Refugees and asylum seekers may experience challenges related to pre-arrival experiences, structural disadvantage after migration and during resettlement requiring the need for special protection when participating in research. The aim was to review if and how people with refugee and asylum seeker backgrounds have had their need for special protection addressed in national and international research ethics guidelines. A systematic search of grey literature was undertaken. The search yielded 2187 documents of which fourteen met the inclusion criteria. Few guidelines addressed (...) specific ethical considerations for vulnerable groups much less people with refugee and asylum seeker backgrounds. One guideline explicitly addressed vulnerability for refugees and asylums seekers. To ensure members of ethics committees and researchers consider the potential challenges of conducting research with these groups, guidelines may need to be supplemented with a refugee and asylum seeker specific research ethics framework. Such a framework may be necessary to optimally protect people with refugee and asylum seeker backgrounds in research. (shrink)

Bioethics, Volume 36, Issue 2, Page 162-169, February 2022.

Several studies show that healthcare professionals need to communicate inter-professionally in order to manage ethical difficulties. A model of clinical ethics support inspired by Habermas’ theory of discourse ethics has been developed by our research group. In this version of CES sessions healthcare professionals meet inter-professionally to communicate and reflect on ethical difficulties in a cooperative manner with the aim of reaching communicative agreement or reflective consensus. In order to understand the course of action during CES, the aim of this (...) study was to describe the communication of value conflicts during a series of inter-professional CES sessions. Ten audio- and video-recorded CES sessions were conducted over eight months and were analyzed by using the video analysis tool Transana and qualitative content analysis. The results showed that during the CES sessions the professionals as a group moved through the following five phases: a value conflict expressed as feelings of frustration, sharing disempowerment and helplessness, the revelation of the value conflict, enhancing realistic expectations, seeing opportunities to change the situation instead of obstacles. In the course of CES, the professionals moved from an individual interpretation of the situation to a common, new understanding and then to a change in approach. An open and permissive communication climate meant that the professionals dared to expose themselves, share their feelings, face their own emotions, and eventually arrive at a mutual shared reality. The value conflict was not only revealed but also resolved. (shrink)

Driven by interests in workforce planning and patient safety, a growing body of literature has begun to identify the reality and the prevalence of missed nursing care, also specified as care left undone, rationed care or unfinished care. Empirical studies and conceptual considerations have focused on structural issues such as staffing, as well as on outcome issues – missed care/unfinished care. Philosophical and ethical aspects of unfinished care are largely unexplored. Thus, while internationally studies highlight instances of covert rationing/missed care/care (...) left undone – suggesting that nurses, in certain contexts, are actively engaged in rationing care – in terms of the nursing and nursing ethics literature, there appears to be a dearth of explicit decision-making frameworks within which to consider rationing of nursing care. In reality, the assumption of policy makers and health service managers is that nurses will continue to provide full care – despite reducing staffing levels and increased patient turnover, dependency and complexity of care. Often, it would appear that rationing/missed care/nursing care left undone is a direct response to overwhelming demands on the nursing resource in specific contexts. A discussion of resource allocation and rationing in nursing therefore seems timely. The aim of this discussion paper is to consider the ethical dimension of issues of resource allocation and rationing as they relate to nursing care and the distribution of the nursing resource. (shrink)

The next World Congress of Bioethics will be held in Doha, Qatar. Although this location provides opportunities to interact with a more culturally diverse audience, to advance dialogue between cultures and religions, offer opportunities for mutual learning, there are also huge moral concerns. Qatar is known for violations of human rights ‐ including the treatment of migrant workers and the rights of women ‐ corruption, criminalization of LGBTQI+ persons, and climate impact. Since these concerns are also key (bio)ethical concern we (...) call for a broad debate within the bioethics community whether organizing and attending the World Congress in Qatar is ethically problematic and how ethical concerns should be dealt with. (shrink)

The under-representation of women on boards is a heavily discussed topic—not only in Germany. Based on critical mass theory and with the help of a hand-collected panel dataset of 151 listed German firms for the years 2000–2005, we explore whether the link between gender diversity and firm performance follows a U-shape. Controlling for reversed causality, we find evidence for gender diversity to at first negatively affect firm performance and—only after a “critical mass” of about 30 % women has been reached—to (...) be associated with higher firm performance than completely male boards. Given our sample firms, the critical mass of 30 % women translates into an absolute number of about three women on the board and hence supports recent studies on a corresponding “magic number” of women in the boardroom. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

We apply Benacerraf’s distinction between mathematical ontology and mathematical practice to examine contrasting interpretations of infinitesimal mathematics of the seventeenth and eighteenth century, in the work of Bos, Ferraro, Laugwitz, and others. We detect Weierstrass’s ghost behind some of the received historiography on Euler’s infinitesimal mathematics, as when Ferraro proposes to understand Euler in terms of a Weierstrassian notion of limit and Fraser declares classical analysis to be a “primary point of reference for understanding the eighteenth-century theories.” Meanwhile, scholars like (...) Bos and Laugwitz seek to explore Eulerian methodology, practice, and procedures in a way more faithful to Euler’s own. Euler’s use of infinite integers and the associated infinite products are analyzed in the context of his infinite product decomposition for the sine function. Euler’s principle of cancellation is compared to the Leibnizian transcendental law of homogeneity. The Leibnizian law of continuity similarly finds echoes in Euler. We argue that Ferraro’s assumption that Euler worked with a classical notion of quantity is symptomatic of a post-Weierstrassian placement of Euler in the Archimedean track for the development of analysis, as well as a blurring of the distinction between the dual tracks noted by Bos. Interpreting Euler in an Archimedean conceptual framework obscures important aspects of Euler’s work. Such a framework is profitably replaced by a syntactically more versatile modern infinitesimal framework that provides better proxies for his inferential moves. (shrink)

Did Leibniz exploit infinitesimals and infinities à la rigueur or only as shorthand for quantified propositions that refer to ordinary Archimedean magnitudes? Hidé Ishiguro defends the latter position, which she reformulates in terms of Russellian logical fictions. Ishiguro does not explain how to reconcile this interpretation with Leibniz’s repeated assertions that infinitesimals violate the Archimedean property (i.e., Euclid’s Elements, V.4). We present textual evidence from Leibniz, as well as historical evidence from the early decades of the calculus, to undermine Ishiguro’s (...) interpretation. Leibniz frequently writes that his infinitesimals are useful fictions, and we agree, but we show that it is best not to understand them as logical fictions; instead, they are better understood as pure fictions. (shrink)

Recently Robert B. Talisse has put forth a socio-epistemic justification of liberal democracy that he believes qualifies as a public justification in that it purportedly can be endorsed by all reasonable individuals. In avoiding narrow restraints on reasonableness, Talisse argues that he has in fact proposed a justification that crosses the boundaries of a wide range of religious, philosophical and moral worldviews and in this way the justification is sufficiently pluralistic to overcome the challenges of reasonable pluralism familiar from Rawls. (...) The fascinating argument that Talisse furthers is that when cognitively functional individuals reflect on some of their most basic epistemic commitments they will come to see that, in virtue of these commitments, they are also committed to endorsing key liberal democratic institutions. We argue that the socio-epistemic justification can be reasonably rejected on its own terms and thus fails as a public justification approach. This point is made by illustrating the significance of deep epistemic disagreements in liberal democracies. (shrink)

We explored the possibility of a general brightness bias: brighter pictures are evaluated more positively, while darker pictures are evaluated more negatively. In Study 1 we found that positive pictures are brighter than negative pictures in two affective picture databases (the IAPS and the GAPED). Study 2 revealed that because researchers select affective pictures on the extremity of their affective rating without controlling for brightness differences, pictures used in positive conditions of experiments were on average brighter than those used in (...) negative conditions. Going beyond correlational support for our hypothesis, Studies 3 and 4 showed that brighter versions of neutral pictures were evaluated more positively than darker versions of the same picture. Study 5 revealed that people categorised positive words more quickly than negative words after a bright picture prime, and vice versa for negative pictures. Together, these studies provide strong support for the hypotheses that picture brightness influences evaluations. (shrink)

The present study assessed business students’ responses to an innovative interactive presentation on academic integrity that employed quoted material from previous students as launching points for discussion. In total, 15 business classes ( n = 412 students) including 2nd, 3rd and 4th year level students participated in the presentations as part of the ethics component of ongoing courses. Students’ perceptions of the importance of academic integrity, self-reports of cheating behaviors, and factors contributing to misconduct were examined along with perceptions about (...) the presentation. Discussion sessions revealed that academic misconduct is a complex issue. For example, knowledge of what constitutes misconduct was not consistent across domains (e.g. exam contexts versus group work), penalties were not wholly known, and there was variation in perceived responsibility for reporting and representing academic integrity. Survey measures revealed that self-reported academic misconduct was more prevalent than expected with only 7.5% of students indicating they had never cheated in any way. Furthermore, results showed gender and year of study as predictive factors for issues related to academic misconduct. In general, students were receptive to this form of presentation. The implications of such instructional interventions for enhancing ethical behaviors in higher education classrooms are discussed. (shrink)

This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, (...) with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more. (shrink)

Late in 1990, the Center for the Study of Ethics in the Professions at Illinois Institute of Technology (lIT) received a grant of more than $200,000 from the National Science Foundation to try a campus-wide approach to integrating professional ethics into its technical curriculum.! Enough has now been accomplished to draw some tentative conclusions. I am the grant's principal investigator. In this paper, I shall describe what we at lIT did, what we learned, and what others, especially philosophers, can learn (...) from us. We set out to develop an approach that others could profitably adopt. I believe that we succeeded. (shrink)

_Objective:_ The aim of the current study was to investigate associations, unique and interactive, between mothers’ and children’s histories of childhood sexual abuse (CSA) and children’s psychiatric outcomes using an intergenerational perspective. Further, we were particularly interested in examining whether maternal reflective functioning about their own trauma (T-RF) was associated with a lower likelihood of children’s abuse exposure (among children of CSA-exposed mothers). _Methods:_ One hundred and eleven children ( M age = 9.53 years; 43 sexual abuse victims) and their (...) mothers ( M age = 37.99; 63 sexual abuse victims) participated in this study. Mothers completed the Parent Development Interview (PDI), which yielded assessments of RF regarding their own experiences of abuse, and also reported on their children’s internalizing and externalizing symptoms. _Results:_ Children of CSA-exposed mothers were more likely to have experienced CSA. A key result was that among CSA-exposed mothers, higher maternal T-RF regarding their own abuse was associated with lower likelihood of child CSA-exposure. Mothers’ and children’s CSA histories predicted children’s internalizing and externalizing symptoms, such that CSA exposure for mother or child was associated with greater symptomatology in children. _Conclusion:_ The findings show that the presence of either maternal or child CSA is associated with more child psychological difficulties. Importantly in terms of identifying potential protective factors, maternal T-RF is associated with lower likelihood of CSA exposure in children of CSA-exposed mothers. We discuss these findings in the context of the need for treatments focusing on increasing T-RF in mothers and children in the context of abuse to facilitate adaptation and reduce the intergenerational risk. (shrink)

Reading fiction for pleasurable is robustly correlated with improved cognitive attainment and other benefits. It is also in decline among young people in developed nations, in part because of competition from moving image fiction. We review existing research on the differences between reading/hearing verbal fiction and watching moving image fiction, as well as looking more broadly at research on image/text interactions and visual versus verbal processing. We conclude that verbal narrative generates more diverse responses than moving image narrative., We note (...) that reading and viewing narrative are different tasks, with different cognitive loads. Viewing moving image narrative mostly involves visual processing with some working memory engagement, whereas reading narrative involves verbal processing, visual imagery and personal memory (Xu et al 2005). but Attempts to compare the two by creating suggest that existing research is flawed by attempts to create equivalent stimuli and task demands face a number of challenges, and we discuss these difficulties in comparative approaches. We then investigate the possibility of identifying lower level processing mechanisms that might distinguish cognition of the two media, and propose a focus on internal scene construction and on working memory as foci for future research. Although many of the sources we draw on are focussed on English speaking participants in European or North American settings, we also cover material relating to speakers of Dutch, German, Hebrew and Japanese in their respective countries, and studies of a remote Turkish mountain community. (shrink)

Multiple Sclerosis is a debilitating chronic autoimmune disease of the central nervous system that results in lower quality of life. Medication adherence is important for reducing relapse, disease progression, and MS-related symptoms, particularly during the early stages of MS. However, adherence may be impacted by negative emotional states. Therefore, it is important to identify protective factors. Past research suggests that the ability to discriminate between negative emotional states, also known as negative emotion differentiation, may be protective against enactment of maladaptive (...) risk-related behaviors. However, less is known as to how NED may promote adaptive health behaviors such as medication adherence. Utilizing weekly diaries, we investigated whether NED moderates the association between negative affect and medication adherence rates across 58 weeks among patients newly diagnosed with MS. Results revealed that NED significantly moderated the relationship between negative affect and medication adherence. Specifically, greater negative affect was associated with lower adherence only for individuals reporting low NED. However, this link disappeared for those reporting moderate to high NED. Building upon past research, our findings suggest that NED may promote adaptive health behaviors and have important clinical implications for the treatment and management of chronic illness. (shrink)

How does science create knowledge? Epistemic cultures, shaped by affinity, necessity, and historical coincidence, determine how we know what we know. In this book, Karin Knorr Cetina compares two of the most important and intriguing epistemic cultures of our day, those in high energy physics and molecular biology. The first ethnographic study to systematically compare two different scientific laboratory cultures, this book sharpens our focus on epistemic cultures as the basis of the knowledge society.

As part of the Dutch national science program “Professional Games for Professional Skills” we developed a stress-exposure biofeedback training in virtual reality for the Dutch police. We aim to reduce the acute negative impact of stress on performance, as well as long-term consequences for mental health by facilitating physiological stress regulation during a demanding decision task. Conventional biofeedback applications mainly train physiological regulation at rest. This might limit the transfer of the regulation skills to stressful situations. In contrast, we provide (...) the user with the opportunity to practice breathing regulation while they carry out a complex task in VR. This setting poses challenges from a technical – as well as from a user-experience perspective. We illustrate how we approach these challenges in our training and hope to contribute a useful reference for researchers and developers in academia or industry who are interested in using biosignals to control elements in a dynamic virtual environment. (shrink)

Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient’s life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.

Submission by 31st July 2021 The relationship between pragmatism and critical realism is open to many interpretations. On the one hand, compared to more traditional approaches, the two approaches s...

BackgroundSeveral studies identified low subjective feelings of power in women with anorexia nervosa. However, little is known about implicit power motives and the discrepancy between explicit feelings of power and implicit power motives in AN.AimThe study investigated the discrepancy between explicit feelings of power and implicit power motives and its relationship to anxiety in patients with AN.MethodFifty-three outpatients and inpatients with AN and 48 participants without AN were compared regarding subjective feelings of power and anxiety. Explicit power [investigated with the (...) Personal Sense of Power Scale and a visual analog scale ], implicit power motives [investigated with the Multi-Motive Grid ] and trait anxiety [measured with the State-Trait Anxiety Inventory ], were assessed.ResultsExplicit feelings of power were lower in patients with AN compared to non-AN participants. No differences in implicit power motives were found when comparing the groups against each other. However, looking at the groups separately, women with AN had similar levels of implicit fear of losing power and hope for power, whereas woman without AN had significantly lower fear of losing power than hope for power. Focusing on discrepancies between powerful feelings and power motives, results were mixed, depending on the subscale of the MMG. Lastly, discrepancies between implicit power motives and explicit feelings of power were positively correlated with trait anxiety in AN patients.ConclusionThese findings underline that individuals with AN display significantly lower explicit feelings of power, however, they show similar implicit power motives compared to individuals without AN. The discrepancy between explicit feelings of power and implicit power motives is related to anxiety in AN and may represent a vulnerability factor to illness maintenance. (shrink)

To explore the extent of embeddability of Leibnizian infinitesimal calculus in first-order logic (FOL) and modern frameworks, we propose to set aside ontological issues and focus on pro- cedural questions. This would enable an account of Leibnizian procedures in a framework limited to FOL with a small number of additional ingredients such as the relation of infinite proximity. If, as we argue here, first order logic is indeed suitable for developing modern proxies for the inferential moves found in Leibnizian infinitesimal (...) calculus, then modern infinitesimal frameworks are more appropriate to interpreting Leibnizian infinitesimal calculus than modern Weierstrassian ones. (shrink)

This study has explored the relation between dance achievement and alexithymia in a larger Swedish population sample (Swedish Twin Registry) with a study sample of 5431 individuals. Dance achievement (CAQ) was assessed in relation to Alexithymia (Toronto Alexithymia Scale, TAS-20) including the three subscales: Difficulty Identifying Feelings (DIF), Difficulty Describing Feelings (DDF), and Externally Oriented Thinking (EOT). The results show a significant negative association between the TAS subscale (EOT) and creative achievement in dance. A high EOT score corresponds to poor (...) ability to communicate feelings to the environment. There was no consistent association between the other factors DIF and DDF and dance achievement. Dance activity and training seem to be involved in the body’s emotional interplay with others. Embodied cognition, emotional perception, and action are discussed as factors relevant to measuring the skill of a dancer. (shrink)

Food images are useful stimuli for the study of cognitive processes as well as eating behavior. To enhance rigor and reproducibility in task-based research, it is advantageous to have stimulus sets that are publicly available and well characterized. Food Folio by Columbia Center for Eating Disorders is a publicly available set of 138 images of Western food items. The set was developed for the study of eating disorders, particularly for use in tasks that capture eating behavior characteristic of these illnesses. (...) It contains foods that are typically eaten, as well as those typically avoided, by individuals with eating disorders. Each image has now been rated across 17 different attributes by a large general United States population sample via Amazon’s Mechanical Turk. Ratings included subjective attributes as well as estimates of nutrient content. Each participant rated a subset of stimulus set food items on all 17 dimensions. Additional description of the image set is provided in terms of physical image information and accurate nutritional information. Correlations between subjective ratings were calculated and an exploratory factor analysis and exploratory cluster analysis completed. Outcomes of the factor analysis suggested foods may be described along three latent factors of healthiness, tastiness, and umami taste; the cluster analysis highlighted five distinct clusters of foods varying on these same dimensions. Descriptive outcomes indicated that the stimulus set includes a range of foods that vary along multiple dimensions and thus is likely to be useful in addressing various research questions surrounding eating behavior and cognition in healthy populations, as well as in those with eating disorders. The provision of comprehensive descriptive information allows for stimulus selection that is optimized for a given research question and promotes strong inference. (shrink)

Regenerative Medicine promises to develop treatments to regrow healthy tissues and cure the physical body. One of the emerging developments within this field is regenerative implants, such as jawbone or heart valve implants, that can be broken down by the body and are gradually replaced with living tissue. Yet challenges for embodiment are to be expected, given that the implants are designed to integrate deeply into the tissue of the living body, so that implant and body become one. In this (...) paper, we explore how regenerative implants may affect the embodied experience of implant recipients. To this end, we take a phenomenological approach. First, we explore what insights the existing phenomenological and empirical literature on embodiment offers regarding the experience of illness and of living with regular (non-regenerative) implants and organ transplants. Second, we apply these insights to better understand how future implant recipients might experience living with regenerative implants. Third, we conclude that concepts and considerations from the existing phenomenological literature do not sufficiently address what it might be like to live with an implantable technology that, over time, becomes one with the living body. We argue that the interwovenness and intimate relationship of people living with regenerative implants should be understood in terms of ‘entanglement’. Entanglement allows us to explore the complexities of human-technology relations, acknowledging the inseparability of humans and implantable technologies. Our theoretical foundations regarding the role of embodiment may be tested empirically once more people will be living with regenerative implants. (shrink)

Recent global advances in available technology to prevent mother-to-child HIV transmission necessitate a rethinking of contemporary and previous ethical debates on HIV testing as a means to preventing vertical transmission. In this paper, we will provide an ethical analysis of HIV-testing strategies of pregnant women. First, we argue that provider-initiated opt-out HIV testing seems to be the most effective HIV test strategy. The flip-side of an opt-out strategy is that it may end up as involuntary testing in a clinical setting. (...) We analyse this ethical puzzle from a novel perspective, taking into account the moral importance of certain hypothetical preferences of the child, as well as the moral importance of certain actual preferences of the mother. Finally, we balance the conflicting concerns and try to arrive at an ethically sound solution to this dilemma. Our aim is to introduce a novel perspective from which to analyse testing strategies, and to explore the implications and possible benefits of our proposal. The conclusion from our analysis is that policies that recommend provider-initiated opt-out HIV testing of pregnant mothers, with a risk of becoming involuntary testing in a clinical setting, are acceptable. The rationale behind this is that the increased availability of very effective and inexpensive life-saving drugs makes the ethical problems raised by the possible intrusiveness of HIV testing less important than the child's hypothetical preferences to be born healthy. Health care providers, therefore, have a duty to offer both opt-out HIV testing and available PMTCT (preventing mother-to-child transmission) interventions. (shrink)

The introduction of chatGPT illustrates the rapid developments within Conversational Artificial Intelligence (CAI) technologies (Gordijn and Have 2023). Ethical reflection and analysis of CAI are c...

The typical function of goals is to regulate action in a way that furthers goal achievement. Goals are typically set on the assumption that they will help bring the agent closer to the desired state of affairs. However, sometimes endorsement of a goal, or the processes by which the goal is set, can obstruct its achievement. When this happens, the goal is self-defeating. Self-defeating goals are common in both private and social decision-making but have not received much attention by decision (...) theorists. In this paper, we investigate different variants of three major types of self-defeating mechanisms: The goal can be an obstacle to its own fulfilment, goal-setting activities can impede goal achievement, and disclosure of the goal can interfere with its attainment. Different strategies against self-defeasance are tentatively explored, and their efficiency against different types of self-defeasance is investigated. (shrink)

The evaluation of study habits as determinant factors in academic performance is a concern for educational agents because they determine the academic opportunities of students. However, a problem encountered is the accessibility of valid and reliable instruments to evaluate study habits from the students' point of view. In this sense, this paper analyzes the internal structure, reliability, and rating of the study habits perception questionnaire. The results and the practical contribution to the educational community in guiding intervention to improve students' (...) academic opportunities are discussed. (shrink)

Background Person-centred care is based on ethical principles, and it is regarded as high-quality care. Care of older persons should embrace person-centredness. During the pandemic, older persons were highlighted as a vulnerable group at risk of developing serious illness and/or suffering death from COVID-19. Several pandemic-related measures were introduced in residential care facilities (RCFs) to reduce this risk, which influenced the possibilities to lead and provide a person-centred care. Aim This study’s aim was to explore ethical challenges in relation to (...) person-centredness during the COVID-19 pandemic, from the perspective of leaders in RCFs. Research design The study had a qualitative descriptive design. Participants and research context Semi-structured interviews were conducted with 26 leaders working in RCFs in Sweden. Data were analysed using conventional content analysis. Ethical considerations The study was approved by the Swedish Ethical Review Authority. The participants received oral and written information about the study and gave written consent. The study was conducted in accordance with the Declaration of Helsinki. Findings The overarching ethical challenge was Having to disregard the individual needs of the person in order to protect the group and society. This included (a) Protecting the group versus promoting the older person’s autonomy; (b) Being forced to lead care based on uncertainty instead of evidence; (c) Striving to provide dignified care but lacking opportunities; and (d) Going far beyond ordinary duty and endangering one’s own and the staff’s health. Discussion The ethical challenges meant being torn between the person’s individual needs and protecting the group and society, with clashing ethical principles as a consequence. Conclusions The leaders faced ethical situations resulting in undignified and compromised person-centred care, which has implications for stakeholders and management who need to address the work conditions in RCFs. (shrink)

Este artigo discute o mal-estar de adolescentes de duas escolas públicas da cidade do Rio de Janeiro, no contexto de retorno presencial das aulas pós-pandemia da COVID-19. Durante o contexto de isolamento, a escola teve de se ressignificar como lugar de aprendizagem, de convivência e de mediações com tecnologias até então ausentes, e atualmente tem que se reconstruir, territorialmente, como um lugar possível de afeto e transmissão. A escola é uma das instâncias que se ocupa desta tarefa, em que o (...) jogo de forças entre os grupos e a subjetividade se faz presente. No entanto, a ausência territorial da escola no período de isolamento social foi inevitável. A questão central a que este artigo busca responder é de que maneira o pressuposto freudiano de que o mal-estar faz parte e é inerente à relação entre o sujeito e a cultura, aparece, e sob que aspectos, nesta experiência de retorno às escolas, no período pós-pandemia. Quer nas dificuldades de aprendizagem, diante do lugar do outro, no conflito entre temporalidade e demanda, nas estratégias de enfrentamento e na distância entre os projetos e a realidade, os estudantes revelam suas angústias e novos modos de lidar com a condição de mal-estar. (shrink)

BackgroundNew disease-modifying ways to treat Parkinson’s disease (PD) may soon become a reality with intracerebral transplantation of cell products produced from human embryonic stem cells (hESCs). The aim of this study was to assess what factors influence preferences of patients with PD regarding stem-cell based therapies to treat PD in the future.MethodsPatients with PD were invited to complete a web-based discrete choice experiment to assess the importance of the following attributes: (i) type of treatment, (ii) aim of treatment, (iii) available (...) knowledge of the different types of treatments, (iv) effect on symptoms, and (v) risk for severe side effects. Latent class conditional logistic regression models were used to determine preference estimates and heterogeneity in respondents’ preferences.ResultsA substantial difference in respondents’ preferences was observed in three latent preference patterns (classes). “Effect on symptoms” was the most important attribute in class 1, closely followed by “type of treatment,” with medications as preferred to other treatment alternatives. Effect on symptoms was also the most important attribute in class 2, with treatment with hESCs preferred over other treatment alternatives. Likewise for class 3, that mainly focused on “type of treatment” in the decision-making. Respondents’ class membership was influenced by their experience in treatment, side effects, and advanced treatment therapy as well as religious beliefs.ConclusionsMost of the respondents would accept a treatment with products emanating from hESCs, regardless of views on the moral status of embryos. Preferences of patients with PD may provide guidance in clinical decision-making regarding treatments deriving from stem cells. (shrink)

We examined the relation between home literacy environment (HLE) and early literacy development in a sample of children learning four alphabetic orthographies varying in orthographic consistency (English, Dutch, German, and Greek). Seven hundred and fourteen children were followed from Grade 1 to Grade 2 and tested on emergent literacy skills (vocabulary, letter knowledge, and phonological awareness) at the beginning of Grade 1 and on word reading fluency and spelling at the end of Grade 1, the beginning of Grade 2, and (...) the end of Grade 2. Their parents responded to a questionnaire assessing HLE [parent teaching (PT), shared book reading (SBR), access to literacy resources (ALR)] at the beginning of Grade 1. Results showed first that PT was associated with letter knowledge or phonological awareness in Dutch and Greek, while ALR was associated with emergent literacy skills in all languages. SBR did not predict any cognitive or early literacy skills in any language. Second, PT and ALR had indirect effects on literacy outcomes via different emergent literacy skills in all languages. These findings suggest that not all HLE components are equally important for emergent literacy skills, reading fluency, and spelling. No specific trend in the role of orthographic consistency in the aforementioned relations emerged, which suggests that other factors may account for the observed differences across languages when children start receiving formal reading instruction in Grade 1. (shrink)

We support the idea of applying cultural evolution theory to the study of storytelling, and fiction in particular. However, we suggest that a more plausible link between real and imaginary worlds is the feeling of “presence” we can experience in both of them: we feel present when we are able to correctly and intuitively enact our embodied predictions.

Despite widespread and worldwide efforts to eradicate vector-borne diseases such as malaria, these diseases continue to have an enormous negative impact on public health. For this reason, scientists are working on novel control strategies, such as gene drive technologies (GDTs). As GDT research advances, researchers are contemplating the potential next step of conducting field trials. An important point of discussion regarding these field trials relates to who should be informed, consulted, and involved in decision-making about their design and launch. It (...) is generally argued that community members have a particularly strong claim to be engaged, and yet, disagreement and lack of clarity exist about how this “community” should be defined and delineated. In this paper, we shed light on this “boundary problem”: the problem of determining how boundaries of inclusion and exclusion in (GDT) community engagement should be drawn. As our analysis demonstrates, the process of defining and delineating a community is itself normative. First, we explicate why it is important to define and delineate the community. Second, we demonstrate that different definitions of community are used and intermingled in the debate on GDTs, and argue in favor of distinguishing geographical, affected, cultural, and political communities. Finally, we propose initial guidance for deciding who should (not) be engaged in decision-making about GDT field trials, by arguing that the definition and delineation of the community should depend on the rationale for engagement and that the characteristics of the community itself can guide the effective design of community engagement strategies. (shrink)

Sankary et al. (2022) report the results of an empirical study on research participant experiences of exiting research at the end of clinical trials of deep-brain-stimulation (DBS) and responsive n...

Background Palliative care needs in older persons can endanger their dignity. To provide dignity-conserving care to older persons, the Swedish Dignity Care Intervention (DCI-SWE) can be used. The DCI-SWE is built on Chochinov’s dignity model and the original version, developed and tested in UK and Scotland. Aim To describe older persons’ and their relatives’ experiences of dignity and dignity-conserving care when using the DCI-SWE in municipal health care. Research design A mixed method study with convergent parallel design. Participants and research (...) context The DCI-SWE was used and evaluated in a Swedish municipality health care context. Older persons’ ( n=17) dignity-related distress and quality of life were assessed after the intervention. Interviews with older persons ( n=10) and their relatives ( n=8) were analysed using thematic analysis. Ethical considerations The study followed the World Medical Association Declaration of Helsinki. Ethical approval was obtained from the Regional Ethical Review Board in Uppsala, Sweden (Reg No. 2014/312) and the National Swedish Ethical Review Authority (Reg. No. Ö 10-2019). Informed consent was collected from older persons and their relatives. Findings The older persons’ dignity-related distress did not significantly change over time ( p = 0.44) neither was their overall quality of life ( p =.64). Only psychological quality of life was decreased significantly ( p = 0.01). The older persons and their relatives emphasized the importance of valuing the individual. Conclusions The DCI-SWE provides a forum to talk about dignity issues, but relevant competence, continuity and resources are needed. Psychological care actions and health care professionals’ communication skills training are important. To fully evaluate, the DCI-SWE a larger sample and validated instruments are necessary. (shrink)