Educational inclusion of students with rare diseases: Schooling students with spina bifida

Abstract

Accessible Summary We talked to students with spina bifida and their families about how to improve their schooling. We identified five areas for improvement: accessibility, times of transition, personal attitude, educational response and coordinated work. They told us that coordinated work between professionals is essential to facilitate their schooling. Abstract Background More and more voices have pointed out the need to improve the quality of life of people with rare diseases. Given the diversity of this group, we wanted to focus on the educational context for students with spina bifida ( SB ). The purpose was to analyse these people's experiences in the school context with the aim of fostering good practices resulting in higher quality education. Methodology It was conducted based on the qualitative methodology of focus groups to give a voice to students with SB and their families. Results We identified five areas for improvement: accessibility, times of transition, personal attitude, educational response and coordinated work. Conclusions The main conclusion was that the responsibility for educational needs lies not only with the teacher or the school. It is necessary to work together, not only on the part of professionals in the educational context, but also between professionals from different contexts (educational, medical and social) and between school and families.