Investigation On Teachers’ Awareness And Education Status Of Students’ Rare Diseases In Special Schools For Intellectual Disability

Health is an important physical and mental condition for individuals to carry out all activities.Rare diseases have different degrees of health impact on students with rare diseases.Because of the low incidence of rare diseases,patients belong to a very small group,they are easily to be marginalized in society,and their urgent needs in all aspects are ignored,as well as in the field of education.This study investigates teachers’ knowledge and education status of students with rare diseases in special schools for intellectual disability,explores effective measures to improve the education status of students with rare diseases,and promotes the education quality of students with rare diseases.This study consists of three parts: interview research,questionnaire survey and case study.In the part of interview research,nine teachers from two schools for intellectual disability were interviewed one by one by using semi-structured interview outline,so as to understand the teachers’ views on rare diseases and educational measures,provide a practical reference for compiling questionnaires,and preliminarily reflect the teachers’ knowledge and educational situation on students’ rare diseases.In the questionnaire survey part,using the self-designed questionnaire "Questionnaire of Education Status of Students with Rare Diseases in Schools for Intellectual Disability Students",we conducted an online survey of 302 teachers in schools for intellectual disability students from the aspects of knowledge,occurrence,health care,attendance and teaching,communication between home and school,and coping with challenges,so as to understand the teachers’ understanding and education status of rare diseases among students.Case study to choose a representative society-adaptation schools as case analysis,a semi-structured interview of seven teachers,by analyzing the case school student education present situation of rare disease,to learn more about the university students cope with rare diseases of education on the working mechanism and countermeasures,based on the analysis of the current difficulties of rare diseases student education.The results shows:（1）Influenced by the cases of students with rare diseases,teachers in schools for intellectual disability have a limited overall understanding of students with rare diseases.They mainly master the knowledge of the concept and educational concept of rare diseases,but lack the awareness of the influence of rare diseases on students’ education.（2）Schools for intellectual disability students have adopted special educational adjustment measures mainly in health care,communication between home and school,etc.,but seldom in classroom teaching and class construction,and the adjustment measures mainly consider the health factors of students with rare diseases.（3）The existing management system and system of the school for intellectual disability students covers the routine education work for students,and relatively lacks comprehensive consideration on health management of students with rare diseases and communication system between home and school.（4）The main difficulty for teachers in intellectual disability schools to deal with students’ rare diseases is the lack of professional knowledge and skills related to the education of students’ rare diseases,which is largely due to the lack of access to the education professional knowledge of students with rare diseases.Based on the findings of this study,suggestions are put forward on how to promote the education of rare disease students in special schools from the perspectives of relevant departments,special schools,teachers and parents.At the same time,the shortcomings of this study are analyzed,which can be used as a reference for future related research.