| 1. |
- Ahlin Marceta, Jesper, et al.
(författare)
-
Personal autonomy : From practice to theory
- 2022
-
Ingår i: Theoria. - : John Wiley & Sons. - 0040-5825 .- 1755-2567. ; 88:6, s. 1063-1065
-
Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
|
|
| 2. |
- Barra, Mathias, et al.
(författare)
-
Do not despair about severity—yet
- 2020
-
Ingår i: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 46:8, s. 557-558
-
Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- In a recent extended essay, philosopher Daniel Hausman goes a long way towards dismissing severity as a morally relevant attribute in the context of priority setting in healthcare. In this response, we argue that although Hausman certainly points to real problems with how severity is often interpreted and operationalised within the priority setting context, the conclusion that severity does not contain plausible ethical content is too hasty. Rather than abandonment, our proposal is to take severity seriously by carefully mapping the possibly multiple underlying accounts to well-established ethical theories, in a way that is both morally defensible and aligned with the term’s colloquial uses.
|
|
| 3. |
- Bayram, Gökçe, et al.
(författare)
-
Health care professionals’ view on pedophilic disorder : a qualitative study
- 2021
-
Ingår i: Sexual and Relationship Therapy. - : Taylor & Francis Group. - 1468-1994 .- 1468-1749. ; 38:4, s. 684-695
-
Tidskriftsartikel (refereegranskat)abstract
- In the last few years there has been a shift in the view on pedophilia and its treatment in international diagnostic manuals and expert consensus documents. This study seeks to investigate the approach of health care professionals’ on some of the topics that are mostly debated: whether pedophilia without distress or acting out should be considered a mental disorder, whether there can be a changeability of pedophilic sexual interest over life and what the main aim of treatment should be. Qualitative content analysis was used to analyze the responses in semi-structured interviews of eight Swedish health care professionals with significant clinical experience from this patient category. These results suggest that there is a lack of consensus regarding all three topics, and that the opinions of the experienced health care professionals did not fully comply with the international experts agreements. This might lead to differences in clinical practice depending on who meets the patient, it can make the patients unsure about how they will be treated if they seek help, and it demonstrates a gap between published international research and clinical practice.
|
|
| 4. |
- Broström, Linus, et al.
(författare)
-
Excessive burden or due respect
- 2015
-
Ingår i: Patients, Values, and Medicine: Hommage à Niels Lynøe. - 9789175498287 ; , s. 5-10
-
Bokkapitel (refereegranskat)
|
|
| 5. |
|
|
| 6. |
-
Fear of an unFAIR planet : Welcome to an exhibition that demonstrates the path to FAIR data and open access to research
- 2023
-
Konstnärligt arbeteabstract
- The world faces significant challenges, and research is essential in finding solutions. One obstacle is that much of the research results and data are locked behind paywalls or otherwise hidden, and not accessible to a broader audience. Who knows what advancements and groundbreaking discoveries we are missing due to this confinement? The goal should be to make as much research data and results as open and available as possible. The question is: how do we get there?Openness is crucial for addressing today’s major issues, such as the climate crisis, and is about global justice. A recent example of what shared and accessible data can contribute to is the rapid development of new vaccines during the COVID-19 pandemic. What other challenges can we solve together with the help of open and accessible research data? Do we need to fear an unFAIR world?
|
|
| 7. |
|
|
| 8. |
- Fröding, Barbro, et al.
(författare)
-
Cognitive Enhancement and the Principle of Need
- 2015
-
Ingår i: Neuroethics. - : Springer. - 1874-5490 .- 1874-5504. ; 8:3, s. 231-242
-
Tidskriftsartikel (refereegranskat)abstract
- In this article we argue that (i) the principle of need, on some interpretations, could be used to justify the spending of publically funded health care resources on cognitive enhancement and (ii) that this also holds true for individuals whose cognitive capacities are considered normal. The increased, and to an extent, novel demands that the modern technology and information society places on the cognitive capacities of agents, e.g., regarding good and responsible decision-making, have blurred the line between treatment and enhancement. More specifically, it has shifted upwards. As a consequence, principles of need on their most reasonable interpretations can be used to support publically funded cognitive enhancement. At least this is so, if broader aims than curing and ameliorating diseases are included in the goals of health care. We suggest that it would be plausible to see health care as accepting such broader goals already today.
|
|
| 9. |
- Furberg, Elisabeth, 1979-
(författare)
-
Advance Directives and Personal Identity
- 2012
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Advance directives are instructions given by patients – or potential patients – specifying what actions ought to be taken for their health in the event that they are no longer capable to make decisions due to illness or incapacity. Over the last decades, there has been a rising tide in favour of advance directives: not only is the use of such directives recommended by most medical and advisory bodies, they are also gaining increasing legal recognition in many parts of the world.This book, however, takes as its point of departure one of the most commonly discussed medical-ethical arguments against granting advance directives moral force: the Objection from Personal Identity. The adherers of this objection basically asserts that when there is lacking psychological continuity between the person who formulated the advance directive and the later patient to whom it supposedly applies, this seriously threatens the directive’s moral authority. And, further, that this is so because lacking sufficient psychological continuity implies that the author of the advance directive is numerically distinct from the later patient.Although this argument has some initial appeal, most philosophers in the advance directives debate maintain that the Objection from Personal Identity fails, but suggest different reasons as to why. Whereas some argue that the objection has no force because it rests on faulty beliefs about personal identity, others argue that we ought to grant advance directives moral authority even if the author and the later patient are numerically distinct beings. This book investigates some of the most influential of these arguments and reaches the conclusion that the Objection from Personal Identity has more to it than is usually recognized in the medical-ethical debate. Lacking sufficient psychological continuity between author and later patient, it is concluded, does threaten the moral authority of the advance directive.
|
|
| 10. |
- Godskesen, Tove, et al.
(författare)
-
Challenges regarding informed consent in recruitment to clinical research : a qualitative study of clinical research nurses' experiences
- 2023
-
Ingår i: Trials. - : BioMed Central (BMC). - 1745-6215. ; 24
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Clinical research nurses (CRNs) have first-hand experience with ethical challenges and play a crucial role in upholding ethical conduct and adherence to the principles of informed consent in clinical research. This study explores the ethical challenges encountered by CRNs in the process of obtaining informed consent for clinical research.Methods: A qualitative exploratory design. Semistructured interviews (n = 14) were conducted with diverse CRNs in Sweden. These CRNs covered a wide range of research fields, including pharmaceutical and academic studies, interventions, and observational research, spanning different trial phases, patient categories, and medical conditions. The interviews were analysed using inductive qualitative content analysis.Results:The analysis identified three main categories: (i) threats to voluntariness, (ii) measures to safeguard voluntariness, and (iii) questionable exclusion of certain groups. CRNs face challenges due to time constraints, rushed decisions, information overload, and excessive reliance on physicians' recommendations. Overestimating therapeutic benefits in stages of advanced illness emerged as a risk to voluntariness. CRNs outlined proactive solutions, such as allowing ample decision-making time and offering support, especially for terminally ill patients. Concerns were also voiced about excluding certain demographics, such as those with language barriers or cognitive impairments.Conclusions: In conclusion, upholding ethical research standards requires recognising various factors affecting patient voluntariness. Researchers and CRNs should prioritise refining the informed consent process, overcoming participation challenges, and aligning scientific rigour with personalised care. Additionally, a concerted effort is vital to meet the diverse needs of patient populations, including equitable inclusion of individuals with language barriers or cognitive limitations in clinical studies. These findings have significant implications for enhancing the ethics of clinical research and advancing person-centred care.
|
|
| 11. |
- Guenna Holmgren, Amina, et al.
(författare)
-
Restraint in somatic healthcare : how should it be regulated?
- 2023
-
Ingår i: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257.
-
Tidskriftsartikel (refereegranskat)abstract
- Restraint is regularly used in somatic healthcare settings, and countries have chosen different paths to regulate restraint in somatic healthcare. One overarching problem when regulating restraint is to ensure that patients with reduced decision-making capacity receive the care they need and at the same time ensure that patients with a sufficient degree of decision-making capacity are not forced into care that they do not want. Here, arguments of justice, trust in the healthcare system, minimising harm and respecting autonomy are contrasted with different national regulations. We conclude that a regulation that incorporates an assessment of patients’ decision-making capacity and considers the patient’s best interests is preferable, in contrast to regulations based on psychiatric diagnoses or regulations where there are no legal possibilities to exercise restraint at all in somatic care.
|
|
| 12. |
- Guenna Holmgren, Amina, et al.
(författare)
-
Understanding nurses’ justification of restraint in a neurosurgical setting : A qualitative interview study
- 2022
-
Ingår i: Nursing Ethics. - : Sage Publications. - 0969-7330 .- 1477-0989. ; 30:1, s. 71-85
-
Tidskriftsartikel (refereegranskat)abstract
- Background Despite its negative impact on patients and nurses, the use of restraint in somatic health care continues in many settings. Understanding the reasons and justifications for the use of restraint among nurses is crucial in order to manage this challenge.Aim To understand nurses’ justifications for restraint use in neurosurgical care.Research design A qualitative, descriptive design was used. Data were analysed with inductive qualitative content analysis.Participants and research context Semi-structured interviews with 15 nurses working in three neurosurgical departments in Sweden.Ethical considerations Approved by The Regional Ethics Committee, Stockholm, Sweden.Findings The analysis resulted in three categories. The category Patient factors influencing restraint use describes patient factors that trigger restraint, such as a diminished decision-making competence, restlessness, and need for invasive devices. The category Specific reasons for justifying restraint describes reasons for restraining patients, such as restraint being used for the sake of the patient or for the sake of others. The category General reasoning in justifying restraint describes how nurses reason when using restraint, and the decision to use restraint was often based on a consequentialist approach where the nurses’ weighed the pros and cons of different alternatives.Discussion Nurses with experience of restraint use were engaged in a constant process of justifying and balancing different options and actions. Restraint was considered legitimate if the benefit exceeded the suffering, but decisions on which restraint measures to use and when to use them depended on the values of the individual nurse.Conclusion How nurses reason when justifying restraint, why they use restraint, and who they use restraint on must be considered when creating programs and guidelines to reduce the use of restraint and to ensure that when it is used it is used carefully, appropriately, and with respect.
|
|
| 13. |
- Gustavsson, Erik, 1982-
(författare)
-
Characterising Needs in Health Care Priority Setting
- 2017
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The focus of this thesis is needs in the context of health care priority setting. The notion of needs has a strong standing in health care policy; however, how the idea should be understood more specifically and how it should guide decisions about priority setting remain contentious issues. The aim of this thesis is to explore how needs should be characterised in health care priority setting. This matter is approached by, first, exploring and developing the conceptual structure of health care needs, and second, discussing and suggesting solutions to normative questions that arise when needs are characterised as a distributive principle.In the first article, the conceptual structure of needs in general and health care needs in particular is explored, and it is argued that a specific characterisation of health care needs is required.In the second article, the notion of health care needs is explored in relation to preferences for health care within the context of shared decision-making. The paper further discusses a number of queries that arise in the intersection between what the patient needs and what the patient wants.The third article discusses how a principle of need should handle questions about interpersonal aggregation. The paper characterises a principle of need which strikes a reasonable balance between giving priority to the worst off and the distribution of benefits with regard to interpersonal aggregation.The fourth article discusses how a principle of need should account for the fact that patients often are badly off due to several conditions rather than one single condition. It is argued that how badly off patients are should be understood as a function of how badly off these patients are when all of their conditions (for which they need health care) are considered.The frame story provides the terminological, theoretical, contextual, and methodological background for the discussion undertaken in this thesis. The conclusions of the articles are brought together and the discussion extended in the concluding discussion by sketching a number of conditions of adequacy for the concept and principle of need relevant for health care priority setting.
|
|
| 14. |
|
|
| 15. |
|
|
| 16. |
- Gustavsson, Erik, et al.
(författare)
-
Etiska och praktiska utmaningar med ökat patientinflytande : Ethical and practical challenges with increased patient influence
- 2015
-
Ingår i: Läkartidningen. - 0023-7205. ; 112:17
-
Tidskriftsartikel (refereegranskat)abstract
- Det finns ett ökat intresse för patientinflytande i vården. Ett sådant fokus kan dock komma i konflikt med ett antal värden/praktiker inom vården. I denna artikel identifierar vi att följande värden/praktiker kan påverkas: Idén om patientens vårdbehov förefaller tappa sin moraliska och politiska ställning. Prioriteringar på gruppnivå kan bli svårare att tillämpa på individnivå. Det kan bli svårare att bedöma nyttan med behandlingar. Det kan bli svårare att få fram evidens för behandlingar. Det tycks komplicera idén om den följsamme patienten. Det kan innebära vissa implikationer för resursanvändning. Det kan ge ett nytt perspektiv på idén om att prioritera efter en ansvarsprincip.
|
|
| 17. |
- Gustavsson, Erik, et al.
(författare)
-
Etiska och praktiska utmaningar med ökat patientinflytande
- 2015
-
Ingår i: Läkartidningen. - Stockholm. - 0023-7205 .- 1652-7518. ; 112
-
Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Det finns ett ökat intresse för patientinflytande i vården. Ett sådant fokus kan dock komma i konflikt med ett antal värden/praktiker inom vården. I denna artikel identifierar vi att följande värden/praktiker kan påverkas: Idén om patientens vårdbehov förefaller tappa sin moraliska och politiska ställning. Prioriteringar på gruppnivå kan bli svårare att tillämpa på individnivå. Det kan bli svårare att bedöma nyttan med behandlingar. Det kan bli svårare att få fram evidens för behandlingar. Det tycks komplicera idén om den följsamme patienten. Det kan innebära vissa implikationer för resursanvändning. Det kan ge ett nytt perspektiv på idén om att prioritera efter en ansvarsprincip.
|
|
| 18. |
- Gustavsson, Erik, et al.
(författare)
-
Genetic testing for breast cancer risk, fromBRCA1/2to a seven gene panel: an ethical analysis
- 2020
-
Ingår i: BMC Medical Ethics. - : BMC. - 1472-6939. ; 21:1
-
Tidskriftsartikel (refereegranskat)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.
|
|
| 19. |
- Gustavsson, Erik, et al.
(författare)
-
Novel drug candidates targeting Alzheimers disease : ethical challenges with identifying the relevant patient population
- 2021
-
Ingår i: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 47:9, s. 608-614
-
Tidskriftsartikel (refereegranskat)abstract
- Intensive research is carried out to develop a disease-modifying drug for Alzheimers disease (AD). The development of drug candidates that reduce Ass or tau in the brain seems particularly promising. However, these drugs target people at risk for AD, who must be identified before they have any, or only moderate, symptoms associated with the disease. There are different strategies that may be used to identify these individuals (eg, population screening, cascade screening, etc). Each of these strategies raises different ethical challenges. In this paper, we analyse these challenges in relation to the risk stratification for AD necessary for using these drugs. We conclude that the new drugs must generate large health benefits for people at risk of developing AD to justify the ethical costs associated with current risk stratification methods, benefits much larger than current drug candidates have. This conclusion raises a new set of ethical questions that should be further discussed.
|
|
| 20. |
|
|
| 21. |
- Gustavsson, Erik, 1982-, et al.
(författare)
-
Principles of Need and the Aggregation Thesis
- 2019
-
Ingår i: Health Care Analysis. - : Springer. - 1065-3058 .- 1573-3394. ; 27:2, s. 77-92
-
Tidskriftsartikel (refereegranskat)abstract
- Principles of need are constantly referred to in health care priority setting. The common denominator for any principle of need is that it will ascribe some kind of special normative weight to people being worse off. However, this common ground does not answer the question how a plausible principle of need should relate to the aggregation of benefits across individuals. Principles of need are sometimes stated as being incompatible with aggregation and sometimes characterized as accepting aggregation in much the same way as utilitarians do. In this paper we argue that if one wants to take principles of need seriously both of these positions have unreasonable implications. We then characterize and defend a principle of need consisting of sufficientarian elements as well as prioritarian which avoids these unreasonable implications.
|
|
| 22. |
- Gustavsson, Erik, et al.
(författare)
-
Should relational effects be considered in health care priority setting?
- 2023
-
Ingår i: Bioethics. - : John Wiley & Sons. - 0269-9702 .- 1467-8519. ; 37:7, s. 668-673
-
Tidskriftsartikel (refereegranskat)abstract
- It is uncontroversial to claim that the extent to which health care interventions benefit patients is a relevant consideration for health care priority setting. However, when effects accrue to the individual patient, effects of a more indirect kind may accrue to other individuals as well, such as the patient's children, friends, or partner. If, and if so how, such relational effects should be considered relevant in priority setting is contentious. In this paper, we illustrate this question by using disease-modifying drugs for Alzheimer's disease as a case in point. The ethical analysis begins by sketching the so-called prima facie case for ascribing moral weight to relational effects and then moves on to consider a number of objections to it. We argue that, whereas one set of objections may be dismissed, there is another set of arguments that poses more serious challenges for including relational effects in priority setting.
|
|
| 23. |
- Gustavsson, Erik, 1982-, et al.
(författare)
-
Sjukdomsmodifierande läkemedel mot Alzheimers sjukdom : etiska aspekter av prioriteringar och screening
- 2020
-
Rapport (övrigt vetenskapligt/konstnärligt)abstract
- I skrivande stund pågår det intensiv forskning för att få fram ett sjukdomsmodifierande läkemedel mot Alzheimers sjukdom (AD). Vid introduktion av sådana läkemedel kommer en rad etiskt svåra frågor kring screening och prioriteringar av vårdens resurser, att aktualiseras. Föreliggande rapport behandlar dessa frågor.Trots att de nya läkemedlens effekt sannolikt har en påverkan på närstående till personer med AD så är det vår bedömning att den svenska etiska plattformen inte lämnar något utrymme för sådan hänsyn. Det finns också skäl att vara särskilt uppmärksam på utsträckningen i vilken de surrogatmått som används i de kliniska studierna faktiskt är av klinisk relevans.När det gäller att väga samman patientnytta som tillfaller olika individer är det vår bedömning att plattformen inte tillåter aggregering av patientnytta på ett sådant sätt. Det innebär att det faktum att personer med AD utgör en stor patientgrupp utgör i sig inte ett skäl för högre prioritet då effekten skall bedömas med avseende på hur den tillfaller varje enskild individ. I ett scenario där budgetpåverkan blir så stor att man behöver prioritera inom gruppen så tycks det saknas för prioriteringar relevanta kriterier.Manifest AD är ett tillstånd med mycket stor svårighetsgrad. Men eftersom de nya läkemedlen siktar in sig på den prekliniska eller fasen i vilken patienter har en lindrig kognitiv störning så bör svårighetsgraden av tillståndet viktas ned med avseende på sannolikheten att faktiskt insjukna i AD. Tillståndets svårighetsgrad blir därmed olika för läkemedel som siktar på den prekliniska fasen, de som siktar på fasen med lindrig kognitiv störning och de som siktar på kliniska stadier av AD. Eftersom personer med AD kan ha sämre förutsättningar än andra patientgrupper att kommunicera sina behov bör de beaktas särskilt. Det innebär dock inte någon högre prioritet utan en markering att personer med AD har samma rätt till hälso- och sjukvård som andra grupper med liknande behov.Populationsscreening för AD är förknippat med flera problem. Det finns generella problem med screening ur exempelvis autonomisynpunkt. Men det finns också problem som relaterar till att nuvarande metoder för riskstratifiering är så opålitliga vilket i sin tur resulterar i falska negativa (med risk för underbehandling) och falska positiva (med risk för överbehandling). Screening i fasen då patienten har en lindrig kognitiv störning har (förutom de problem som kommer med populationsscreening) problem med ojämlikhet och godtycke. När den kliniska fasen inträder har poängen med screening gått förlorad: ju senare identifikation, desto mindre potentiella behandlingsfördelar jämfört med vanlig diagnostik som den går till idag.Det är vår sammantagna bedömning att de nya läkemedlen måste generera stora hälsovinster för personer som riskerar att insjukna i AD för att berättigas allmän finansiering och för att rättfärdiga de etiska kostnader som kommer med de nuvarande diagnostiska metoderna.
|
|
| 24. |
- Gustavsson, Martina E., et al.
(författare)
-
"Being prevented from providing good care : a conceptual analysis of moral stress among health care workers during the COVID-19 pandemic"
- 2023
-
Ingår i: BMC Medical Ethics. - Stockholm : BioMed Central (BMC). - 1472-6939. ; 24:1
-
Tidskriftsartikel (refereegranskat)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.
|
|
| 25. |
- Gustavsson, Martina E, et al.
(författare)
-
Dealing with difficult choices : a qualitative study of experiences and consequences of moral challenges among disaster healthcare responders
- 2022
-
Ingår i: Conflict and Health. - Stockholm : Karolinska Institutet, Dept of Global Public Health. - 1752-1505.
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Disasters are chaotic events with healthcare needs that overwhelm available capacities. Disaster healthcare responders must make difficult and swift choices, e.g., regarding who and what to prioritize. Responders dealing with such challenging choices are exposed to moral stress that might develop into moral distress and affect their wellbeing. We aimed to explore how deployed international disaster healthcare responders perceive, manage and are affected by moral challenges. Methods: Focus groups discussions were conducted with 12 participants which were Swedish nurses and physicians with international disaster healthcare experience from three agencies. The transcribed discussions were analyzed using content analysis. Results: We identified five interlinked themes on what influenced perceptions of moral challenges; and how these challenges were managed and affected responders’ wellbeing during and after the response. The themes were: “type of difficult situation”, “managing difficult situations”, “tools and support”, “engagement as a protective factor”, and “work environment stressors as a risk factor. Moral challenges were described as inevitable and predominant when working in disaster settings. The responders felt that their wellbeing was negatively affected depending on the type and length of their stay and further; severity, repetitiveness of encounters, and duration of the morally challenging situations. Responders had to be creative and constructive in resolving and finding their own support in such situations, as formal support was often either lacking or not considered appropriate. Conclusion: The participating disaster healthcare responders were self-taught to cope with both moral challenges and moral distress. We found that the difficult experiences also had perceived positive effects such as personal and professional growth and a changed worldview, although at a personal cost. Support considered useful was foremost collegial support, while psychosocial support after deployment was considered useful provided that this person had knowledge of the working conditions and/or similar experiences. Our findings may be used to inform organizations’ support structures for responders before, during and after deployment.
|
|
| 26. |
- Gustavsson, Martina E, et al.
(författare)
-
Moral stress among Swedish health care workers during the COVID-19 pandemic : a cross-sectional study
- 2023
-
Ingår i: Scandinavian Journal of Work and Organizational Psychology. - Stockholm : Karolinska Institutet, Dept of Global Public Health. - 2002-2867.
-
Tidskriftsartikel (refereegranskat)abstract
- Aims: This study quantifies to what extent Health care workers (HCWs) experienced moral stress and to what extent their experiences of moral stress were related to gender and age as well as to working directly with COVID-19 patients and other work-related factors. Methods: This study consists of a cross-sectional survey that was conducted among 16,044 Swedish HCWs. A total of 153,300 HCWs and support staff who participated in the COVID-19 training offered by the Karolinska Institute were invited by email to participate in a web survey during autumn 2020. Results: This study is the first to quantify the frequency and severity of moral stress in a large group of HCWs. Moral stress was reported to a higher extent by HCWs involved in COVID-19 care and those involved in direct patient care. A lack of resources and the restrictions that hindered the patients’ family and friends from being involved were major causes of moral stress. Informal support was reported as being the most available and useful for dealing with moral stress. Conclusions: Our findings suggest that moral stress is common among HCWs who work with infected patients during a pandemic. The goal should not be to eliminate moral stress, as such stress may be viewed as a normal reaction to moral issues, but organizational structures (sufficient staffing and resources), could decrease the likelihood of morally stressful situations. Finally, to avoid the development of moral distress and its potential consequences, improvements could be made in providing HCWs with support tools for managing moral stress.
|
|
| 27. |
- Gustavsson, Martina, et al.
(författare)
-
Moral Distress among Disaster Responders : What is it?
- 2020
-
Ingår i: Prehospital and Disaster Medicine. - 1049-023X .- 1945-1938. ; 35:2, s. 212-219
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction:Current research of moral distress is mainly derived from challenges within high-resource health care settings, and there is lack of clarity among the different definitions. Disaster responders are prone to a range of moral challenges during the work, which may give rise to moral distress. Further, organizations have considered increased drop-out rates and sick leaves among disaster responders as consequences of moral distress. Therefore, initiatives have been taken to address and understand the impacts of moral distress and its consequences for responders. Since there is unclarity among the different definitions, a first step is to understand the concept of moral distress and its interlinkages within the literature related to disaster responders.Hypothesis/Problem:To examine how disaster responders are affected by moral challenges, systematic knowledge is needed about the concepts related to moral distress. This paper aims to elucidate how the concept of moral distress in disaster response is defined and explained in the literature.Methods:The paper opted to systematically map the existing literature through the methods of a scoping review. The searches derived documents which were screened regarding specific inclusion criteria. The included 16 documents were analyzed and collated according to their definitions of moral distress or according to their descriptions of moral distress.Results:The paper provides clarity among the different concepts and definitions of moral distress within disaster response. Several concepts exist that describe the outcomes of morally challenging situations, centering on situations when individuals are prevented from acting in accordance with their moral values. Their specific differences suggest that to achieve greater clarity in future work, moral stress and moral distress should be distinguished.Conclusion:Based on the findings, a conceptual model of the development of moral distress was developed, which displays a manifestation of moral distress with the interplay between the responder and the context. The overview of the different concepts in this model can facilitate future research and be used to illuminate how the concepts are interrelated.
|
|
| 28. |
- Hansson, Sven Ove, et al.
(författare)
-
Who should be tested in a pandemic? : Ethical considerations
- 2021
-
Ingår i: BMC Medical Ethics. - : Springer Nature. - 1472-6939. ; 22:1
-
Forskningsöversikt (refereegranskat)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.
|
|
| 29. |
- Helgesson, Gert, et al.
(författare)
-
Misuse of co-authorship in Medical PhD Theses in Scandinavia : A Questionnaire Survey
- 2023
-
Ingår i: Journal of Academic Ethics. - : Springer Nature. - 1570-1727 .- 1572-8544. ; 21:3, s. 393-406
-
Tidskriftsartikel (refereegranskat)abstract
- BackgroundSeveral studies suggest that deviations from proper authorship practices are commonplace in medicine. The aim of this study was to explore experiences of and attitudes towards the handling of authorship in PhD theses at medical faculties in Denmark, Norway, and Sweden.MethodsThose who defended their PhD thesis at a medical faculty in Scandinavia during the second half of 2020 were offered, by e-mail, to participate in an online survey. Survey questions dealt with experiences of violations of the first three of the ICMJE authorship criteria and misuse of authorship order in the thesis articles, as well as respondents’ attitudes to these matters. Both questions with fixed response alternatives and questions with free-text responses were used. Quantitative data were analysed statistically using the Table functions in SPSS 25 and Chi-2 tests. Free-text responses were analysed qualitatively using manifest content analysis.Results287 valid questionnaires were returned (response rate: 34.1%). Almost half (46.0%) of the respondents reported that the ICMJE authorship criteria were not fully respected in at least one of the papers in their thesis, while a vast majority (96.7%) found it important that authorship is handled according to the ICMJE authorship criteria. 24.4% reported inadequate handling of authorship order in at least one paper. The qualitative results provide a wide spectrum of examples of how the ICMJE authorship criteria are circumvented.ConclusionDespite increasing educational efforts to reduce deviations from good research practice at Scandinavian universities, the handling of authorship in medical papers remains problematic.
|
|
| 30. |
- Hermerén, Göran, et al.
(författare)
-
Etik och patientsäkerhet
- 2015
-
Ingår i: Patients, Values, and Medicine. Hommage à Niels Lynøe. - 9789175498287 ; , s. 37-49
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
|
|
| 31. |
|
|
| 32. |
|
|
| 33. |
|
|
| 34. |
|
|
| 35. |
- Juth, Niklas, 1973
(författare)
-
Etiken och människans gener
- 2007
-
Ingår i: Framtider. - 0281-0492. ; 2, s. 4-9
-
Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
|
|
| 36. |
|
|
| 37. |
|
|
| 38. |
|
|
| 39. |
|
|
| 40. |
|
|
| 41. |
- Juth, Niklas, 1973, et al.
(författare)
-
Genes and Insurance
- 2003
-
Bok (övrigt vetenskapligt/konstnärligt)
|
|
| 42. |
- Juth, Niklas, 1973
(författare)
-
Genetic Information - Values and Rights. The morality of presymptomatic genetic testing.
- 2005
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The focal point of this dissertation is the question of the value of and right to genetic information from presymptomatic genetic testing that may reveal risk of disease. This question is discussed regarding first parties, that is, the person on whom the test is performed, second parties, that is, blood relatives of first parties, and third parties, such as insurance companies and employers. In the second chapter, it is argued that the value of presymptomatic genetic testing for first parties ultimately rests on autonomy and subjective well-being. This shows the basis for some types of tests weaker than for others. Moreover, the way in which the test result is disclosed is crucial for the realization of the values. This renders some support for genetic counselling, the ethos of which is evaluated. In the third chapter, autonomy is analysed. A conception of autonomy is developed, which is useful to analyse the novel idea in this area that autonomy is a value that should be promoted. In relation to this, various theoretical issues are addressed, e.g. about the possibility of measuring autonomy. In the fourth chapter, the question of first parties right to genetic information is discussed. It is argued that the proper basis for such rights is the above mentioned values: autonomy and well-being. From this basis, it is argued that some limited rights to genetic information should be recognized. In the fifth chapter, rights to remain ignorant about ones genetic constitution are discussed. Such rights are defended, e.g. from charges that considerations of Kantian ethics and autonomy speak in favour of a duty to know about ones genetic constitution. In the sixth chapter, the question of blood relatives rights to genetic information is discussed. It is argued that practical considerations speak in favour of leaving the decision to inform relatives to the tested person, except perhaps in very rare circumstances. In the seventh chapter, the question of third parties, and primarily insurance companies, right to genetic information is discussed. It is argued that considerations of justice and well-being speak in favour of some regulation of insurance companies access to genetic information in conjunction with the protection and resurrection of social insurance systems. Thus, there are some values of and rights to genetic information, mainly based on considerations of autonomy, well-being, and justice.
|
|
| 43. |
- Juth, Niklas, et al.
(författare)
-
Honour-related threats and human rights : A qualitative study of Swedish healthcare providers’ attitudes towards young women requesting a virginity certificate or hymen reconstruction
- 2013
-
Ingår i: European journal of contraception & reproductive health care. - : Informa UK Limited. - 1362-5187 .- 1473-0782. ; 18:6, s. 451-459
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives To investigate the preferred actions of healthcare staff, as well as their reasoning and attitudes about young females’ requests for a virginity certificate or hymen restoration.Method A qualitative study, consisting of semi-structured interviews of healthcare providers from different parts of Sweden and from different medical specialties and professions, who had experience of women who asked for a virginity certificate or a hymen repair.Results Using content analysis, ten themes emerged regarding healthcare personnel's attitudes and reasoning about young female patients and their requests for demonstration of virginity. The themes logically were categorised as values, beliefs, and cultural affiliation.Conclusions Responders had a more pragmatic and permissive view than the restrictive, official Swedish policy opposing hymenoplasties within the public healthcare system. There were degrees of willingness to accommodate such requests, due, for example, to different moral beliefs and medical concerns. Responders expressed frustration over the difficulty of following up patients, a situation likely due to the restrictive policy. The patient-centred approach adopted by a Dutch team of health professionals would probably better enable quality assurance.
|
|
| 44. |
|
|
| 45. |
|
|
| 46. |
|
|
| 47. |
- Juth, Niklas, 1973
(författare)
-
När är idrotten jämställd?
- 2000
-
Ingår i: Filosofisk tidskrift. ; :2, s. 49-60
-
Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
|
|
| 48. |
- Juth, Niklas, 1973, et al.
(författare)
-
Om ojämlikhet
- 2003
-
Ingår i: Tidskrift för politisk filosofi. ; :2, s. 5-39
-
Forskningsöversikt (refereegranskat)
|
|
| 49. |
|
|
| 50. |
- Juth, Niklas, et al.
(författare)
-
Should we accept a higher cost per health improvement for orphan drugs? A review and analysis of egalitarian arguments
- 2021
-
Ingår i: Bioethics. - : WILEY. - 0269-9702 .- 1467-8519. ; 35:4, s. 307-314
-
Forskningsöversikt (refereegranskat)abstract
- In recent years, the issue of accepting a higher cost per health improvement for orphan drugs has been the subject of discussion in health care policy agencies and the academic literature. This article aims to provide an analysis of broadly egalitarian arguments for and against accepting higher costs per health improvement. More specifically, we aim to investigate which arguments one should agree upon putting aside and where further explorations are needed. We identify three kinds of arguments in the literature: considerations of substantial equality, formal equality, and opportunity cost. We argue that considerations of substantial equality do not support higher costs per health improvement orphan drugs, even if such considerations are considered valid. On the contrary, arguments of formal equality may support accepting a higher cost per health improvement for orphan drugs. However, in order to do so, a number of both normative and empirical issues must be resolved; these issues are identified in the article. For instance, it must be settled to what extent the opportunity cost in terms of foregone health for other patients is acceptable in order to uphold formal equality. We conclude that certain arguments can be set aside, and future focus should be put on the unresolved normative and empirical issues related to formal equality and opportunity cost.
|
|
