ObjectiveFatigue after burns is often attributed to the hyperinflammatory and hypermetabolic response, while it may be best understood from a bio-psychological perspective, also involving the neuro-endocrine system. This longitudinal multi-center study examined the course of fatigue up to 18 months postburn. The contribution of bio-psychological factors, including burn severity, pain, and acute PTSD symptoms, to the course and persistence of fatigue was studied in a multifactorial model.MethodsParticipants were 247 adult burn survivors. Fatigue symptoms were assessed with the Multidimensional Fatigue Inventory (...) during the acute phase and subsequently at 3, 6, 12, and 18 months postburn, and were compared to population norms. Age, gender, burn severity, acute PTSD symptoms and pain were assessed as potential predictors of fatigue over time in a latent growth model.ResultsAt 18 months postburn, 46% of the burn survivors reported fatigue, including 18% with severe fatigue. In the acute phase, higher levels of fatigue were related to multiple surgeries, presence of pain, and higher levels of acute PTSD symptoms. Fatigue gradually decreased over time with minor individual differences in rate of decrease. At 18 months, pain and acute PTSD symptoms remained significant predictors of fatigue levels.ConclusionsProtracted fatigue after burns was found in almost one out of five burn survivors and was associated with both pain and acute PTSD symptoms. Early detection of PTSD symptoms and early psychological interventions aimed at reducing PTSD symptoms and pain may be warranted to reduce later fatigue symptoms. (shrink)

Precision livestock farming (PLF) is the management of livestock using the principles and technology of process engineering. Key to PLF is the dense monitoring of variegated parameters, including animal growth, output of produce (e.g. milk, eggs), diseases, animal behaviour, and the physical environment (e.g. thermal micro-environment, ammonia emissions). While its proponents consider PLF a win-win strategy that combines production efficiency with sustainability goals and animal welfare, critics emphasise, inter alia, the potential interruption of human-animal relationships. This paper discusses the notion (...) that the objectification of animals by PLF influences the developmental pathways of conventional industrial farming. We conduct a conceptual analysis of objectification by comparing discussions in feminist ethics and animal ethics. We find that in animal ethics, objectification includes deontological arguments regarding instrumentalisation, de-animalisation, alienation, commodification and quantification of animals. The focus on socio-political context and relationality connects these debates to central ideas in care ethics. We adopt a care ethics perspective to assess the implications of the objectification of animals in livestock farming. The basic claim is that sensory knowledge symbolised by the farmers’ unity of hand, head and heart would make it harder to objectify animals than abstract and instrumental reasoning where the pursuit of knowledge is intertwined with the pursuit of control, as in mainstream PLF. Despite of what can be considered as a good caring relationship between farmers and animals that is mediated by PLF, people involved in conventional industrial farming still seem to become further detached from farmers and animals, because the PLF system itself is objectifying. PLF redefines the notion of care, in terms of data transparency, standardisation of methods for analysis, real-time collection and processing of data, remote control, and the use of digital platforms. This creates new expectations and requires a redistribution of responsibilities within a wider scope of relations in the value chain. (shrink)

Our study presents an overview of the issues that were brought forward by participants of a moral case deliberation (MCD) project in two elderly care organizations. The overview was inductively derived from all case descriptions (N = 202) provided by participants of seven mixed MCD groups, consisting of care providers from various professional backgrounds, from nursing assistant to physician. The MCD groups were part of a larger MCD project within two care institutions (residential homes and nursing homes). Care providers are (...) confronted with a wide variety of largely everyday ethical issues. We distinguished three main categories: ‘resident’s behavior’, ‘divergent perspectives on good care’ and ‘organizational context’. The overview can be used for agendasetting when institutions wish to stimulate reflection and deliberation. It is important that an agenda is constructed from the bottom-up and open to a variety of issues. In addition, organizing reflection and deliberation requires effort to identify moral questions in practice whilst at the same time maintaining the connection with the organizational context and existing communication structures. Once care providers are used to dealing with divergent perspectives, inviting different perspectives (e.g. family members) to take part in the deliberation, might help to identify and address ethical ‘blind spots’. (shrink)

Moral case deliberation (MCD) is a specific form of clinical ethics, aiming to stimulate ethical reflection in daily practice in order to improve the quality of care. This article focuses on the implementation of MCD in nursing homes and the questions how and where to organize MCD. The purpose of this study was to evaluate one way of organizing MCD in two Dutch nursing homes. In both of these nursing homes the MCD groups had a heterogeneous composition and were organized (...) apart from existing institutional communication structures. As part of a naturalistic evaluation, systematic observations, interviews and focus groups were completed. The findings indicate that the heterogeneous composition and MCD meetings separate from existing structures have benefits. However, the participants also reported negative experiences. This gives rise to the question whether a mixed MCD group which meets separately is an effective way to embed MCD as an instrument for reflection on moral issues in daily practice. We conclude that there is no single answer to that question. In the end, the two implementation strategies (i.e. within existing communication structures and a mixed MCD group) can be complementary to each other. (shrink)

Moral case deliberation (MCD) is a specific form of clinical ethics, aiming to stimulate ethical reflection in daily practice in order to improve the quality of care. This article focuses on the implementation of MCD in nursing homes and the questions how and where to organize MCD. The purpose of this study was to evaluate one way of organizing MCD in two Dutch nursing homes. In both of these nursing homes the MCD groups had a heterogeneous composition and were organized (...) apart from existing institutional communication structures. As part of a naturalistic evaluation, systematic observations, interviews and focus groups were completed. The findings indicate that the heterogeneous composition and MCD meetings separate from existing structures have benefits. However, the participants also reported negative experiences. This gives rise to the question whether a mixed MCD group which meets separately is an effective way to embed MCD as an instrument for reflection on moral issues in daily practice. We conclude that there is no single answer to that question. In the end, the two implementation strategies (i.e. within existing communication structures and a mixed MCD group) can be complementary to each other. (shrink)

In August 1976 the research seminar 'Decision-making in business' was organized at Nijenrode, The Netherlands School of Business. More than fifty scientists and practitioners from nine countries presented research papers in one of the six discussion groups. Some ofthem also presented some of their ideas in front of a large mixed audience at a one-day symposium. Many of the papers presented at Nijenrode were of such a high quality that the decision to publish a selection of them was an easy (...) one. At the same time the new series Nijenrode studies in business was initiated. All who were involved, the policy committee 'Of the Nijenrode studies, the advisory and editorial board of the series, the publisher, and the organizing committee of the seminar and symposium, acclaimed the idea of publishing three volumes in the new series. A collection of eleven papers could be grouped under the title Trends in managerial andfinancial accounting, and has been published as volume 1 of this series. A collection of fourteen papers has been published as the second volume under the title Trends in financial decision making, while this volume, consisting of twelve papers (and an introduction) explores the theme Trends in business ethics. The introduction by Stanley L. Jakiwas written for the symposium. It suggests why the papers of Pjotr Hesseling, Antoine Kreykamp, and Richard H. Viola, which were not presented at Nijenrode, are introduced here. (shrink)

There is ambiguity with regard to what counts as an acceptable level of risk in clinical research in pregnant women and there is no input from stakeholders relative to such research risks. The aim of our paper was to explore what stakeholders who are actively involved in the conduct of clinical research in pregnant women deem an acceptable level of risk for pregnant women in clinical research. Accordingly, we used the APOSTEL VI study, a low-risk obstetrical randomised controlled trial, as (...) a case-study. We conducted a prospective qualitative study using 35 in-depth semi-structured interviews and one focus group. We interviewed healthcare professionals, Research Ethics Committee members and regulators who are actively involved in the conduct of clinical research in pregnant women, in addition to pregnant women recruited for the APOSTEL VI case-study in the Netherlands. Three themes characterise the way stakeholders view risks in clinical research in pregnant women in general. Additionally, one theme characterises the way healthcare professionals and pregnant women view risks with respect to the case-study specifically. First, ideas on what constitutes an acceptable level of risk in general ranged from a preference for zero risk for the foetus up to minimal risk. Second, the desirability of clinical research in pregnant women in general was questioned altogether. Third, stakeholders proposed to establish an upper limit of risk in potentially beneficial clinical research in pregnant women in order to protect the foetus and the pregnant woman from harm. Fourth and finally, the case-study illustrates that healthcare professionals’ individual perception of risk may influence recruitment. Healthcare professionals, RECs, regulators and pregnant women are all risk adverse in practice, possibly explaining the continuing underrepresentation of pregnant women in clinical research. Determining the acceptable levels of risk on a universal level alone is insufficient, because the individual perception of risk also influences behaviour towards pregnant women in clinical research. Therefore, bioethicists and researchers might be interested in changing the perception of risk, which could be achieved by education and awareness about the actual benefits and harms of inclusion and exclusion of pregnant women. (shrink)

Background Notwithstanding the need to produce evidence-based knowledge on medications for pregnant women, they remain underrepresented in clinical research. Sometimes they are excluded because of their supposed vulnerability, but there are no universally accepted criteria for considering pregnant women as vulnerable. Our aim was to explore whether and if so to what extent pregnant women are vulnerable as research subjects. Method We performed a conceptual and empirical analysis of vulnerability applied to pregnant women. Analysis A conceptual analysis supports Hurst's definition (...) of vulnerability. Consequently, we argue that pregnant women are vulnerable if they encounter an identifiably increased likelihood of incurring additional or greater wrong. According to the literature, this increased likelihood could exist of four alleged features for pregnant women's vulnerability: informed consent, susceptibility to coercion, higher exposure to risk due to lack of knowledge, vulnerability of the fetus. Discussion Testing the features against Hurst's definition demonstrates that they all concern the same issue: pregnant women are only vulnerable because a higher exposure to risk due to lack of scientific knowledge comprises an increased wrong. Research Ethics Committees have a responsibility to protect the vulnerable, but a higher exposure to risk due to lack of scientific knowledge is a much broader issue and also needs to be addressed by other stakeholders. Conclusions The only reason why pregnant women are potentially vulnerable is to the extent that they are increasingly exposed to higher risks due to a lack of scientific knowledge. Accordingly, the discussion can advance to the development of practical strategies to promote fair inclusion of pregnant women in clinical research. (shrink)

According to embodied theories of language (ETLs), word meaning relies on sensorimotor brain areas, generally dedicated to acting and perceiving in the real world. More specifically, words denoting actions are postulated to make use of neural motor areas, while words denoting visual properties draw on the resources of visual brain areas. Therefore, there is a direct correspondence between word meaning and the experience a listener has had with a word's referent on the brain level. Behavioral and neuroimaging studies have provided (...) evidence in favor of ETLs; however, recent studies have also shown that sensorimotor information is recruited in a flexible manner during language comprehension (e.g., Raposo et al. ; Van Dam et al., ), leaving open the question as to what level of language processing sensorimotor activations contribute. In this study, we investigated the time course of modality‐specific contributions (i.e., the contribution of action information) as to word processing by manipulating both (a) the linguistic and (b) the action context in which target words were presented. Our results demonstrate that processes reflecting sensorimotor information play a role early in word processing (i.e., within 200 ms of word presentation), but that they are sensitive to the linguistic context in which a word is presented. In other words, when sensorimotor information is activated, it is activated quickly; however, specific words do not reliably activate a consistent sensorimotor pattern. (shrink)

ABSTRACTMajor depressive disorder is a prevalent condition with high relapse rates. There is evidence that cognitive reactivity is an important vulnerability factor for the recurrence of depression. Mindfulness-based interventions are designed to reduce relapse rates, with cognitive reactivity as one of the proposed working mechanisms. In a randomised controlled trial we compared the effect of mindfulness-based cognitive therapy with treatment-as-usual on cognitive reactivity in recurrently depressed patients. Depressive symptoms, cognitive reactivity, and mindfulness skills were assessed pre and post treatment. Patients (...) in the MBCT group reported a significantly greater reduction in cognitive reactivity than those in the TAU group. The reduction of cognitive reactivity appeared to mediate the association between MBCT/TAU and decrease of depressive symptoms, using pre and post scores. The current study provides evidence that MBCT reduces cognitive reactivity and preliminar... (shrink)

The proteins encoded by early region 1 A (E1A) of human adenoviruses (Ad) modulate the expression of both adenovirus genes and various host cell genes. With these transcription‐regulating properties the E1A proteins redirect the cell's metabolism, which enables them to induce oncogenic transformation in rodent cells. The E1A proteins modulate transcription by interacting both with gene‐specific and general cellular transcription factors. Various members of the AP‐1 and ATF/CREB families of transcription factors are targets for E1A‐dependent regulation, including cJun, the protein (...) product of the c‐jun proto‐oncogene. The E1A proteins modulate cJun‐dependent transcription both positively and negatively, and affect the activity as well as the expression levels of cJun. By increasing the phosphorylation status of cJun, E1A can stimulate transcription regulated by cJun/ATF2 heterodimers. In contrast, E1A inhibits the expression of various metalloproteases by interfering with the DNA‐binding capacity of cJun/cJun and cJun/cFos dimers, which might involve the association of E1A with the putative transcriptional coactivator p300. Since the ability of E1A to alter cJun‐dependent transcription correlates with its transforming capacity, interference with cJundependent transcription may be an essential step in E1A‐induced transformation. (shrink)

As early as 2002, CIOMS stated that pregnant women should be presumed eligible for participation in research. Despite this position and calls of other well‐recognized organizations, the health needs of pregnant women in research remain grossly under‐researched. Although the presumption of eligibility remains unchanged, the revision of the 2002 CIOMS International ethical guidelines for biomedical research involving human subjects involved a substantive rewrite of the guidance on research with pregnant women and related guidelines, such as those on fair inclusion and (...) vulnerability. However, close reading of the guidelines reveals morally relevant different approaches to fair inclusion of pregnant women and other under‐represented groups, such as children and incompetents. Where CIOMS sets out that children and adolescents must be included unless a good scientific reason justifies their exclusion, no such claim of having to justify exclusion appears in the guideline on pregnant women. Instead, CIOMS claims that research relevant to pregnant women’s health needs must be promoted. This paper analyses how and to what extent the guideline on pregnant women differs from other guidance on fair inclusion in the document. Accordingly, the paper evaluates to what extent the current phrasing may contribute to fair inclusion of pregnant women in research. We will conclude that a system change towards a learning health system is essential to break down the status quo of knowledge generation in the field of medication use during pregnancy and argue that the CIOMS guidelines allow for this system change. (shrink)

Background: Moral case deliberation is increasingly becoming part of various Dutch healthcare organizations. Although some evaluation studies of moral case deliberation have been carried out, research into the results of moral case deliberation within aged care is scarce. Research questions: How did participants evaluate moral case deliberation? What has moral case deliberation brought to them? What has moral case deliberation contributed to care practice? Should moral case deliberation be further implemented and, if so, how? Research design: Quantitative analysis of a (...) questionnaire study among participants of moral case deliberation, both caregivers and team leaders. Qualitative analysis of written answers to open questions, interview study and focus group meetings among caregivers and team leaders. Participants and research context: Caregivers and team leaders in a large organization for aged care in the Netherlands. A total of 61 moral case deliberation sessions, carried out on 16 care locations belonging to the organization, were evaluated and perceived results were assessed. Ethical considerations: Participants gave informed consent and anonymity was guaranteed. In the Netherlands, the law does not prescribe independent ethical review by an Institutional Review Board for this kind of research among healthcare professionals. Findings: Moral case deliberation was evaluated positively by the participants. Content and atmosphere of moral case deliberation received high scores, while organizational issues regarding the moral case deliberation sessions scored lower and merit further attention. Respondents indicated that moral case deliberation has the potential to contribute to care practice as relationships among team members improve, more openness is experienced and more understanding for different perspectives is fostered. If moral case deliberation is to be successfully implemented, top-down approaches should go hand in hand with bottom-up approaches. Conclusion: The relevance of moral case deliberation for care practice received wide acknowledgement from the respondents. It can contribute to the team’s cohesion as mutual understanding for one another’s views is fostered. If implemented well, moral case deliberation has the potential to improve care, according to the respondents. (shrink)

There is considerable evidence that language comprehenders derive lexical‐semantic meaning by mentally simulating perceptual and motor attributes of described events. However, the nature of these simulations—including the level of detail that is incorporated and contexts under which simulations occur—is not well understood. Here, we examine the effects of first‐ versus third‐person perspective on mental simulations during sentence comprehension. First‐person sentences describing physical transfer towards or away from the body (e.g., “You threw the microphone,” “You caught the microphone”) modulated response latencies (...) when responses were made along a front‐back axis, consistent with the action‐sentence compatibility effect (ACE). This effect was not observed for third‐person sentences (“He threw the microphone,” “He caught the microphone”). The ACE was observed when making responses along a left‐right axis for third‐person, but not first‐person sentences. Abstract sentences (e.g., “He heard the message”) did not show an ACE along either axis. These results show that perspective is a detail that is simulated during action sentence comprehension, and that motoric activations are flexible and affected by the pronominal perspective used in the sentence. (shrink)

Support from grandparents plays a role in mothers’ perinatal mental health. However, previous research on maternal mental health has mainly focused on influences of partner support or general social support and neglected the roles of grandparents. In this narrative review and meta-analysis, the scientific evidence on the association between grandparental support and maternal perinatal mental health is reviewed. Searches in PubMed, EMBASE, MEDLINE, Scopus, and PsycINFO yielded 11 empirical studies on N = 3381 participants, reporting on 35 effect sizes. A (...) multilevel approach to meta-analysis was applied to test the association between grandparental support and maternal mental health. The results showed a small, statistically significant association (r =.16; 95% CI: 0.09–0.25). A moderator test indicated that the association was stronger for studies reporting on support from the maternal grandmother in particular (r =.23; 95% CI: 0.06–0.29). Our findings suggest that involved grandparents, in particular mother’s own mother, constitute a protective factor for the development of maternal postpartum mental health problems. These findings have clear implications for interventions. Future studies should examine whether stimulating high-quality support from grandparents is a fruitful avenue for enhancing maternal postpartum mental health. (shrink)

Recent publications on digital health technologies highlight the importance of ‘responsible’ use. References to the concept of responsibility are, however, frequently made without providing clear definitions of responsibility, thus leaving room for ambiguities. Addressing these uncertainties is critical since they might lead to misunderstandings, impacting the quality and safety of healthcare delivery. Therefore, this study investigates how responsibility is interpreted in the context of using digital health technologies, including artificial intelligence (AI), telemonitoring, wearables and mobile apps. We conducted a scoping (...) review with a systematic search in PubMed, Web of Science, Embase, CINAHL and Philosopher’s Index. A total of 34 articles were included and categorized using a theoretical framework of responsibility aspects, and revealed two main findings. First, we found that digital health technologies can expand and shift existing ‘role responsibilities’ among caregivers, patients and technology. Second, moral responsibility is often equated with liability or accountability, without clear justification. Articles describe new ways in which physicians can be held accountable, particularly in the context of AI, and discuss the emergence of a ‘responsibility gap’ where no-one can be fully responsible for AI-generated outcomes. The literature also shows that m-Health technologies can increase patients’ accountability for their own health. However, there was limited discussion in the reviewed literature on whether these attributions of accountability are appropriate. We conclude with implications for practice and suggestions for expanding the theoretical framework of moral responsibility, recommending further study on responsibility of collectives and artificial entities, and on the role of virtue in digital health. (shrink)

Aims: To examine the extent of social stigma toward diabetes among Singapore's multi-ethnic general population and determine whether this differs across socio-demographic sub-groups.Methods: Data for this study came from a nationwide cross-sectional study. A diabetes stigma questionnaire comprising Social Distance Scale and Negative Attitudes and Stereotyping Scale was administered to those respondents who had not been diagnosed with diabetes. Exploratory factor analysis was conducted to determine the dimensionality of the instruments and validated using confirmatory factor analysis. Multiple linear regression analysis (...) was conducted to examine associations between socio-demographic factors and measures of diabetes stigma.Results: In all, 2,895 participants were recruited from the general population giving a response rate of 66.2%. Factor analyses found that a one-factor model resulted in an acceptable fit for both stigma scales, which measured social distance and negative attitudes and stereotyping, respectively. Multiple linear regression analyses identified Indian ethnicity, higher personal income and having close friends or family members who had been diagnosed with diabetes to be significantly associated with lower social distance scores while those aged 50–64 years and those with secondary and vocational education were significantly associated with higher social distance scores. Those with a personal income of SG$2,000–3,999 and SGD $6,000 and above, and those with close friends or family members diagnosed with diabetes were significantly associated with lower negative attitudes and stereotyping scores. In contrast those aged 35 years and above, those with primary education and below, and those of Malay ethnicity were significantly associated with higher negative attitudes and stereotyping scores.Conclusions: The study found a relatively low level of stigma toward diabetes in the general population of Singapore, although some stigmatizing beliefs emerged. While greater knowledge of diabetes could reduce stigma, anti-stigma messaging should be incorporated into the “War on Diabetes” programme in Singapore. (shrink)

ObjectivesMany older adults with visual impairment also have significant hearing loss. The aim was to investigate the effectiveness of a newly developed Dual Sensory Loss protocol on communication and wellbeing of older persons with DSL and their communication partners in the Netherlands and Belgium.MethodsParticipants and their communication partners were randomized in the “DSL-protocol” intervention group or a waiting-list control group. The intervention took 3 to 5 weeks. Occupational therapists focused on optimal use of hearing aids, home-environment modifications and effective communication (...) strategies. The primary outcome was the Communication Strategies domain of the Communication Profile for the Hearing Impaired. Secondary outcomes measured in participants were the Low Vision Quality Of Life Adjustment subscale, the Center for Epidemiological Studies - Depression Scale, De Jong Gierveld Loneliness Scale and the Fatigue Assessment Scale. The Hearing Handicap and Disability Inventory - Reaction of Others subscale and the Care-related Quality of Life - 7 Dimensions was measured in communication partners. Measurements were taken at baseline and 3-month follow-up. Linear mixed models were used to analyze effects between groups over time for every outcome measure.ResultsIntention-to-treat analyses showed a significant effect of the DSL-protocol on the use of verbal strategies in favor of the control group, however, this effect was non-significant after adjustment for confounding. Effect sizes of other outcomes varied between −0.23 [−0.57, 0.12] and 0.30 [−0.05, 0.64]. The LMM showed a significant effect on the HHDI-Reaction of others scale in favor of communication partners in the treatment group, however, the effect did not remain significant at a 0.01 significance level and the effect size was very small and non-significant 0.12, 95% CI [−0.27 to 0.51]. Adjusted analyses did not reveal treatment effects.ConclusionThe DSL-protocol did not clearly contribute to the enhancement of communication and wellbeing in DSL-patients. Possible reasons for the lack of effects are OTs not being comfortable giving advice on communication and psychosocial issues or the short-term treatment and follow-up period. Further study is warranted to find out how the protocol may be adapted or whether it is necessary to involve mental healthcare professionals.Clinical Trial Registrationwww.ClinicalTrials.gov, identifier NTR2843. (shrink)

In 2004 a survey was conducted in the member states of the European Union designed to gain greater insight into the views on control strategies for foot and mouth disease, classical swine fever, and avian influenza with respect to the epidemiological, economic and social-ethical consequences of each of these animal diseases. This article presents the results of the social-ethical survey. A selection of stakeholders from each member state was asked to prioritize issues for the prevention and control of these diseases. (...) A majority of stakeholders chose preventive measures as the preferred issue. An analysis was done to determine whether there were differences in views expressed by stakeholders from member states with a history of recent epidemics and ones without such a history, and whether there were regional differences. There were no differences between member states with or without a history of recent epidemics. There were indeed regional differences between the priority orders from Northern and Southern Europe on the one hand, and from Eastern Europe on the other. (shrink)

A adoção de um catálogo constitucional de direitos e o fortalecimento do judicial review, trouxeram como consequência a judicialização da política em inúmeras democracias, onde se verifica uma expansão da atuação do Poder Judiciário em detrimento das esferas representativas do Estado. Neste contexto, tem se observado em países do Sul Global, o emprego de novos mecanismos procedimentais em casos que envolvem a violação contínua e generalizada de direitos fundamentais, de alguns grupos menos favorecidos, decorrente de bloqueios políticos e institucionais, denominados (...) de “litígios estruturais”. (shrink)

In this article, an ethical analysis of an educational programme on renal replacement therapy options for patients and their social network is presented. The two main spearheads of this approach are: (1) offering an educational programme on all renal replacement therapy options ahead of treatment requirement and (2) a home-based approach involving the family and friends of the patient. Arguments are offered for the ethical justification of this approach by considering the viewpoint of the various stakeholders involved. Finally, reflecting on (...) these ethical considerations, essential conditions for carrying out such a programme are outlined. The goal is to develop an ethically justified and responsible educational programme. (shrink)

BackgroundAdverse childhood experiences can cause serious mental problems in adolescents and therefore may expected to be associated with higher use of psychosocial care, potentially varying by type of specific ACE. The aim of our study is to explore the association of the number of ACE and types of specific ACE with entering and using psychosocial care.MethodsWe used data from the Slovak Care4Youth cohort study, comprising 509 adolescents from 10 to 16 years old. We used logistic regression models adjusted for age, (...) gender, and family affluence to explore the associations of number and type of specific ACE with the use of psychosocial care.ResultsHaving three or more ACE as well as experiencing some specific ACE increased the likelihood of using psychosocial care. Regarding experience with the death of somebody else you love, we found a decreased likelihood of the use of psychosocial care.ConclusionExperiencing ACE above a certain threshold and parent-related ACE increase the likelihood of adolescent care use. (shrink)

The precautionary principle is often invoked in relation to pregnant women and may be one of the underlying reasons for their continuous underrepresentation in clinical research. The principle is appealing, because potential fetal harm as a result of research participation is considered to be serious and irreversible. In our paper, we explore through conceptual analysis whether and if so how the precautionary principle should apply to pregnant women. We argue that the principle is a decision-making strategy underlying risk-benefit decisions in (...) clinical research, which can be applied to pregnant women. However, the current application is a strong one, leading to the promotion of absolute exclusion or, less often, absolute inclusion of pregnant women. In order to change this paralyzing situation, a shift toward weak precautionary thinking is necessary. Instead of automatic extreme precaution, a balance will be found between harms and potential benefits of including pregnant women in clinical research. (shrink)

Sleep has a profound effect on our mood, but insight in the mechanisms underlying this association is still lacking. We tested whether emotion regulation is a mediator in the relationship between fragmented sleep and mood disturbance. The effect of fragmented sleep on the emotion regulation strategies, including cognitive reappraisal, distraction, acceptance and suppression ability, was assessed. We further tested whether the use of these strategies, as well as rumination and self-criticism, mediated the association between fragmented sleep and negative and positive (...) affect. Participants (N = 69) wore an actiwatch and filled in a sleep diary for 12 consecutive nights. They had one control night and one sleep fragmentation night. Emotion regulation ability was assessed with an experimental task. Usage of emotion regulation strategies and negative and positive affect were assessed four times during the day with a survey after the control and sleep fragmentation night. Cognitive reappraisal, distraction, acceptance and suppression ability did not differ between the sleep fragmentation and control condition. However, participants reported higher usage of rumination and distraction after the sleep fragmentation night and rumination significantly mediated the negative association between fragmented sleep and negative affect. (shrink)

Progressive supranuclear palsy is a movement disorder with prominent tau neuropathology. Brain diseases with abnormal tau deposits are called tauopathies, the most common of which is Alzheimer's disease. Environmental causes of tauopathies include repetitive head trauma associated with some sports. To identify common genetic variation contributing to risk for tauopathies, we carried out a genome-wide association study of 1,114 individuals with PSP and 3,247 controls followed by a second stage in which we genotyped 1,051 cases and 3,560 controls for the (...) stage 1 SNPs that yielded P ≤ 10-3. We found significant previously unidentified signals associated with PSP risk at STX6, EIF2AK3 and MOBP. We confirmed two independent variants in MAPT affecting risk for PSP, one of which influences MAPT brain expression. The genes implicated encode proteins for vesicle-membrane fusion at the Golgi-endosomal interface, for the endoplasmic reticulum unfolded protein response and for a myelin structural component. © 2011 Nature America, Inc. All rights reserved. (shrink)

Route memory is frequently assessed in virtual environments. These environments can be presented in a fully controlled manner and are easy to use. Yet they lack the physical involvement that participants have when navigating real environments. For some aspects of route memory this may result in reduced performance in virtual environments. We assessed route memory performance in four different environments: real, virtual, virtual with directional information (compass), and hybrid. In the hybrid environment, participants walked the route outside on an open (...) field, while all route information (i.e., path, landmarks) was shown simultaneously on a handheld tablet computer. Results indicate that performance in the real life environment was better than in the virtual conditions for tasks relying on survey knowledge, like pointing to start and end point, and map drawing. Performance in the hybrid condition however, hardly differed from real life performance. Performance in the virtual environment did not benefit from directional information. Given these findings, the hybrid condition may offer the best of both worlds: the performance level is comparable to that of real life for route memory, yet it offers full control of visual input during route learning. (shrink)

Background Genuine uncertainty on superiority of one intervention over the other is called equipoise. Physician-investigators in randomized controlled trials need equipoise at least in studies with more than minimal risks. Ideally, this equipoise is also present in patient-participants. In pediatrics, data on equipoise are lacking. We hypothesize that 1) lack of equipoise at enrolment among parents may reduce recruitment; 2) lack of equipoise during participation may reduce retention in patients assigned to a less favoured treatment-strategy. Methods We compared preferences of (...) parents/patients at enrolment, documented by a questionnaire, with preferences developed during follow-up by an interview-study to investigate equipoise of child-participants and parents in the BeSt-for-Kids-study. This trial in new-onset Juvenile Idiopathic Arthritis-patients consists of three strategies. One strategy comprises initial treatment with a biological disease-modifying-antirheumatic-drug, currently not standard-of-care. Semi-structured interviews were conducted with 23 parents and 7 patients, median 11 months after enrolment. Results Initially most parents and children were not in equipoise. Parents/patients who refused participation, regularly declined due to specific preferences. Many participating families preferred the biological-first-strategy. They participated to have a chance for this initial treatment, and would even consider stopping trial-participation when not randomized for it. Their conviction of superiority of the biological-first strategy was based on knowledge from internet and close relations. According to four parents, the physician-investigator preferred the biological-first-strategy, but the majority stated that she had no preferred strategy. In phase 2, preferences tended to change to the treatment actually received. Conclusions Lack of equipoise during enrolment did not reduce study recruitment, mainly due to the fact that preferred treatment was only available within the study. Still, when developing a trial it is important to evaluate whether the physicians’ research question is in line with preferences of the patient-group. By exploring so-called ‘informed patient-group’-equipoise, successful recruitment may be enhanced and bias avoided. In our study, lack of equipoise during trial-participation did not reduce retention in those assigned to a less favoured option. We observed a change for preference towards treatment actually received, possibly explained by comparable outcomes in all three arms. (shrink)

Despite the reported limited success of conventional treatments and growing evidence of the effectiveness of adult bariatric surgery, weight loss operations for (morbidly) obese children and adolescents are still considered to be controversial by health care professionals and lay people alike. This paper describes an explorative, qualitative study involving obesity specialists, morbidly obese adolescents, and parents and identifies attitudes and normative beliefs regarding pediatric bariatric surgery. Views on the etiology of obesity—whether it should be considered primarily a medical condition or (...) more a psychosocial problem—seem to affect the specialists’ normative opinions concerning the acceptability of bariatric procedures as a treatment option, the parents’ feelings regarding both being able to influence their child’s health and their child being able to control their own condition, and the adolescents’ sense of competence and motivation for treatment. Moreover, parents and adolescents who saw obesity as something that they could influence themselves were more in favor of non-surgical treatment and vice versa. Conflicting attitudes and normative views—e.g., with regard to concepts of disease, personal influence on health, motivation, and the possibility of a careful informed consent procedure—play an important role in the acceptability of bariatric surgery for childhood obesity. (shrink)

Background: Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. Objectives: (1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general as described in the literature. (...) Method: A modified Delphi study in two rounds Results: Genetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as “confidentiality of genetic information” and “implications of research for relatives” which changes the impact and application of existing ethical topics such as “informed consent” and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found. Conclusions: Different priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics. (shrink)

The current study investigates whether self-talk phrases can influence behavior in Ultimatum Games. In our three self-talk treatments, participants were instructed to tell themselves (i) to keep their own interests in mind, (ii) to also think of the other person, or (iii) to take some time to contemplate their decision. We investigate how such so-called experimenter-determined strategic self-talk phrases affect behavior and emotions in comparison to a control treatment without instructed self-talk. The results demonstrate that other-focused self-talk can nudge proposers (...) towards fair behavior, as offers were higher in this group than in the other conditions. For responders, self-talk tended to increase acceptance rates of unfair offers as compared to the condition without self-talk. This effect is significant for both other-focused and contemplation-inducing self-talk but not for self-focused self-talk. In the self-focused condition, responders were most dissatisfied with unfair offers. These findings suggest that use of self-talk can increase acceptance rates in responders, and that focusing on personal interests can undermine this effect as it negatively impacts the responders’ emotional experience. In sum, our study shows that strategic self-talk interventions can be used to affect behavior in bargaining situations. (shrink)