Evaluación de los conocimientos de los docentes de la Región de Murcia sobre el Síndrome de X Frágily diseño de una guía práctica para docentes

Resum

Fragile X syndrome is one of the so-called rare diseases. It is the leading cause of hereditary intellectual disability. It presents a varied phenotype, which forces education professionals who work with these children to be well trained to allow them to deliver quality and inclusive education. However, several studies indicate discontent from the families in this regard. In general in rare diseases and, in particular, in fragile x syndrome, families feel there is a low level of understanding and they experience situations of exclusion towards their children, which may be due to the lack of knowledge and training on the part of teachers (FEDER, 2013; Grau-Rubio, Fernández-Hawrylak, & Cuesta-Gómez, 2015; Tenorio, 2011). This work aims to: Phase 1) evaluate, by way of a study, of the needs of the groups involved, determine the level of knowledge about fragile X síndrome the Infant / Primary and Secondary teachers of the Region of Murcia currently have; Phase 2) carry out a systematic review of teaching guides focused on Fragile X Syndrome and produce a guide that integrates their best characteristics. For the development of Phase 1, an ad hoc instrument was created, the NECEFORMXF_v2, which included an examination of intervention strategies on traits of Fragile X Syndrome. For its creation, NECEFORMXF_v2 underwent an expert judgment process (10 judges) and a pilot application (31 participants) before reaching its final format. The final instrument was distributed by the Ministry of Education and Culture among teachers in public and subsidized schools in the region, who were able to fill it in online through the Survey platform of the University of Murcia. Responses were obtained from 831 teachers of the Infant / Primary and Secondary stages. The professional profiles were Hearing and Language teachers, Therapeutic Pedagogy teachers, Counselors and teachers of different subjects. The results indicate that specialist disability teachers obtain better grades than other teachers, although their grade barely exceeds the approved one. Among specialist disability teachers, counselors and teachers of therapeutic pedagogy obtain better grades than hearing and language teachers. It is concluded that teachers, in general, have poor knowledge about Fragile X Syndrome. Finally, teachers who claim to have received training on the syndrome, obtained higher scores than those who did not have this training. For the development of Phase 2, after carrying out an analysis of teaching guides located in Spanish and English on Fragile X Syndrome (15 guides in total), it was determined that they could be improved in certain aspects such as: a table of contents, use images, plain language,... Next, we proceeded to develop a guide entitled "Fragile X Guide for teachers. Strategies for Inclusion", using the infographic format. This format has allowed us to use images and summarized texts, meaning that teachers are able to read it quickly. Finally, the teaching guide created from the study of needs and the systematic review of the previous existing guides, was subjected to an expert judgment (7 experts) to improve the final structure.