Cystic fibrosis is a less well-known rare genetic disease that is often presented in foreign and domestic literature in particular from a medical point of view. Therefore, professionals working with children with cystic fibrosis can face many questions and dilemmas that are due to the ignorance of this disease and its impact on the education and education of children with cystic fibrosis.
The main goal of the master's thesis was to find out where professional staff from kindergartens and elementary schools obtain appropriate guidelines for working with children with cystic fibrosis, how they adapt their work, and what kind of information related to working with children with cystic fibrosis would still want to obtain. In the master's thesis, we especially wanted to emphasize the importance of cooperation between professional staff, medical staff and families, and not least the role of peers, classmates of a child with cystic fibrosis for easier integration into the educational process. They may have a significant influence on the self-image of children, but at the same time, they can use simple things such as photocopying notes, carrying a bag, etc. greatly ease schooling.
In the empirical part, using the questionnaire, we examined how 21 professional workers from three kindergartens and three primary schools in Slovenia plan, implement, adapt and evaluate educational work for children with cystic fibrosis and where to get instructions for working with them. We also investigated what kind of information regarding work with children with cystic fibrosis they would like to acquire, and if there are differences between professional staff in kindergarten and elementary school. The study used descriptive statistics and Kullback 2Î test. The results of the research showed that there are no statistically significant differences between professional staff in elementary schools and kindergartens depending on who they are involved with in planning, implementing and evaluating educational work. Most of the respondents mostly work with their parents and teachers or educators. Most professionals gain information about cystic fibrosis online, and none of the respondents has attended training on this subject. The results also show that most professionals with parents of children with cystic fibrosis participate only when needed. The adaptation most frequently used by the respondents when working with children with cystic fibrosis is the ventilation of a casino or classroom and enzyme support. We have found that there are no statistically significant differences between professional staff in elementary school and kindergarten in the selection of information that they would like to obtain about cystic fibrosis, according to the name of education and years of experience with children with cystic fibrosis.
On the basis of the obtained results in the final part of the master's thesis, we provide guidelines for professional workers who will assist in the planning and implementation of educational work with children with cystic fibrosis. With the master's thesis, we want to contribute to raising the quality of education and education of children with this disease in kindergartens and elementary schools.