Research on the quality of school life of children affected by congenital haemorrhagic disorders. A critical reading of the data and some pedagogical considerations.

Abstract

This paper presents data collected by researchers A. Gigli e S. Demozzi from the Department of Education at the university of bologna as part of the University’s strategic project “Definitions of guidelines for use with paediatric patients affected by congenital haemorrhagic disorders: medical psychosocial, educational and ethical aspects”. The main aim of the work was to analyses the point of view of teachers regarding the scholastic experience of children with congenital haemorrhagic disorders, their relationships with teachers and peers, and the relationship between schools and families. In order to monitor these questions a survey was carried out in 2008 which involved teachers from nursery, primary and secondary schools in the Province of Bologna who teach in classes with a child suffering from congenital haemorrhagic disorders. Semi structure interviews were used to meet the following objectives: to verify whether there were “distorted” representations of the pathologies and the existence of prejudices; to analyse the information process through which teachers are informed about the situation of a child and about congenital haemorrhagic disorders; to describe the weak and strong points which may influence, positively or negatively, the family-school relationship; to investigate whether there were prejudices reading the cognitive ability of the children; to see whether teachers felt the illness influenced the quality of relationships at school, looking at aspect of communication, in particular; to check if there were problems regarding integration with peers; to check whether there were strategies which help improve integration and carrying out classroom activities, games, and sports; to reveal the training and information needs of teachers. The article presents a critical reading of the data from a pedagogical viewpoint and refers to categories of reflection in educational science. The work integrates with S. Demozzi’s work “ Childhood and congenital haemorrhagic disorders The teachers point of view through research data” which presents the data collected in detail.