Background and aim With the increasing interest in lifestyle, health and consequences of unhealthy lifestyles for the healthcare system, a new kind of solidarity is gaining importance: lifestyle solidarity. While it might not seem fair to let other people pay for the costs arising from an unhealthy lifestyle, it does not seem fair either to punish people for their lifestyle. However, it is not clear how solidarity is assessed by people, when considering disease risks or lifestyle risks. The aim of (...) this study was to investigate the degree of solidarity with lifestyle as well as with other factors that are related to health outcomes—for example, old age—and the relation between this degree of solidarity and various characteristics. Methods This cross-sectional study is part of the Dutch longitudinal SMILE study. Data on the degree of solidarity with different lifestyles and old age, and the relation between the degree of solidarity and various demographic and other variables were obtained in a questionnaire survey. Results Solidarity with smokers and overweight people was moderate, as was solidarity with older people. Respondents were ambivalent about athletes. Respondents who were younger, male and highly educated, and those with a healthy lifestyle, a small social network, high quality of life and an internal locus of control, showed low solidarity. Conclusions Solidarity with an unhealthy lifestyle and old age is moderate and the degree of solidarity varies among the different subgroups. (shrink)

The COVID-19 pandemic has forced developmental researchers to rethink their traditional research practices. The growing need to study infant development at a distance has shifted our research paradigm to online and digital monitoring of infants and families, using electronic devices, such as smartphones. In this practical guide, we introduce the Experience Sampling Method – a research method to collect data, in the moment, on multiple occasions over time – for examining infant development at a distance. ESM is highly suited for (...) assessing dynamic processes of infant development and family dynamics, such as parent-infant interactions and parenting practices. It can also be used to track highly fluctuating family dynamics and routines. The aim of the current paper was to provide an overview by explaining what ESM is and for what types of research ESM is best suited. Next, we provide a brief step-by-step guide on how to start and run an ESM study, including preregistration, development of a questionnaire, using wearables and other hardware, planning and design considerations, and examples of possible analysis techniques. Finally, we discuss common pitfalls of ESM research and how to avoid them. (shrink)

Chervenak and McCullough, authors of the most acknowledged ethical framework for maternal–fetal surgery, rely on the ‘ethical–obstetrical’ concept of the fetus as a patient in order to determine what is morally owed to fetuses by both physicians and the women who gestate them in the context of prenatal surgery. In this article, we reconstruct the argumentative structure of their framework and present an internal criticism. First, we analyse the justificatory arguments put forward by the authors regarding the moral status of (...) the fetus qua patient. Second, we discuss the internal coherence and consistency of the moral obligations those authors derive from that concept. We claim that some of the dilemmas their approach is purported to avoid, such as the debate about the independent moral status of the fetus, and the foundation of the moral obligations of pregnant women (towards the fetuses they gestate) are not, all things considered, avoided. Chervenak and McCullough construct the obligations of physicians as obligations towards entities with equal moral status. But, at the same time, they assume that the woman has an independent moral status while the moral status of the fetus is dependent on the decision of the woman to present it to a physician for care. According to the logic of their own argumentation, Chervenak and McCullough implicitly admit a different moral status of the woman and the fetus, which will lead to different ascription of duties of the physician than those they ascribed. (shrink)

This article focuses on maternal-fetal surgery (MFS) and on the concept of clinical equipoise that is a widely accepted requirement for conducting randomized controlled trials (RCT). There are at least three reasons why equipoise is unsuitable for MFS. First, the concept is based on a misconception about the nature of clinical research and the status of research subjects. Second, given that it is not clear who the research subject/s in MFS is/are, if clinical equipoise is to be used as a (...) criterion to test the ethical appropriateness of RCT, its meaning should be unambiguous. Third, because of the multidisciplinary character of MFS, it is not clear who should be in equipoise. As a result, we lack an adequate criterion for the ethical review of MFS protocols. In our account, which is based on Chervenak and McCullough's seminal work in the field of obstetric ethics, equipoise is abandoned. and RCT involving MFS can be ethically initiated when a multidisciplinary ethics review board (ERB), having an evidence-based assessment of the risks involved, is convinced that the value of answering the research hypothesis, for the sake of the health interests of future pregnant women carrying fetuses with certain congenital birth defects, justifies the actual risks research participants might suffer within a set limit of low/manageable. (shrink)

Patient-reported outcomes are frequently used for medical decision making, at the levels of both individual patient care and healthcare policy. Evidence increasingly shows that PROs may be influenced by patients’ response shifts and dispositions. We identify how response shifts and dispositions may influence medical decisions on both the levels of individual patient care and health policy. We provide examples of these influences and analyse the consequences from the perspectives of ethical principles and theories of just distribution. If influences of response (...) shift and disposition on PROs and consequently medical decision making are not considered, patients may not receive optimal treatment and health insurance packages may include treatments that are not the most effective or cost-effective. We call on healthcare practitioners, researchers, policy makers, health insurers, and other stakeholders to critically reflect on why and how such patient reports are used. (shrink)

BackgroundObtaining informed consent for intravenous thrombolysis in acute ischemic stroke can be challenging, and little is known about if and how the informed consent procedure is performed by neurologists in clinical practice. This study examines the procedure of informed consent for intravenous thrombolysis in acute ischemic stroke in high-volume stroke centers in the Netherlands.MethodsIn four high volume stroke centers, neurology residents and attending neurologists received an online questionnaire concerning informed consent for thrombolysis with tissue-type plasminogen activator (tPA). The respondents were (...) asked to report their usual informed consent practice for tPA treatment and their considerations on whether informed consent should be obtained.ResultsFrom the 203 invited clinicians, 50% (n = 101) completed the questionnaire. One-third of the neurology residents (n = 21) and 21% of the neurologists (n = 8) reported that they always obtain informed consent for tPA treatment. If a patient is not capable of providing informed consent, 30% of the residents (n = 19) reported that they start tPA treatment without informed consent. In these circumstances, 53% of the neurologists (n = 20) reported that the resident under their supervision would start tPA treatment without informed consent. Most neurologists (n = 21; 55%) and neurology residents (n = 45; 72%) obtained informed consent within one minute. None of the respondents used more than five minutes for informed consent. Important themes regarding obtaining informed consent for treatment were patients’ capacity, and medical, ethical and legal considerations.ConclusionThe current practice of informed consent for thrombolysis in acute ischemic stroke varies among neurologists and neurology residents. If informed consent is obtained, most clinicians stated to obtain informed consent within one minute. In the future, a shortened information provision process may be applied, making a shift from informed consent to informed refusal, while still considering the patient’s capacity, stroke severity, and possible treatment delays. (shrink)

BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...) also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)

Cet article examine les opinions des néoplatoniciens tardifs sur le phénomène social de la philotimia (« amours des honneurs » ; « ambition »). Sur la base du Commentaire de l’Alcibiade de Proclus, on montre que la philotimia est une émotion qui résulte d’une compréhension imparfaite de la vraie nature de l’honneur et du pouvoir. La mauvaise philotimia pousse les ambitieux à poursuivre une carrière politique en quête de pouvoir mondain et de prestige au prix de l’étude de la philosophie. (...) La bonne philotimia, au contraire, peut les pousser à rechercher ce qui est véritablement bien et donc les mettre sur la voie de la philosophie. L’histoire fournit maints exemples de bonne et de mauvaise philotimia. Damascius, dans sa Vie d’Isidore, mobilise des théories de la bonne et de la mauvaise philotimia pour éloigner ses lecteurs de l’arène politique et les conduire vers la poursuite de la philosophie. (shrink)

Mental models influence how individuals think and act in relation to their external environment and have been identified as leverage points to address sustainability challenges. Given the importance of mental models, a new tool to assess mental models has been developed: the Mental Model Mapping Tool. M-Tool was designed to have a standardized format and to be user-friendly for low literacy populations, using pictograms and audio instructions. In this paper, we evaluate M-Tool’s application in two studies with Tanzanian fishers. In (...) Study 1, we investigated M-tool’s convergent validity compared to standard interviewing methods. Study 2 investigated M-Tool’s construct validity by relating mental model complexity to participants’ education level, a relationship that has been well established. The findings show that mental models produced with M-Tool are more complex than mental models obtained through interviewing techniques; model composition is similar across the two methods; and participants with higher levels of education tend to produce more complex mental models with M-Tool than participants with lower levels of education, in line with previous research. These findings suggest that M-Tool can successfully capture mental models among diverse participants. This tool offers researchers and practitioners an instrument to map and compare perceptions of challenges across groups. (shrink)

AbstractWhen considering the manner of death, two categories can be distinguished, namely natural death and unnatural death. Though most physicians think that the distinction between the two is evident, this is not the case.When comparing the Netherlands, Belgium, England and Germany it is noticed that the terms natural and unnatural might be used in law but are not defined by law. In practice, the term unnatural death is used when there is an external cause of death, but even that turns (...) out to not be sufficient in making an obvious difference between the two terms. Different countries may even label the same death differently. A, at times philosophical and semantic, discussion shows that when it comes to causes of death a very large grey area exists between natural and unnatural causes of death. The Netherlands, Belgium and Germany even have the possibility to label a death as natural without actually knowing the cause of death.In conclusion, we recommend a new system in which the circumstances surrounding a death are properly investigated. This should lead to a report to an independent legal expert, who is able to decide if and what conclusion can be drawn, from a judicial and a public point of view, thereby, making the distinction and the use of the terms natural and unnatural/nonnatural obsolete. (shrink)

At the beginning of 2020, COVID-19 became a global problem. Despite all the efforts to emphasize the relevance of preventive measures, not everyone adhered to them. Thus, learning more about the characteristics determining attitudinal and behavioral responses to the pandemic is crucial to improving future interventions. In this study, we applied machine learning on the multi-national data collected by the International Collaboration on the Social and Moral Psychology of COVID-19 (N = 51,404) to test the predictive efficacy of constructs from (...) social, moral, cognitive, and personality psychology, as well as socio-demographic factors, in the attitudinal and behavioral responses to the pandemic. The results point to several valuable insights. Internalized moral identity provided the most consistent predictive contribution—individuals perceiving moral traits as central to their self-concept reported higher adherence to preventive measures. Similar was found for morality as cooperation, symbolized moral identity, self-control, open-mindedness, collective narcissism, while the inverse relationship was evident for the endorsement of conspiracy theories. However, we also found a non-negligible variability in the explained variance and predictive contributions with respect to macro-level factors such as the pandemic stage or cultural region. Overall, the results underscore the importance of morality-related and contextual factors in understanding adherence to public health recommendations during the pandemic. (shrink)

High levels of somatic symptom distress represent a core component of both mental and physical illness. The exact aetiology and pathogenesis of this transdiagnostic phenomenon remain largely unknown. The Affective Picture Paradigm (APP) represents an innovative experimental paradigm to study somatic symptom distress. Based on the HiTOP framework and a population-based sampling approach, associations between facets of somatic symptom distress and symptoms induced by the APP were explored in two studies (N1 = 201; N2 = 254) using structural equation bi-factor (...) models. Results showed that the APP effect was significantly positively correlated with general somatic symptom distress (PHQ-15, HiTOP), cardio-respiratory symptoms (PHQ-15), as well as difficulties identifying feelings. In conclusion, negative affective cues in the APP can elicit somatic symptoms, particularly in people with higher levels of somatic symptom distress. Difficulties identifying feelings might contribute to this phenomenon. Results are compatible with a predictive processing account of somatic symptom perception. (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)

Objectives: Efficient procedures for obtaining informed (proxy) consent may contribute to high influenza vaccination rates in nursing homes. Yet are such procedures justified? This study’s objective was to gain insight in informed consent policies in Dutch nursing homes; to assess how these may affect influenza vaccination rates and to answer the question whether deviating from standard informed consent procedures could be morally justified. Design: A survey among nursing home physicians. Setting & Participants: We sent a questionnaire to all (356) nursing (...) homes in the Netherlands, to be completed by one of the physicians. Results: We received 245 completed questionnaires. As 21 institutions appeared to be closed or merged into other institutions, the response was 73.1% (245/335). Of all respondents 81.9% reported a vaccination rate above 80%. Almost 50% reported a vaccination rate above 90%. Most respondents considered herd immunity to be an important consideration for institutional policy. Freedom of choice for residents was considered important by almost all. Nevertheless, 106 out of 245 respondents follow a tacit consent procedure, according to which vaccination will be administered unless the resident or her proxy refuses. These institutions show significantly higher vaccination rates (p < 0.03). Conclusions: In our discussion we focus on the question whether tacit consent procedures can be morally justifiable. Such procedures assume that vaccination is good for residents either as individuals or as a group. Even though this assumption may be true for most residents, there are good reasons for preferring express consent procedures. (shrink)

We prove linear and polynomial growth properties of sets and functions that are existentially definable in the ordered group of integers with divisibility. We determine the laws of addition with order and divisibility.

OBJECTIVES: Cognitive and sensory difficulties frequently jeopardize informed consent of frail elderly patients This study is the first to test whether preliminary research experience could enhance geriatric patients' capacity to consent. DESIGN/SETTING: A step-wise consent procedure was introduced in a study on fluid balance in geriatric patients. Eligible patients providing verbal consent participated in a try-out of a week, during which bioelectrical impedance and weight measurements were performed daily. Afterwards, written informed consent was requested. Comprehension, risk and inconvenience scores (ranges: (...) 0-10) were obtained before and after the try-out by asking ten questions about the study's essentials and by asking for a risk and inconvenience assessment on a ten-points rating scale. SUBJECTS AND RESULTS: Seventy of the 78 eligible subjects started the try-out and 53 (68%) provided written consent. The comprehension score increased from 5.0 (+/- 2.3) to 7.0 (+/- 1.9) following the try-out (P < 0.001). The number of subjects capable of weighing risks and inconveniences increased from 32 to 48 (P < 0.001). CONCLUSIONS: Research experience improved the capacity to consent, still enabling an acceptable participation rate. Therefore, experienced consent seems a promising tool to optimize informed consent in frail elderly subjects. (shrink)