Schooling of Children with Rare Diseases and Disability in Europe

ABSTRACT

Inclusive education of disabled students has been promoted in European disability policies. However, the transition process from more segregated system is slow. The purpose of this study was to provide an insight about different types of schooling of disabled children affected by a rare disease across Europe and to evaluate their and caregivers’ well-being. We analysed data from a cross-sectional study (BURQOL-RD) of persons with rare diseases that cause intellectual and/or physical disability: Prader-Willi syndrome, fragile X syndrome, three types of mucopolysaccharidosis and Duchenne muscular dystrophy. The sample consisted of 359 children aged 6–17 and 269 caregivers from eight European countries. Results showed differences between countries in proportion of students placed in special schools, which are still valid option in countries such as Germany, France or UK. Within the inclusive education modalities, lack of special support for disabled students was observed especially in low-income countries. No association between the type of schooling and quality of life was observed, but the subjective caregivers’ burden seems to be higher in special schools. The study shows existent differences in implementation of inclusive education in Europe. More research is needed in the field of rare disease disability and educational needs.     

Access to post‐compulsory education and training: economic,sociological and political determinants and remaining research gaps

This paper presents a review and assessment of existing theoretical accounts to explain differentials in access to education and training in advanced economies. These theories tend to focus on the analysis of the influence of a set of economic, sociological and political variables on access to education. Existing theories are criticized on two grounds. Firstly, they seldom take into consideration the crucial role of political‐institutional factors, and in particular, welfare states’ actions through direct investment and regulation in shaping access levels. Secondly, they focus narrowly on the analysis of different stages of education and training, and this does not reflect the current policy emphasis on lifelong learning. The paper concludes with an outline of a future research agenda to address these gaps, and also calls for a more rigorous analysis of the weight of the different factors affecting access.     

Science–technology flows in Spanish regions: An analysis of scientific citations in patents

Many regions of the European Union with a high degree of autonomy have elected very clearly to stimulate scientific research and technological development (R&D) as a specific means of promoting economic growth and the welfare of their citizens. In Spain, several autonomous regions have organised their efforts in science and technology by means of the adoption of regional R&D plans. In some cases, particular concern is taken to link the scope of scientific research with that of technology, but even in these few cases, it is acknowledged that little is known of the mechanisms by which the results of scientific research are translated into technological development, and how this latter in turn influences the objectives of scientific research. Our aim in this article is to study in greater depth the relationship between science and technological development in the various regions of Spain. The methodology that we apply to investigate the links between science and technology is based on an analysis of scientific citations in patent documents (non-patent citation (NPC)). The results obtained from this study provide some relevant data on the interconnection between the scientific and technological systems from a regional perspective.     

Portuguese science teachers' education,attitudes, and practice relative to the issue of alternative conceptions

Many studies have shown that students of all school levels hold alternative conceptions that differ from the scientific conceptions transmitted by the school. These results raise some questions about the efficacy of traditional teaching and stress the need for using teaching strategies that explicitly take into account the alternative conceptions that students bring to the science classes. This issue has recently been raised and widely discussed throughout Portugal and the proposals for the new science syllabuses advise teachers to take it into account. However, the number of studies investigating both the teachers' attitudes towards this issue and the use of teaching strategies based on students' alternative conceptions is very limited. This article aims to present the results obtained from science teachers about their attitudes towards students' alternative conceptions and the use of teaching strategies based on these conceptions. The results may contribute to the planning of in-service courses.     

The Socio-Economic Background of Erasmus Students: A Trend Towards Wider Inclusion?

The article focuses on the financial issues and family background of Erasmus students. It examines the costs of Erasmus study periods in the academic year 2004/05 and the socio-economic background of Erasmus students that year, based on over 15000 survey responses. Results are compared with those of a similar survey undertaken in 1998 to track changes over the last decade. The main question that the article addresses is whether international mobility of higher education students within the Erasmus programme has been expanded to more students from lower socio-economic backgrounds during this period. We find that, in spite of still important socio-economic barriers to the take-up of the programme, access has been moderately widened.     

A Complex Systems Network Approach to Quantifying Peer Effects: Evidence From Ghanaian Preprimary Classrooms

Research on classroom peer effects has focused nearly exclusively on high-income countries and on academic skills. Little is known about peer effects in low-income countries and whether effects differ under different educational environments (e.g., teacher-directed versus child-centered, conditions of concentrated advantage or disadvantage). Based on a data set of Ghanaian preprimary classrooms in the Greater Accra Region collected in the 2015–2016 school year, we use complex system networks with multilevel modeling to study the presence and magnitude of peer effects. Results corroborated small statistically significant effects on academic and nonacademic skills (d = .06–.10). Peer effects on literacy were larger for children in public schools, who are relatively more disadvantaged than their private school counterparts. Teacher-directivity intensity did not moderate peer effects.     

Images of Science Linked to Labwork: A Survey of Secondary School and University Students

This paper presents findings about the images of science drawn upon in laboratory work, by upper secondary and university students, in academic streams with a science focus. Data were collected through four written questions, administered to a total of 368 students. The questions all required students to comment on laboratory investigations carried out by research scientists or by science students. We show that students' reasoning has an epistemological and an ontological dimension, and that it often differs significantly from accepted perspectives on the nature of science. The issue for teaching appears to be showing students what counts (and what does not count) as appropriate reasoning in actual situations. In other words, explicit teaching about the various relationships that can exist between theory and data would transform labwork towards a more critical process that involves making and justifying decisions.