Epileptic seizures are associated with changes in autonomic function. Ictal asystole, when it leads to syncope, can cause severe traumatic falls. We discovered a new indirect method, based on video... Show moreEpileptic seizures are associated with changes in autonomic function. Ictal asystole, when it leads to syncope, can cause severe traumatic falls. We discovered a new indirect method, based on video, EEG and ECG, to disentangle if vasodilatation was the dominant mechanism behind the syncope. In this group of patients, pacemaker implantation is less helpful. Autonomic manifestations of epilepsy can also help to detect seizures. Our literature review discovered that combining different modalities in one detection device provides higher sensitivity, and personalization of detection algorithms can decrease false alarm rate. We validated a wearable multimodal detection system (NightWatch) on children at home. NightWatch showed high sensitivity for the detection of potentially dangerous nocturnal seizures, reduces caregiver stress and saved costs from a societal perspective. Validation of an automated video detection system showed that this could provide a good alternative for children who cannot tolerate a wearable device.From different qualitative user studies, we concluded that caregivers’ needs for seizure detection vary greatly. Also, the success of device implementation is highly dependent on the protective behavior parents developed towards their child with epilepsy. This emphasizes the importance of tailored and user-centered approaches for seizure detection. Show less
Labrie, N.; Kunneman, M.; Veenendaal, N. van; Kempen, A. van; Vliet, L. van 2023
Objective: To develop valid and realistic manipulations for video-vignette research using expert opinion rounds, in preparation of an experimental study on clinicians' (un)reasonable argumentative... Show moreObjective: To develop valid and realistic manipulations for video-vignette research using expert opinion rounds, in preparation of an experimental study on clinicians' (un)reasonable argumentative support for treatment de-cisions in neonatal care. Methods: In three rounds, N = 37 participants (parents/clinicians/researchers) provided feedback on four video -vignette scripts and completed listing, ranking, and rating exercises to determine which (un)reasonable argu-ments clinicians may provide to support treatment decisions. Results: Round 1: participants deemed the scripts realistic. They judged that, on average, clinicians should provide two arguments for a treatment decision. They listed 13-20 reasonable arguments, depending on the script. Round 2: participants ranked the two most salient, reasonable arguments per script. Round 3: participants rated the most plausible, unreasonable arguments from a predefined list. These results guided the design of 12 experimental conditions. Conclusion: Expert opinion rounds are an effective method to develop video-vignettes that are theoretically sound and ecologically realistic and offer a powerful means to include stakeholders in experimental research design. Our study yielded some preliminary insights into what are considered prevalent (un)reasonable arguments for clinicians' treatment plans. Practice implications: We provide hands-on guidelines on involving stakeholders in the design of video-vignette experiments and the development of video-based health communication interventions - both for research and practice. Show less
Kann, D.H.H. van; Koolwijk, P.; Kok, T. de; Vos, S.B.; Vries, S.I. de; Mombarg, R.; ... ; Remmers, T. 2022
ObjectivesEarly childhood is a crucial phase for motor development in which differences between children can manifest. These differences might be related to factors in ecosystems in which children... Show moreObjectivesEarly childhood is a crucial phase for motor development in which differences between children can manifest. These differences might be related to factors in ecosystems in which children are raised, of which little is currently known. The current study's purpose was to explore which modifiable factors in children's ecosystems are associated with the odds for low versus higher motor competence (MC) in 4- to 6-year-old children.DesignA cross-sectional study design was conducted to investigate which modifiable social and physical factors in the home environment and direct living environment were associated with differences in MC.MethodsChildren's MC was measured through the Athletic Skills Track in 612 4- to 6-year-olds, from 10 primary schools in Eindhoven, the Netherlands. Parenting practices, characteristics of the home environment, and perceptions of the direct living environment were assessed through parental questionnaires. Hierarchical logistic regression analyses were conducted to evaluate factors associated with low MC in children.ResultsThe presence of a garden at home and higher perceived sports facilities in the direct living environment decreased the likelihood of children being classified as low MC. Moreover, stronger parental active transportation routines and more discouraging physical activity parenting practices resulted in lower odds of low MC. In addition, girls were more at risk for low MC.ConclusionsCharacteristics of the social and physical home environment and direct living environment were associated with MC disparities during early childhood. Both parenting practices and parental physical activity-involved behaviours are relevant modifiable factors related to differences in children's MC. Show less
Iotova, V.; Schalin-Jantti, C.; Bruegmann, P.; Broesamle, M.; Graaf, J. de; Bratina, N.; ... ; Hiort, O. 2021
Aim To perform a baseline survey on condition-specific information access among patients/parents/caregivers with rare endocrine disorders (RD) in Europe. Methods Electronic invitation to... Show moreAim To perform a baseline survey on condition-specific information access among patients/parents/caregivers with rare endocrine disorders (RD) in Europe. Methods Electronic invitation to participate in a survey (19 questions) was sent to 120 patient advocacy groups (PAGs), and further distributed to 32 European countries. Results A total of 1138 respondents from 22 countries (74% women), aged between 1 year (parents) and 70 years, participated. The Netherlands, France, Germany, Italy and France had highest participation rates. All Main Thematic Groups (MTGs) were represented; the adrenal (32%), pituitary (26%) and thyroid (22%) were the most common. The majority of the respondents got information from their endocrinologist (75%), PAGs (37%) and expert reference centre (22%); 95% received information in their mother tongue. Leaflets (70%), infographics (65%), webinars (60%) and Internet films (55%) were preferred ways of learning. Respondents relied mostly on materials by PAGs and alliances (79%), rather than from specific international RD sites (15%). Fifty-six percent used Facebook, and 37% other social media, with a significant age difference (40 years) among non-users, 19% vs. 36%, p < 0.0001. Of all, 685 answered questions on informational materials for children-79% wanted materials that can be used by the children themselves. There was significant age difference (40 years) in the willingness to help create new educational materials; 49% vs. 34%, p < 0.001. Conclusions Our current patient information access survey provides a sound basis for further planning and execution of educational and teaching activities by Endo-ERN. Show less
Based on multisited fieldwork in Kigali, Rwanda, Belgium, and the Netherlands following the political crisis in Burundi in 2015, we explore decisions and plans for the future among Burundians in... Show moreBased on multisited fieldwork in Kigali, Rwanda, Belgium, and the Netherlands following the political crisis in Burundi in 2015, we explore decisions and plans for the future among Burundians in exile. In this way, we contribute to research about future making and social reproduction in families in a transnational social field affected by crisis. Adding to the literature, we show the specific effects of crisis on transnational families’ practices and aspirations, such as parental efforts to prevent traumatic world views and the constant need for families to readjust their plans to ongoing crisis dynamics. We argue that as the violence has disrupted the migrant parents’ hopes for a better future for themselves, they redirect their efforts towards their children’s futures. We thus argue that not only future making practices but also aspirations should be seen as social and relational, particularly in times of crisis. In particular, the Burundians living in Rwanda, Belgium and the Netherlands seek to provide their offspring with the skills to become educated, social and moral beings, even it entails sacrificing their own lives and aspirations. Moreover, adding to debates on migrants’ efforts to reproduce their own cultural values and practices in host societies, we find that the Burundian parents attempt to change what they perceive as a ‘culture of hatred and vengeance’ with parenting practices. As such, we argue that many migrant parents explicitly pursue social transformation through their children. Show less
Lamers, A.; Nieuwenhuizen, C. van; Twisk, J.; Koning, E. de; Vermeiren, R. 2016
In this thesis, determinants, risk and protective factors of parental reactions to childhood cancer are described and research areas that are understudied until now have been identified. Chapter 2... Show moreIn this thesis, determinants, risk and protective factors of parental reactions to childhood cancer are described and research areas that are understudied until now have been identified. Chapter 2 contains a review study on stress and adaptation in parents of pediatric cancer patients. Chapter 3 describes the results of a multicenter study among parents of children with cancer with the aim to evaluate the psychometric qualities of the Dutch version of a disease-related instrument measuring parental stress. Chapter 4 is a review article on parental stress and adaptation among parents of children undergoing stem cell transplantation (SCT). Chapter 5 contains the results of a longitudinal study on child- and parent reported health related quality of life and parenting stress in parents of children undergoing SCT. In Chapter 6, the results of a cross-sectional study on parental stress and perceptions of child vulnerability in parents of children who underwent SCT either 5 or 10 years ago are reported. In Chapter 7, cognitive problems, behavior problems and health related quality of life of children with LCH are described. Show less
