The psychosocial consequences of growing up with Heritable Connective Tissue Disorders (HCTD) are largely unknown. We aimed to assess Health-Related Quality of Life (HRQoL) and mental health of children and adolescents with HCTD. This observational multicenter study included 126 children, aged 4–18 years, with Marfan syndrome (MFS, n = 74), Loeys–Dietz syndrome (n = 8), molecular confirmed Ehlers–Danlos syndromes (n = 15), and hypermobile Ehlers–Danlos syndrome (hEDS, n = 29). HRQoL and mental health were assessed through the parent and child-reported Child Health Questionnaires (CHQ-PF50 and CHQ-CF45, respectively) and the parent-reported Strengths and Difficulties Questionnaire. Compared with a representative general population sample, parent-reported HRQoL of the HCTD-group showed significantly decreased Physical sum scores (p < 0.001, d = 0.9) and Psychosocial sum scores (p = 0.024, d = 0.2), indicating decreased HRQoL. Similar findings were obtained for child-reported HRQoL. The parent-reported mental health of the HCTD-group showed significantly increased Total difficulties sum scores (p = 0.01, d = 0.3), indicating decreased mental health. While the male and female MFS- and hEDS-subgroups both reported decreased HRQoL, only the hEDS-subgroup reported decreased mental health. In conclusion, children and adolescents with HCTD report decreased HRQoL and mental health, with most adverse outcomes reported in children with hEDS and least in those with MFS. These findings call for systematic monitoring and tailored interventions.
BACKGROUNDS:Alcohol use among adolescents has become a major public health problem in the past decade and has large short- and long-term consequences on their health. The aim of this systematic review was to provide an overview of longitudinal cohort studies that have analyzed the association between the parent-child relationship (PCR) and change in alcohol use during adolescence.METHODS: A search of the literature from 1985 to July 2011 was conducted in Medline, PsycINFO, and EMBASE in order to identify longitudinal, general population studies regarding the influence of the PCR on alcohol use during adolescence. The studies were screened, and the quality of the relevant studies was assessed. A best-evidence synthesis was used to summarize the results.RESULTS: Twenty-eight relevant studies were identified. Five studies found that a negative PCR was associated with higher levels of alcohol use. Another seven papers only found this association for certain subgroups such as boys or girls, or a specific age group. The remaining sixteen studies did not find any association.CONCLUSIONS: We found weak evidence for a prospective association between the PCR and adolescent alcohol use. Further research to the association of the PCR with several types of alcohol use (e.g., initiation or abuse) and to the potential reversed causality of the PCR and alcohol use is required.
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Children with special educational needs included in Austrian mainstream schools are provided with special educational support, which aim to create learning environments, that meet the children’s needs on an individual level. Little is known about what adjustments children with special educational needs in mainstream school classes require to promote participation in school occupations. This is the first study in Austria exploring the student-environment-fit from self-perceived children’s perspective and comparing this to teachers’ perspective by using the School Setting Interview. In this cross-sectional matched pairs study twenty-five children (mean age 12.5 ± 1.4) with special educational needs and twenty-one teachers from six Austrian secondary schools were interviewed. Participants’ ratings were analyzed descriptively and statistically with Wilcoxon-Sign Rank Test. Reported adjustments from the child and teacher perspectives were analyzed with qualitative content analysis and presented using the occupational, social and physical environmental dimensions from the Model of Human Occupation. Results indicate perceived student-environment-fit differs between school activities as well as between children and teachers. Three out of 16 school activities showed a statistically significant difference between children and teacher matched-pair analysis. Children perceive more unmet needs then teachers. Most adjustments are reported in the social environment dimension and inform practitioners what adjustments are perceived to be useful for children with Special Educational Needs and their teachers. Both children’s and teacher’s perspectives provide valuable information. Significantly, children in this study were able to identify required needs and describe adjustments. To increase participation in school occupations, children can and need to be actively included in the decision-making process.
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In line with the ‘Natuur- en milieubeleidsplan Caribisch Nederland 2020-2030 (NMBP)’ the consortium intends with this research proposal to contribute to a prosperous society with a resilient population and healthy natural environment. The Caribbean Netherlands are dealing with a situation where imported vegetables and fruits are mostly imported and hardly affordable. This leads to consuming unhealthy food and high obesities rates as a consequence. A lack of good agricultural practices with regard to water-smart and nature inclusive agriculture, as well as limited coping capacities to deal with hazards and climate change, results in very limited local production and interest. Initiatives that focused only on agrotechnological solutions for food resilient futures turned out to be ineffective due to a lack of local ownership, which jeopardizes sustainability. Moreover, the ‘green’ and ‘blue’ domains are not seen as attractive career perspectives among youth, hampering a bright future for those domains. The aim of this research is to contribute to water-smart and nature inclusive food resilience embedded in a local participatory perspective in the Caribbean Netherlands. To address the above challenges, a living lab approach is adopted, where youth will be trained as (co)-facilitators (WP1) who will contribute to a participatory envisioning process and an articulation of food resilient futures (WP2). Finally, based on the envisioning process local stakeholders will select and implement experiments for food resilient futures followed by dissemination of results among key stakeholders as well as children and youth at the BES islands (WP3). This project strategy will lead to a network of a living lab where professionals and youth work together on food resilient futures. Training manuals and the results of experiments with regard to water and food system alternatives will be used actively to encourage youth to be involved in sustainable agriculture and consumption.
Psychosocial problems related to social isolation are a growing issue for wellbeing and health and have become a significant societal problem. This is especially relevant for children and adults with chronic illnesses and disabilities, and those spending extended periods in hospitals or permanently living in assisted living facilities. A lack of social relationships, social connectivity, and the inability to travel freely leads to feelings of isolation and loneliness. Loneliness interventions often use mediated environments to improve the feeling of connectedness. It has been proven that the utilization of haptic technologies enhances realism and the sense of presence in both virtual environments and telepresence in physical places by allowing the user to experience interaction through the sense of touch. However, the technology application is mostly limited to the experiences of serious games in professional environments and for-entertainment-gaming. This project aims to explore how haptic technologies can support the storytelling of semi-scripted experiences in VR to improve participants’ sense of presence and, therefore, the feeling of connectedness. By designing and prototyping the experience, the project aims to obtain insights and offer a better understanding of designing haptic-technology-supported storytelling and its potential to improve connectedness and become a useful tool in isolation interventions. The project will be conducted through the process of participants’ co-creation.
The clubfoot deformity is one of the most common congenital orthopaedic “conditions”. Worldwide approximately 100,000 children are born with unilateral or bilateral clubfoot every year. In the Netherlands the incidence is approximately 175 every year. This three dimensional deformity of the foot involves, equinus, varus, adductus, and cavus . Left untreated the clubfoot leads to deformity, functional disability and pain. Physical impairments of children with clubfoot might lead to limitations in activities and therefore impede a child’s participation. In clinical practice, the orthopaedic surgeon and physiotherapists are regularly consulted by (parents of) clubfoot patients for functional problems such as impaired walking and other daily activities. This does not only affect long-term and physical health of a child, it will also affect the development of social relationships and skills as well. Since walking is a main activity in children to be able to participate in daily life, our previous study (financially supported by SIA Raak Publiek) focussed on gait differences between children with clubfoot and controls. However, differences in gait characteristics do not necessarily lead to functional limitations and restricted participation. Therefore, providing insight in participation and a child’s performance in other activities than walking is necessary. Insight in a child’s participation will also indicate the functional outcome of the treatment, which on its turn could provide essential information concerning a possible relapse.. Early identification of a relapse is important since it could prevent the need for major surgical interventions. The occurrence of a relapse clubfoot will probably also lead to functional differences in the foot as well as problems during activity and participation. Therefore, the main focus of this study is the functional outcomes of physical activities and the characterisation of participation of children with clubfeet in daily activities of childhood.
