proportion of physicians (29%) compared to nurses (38%). Around 40% of patients had the opportunity or ability to participate in the DNAR discussion. The DNAR decision was discussed with 38% of patients and the prognosis with 46%. Of the patients who were considered to have the ability to participate in the dis- cussion, 79% did so. The majority (81%) of physicians and nurses believed that patients should always be asked about their preferences before a DNAR decision was made.Conclusions: Swedish healthcare professionals take a patient’s autonomy into account regarding DNAR decisions. Nevertheless, as 50% of patients were considered unable to participate in the DNAR discussion, questions remain about the timing of patient participation and whether more discussions could have been conducted earlier. Given the uncertainty about timing, the majority of patients deemed competent participated in DNAR discussions.
19.	Brüggemann, Jelmer, et al. (author) A first online intervention to increase patients’ perceived ability to act in situations of abuse in health care : reports of a Swedish pre-post study 2015 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 16 Journal article (peer-reviewed)abstract BackgroundEfforts to counteract abuse in health care, defined as patient-experienced abuse, have mainly focused on interventions among caregivers. This study is the first to test an online intervention focusing on how patients can counteract such abuse. The intervention aimed at increasing patients’ intention and perceived ability to act in future situations where they risk experiencing abuse.MethodsParticipants were recruited through a nephrology clinic in Sweden. The intervention consisted of an online program that aimed to stimulate patients to think of possible actions in situations in which they risk experiencing abuse. The program comprised stories and exercises in text and comic form. The participants filled out a questionnaire immediately before and after going through the program, as well as during follow-up four to eight weeks later.ResultsForty-eight patients (39 %) participated in the study and spent, on average, 41 min responding to questions and going through the program. Both men and women, of various ages and educational backgrounds, participated. An increase in participants' self-reported ability to identify opportunities to act in a given situation was seen immediately afterwards, as well as during follow up.ConclusionThe current study suggests that it is feasible and most likely useful to a variety of patients to work with the provided material that has the aim of counteracting abuse in health care. It would be of interest to further develop ways of using comics and to test similar interventions in other health care settings.
20.	Budin-Ljosne, Isabelle, et al. (author) Dynamic Consent : a potential solution to some of the challenges of modern biomedical research 2017 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 18 Journal article (peer-reviewed)abstract Background: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. Methods: An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. Results: Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. Conclusions: Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.
21.	de Lange, DW, et al. (author) Huge variation in obtaining ethical permission for a non-interventional observational study in Europe 2019 In: BMC medical ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 20:1, s. 39- Journal article (peer-reviewed)
22.	de Snoo-Trimp, J. C., et al. (author) Moral competence, moral teamwork and moral action : the European Moral Case Deliberation Outcomes (Euro-MCD) Instrument 2.0 and its revision process 2020 In: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 21:1 Journal article (peer-reviewed)abstract BACKGROUND: Clinical Ethics Support (CES) services are offered to support healthcare professionals in dealing with ethically difficult situations. Evaluation of CES is important to understand if it is indeed a supportive service in order to inform and improve future implementation of CES. Yet, methods to measure outcomes of CES are scarce. In 2014, the European Moral Case Deliberation Outcomes Instrument (Euro-MCD) was developed to measure outcomes of Moral Case Deliberation (MCD). To further validate the instrument, we tested it in field studies and revised it. This paper presents the Euro-MCD 2.0 and describes the revision process.METHODS: The revision process comprised an iterative dialogue among the authors as Euro-MCD-project team, including empirical findings from six Euro-MCD field-studies and input from European experts in CES and theory. Empirical findings contained perceptions and experiences of MCD outcomes among healthcare professionals who participated in MCDs in various settings in Norway, Sweden and the Netherlands. Theoretical viewpoints on CES, literature on goals of CES and MCD and ethics theory guided the interpretation of the empirical findings and final selection of MCD outcomes.RESULTS: The Euro-MCD 2.0 Instrument includes three domains: Moral Competence, Moral Teamwork and Moral Action. Moral Competence consists of items about moral sensitivity, analytical skills and virtuous attitude. Moral Teamwork includes open dialogue and supportive relationships and Moral Action refers to moral decision-making and responsible care. During the revision process, we made decisions about adding and reformulating items as well as decreasing the number from 26 to 15 items. We also altered the sentence structure of items to assess the current status of outcomes (e.g. 'now') instead of an assumed improvement over time (e.g. 'better') and we omitted the question about perceived importance.CONCLUSIONS: The Euro-MCD 2.0 is shorter, less complex and more strongly substantiated by an integration of empirical findings, theoretical reflections and dialogues with participants and experts. Use of the Euro-MCD 2.0 will facilitate evaluation of MCD and can thereby monitor and foster implementation and quality of MCD. The Euro-MCD 2.0 will strengthen future research on evaluation of outcomes of MCD.
23.	Drevin, Jennifer, et al. (author) Patients' views on using human embryonic stem cells to treat Parkinson's disease : an interview study 2022 In: BMC Medical Ethics. - : Springer Nature. - 1472-6939. ; 23 Journal article (peer-reviewed)abstract Background: Human embryonic stem cells (hESC) as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson's disease (PD). Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending.Objective: To Investigate the perspectives and concerns of patients with PD, patients being the directly concerned stakeholders in the ethical discussion.Methods: Qualitative semi-structured interviews related to this new therapy in seventeen patients from two Swedish cities.Results: The participants expressed various interests related to the use of human embryos for development of medicinal therapies; however, overall, they were positive towards the use of hESC for treatment of PD. It was deemed important that the donating woman or couple made the choice to donate embryos voluntarily. Furthermore, there were concerns that the industry does not always prioritise the patient over profit; thus, transparency was seen as important.
24.	Edvardsson, Kristina, et al. (author) Ultrasound's 'window on the womb' brings ethical challenges for balancing maternal and fetal health interests : obstetricians' experiences in Australia 2015 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 16 Journal article (peer-reviewed)abstract BACKGROUND: Obstetric ultrasound has become a significant tool in obstetric practice, however, it has been argued that its increasing use may have adverse implications for women's reproductive freedom. This study aimed to explore Australian obstetricians' experiences and views of the use of obstetric ultrasound both in relation to clinical management of complicated pregnancy, and in situations where maternal and fetal health interests conflict.METHODS: A qualitative study was undertaken as part of the CROss-Country Ultrasound Study (CROCUS). Interviews were held in November 2012 with 14 obstetricians working in obstetric care in Victoria, Australia. Data were analysed using qualitative content analysis.RESULTS: One overall theme emerged from the analyses: The ethical challenge of balancing maternal and fetal health interests, built on four categories: First, Encountering maternal altruism' described how pregnant women's often 'altruistic' position in relation to the health and wellbeing of the fetus could create ethical challenges in obstetric management, particularly with an increasing imbalance between fetal benefits and maternal harms. Second, 'Facing shifting attitudes due to visualisation and medico-technical advances' illuminated views that ultrasound and other advances in care have contributed to a shift in what weight to give maternal versus fetal welfare, with increasing attention directed to the fetus. Third, 'Guiding expectant parents in decision-making' described the difficult task of facilitating informed decision-making in situations where maternal and fetal health interests were not aligned, or in situations characterised by uncertainty. Fourth, 'Separating private from professional views' illuminated divergent views on when the fetus can be regarded as a person. The narratives indicated that the fetus acquired more consideration in decision-making the further the gestation progressed. However, there was universal agreement that obstetricians could never act on fetal grounds without the pregnant woman's consent.CONCLUSIONS: This study suggests that medico-technical advances such as ultrasound have set the scene for increasing ethical dilemmas in obstetric practice. The obstetricians interviewed had experienced a shift in previously accepted views about what weight to give maternal versus fetal welfare. As fetal diagnostics and treatment continue to advance, how best to protect pregnant women's right to autonomy requires careful consideration and further investigation.
25.	Farisco, Michele, et al. (author) Indicators and criteria of consciousness : ethical implications for the care of behaviourally unresponsive patients 2022 In: BMC Medical Ethics. - : Springer Nature. - 1472-6939. ; 23:30 Journal article (peer-reviewed)abstract BackgroundAssessing consciousness in other subjects, particularly in non-verbal and behaviourally disabled subjects (e.g., patients with disorders of consciousness), is notoriously challenging but increasingly urgent. The high rate of misdiagnosis among disorders of consciousness raises the need for new perspectives in order to inspire new technical and clinical approaches.Main bodyWe take as a starting point a recently introduced list of operational indicators of consciousness that facilitates its recognition in challenging cases like non-human animals and Artificial Intelligence to explore their relevance to disorders of consciousness and their potential ethical impact on the diagnosis and healthcare of relevant patients. Indicators of consciousness mean particular capacities that can be deduced from observing the behaviour or cognitive performance of the subject in question (or from neural correlates of such performance) and that do not define a hard threshold in deciding about the presence of consciousness, but can be used to infer a graded measure based on the consistency amongst the different indicators. The indicators of consciousness under consideration offer a potential useful strategy for identifying and assessing residual consciousness in patients with disorders of consciousness, setting the theoretical stage for an operationalization and quantification of relevant brain activity.ConclusionsOur heuristic analysis supports the conclusion that the application of the identified indicators of consciousness to its disorders will likely inspire new strategies for assessing three very urgent issues: the misdiagnosis of disorders of consciousness; the need for a gold standard in detecting consciousness and diagnosing its disorders; and the need for a refined taxonomy of disorders of consciousness.
26.	Fischer Grönlund, Catarina, 1962-, et al. (author) Psychometric testing of the Swedish version of the measure of moral distress for healthcare professionals (MMD-HP) 2023 In: BMC Medical Ethics. - : BioMed Central (BMC). - 1472-6939. ; 24:1 Journal article (peer-reviewed)abstract Background: Moral distress has been described as moral constraints and uncertainty connected with guilty feelings of being unable to give care in accordance with one's values for good care. Various instruments to measure moral distress have been developed. The instrument measure of moral distress for healthcare professionals (MMD-HP) was developed to capture the experience and frequency of moral distress among various healthcare professionals. The MMD-HP has been translated and culturally adapted into the Swedish language and context; however, the translation has not been validated. Therefore, this study aimed to evaluate the validity and reliability of the Swedish version of the measure of moral distress for healthcare professionals (MMD-HP).Methods: Eighty-nine staff from various professions at a hospital in northern Sweden participated in the study. A confirmatory factor analysis was performed to check for consistency with the original version of the MMD-HP. To evaluate internal consistency, Cronbach's alpha was calculated for each domain and for the scale as a whole.Results: The scale as a whole showed a Cronbach's alpha of 0.96, with a range between 0.84 and 0.90 between the different subscales. A confirmatory factor analysis based on the original four-factor structure showed good fit indices with a χ2/df of 0.67, CFI at 1.00, TLI at 1.02 and NFI at 0.97. RMSEA was at 0.00, and SRMR was at 0.08. A comparison of the total score between three equally large groups of years of experience at the present workplace showed no significant differences (F = 0.09, df = 2, p = 0.912).Conclusions: We found that the Swedish version of the MMD-HP has shown validity and reliability for use in a Swedish context for measuring moral distress among health personnel.
27.	Fischer Grönlund, Catarina, 1962-, et al. (author) The Swedish translation and cultural adaptation of the Measure of Moral Distress for Healthcare Professionals (MMD-HP) 2021 In: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 22:1 Journal article (peer-reviewed)abstract BACKGROUND: Moral distress has been described as an emotionally draining condition caused by being prevented from providing care according to one's convictions. Studies have described the impact of moral distress on healthcare professionals, their situations and experiences. The Measure of Moral Distress for Healthcare Professionals (MMD-HP) is a questionnaire that measures moral distress experienced by healthcare professionals at three levels: patient, system and team. The aim of this project was to translate and make a cultural adaption of the MMD -HP to the Swedish context.METHODS: The questionnaire comprises 27 items, rated according to frequency and intensity on a five-point Likert scale (0-4). The procedure for translating MMD-HP followed WHO guidelines (2020). These entailed a forward translation from English to Swedish, a back translation, expert panel validation, pretesting and cognitive face-to-face interviews with 10 healthcare professionals from various professions and healthcare contexts.RESULTS: The Swedish version of MMD-HP corresponds essentially to the concept of the original version. Parts of some items' had to be adjusted or removed in order to make the item relevant and comprehensible in a Swedish context. Overall, the cognitive interviewees recognized the content of the items which generally seemed relevant and comprehensible.CONCLUSION: The Swedish version of MMD-HP could be a useful tool for measuring moral distress among healthcare professionals in a Swedish healthcare context.
28.	Frank, Catharina, 1961-, et al. (author) Ethics rounds in the ambulance service: a qualitative evaluation 2024 In: BMC Medical Ethics. - : Springer Nature. - 1472-6939. ; 25:1 Journal article (peer-reviewed)abstract BackgroundIt is a common ethical challenge for ambulance clinicians to care for patients with impaired decision-making capacities while assessing and determining the degree of decision-making ability and considering ethical values. Ambulance clinicians’ ethical competence seems to be increasingly important in coping with such varied ethical dilemmas. Ethics rounds is a model designed to promote the development of ethical competence among clinicians. While standard in other contexts, to the best of our knowledge, it has not been applied within the ambulance service context. Thus, the aim of this study was to describe ambulance clinicians’ experiences of participating in ethics rounds.MethodsThis was a qualitative descriptive study, evaluating an intervention. Data were collected through sixteen interviews with ambulance clinicians who had participated in an intervention involving ethics rounds. The analysis was performed by use of content analysis.ResultsTwo themes describe the participants’ experiences: (1) Reflecting freely within a given framework, and (2) Being surprised by new insights. The following categories form the basis of the themes; 1a) Gentle guidance by the facilitator, 1b) A comprehensible structure, 2a) New awareness in the face of ethical problems, and 2b) Shared learning through dialogue.ConclusionIncorporating structured ethics rounds seems to create a continuous development in ethical competence that may improve the quality of care in the ambulance service. Structured guidance and facilitated group reflections offer ambulance clinicians opportunities for both personal and professional development. An important prerequisite for the development of ethical competence is a well-educated facilitator. Consequently, this type of ethics rounds may be considered a useful pedagogical model for the development of ethical competence in the ambulance service.
29.	Friedrichsen, Maria, et al. (author) Ethical challenges around thirst in end-of-life care -experiences of palliative care physicians 2023 In: BMC Medical Ethics. - : BioMed Central (BMC). - 1472-6939. ; 24:1 Journal article (peer-reviewed)abstract BackgroundThirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area.AimThe aim of this study was to explore palliative care physicians' experiences of ethical challenges in relation to thirst in terminally ill patients.MethodsA qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis.ResultsWhen presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient's autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering.ConclusionsAll physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.
30.	Grauman, Åsa, 1982-, et al. (author) Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment 2022 In: BMC Medical Ethics. - : Springer Nature. - 1472-6939. ; 23:1 Journal article (peer-reviewed)abstract Background: The use of human embryonic stem cells (ES cells) for the development of medical therapies is surrounded with moral concerns. The aim of this study was to assess the public's attitudes toward the use of ES cells for treatment of Parkinson's disease (PD) and other diseases, what factors are most important to consider when using ES cells for drug development, and if there is an association between religious beliefs and attitudes toward using ES cells for medical treatment.Methods: A randomly selected sample of the Swedish public, aged 18-87-years-old, completed an online survey (n = 467). The survey assessed socio-demographics, religious views, perceived moral status of the embryo, and attitudes toward using ES cells for medical treatment of PD and other diseases. Adjusted odds ratios (ORs) and 95% confidence intervals (CI) for positive vs. negative attitude toward using ES cells for drug development were computed using logistic regression.Results: The respondents were positive about using ES for treatment; specifically, 70% totally agreed that it is acceptable to use ES cells for treatment of PD, while 40% totally agreed that it is acceptable to use ES cells for treatment but induced pluripotent cells is just as efficient. Religion being of little importance in one's life was associated with a positive attitude toward using ES cells for treatment of PD (adjusted OR 6.39, 95% CI 2.78-14.71). The importance of being able "to access new, effective treatments against diseases that do not have any treatment available " was ranked as the most important factor to consider when using ES cells for drug development.Conclusion: Most respondents are positive about using ES cells for drug development, and making effective treatments accessible to those who do not have any. However, these attitudes are influenced by the specific disorder that the drug development is intended for, as well as the religious views and perceived moral status of the early embryo.
31.	Grauman, Åsa, 1982-, et al. (author) Perceptions on using surplus embryos for the treatment of Parkinson’s disease among the Swedish population: a qualitative study 2022 In: BMC Medical Ethics. - : Springer Nature. - 1472-6939. ; 23:1 Journal article (peer-reviewed)abstract Background: Human embryonic stem cells are currently used for developing treatment against Parkinson’s disease (PD). However, the use of ES cells is surrounded with moral concerns. Research regarding the public's attitudes can form an important basis for policymaking. The aim was to explore the perceptions of the public on using donated human embryos for developing treatment of Parkinson’s Disease.Methods: Semi-structured individual qualitative interviews were conducted with 11 members of the general population in Sweden. Interviews were analyzed with thematic content analyses.Results: Four categories and additional sub-categories; Different views on the embryo requires delicacy, Using embryos to treat Parkinson’s disease, Doing things in the right way, and Communication, media, and public opinion. In general, respondents were positive towards the usage of embryotic stem cells to treat PD, but the usage were conditioned and specific terms were demanded. Informed consent from both donors were required and delicacy and sensitivity when working with embryos were needed.Conclusion: It was perceived better to use surplus embryos to treat PD increase is than to discard them, also among those who perceived the embryo as “a potential life.” The participants raised several conditions under usage for treatment should be allowed. Even if the embryos otherwise are going to be discarded, usage requires informed consent from the donating couples.
32.	Gustavsson, Erik, et al. (author) Genetic testing for breast cancer risk, fromBRCA1/2to a seven gene panel: an ethical analysis 2020 In: BMC Medical Ethics. - : BMC. - 1472-6939. ; 21:1 Journal article (peer-reviewed)abstract Background Genetic testing is moving from targeted investigations of monogenetic diseases to broader testing that may provide more information. For example, recent health economic studies of genetic testing for an increased risk of breast cancer suggest that it is associated with higher cost-effectiveness to screen for pathogenic variants in a seven gene panel rather than the usual two gene test for variants inBRCA1andBRCA2. However, irrespective of the extent to which the screening of the panel is cost-effective, there may be ethical reasons to not screen for pathogenic variants in a panel, or to revise the way in which testing and disclosing of results are carried out. Main text In this paper we discuss the ethical aspects of genetic testing for an increased risk of breast cancer with a special focus on the ethical differences between screening for pathogenic variants inBRCA1/2and a seven gene panel. The paper identifies that the panel increases the number of secondary findings as well as the number of variants of uncertain significance as two specific issues that call for ethical reflection. Conclusions We conclude that while the problem of handling secondary findings should not be overstated with regard to the panel, the fact that the panel also generate more variants of uncertain significance, give rise to a more complex set of problems that relate to the value of health as well as the value of autonomy. Therefore, it is insufficient to claim that the seven gene panel is preferable by only referring to the higher cost effectiveness of the panel.
33.	Hansson, Sven Ove, et al. (author) Who should be tested in a pandemic? : Ethical considerations 2021 In: BMC Medical Ethics. - : Springer Nature. - 1472-6939. ; 22:1 Research review (peer-reviewed)abstract Background In the initial phase of the Covid-19 pandemic, difficult decisions had to be made on the allocation of testing resources. Similar situations can arise in future pandemics. Therefore, careful consideration of who should be tested is an important part of pandemic preparedness. We focus on four ethical aspects of that problem: how to prioritize scarce testing resources, the regulation of commercial direct-to-consumer test services, testing of unauthorized immigrants, and obligatory testing. Main text The distribution of scarce resources for testing: We emphasize the use of needs-based criteria, but also acknowledge the importance of choosing a testing strategy that contributes efficiently to stopping the overall spread of the disease. Commercial direct-to-consumer test services: Except in cases of acute scarcity, such services will in practice have to be allowed. We propose that they should be subject to regulation that ensures test quality and adequate information to users. Testing of unauthorized immigrants, their children and other people with unclear legal status: Like everyone else, these individuals may be in need of testing, and it is in society's interest to reach them with testing in order to stop the spread of the disease. A society that offers comprehensive medical services to unauthorized immigrants is in a much better position to reach them in a pandemic than a society that previously excluded them from healthcare. Obligatory testing: While there are often strong reasons for universal testing in residential areas or on workplaces, there are in most cases better ways to achieve testing coverage than to make testing mandatory. Conclusion In summary, we propose (1) decision-making primarily based on needs-based criteria, (2) strict regulation but not prohibition of direct-to-consumer test services, (3) test services offered to unauthorized immigrants, preferably as part of comprehensive medical services, and (4) broad outreach of testing services whenever possible, but in general not obligatory testing.
34.	Heidenreich, Kaja, 1973-, et al. (author) Exploring what is reasonable : uncovering moral reasoning of vascular surgeons in daily practice 2023 In: BMC Medical Ethics. - : BioMed Central (BMC). - 1472-6939. ; 24:1 Journal article (peer-reviewed)abstract BACKGROUND: Vascular surgery offers a range of treatments to relieve pain and ulcerations, and to prevent sudden death by rupture of blood vessels. The surgical procedures involve risk of injury and harm, which increases with age and frailty leading to complex decision-making processes that raise ethical questions. However, how vascular surgeons negotiate these questions is scarcely studied. The aim was therefore to explore vascular surgeons' moral reasoning of what ought to be done for the patient.METHODS: Qualitative, semi-structured interviews were conducted with 19 vascular surgeons working at three Swedish university hospitals. Data were analysed according to systematic text condensation.RESULTS: The surgeons' moral reasoning about what ought to be done comprised a quest to relieve suffering and avoid harm by exploring what is reasonable to do for the patient. Exploring reasonableness included to shift one´s perspective from the vessels to the whole person, to balance patient's conflicting needs and to place responsibility for right decision on one´s shoulders. The shift from blood vessels to the whole person implied gaining holistic knowledge in pondering of what is best, struggling with one´s authority for surgery through dialogue, and building relationship for mutual security. To balance patient's conflicting needs implied weighing the patient's independence and a sense of being whole against ease of suffering, respecting the patient's will against protecting life and well-being, and weighing longer life against protecting the present well-being. Finally, to place responsibility on one´s shoulders was conveyed as an urge to remind oneself of the risk of complications, withholding one's power of proficiency, and managing time during the illness course.CONCLUSIONS: This study contributes to uncovering how moral reasoning is embodied in the vascular surgeons' everyday clinical discourse as a tangible part of their patient care. The results underpin the significance of moral considerations in the assemblage of medical knowledge and technical skills to further understand vascular surgeons' clinical practice. The clinical application of these results is the need of forums with sufficient possibilities for articulating these important moral considerations in everyday care.
35.	Helgesson, Gert, et al. (author) Ethical aspects of diagnosis and interventions for children with fetal alcohol Spectrum disorder (FASD) and their families 2018 In: BMC Medical Ethics. - : BIOMED CENTRAL LTD. - 1472-6939. ; 19 Journal article (peer-reviewed)abstract Background: Fetal alcohol spectrum disorders (FASD) is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identified with a condition within FASD remains controversial. The objective of the present study was to identify ethical aspects and consequences of diagnostics, interventions, and family support in relation to FASD.Methods: Ethical aspects relating to diagnostics, interventions, and family support regarding FASD were compiled and discussed, drawing on a series of discussions with experts in the field, published literature, and medical ethicists.Results: Several advantages and disadvantages in regards of obtaining a diagnosis or description of the condition were identified. For instance, it provides an explanation and potential preparedness for not yet encountered difficulties, which may play an essential role in acquiring much needed help and support from health care, school, and the socia ! services. There are no interventions specifically evaluated for FASD conditions, but training programs and family support for conditions with symptoms overlapping with FASD, e.g. ADHD, autism, and intellectual disability, are likely to be relevant. Stigmatization, blame, and guilt are potential downsides. There might also be unfortunate prioritization if individuals with equal needs are treated differently depending on whether or not they meet the criteria for a specific condition. Conclusions: The value for the concerned individuals of obtaining a FASD-related description of their condition - for instance, in terms of wellbeing - is not established. Nor is it established that allocating resources based, on whether individuals fulfil FASD-related criteria is justified, compared to allocations directed to the most prominent specific needs.
36.	Holmberg, Bodil, 1970-, et al. (author) Caring for older patients with reduced decision-making capacity : a deductive exploratory study of ambulance clinicians’ ethical competence 2023 In: BMC Medical Ethics. - : BioMed Central (BMC). - 1472-6939. ; 24 Journal article (peer-reviewed)abstract Background: As more people are living longer, they become frail and are affected by multi-morbidity, resulting in increased demands from the ambulance service. Being vulnerable, older patients may have reduced decision-making capacity, despite still wanting to be involved in decision-making about their care. Their needs may be complexand difficult to assess, and do not always correspond with ambulance assessment protocols. When needing an ambulance, older patients encounter ambulance clinicians who are under high workloads and primarily consider themselves as emergency medical care providers. This situates them in the struggle between differing expectations, and ethical conflicts may arise. To resolve these, providing ethical care, focussing on interpersonal relationships and using ethical competence is needed. However, it is not known whether ambulance clinicians possess the ethical competence required to provide ethical care. Thus, the aim of this study was to deductively explore their ethical competence when caring for older patients with reduced decision-making ability.Methods: A qualitative deductive and exploratory design was used to analyse dyadic interviews with ambulance clinicians. A literature review, defining ethical competence as comprising ethical sensitivity, ethical knowledge, ethical reflection, ethical decision-making, ethical action and ethical behaviour, was used as a structured categorization matrix for the analysis.Results: Ambulance clinicians possess ethical competence in terms of their ethical knowledge, highlighting the need for establishing an interpersonal relationship with the older patients. To establish this, they use ethical sensitivity to interpret the patients’ needs. Doing this, they are aware of their ethical behaviour, signifying how they must act respectfully and provide the necessary time for listening and interacting.Conclusions: Ambulance clinicians fail to see their gut feeling as a professional ethical competence, which might hinder them from reacting to unethical ways of working. Further, they lack ethical reflection regarding the benefits and disadvantages of paternalism, which reduces their ability to perform ethical decision-making. Moreover, their ethical knowledge is hampered by an ageist approach to older patients, which also has consequences for their ethical action. Finally, ambulance clinicians show deficiencies regarding their ethical reflections, as they reflect merely on their own actions, rather than on their values
37.	Johnsson, Linus, 1978-, et al. (author) How general practitioners decide on maxims of action in response to demands from conflicting sets of norms : a grounded theory study 2019 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 20 Journal article (peer-reviewed)abstract Background: The work of general practitioners (GPs) is infused by norms from several movements, of which evidence based medicine, patient-centredness, and virtue ethics are some of the most influential. Their precepts are not clearly reconcilable, and structural factors may limit their application. In this paper, we develop a conceptual framework that explains how GPs respond, across different fields of interaction in their daily work, to the pressure exerted by divergent norms.Methods: Data was generated from unstructured interviews with and observations of sixteen Swedish GPs (who have by definition more than five years of experience after license to practice) and family medicine residents (with less than five years of experience) between 2015 and 2017. Straussian Grounded Theory was used for analysis.Results: We found that GPs’ maxims of action can be characterised in terms of dichotomous responses to demands from four distinct sets of norms, or “voices”: the situation, the self, the system, and the profession. From the interactions between these voices emerge sixteen clusters of maxims of action. Based on the common features of the maxims in each cluster, we have developed a conceptual framework that appears to be rich enough to capture the meaning of the ethical decisions that GPs make in their daily work, yet has a high enough level of abstraction to be helpful when discussing the factors that influence those decisions.Conclusions: Our four-dimensional model of GPs' responses to norms is a first step toward a middle-range theory of quality from GPs' perspective. It brings out the complexity of their practice, reveals tensions that easily remain invisible in more concrete accounts of their actions, and aids the transferability of substantive theories on GPs' ethical decision making. By explaining the nature of the ethical conflicts that they experience, we provide some clues as to why efforts to improve quality by imposing additional norms on GPs may meet with varying degrees of success.
38.	Johnsson, Linus, 1978-, et al. (author) The voice of the profession : how the ethical demand is professionally refracted in the work of general practitioners 2023 In: BMC Medical Ethics. - : BioMed Central (BMC). - 1472-6939. ; 24:1 Journal article (peer-reviewed)abstract BACKGROUND: Among the myriad voices advocating diverging ideas of what general practice ought to be, none seem to adequately capture its ethical core. There is a paucity of attempts to integrate moral theory with empirical accounts of the embodied moral knowledge of GPs in order to inform a general normative theory of good general practice. In this article, we present an empirically grounded model of the professional morality of GPs, and discuss its implications in relation to ethical theories to see whether it might be sustainable as a general practice ethic.METHODS: We observed and interviewed sixteen GPs and GP residents working in health care centres in four Swedish regions between 2015-2017. In keeping with Straussian Grounded Theory, sampling was initially purposeful and later theoretically guided, and data generation, analysis and theoretical integration proceeded in parallel. The focal concept of this article was refined through multidimensional property supplementation.RESULTS: The voice of the profession is one of four concepts in our emerging theory that attempt to capture various motives that affect GPs' everyday moral decisionmaking. It reflects how GPs appreciate the situation by passing three professional-moral judgments: Shall I see what is before me, or take a bird's-eye view? Shall I intervene, or stay my hand? And do I need to speak up, or should I rather shut up? By thus framing the problem, the GP narrows down the range of considerations, allowing them to focus on its morally most pertinent aspects. This process is best understood as a way of heeding Løgstrup's ethical demand. Refracted through the lens of the GP's professional understanding of life, the ethical demand gives rise to specific moral imperatives that may stand in opposition to the express wishes of the other, social norms, or the GP's self-interest.CONCLUSIONS: The voice of the profession makes sense of how GPs frame problematic situations in moral terms. It is coherent enough to be sustainable as a general practice ethic, and might be helpful in explaining why ethical decisions that GPs intuitively understand as justified, but for which social support is lacking, can nevertheless be legitimate.
39.	Karlsson, P, et al. (author) Skepticism towards the Swedish vision zero for suicide: interviews with 12 psychiatrists 2018 In: BMC medical ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 19:1, s. 26- Journal article (peer-reviewed)
40.	Lynoe, Niels, et al. (author) Heed or disregard a cancer patient's critical blogging? : An experimental study of two different framing strategies 2016 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 17 Journal article (peer-reviewed)abstract Background: We have examined healthcare staff attitudes of toward a blogging cancer patient who publishes critical posts about her treatment and their possible effect on patient-staff relationships and treatment decisions.Methods: We used two versions of a questionnaire containing a vignette based on a modified real case involving a 39-year-old cancer patient who complained on her blog about how she was encountered and the treatment she received. Initially she was not offered a new, and expensive treatment, which might have influenced her perception of further encounters. In one version of the vignette, the team decides to put extra effort into both encounters and offers the expensive new cancer treatment. In the other version, the team decides to follow the clinic's routine to the letter. Subsequently, blog postings became either positive or negative in tone. We also divided participants into value-neutral and value-influenced groups (regarding personal values) by asking how their trust in healthcare would be affected if the team's suggestion were followed.Results: A total of 56 % (95 % CI: 51-61) of the respondents faced with a team decision to 'do something-extra' in encounters would act in accordance with this ambition. Concerning treatment, 32 % (95 % CI: 28-38) would follow the team's decision to offer a new and expensive treatment. A large majority of those who received the "follow-routine" version agreed to do so in encountering [94 % (95 % CI: 91-97)]. Similar proportions were found regarding treatment [86 % (95 % CI: 82-90)]. A total of 83 % (95 % CI: 76-91) of the value-neutral participants who received the "do-something-extra" version stated that they would act as the team suggested regarding encounters, while 57 % (95 % CI: 47-67) would do so in regard to treatment. Among the value-influenced participants who received the "do-something-extra" version, 45 % (95 % CI: 38-51) stated that they would make an extra effort to accommodate the patient and her needs, while the proportion for treatment was 22 % (95 % CI: 16-27). Among those who had received the "follow-routine" version, a large majority agreed, and no difference was indicated between the value-neutral and the value-influenced participants.Conclusion: The present study indicates that healthcare staff is indeed influenced by reading a patient's critical blog entries, largely regarding encounters, but also concerning treatment is concerned. Value-neutral healthcare personnel seem to exhibit a pragmatic attitude and be more inclined to heed and respond to a patient whose criticism may well be warranted. The study also indicates that healthcare staff is partly positive or negative to future blogging patients depending on how the issue has been framed. For future research we suggest as a bold hypothesis that the phrase "clinical routine" might conceal power aspects masquerading as adopted ethical principles.
41.	Lynøe, Niels, et al. (author) How to reveal disguised paternalism : version 2.0 2021 In: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 22:1 Journal article (peer-reviewed)abstract BACKGROUND: We aim to further develop an index for detecting disguised paternalism, which might influence physicians' evaluations of whether or not a patient is decision-competent at the end of life. Disguised paternalism can be actualized when physicians transform hard paternalism into soft paternalism by questioning the patient's decision-making competence.METHODS: A previously presented index, based on a cross-sectional study, was further developed to make it possible to distinguish between high and low degrees of disguised paternalism using the average index of the whole sample. We recalculated the results from a 2007 study for comparison to a new study conducted in 2020. Both studies are about physicians' attitudes towards, and arguments for or against, physician-assisted suicide.RESULTS: The 2020 study showed that geriatricians, palliativists, and middle-aged physicians (46-60 years old) had indices indicating disguised paternalism, in contrast with the results from the 2007 study, which showed that all specialties (apart from GPs and surgeons) had indices indicating high degrees of disguised paternalism.CONCLUSIONS: The proposed index for identifying disguised paternalism reflects the attitude of a group towards physician assisted suicide. The indices make it possible to compare the various medical specialties and age groups from the 2007 study with the 2020 study. Because disguised paternalism might have clinical consequences for the rights of competent patients to participate in decision-making, it is important to reveal disguised hard paternalism, which could masquerade as soft paternalism and thereby manifest in practice. Methods for improving measures of disguised paternalism are worthy of further development.
42.	Lynøe, Niels, et al. (author) Trends in Swedish physicians’ attitudes towards physician-assisted suicide: a cross-sectional study 2021 In: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 22:1 Journal article (peer-reviewed)abstract Aims: To examine attitudes towards physician-assisted suicide (PAS) among physicians in Sweden and compare these with the results from a similar cross-sectional study performed in 2007.Participants: A random selection of 250 physicians from each of six specialties (general practice, geriatrics, internal medicine, oncology, surgery and psychiatry) and all 127 palliative care physicians in Sweden were invited to participate in this study.Setting: A postal questionnaire commissioned by the Swedish Medical Society in collaboration with Karolinska Institute in Stockholm.Results: The total response rate was 59.2%. Slightly fewer than half [47.1% (95% CI 43.7–50.5)] of the respondents from the six specialties accepted PAS, which is significantly more than accepted PAS in the 2007 study [34.9% (95% CI 31.5–38.3)]. Thirty-three percent of respondents were prepared to prescribe the needed drugs. When asked what would happen to the respondent’s own trust in healthcare, a majority [67.1% (95% CI 63.9–70.3)] stated that legalizing PAS would either not influence their own trust in healthcare, or that their trust would increase. This number is an increase compared to the 2007 survey, when just over half [51.9% (95% CI 48.0–55.2)] indicated that their own trust would either not be influenced, or would increase.Conclusions: The study reveals a shift towards a more accepting attitude concerning PAS among physicians in Sweden. Only a minority of the respondents stated that they were against PAS, and a considerable proportion reported being prepared to prescribe the needed drugs for patient self-administration if PAS were legalized.
43.	Martin, Sylvia, et al. (author) A comparative ethical analysis of the Egyptian clinical research law 2024 In: BMC Medical Ethics. - : BioMed Central (BMC). - 1472-6939. ; 25:1 Journal article (peer-reviewed)abstract BackgroundIn this study, we examined the ethical implications of Egypt’s new clinical trial law, employing the ethical framework proposed by Emanuel et al. and comparing it to various national and supranational laws. This analysis is crucial as Egypt, considered a high-growth pharmaceutical market, has become an attractive location for clinical trials, offering insights into the ethical implementation of bioethical regulations in a large population country with a robust healthcare infrastructure and predominantly treatment-naïve patients.MethodsWe conducted a comparative analysis of Egyptian law with regulations from Sweden and France, including the EU Clinical Trials Regulation, considering ethical human subject research criteria, and used a directed approach to qualitative content analysis to examine the laws and regulations. This study involved extensive peer scrutiny, frequent debriefing sessions, and collaboration with legal experts with relevant international legal expertise to ensure rigorous analysis and interpretation of the laws.ResultsOn the rating of the seven different principles (social and scientific values, scientific validity, fair selection of participants, risk-benefit ratio, independent review, informed consent and respect for participants) Egypt, France, and EU regulations had comparable scores. Specific principles (Social Value, Scientific Value, and Fair selection of participants) were challenging to directly identify due to certain regulations embodying 'implicit' principles more than explicitly stated ones.ConclusionThe analysis underscores Egypt's alignment with internationally recognized ethical principles, as outlined by Emanuel et al., through its comparison with French, Swedish, and EU regulations, emphasizing the critical need for Egypt to continuously refine its ethical regulations to safeguard participant protection and research integrity. Key issues identified include the necessity to clarify and standardize the concept of social value in research, alongside concerns regarding the expertise and impartiality of ethical review boards, pointing towards a broader agenda for enhancing research ethics in Egypt and beyond.
44.	Matar, Amal, et al. (author) Autonomous decisions by couples in reproductive care 2020 In: BMC Medical Ethics. - : BioMed Central. - 1472-6939. ; 21:1 Journal article (peer-reviewed)abstract Background Preconception Expanded Carrier Screening (ECS) is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they enhance reproductive autonomy. The dominant conception of autonomy is individual-based. However, at the clinic, people deciding on preconception ECS will be counselled together and are expected to make a joint decision, as a couple. The aim of the present study was to develop an understanding of autonomous decisions made by couples in the context of reproductive technologies in general and of preconception ECS in particular. Further, to shed light on what occurs in reproductive clinics and suggest concrete implications for healthcare professionals. Main text Based on the shift in emphasis from individual autonomy to relational autonomy, a notion of couple autonomy was suggested and some features of this concept were outlined. First, that both partners are individually autonomous and that the decision is reached through a communicative process. In this process each partner should feel free to express his or her concerns and preferences, so no one partner dominates the discussion. Further, there should be adequate time for the couple to negotiate possible differences and conclude that the decision is right for them. The final decision should be reached through consensus of both partners without coercion, manipulation or miscommunication. Through concrete examples, the suggested notion of couple autonomy was applied to diverse clinical situations. Conclusions A notion of couple autonomy can be fruitful for healthcare professionals by structuring their attention to and support of a couple who is required to make an autonomous joint decision concerning preconception ECS. A normative implication for healthcare staff is to allow the necessary time for decision-making and to promote a dialogue that can increase the power of the weaker part in a relationship.
45.	Matar, Amal, et al. (author) Values and value conflicts in implementation and use of preconception expanded carrier screening : an expert interview study 2019 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 20 Journal article (peer-reviewed)abstract Background: Endeavors have been made to found and incorporate ethical values in most aspects of healthcare, including health technology assessment. Health technologies and their assessment are value-laden and could trigger problems with dissemination if they contradict societal norms. Per WHO definition, preconception expanded carrier screening is a new health technology that warrants assessment. It is a genetic test offered to couples who have no known risk of recessive genetic diseases and are interested pregnancy. A test may screen for carrier status of several autosomal recessive diseases and X-linked at one go. The technique has been piloted in the Netherlands and is discussed in other countries. The aim of the study was to examine values and value conflicts that healthcare experts recounted in relation to the discussion of implementation and use of preconception ECS in Sweden.Methods: We interviewed ten experts, who were associated with influencing health policymaking in Sweden. We employed systematizing expert interviews, which endeavor to access experts' specialist knowledge. There were four female and six male informants, of which four were physicians, three bioethicists, one a legal expert, one a theologian and one a political party representative in the parliament. The participants functioned as members of two non-governmental bodies and three governmental organizations. We employed thematic analysis to identify themes, categories and subcategories.Results: Two main themes surfaced: values and value conflicts. The main categories of Respect for persons, Solidarity, Human dignity, Do no harm, Health and Love formed the first theme, while values conflicting with autonomy and integrity respectively, constituted the second theme. Concepts relating to respect for persons were the most commonly mentioned among the participants, followed by notions alluding to solidarity. Furthermore, respondents discussed values conflicting with Swedish healthcare ones such as equality and solidarity.Conclusions: The experts highlighted values and concepts that are distinctive of welfare states such as Sweden and delineated how preconception ECS could challenge such values. Moreover, the analysis revealed that certain values were deemed more substantive than others, judging by the extent and detail of inference; for example, respect for persons and solidarity were on top of the list.
46.	McKay, Francis, et al. (author) Artificial intelligence and medical research databases: ethical review by data access committees 2023 In: BMC Medical Ethics. - : BMC. - 1472-6939. ; 24:1 Research review (peer-reviewed)abstract BackgroundIt has been argued that ethics review committees-e.g., Research Ethics Committees, Institutional Review Boards, etc.- have weaknesses in reviewing big data and artificial intelligence research. For instance, they may, due to the novelty of the area, lack the relevant expertise for judging collective risks and benefits of such research, or they may exempt it from review in instances involving de-identified data.Main bodyFocusing on the example of medical research databases we highlight here ethical issues around de-identified data sharing which motivate the need for review where oversight by ethics committees is weak. Though some argue for ethics committee reform to overcome these weaknesses, it is unclear whether or when that will happen. Hence, we argue that ethical review can be done by data access committees, since they have de facto purview of big data and artificial intelligence projects, relevant technical expertise and governance knowledge, and already take on some functions of ethical review. That said, like ethics committees, they may have functional weaknesses in their review capabilities. To strengthen that function, data access committees must think clearly about the kinds of ethical expertise, both professional and lay, that they draw upon to support their work.ConclusionData access committees can undertake ethical review of medical research databases provided they enhance that review function through professional and lay ethical expertise.
47.	Norbäck, Kajsa, et al. (author) Ethical concerns when recruiting children with cancer for research : Swedish healthcare professionals' perceptions and experiences. 2023 In: BMC Medical Ethics. - : BioMed Central (BMC). - 1472-6939. ; 24:1, s. 23- Journal article (peer-reviewed)abstract BACKGROUND: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research.METHODS: An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis.RESULTS: The respondents' ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted.CONCLUSION: This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.
48.	Pergert, Pernilla, et al. (author) Translating and culturally adapting the shortened version of the Hospital Ethical Climate Survey (HECS-S) - retaining or modifying validated instruments 2018 In: BMC Medical Ethics. - : BIOMED CENTRAL LTD. - 1472-6939. ; 19 Journal article (peer-reviewed)abstract Background: The Hospital Ethical Climate Survey (HECS) was developed in the USA and later shortened (HECS-S). HECS has previously been translated into Swedish and the aim of this study was to describe a process of translating and culturally adapting HECS-S and to develop a Swedish multi-professional version, relevant for paediatrics. Another aim was to describe decisions about retaining versus modifying the questionnaire in order to keep the Swedish version as close as possible to the original while achieving a good functional level and trustworthiness. Methods: In HECS-S, the respondents are asked to indicate the veracity of statements. In HECS and HECS-S the labels of the scale range from almost never true to almost always true; while the Swedish HECS labels range from never to always. The procedure of translating and culturally adapting the Swedish version followed the scientific structure of guidelines. Three focus group interviews and three cognitive interviews were conducted with healthcare professionals. Furthermore, descriptive data were used from a previous study with healthcare professionals (n = 89), employing a modified Swedish HECS. Decisions on retaining or modifying items were made in a review group. Results: The Swedish HECS-S consists of 21 items including all 14 items from HECS-S and items added to develop a multi-professional version, relevant for paediatrics. The descriptive data showed that few respondents selected never and always. To obtain a more even distribution of responses and keep Swedish HECS-S close to HECS-S, the original labels were retained. Linguistic adjustments were made to retain the intended meaning of the original items. The word respect was used in HECS-S with two different meanings and was replaced in one of these because participants were concerned that respecting patients wishes implied always complying with them. Conclusions: The process of developing a Swedish HECS-S included decisions on whether to retain or modify. Only minor adjustments were needed to achieve a good functional level and trustworthiness although some items needed to be added. Adjustments made could be used to also improve the English HECS-S. The results shed further light on the need to continuously evaluate even validated instruments and adapt them before use.
49.	Pettersson, Mona, et al. (author) Ethical competence in DNR decisions : a qualitative study of Swedish physicians and nurses working in hematology and oncology care 2018 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 19 Journal article (peer-reviewed)abstract BackgroundDNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions.MethodsIndividual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis.ResultsPhysicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing.ConclusionsIn order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient.
50.	Porsdam Mann, Sebastian, et al. (author) A framework for the ethical assessment of chimeric animal research involving human neural tissue 2019 In: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 20:1 Journal article (peer-reviewed)abstract Background: Animal models of human diseases are often used in biomedical research in place of human subjects. However, results obtained by animal models may fail to hold true for humans. One way of addressing this problem is to make animal models more similar to humans by placing human tissue into animal models, rendering them chimeric. Since technical and ethical limitations make neurological disorders difficult to study in humans, chimeric models with human neural tissue could help advance our understanding of neuropathophysiology. Main body: In this article, we examine whether the introduction of human neural tissue and any consequent cognitive change is relevant to the way we ought to treat chimeras. We argue that changes in cognitive abilities are morally relevant to the extent that they increase the capacities that affect the moral status of any entity, including awareness, autonomy, and sociability. We posit that no being, regardless of species, should be treated in a way that is incommensurate with its moral status. Finally, we propose a framework that can be used to guide ethical assessment of research involving chimeras with advanced cognitive capacities. Conclusion: We advance this framework as a useful tool for bringing relevant considerations to the forefront for those considering the ethical merit of proposed chimeric research. In doing so, we examine concepts relevant to the question of how any entity may be treated, including moral status, dignity, and capacities.

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