Anxiety in families of individuals with neurodevelopmental conditions in the early months of the COVID-19 pandemic in Switzerland

In the spring of 2020, the COVID-19 pandemic generated a health, social, political, and economic crisis that dramatically reduced the institutional support for families of individuals with neurodevelopmental conditions (NDCs). To understand how these families may have experienced and coped with the pandemic, we created an online questionnaire that reached more than 10,000 families in 78 countries. The current manuscript - framed within the International Classification of Functioning, Disability and Health (ICF-10) model - investigates the impact of specific health conditions and personal or environmental factors on the anxiety of families living in Switzerland during the early months of the pandemic. To assess how differences in anxiety over time were predicted by specific health conditions or personal and environmental factors, two separate multilevel analyses were conducted for parents and their children with NDCs (N = 256). First, results showed that only parents reported an increase in anxiety when the pandemic started. Second, concerns related to loss of institutional support and financial and economic problems were the most anxiety-provoking factors for parents, whereas parents reported that the most anxiety-provoking factor for children was their concern about becoming bored. Many parents may have struggled with economic problems and managed multiple extra roles and tasks in their daily lives because institutional support was no longer available. As reported by their parents, although individuals with NDCs did not show an increase in anxiety, they may have struggled with boredom. This result may represent the inability to engage in satisfactory activities in daily life associated with a partial unawareness of the pandemic and the respective protective measures. Further research should more thoroughly investigate the potential effects of the individual’s primary condition, presence and severity of intellectual disability and awareness of the pandemic on the anxiety of individuals with NDCs. Ultimately, we present a series of reflections and practical suggestions that could help guide policymakers in potential future periods of crisis, social estrangement, and distance learning

Die Basiserhebung der NAKO Gesundheitsstudie: Teilnahme an den Untersuchungsmodulen, Qualitätssicherung und Nutzung von Sekundärdaten

BACKGROUND: The German National Cohort (NAKO) is an interdisciplinary health study aimed at elucidating causes for common chronic diseases and detecting their preclinical stages. This article provides an overview of design, methods, participation in the examinations, and their quality assurance based on the midterm baseline dataset (MBD) of the recruitment. METHODS: More than 200,000 women and men aged 20–69 years derived from random samples of the German general population were recruited in 18 study centers (2014–2019). The data collection comprised physical examinations, standardized interviews and questionnaires, and the collection of biomedical samples for all participants (level 1). At least 20% of all participants received additional in-depth examinations (level 2), and 30,000 received whole-body magnet resonance imaging (MRI). Additional information will be collected through secondary data sources such as medical registries, health insurances, and pension funds. This overview is based on the MBD, which included 101,839 participants, of whom 11,371 received an MRI. RESULTS: The mean response proportion was 18%. The participation in the examinations was high with most of the modules performed by over 95%. Among MRI participants, 96% completed all 12 MRI sequences. More than 90% of the participants agreed to the use of complementary secondary and registry data. DISCUSSION: Individuals selected for the NAKO were willing to participate in all examinations despite the time-consuming program. The NAKO provides a central resource for population-based epidemiologic research and will contribute to developing innovative strategies for prevention, screening and prediction of chronic diseases.HINTERGRUND: Die NAKO Gesundheitsstudie ist ein bundesweites interdisziplinäres Forschungsvorhaben mit dem Ziel, die Ursachen für chronische Krankheiten und deren vorklinische Stadien zu untersuchen. Der Artikel gibt einen Überblick über das Studiendesign, die Methoden, die Teilnahme an den Untersuchungen und ihre Qualitätssicherung zur Halbzeit der Basiserhebung. METHODEN: Für die Basiserhebung wurden mehr als 200.000 Frauen und Männer im Alter von 20–69 Jahren aus Zufallsstichproben der Allgemeinbevölkerung in 18 Studienzentren rekrutiert (2014–2019). Die Basiserhebung beinhaltet Untersuchungen, Befragungen und Biomaterialien für alle Teilnehmerinnen und Teilnehmer (Level 1), ein erweitertes Programm für mindestens 20 % (Level 2) und eine Magnetresonanztomografie (MRT) für 30.000 Teilnehmerinnen und Teilnehmer. Sekundär- und Registerdaten werden über Krankheitsregister, Kranken- und Rentenversicherungen erhoben. Die Auswertung bezieht die Datenbasis zur Halbzeit der Basiserhebung mit 101.839 Teilnehmerinnen und Teilnehmern ein, davon 11.371 mit einer MRT-Untersuchung. ERGEBNISSE: Die mittlere Responsequote zur Halbzeit betrug insgesamt 18 %. Die Teilnahme an den Untersuchungen lag überwiegend bei mehr als 95 %. Bei 96 % der MRT-Teilnehmerinnen und Teilnehmer konnten alle 12 MRT-Sequenzen vollständig durchgeführt werden. Der Erschließung und wissenschaftlichen Nutzung ergänzender Sekundär- und Registerdaten stimmten mehr als 90 % der Teilnehmerinnen und Teilnehmer zu. DISKUSSION: Die Bereitschaft, möglichst alle Untersuchungsmodule durchzuführen, war trotz des zeitlichen Aufwandes außerordentlich hoch. Dadurch wird die NAKO zu einer zentralen Ressource für die epidemiologische Forschung in Deutschland. Sie wird es ermöglichen, neue Strategien zur Früherkennung, Vorhersage und Primärprävention chronischer Krankheiten zu entwickeln

First Day at School - Social Emotion Regulation in Virtual Reality

A virtual world and experimental paradigm (including a Cyberball scenario) created to assess social emotion regulation in populations with developmental disorders, specifically individuals on the autism spectrum. In the hopes that our creation can be adapted or go on to be used as a basis for future research and training in emotion regulation and social interaction in general. For more information on the experiment, refer to the methods paper by Stallmann et al., 2022. Here available are the Unity3D assets created in-house, while the source code and binary of this project, programmed in C#, are linked to. The assets are shared under a CC BY-NC-SA 4.0 licence

Associations of Exposure Frequencies of Single Adverse Childhood Experiences with Psychological Distress: Evidence from a Cohort Study among Emerging Adults

Background: Adverse childhood experiences (ACE) are significant transdiagnostic risk factors for impaired psychosocial functioning and mental health conditions throughout life. Most research on ACEs has used composite scores, which precludes specific conclusions about the impact of individual adverse experiences and their frequency of occurrence. Objective: To investigate the association between exposure frequencies of single adverse experiences with psychological distress among emerging adults. Participants and Setting: A total of 2528 emerging Swiss adults aged 18 to 22 years (mean age 19.3) from a random population sample participating in the first wave of a cohort study. Methods: ACE measures were 39 specific experiences for neglect (emotional, physical), abuse (emotional, physical, sexual), witnessing violence, peer maltreatment and parental psychopathology. ANOVA models were used to estimate the associations of exposure frequencies for each adverse experience with psychological distress. Results: Single adverse childhood experiences were strongly associated with psychological distress in emerging adulthood, with considerable differences across experiences and their exposure frequencies. Physical and sexual abuse experiences were associated with psychological distress across all exposure frequencies, including if experienced only rarely. Emotional abuse, emotional neglect and verbal abuse by peers experiences showed associations with psychological distress mainly at higher exposure frequencies. Conclusions: The severe impact of adverse childhood experiences on the mental health of emerging adults varies greatly depending on the specific adverse experience and how often a person had to endure them. Our research underscores the value of analyzing the impact of single adversities and their exposure frequencies alongside dimensional approaches in ACE research. Keywords: Adverse childhood experiences; Emerging adulthood; mental health; Switzerland; psychological distress; peer maltreatment; single adversity approac

Simulating Social Emotion Regulation in Virtual Reality: Effect of Virtual Social Support Following Ostracism in a Cyberball Game

Virtual reality (VR) is a valuable research tool offering advantages in terms of high experimenter control and standardization in the simulation of vivid personal and social experiences. It has been used for assessments and training in social cognition with the use of virtual agents instead of face-to-face interactions – but its potential for the study of social emotion regulation has, perhaps surprisingly, largely remained untapped. The present study evaluates a novel immersive VR scenario designed to study the efficacy of social support by a virtual agent using a modified version of Cyberball, an established paradigm to induce the feeling of ostracism. Participants embodied a new pupil in a virtual school environment and played Cyberball, after which they either did or did not receive emotional support. Self-reports and psychophysiological markers demonstrated that the negative impact of social exclusion in Cyberball was successfully replicated, while participants also reported a significant improvement in emotional state after being supported by the virtual agent. These results indicate the potential of the developed scenario for research on social emotion regulation in immersive VR. Future studies could aim to test the efficacy of social support for people with difficulties in self-regulation, for example individuals with high social anxiety, with a view to developing training programs in VR

Fostering resilience and well-being in emerging adults with adverse childhood experiences: study protocol for a randomized controlled trial to evaluate the FACE self-help app

Abstract Background Adverse childhood experiences (ACE) are linked to an increased risk of psychological disorders and lower psychosocial functioning throughout life. This study aims to evaluate the FACE self-help app, designed to promote resilience and well-being in emerging adults with a history of ACE. The app is based on cognitive-behavioural principles and consists of two thematic components: (1) self- and emotion regulation (SER) and (2) social skills and biases in social information processing (SSIP). Methods The efficacy of the app will be tested through a single-centre, two-arm randomized controlled trial, comparing an active intervention group against a waiting list control group. The active group is divided into two subgroups, in which the two components are delivered in a different order to investigate differential effects in a crossover design. Up to 250 emerging adults aged 18 to 25 years with a history of ACE from a general population cohort study will be recruited. The primary objective is to test the efficacy of the app in improving resilience (primary outcome) and well-being (co-primary outcome) compared to a waiting list control group and to examine the stability of these effects. The secondary objectives include testing the efficacy of the app in improving the secondary outcomes, i.e., self-efficacy in managing emotions, problem solving, fear of evaluation, social avoidance, and self-esteem; examining the differential effects of the two components; and assessing the effect of the app on real-life data on resilience, affective states, distress in social interactions and coping strategies. Furthermore, the study will investigate potential moderators (e.g. ACE severity) and mediators of intervention outcomes (e.g. self-efficacy in managing emotions). Discussion The results will provide insights into the efficacy of the self-help intervention as well as mediators and moderators of outcomes. Furthermore, results will extend the existing knowledge by testing the differential effects of the SER and SSIP component on the outcomes. Findings can inform improvements to the FACE app and the development of other interventions for this target group and assess its potential as a scalable, low-threshold intervention to support emerging adults with a history of ACE in their transition to adulthood. Trial registration number: NCT05824182

[The baseline assessment of the German National Cohort (NAKO Gesundheitsstudie): participation in the examination modules, quality assurance, and the use of secondary data].

BACKGROUND: The German National Cohort (NAKO) is an interdisciplinary health study aimed at elucidating causes for common chronic diseases and detecting their preclinical stages. This article provides an overview of design, methods, participation in the examinations, and their quality assurance based on the midterm baseline dataset (MBD) of the recruitment. METHODS: More than 200,000 women and men aged 20-69 years derived from random samples of the German general population were recruited in 18 study centers (2014-2019). The data collection comprised physical examinations, standardized interviews and questionnaires, and the collection of biomedical samples for all participants (level 1). At least 20% of all participants received additional in-depth examinations (level 2), and 30,000 received whole-body magnet resonance imaging (MRI). Additional information will be collected through secondary data sources such as medical registries, health insurances, and pension funds. This overview is based on the MBD, which included 101,839 participants, of whom 11,371 received an MRI. RESULTS: The mean response proportion was 18%. The participation in the examinations was high with most of the modules performed by over 95%. Among MRI participants, 96% completed all 12 MRI sequences. More than 90% of the participants agreed to the use of complementary secondary and registry data. DISCUSSION: Individuals selected for the NAKO were willing to participate in all examinations despite the time-consuming program. The NAKO provides a central resource for population-based epidemiologic research and will contribute to developing innovative strategies for prevention, screening and prediction of chronic diseases

Introducing the COVID-19 crisis Special Education Needs Coping Survey

Individuals with special education needs have been particularly affected by the COVID-19 pandemic as they have been shown to be at high risk of losing medical and institutional support at a time when people are being asked to stay isolated, suffering increased anxiety and depression as a consequence. Their families have often found themselves under tremendous pressure to provide support, engendering financial hardship, and physical and emotional strains. In such times, it is vital that international collaborations assess the impact on the individuals and their families, affording the opportunity to make national and international comparisons of how people have coped and what needs to be done to optimize the measures taken by families, associations and governments. This paper introduces one such collaboration