Knowledge Helps: Handling Rare Diseases in Regular Schools

Abstract

Thanks to medical successes and new treatment options, children and adolescents with rare diseases can now attend school more often playing an important role in their recovery as well as improving their social inclusion. For this reason, it is important for teachers to address the issue and acquire skills in dealing with rare diseases. In this context, a multi-professional team at the Salzburg University of Teacher Education organized a blended learning seminar on the topic of rare diseases at schools. Participants were provided with videos, texts, and case studies on a learning platform, which were worked on over a period of three weeks. There were also two online lectures in which questions could be asked. In order to evaluate the tool, 21 participants took part in a quantitative longitudinal study by means of a pretest and a posttest with a four-month interval. The participants completed a questionnaire consisting of a competence screening dealing with rare diseases together with questions to measure general and teacher self-efficacy. As expected, there was a statistically significant increase in both general and teacher self-efficacy with medium effect sizes. In addition, the theoretical and practical skills for supporting affected students at school were also shown to improve in a self-assessment. In view of the positive response from participants, it is recommended to further expand this offering in order to reach a broader population of teachers. In other words, only through raising awareness and increasing the competence of professionals working in schools can an environment be created for affected children and adolescents in which their specific needs are addressed.

Keywords

• inclusion
• rare diseases
• school
• teaching unit
• online tool