Prader-Willi syndrome (PWS) is a rare, complex, chromosomal disorder. Despite its rarity, this is a serious syndrome which affects the individual and their close people at various levels, physically and mentally. This syndrome includes a lot of features being constant hunger the most noticeable one. In pedagogical terms, persons with PWS suffer from moderate to severe learning difficulties. PWS is still unknown in Slovenia, therefore it is necessary to inform and raise awareness of both parents and various professionals of what the needs of children/persons with PWS are and offer them effective guidance for their practical work and equipping educators with the educational profile of pupils with PWS and forms of assistance and support.
The theoretical part of this master thesis presents the characteristics of PWS and functioning of persons with PWS, particularly from the educational point of view, in biological, emotional, cognitive, motor, social field, the field of speech and language and in the context of behaviour. Educational techniques, methods and forms of work, behavioural management and effective educational treatment of persons with PWS are described, classified and defined in different age groups (children, preschool, mandatory school, secondary school, juvenile period and adulthood).
The empirical research has been carried out in cooperation with the Prader-Willi Syndrome Association Slovenia. The empirical part contains a qualitative research of PWS that includes a case study, technics of questioning the parents and teachers of children with PWS using individual interviews and secondary analysis of materials, and quantitative one based on questionnaires for parents and teachers of children with PWS. A case study of a person with PWS in inclusive education is described taking into account their biological, socio-emotional and educational needs as well. Interviews and questionnaires for parents and teachers of persons with PWS are analysed. Findings from interviews and questionnaires are compared with the results of case studies and theoretical results.
All obtained data are interpreted with previously published findings about PWS. Based on everything an educational profile of individuals with PWS was produced contributing to their appropriate pedagogical treatment. Characteristics of persons with PWS and proven effective methods for working with these people at all stages of their life cycles (childhood, preschool, mandatory school, secondary school, youth and student period and adulthood) and in all areas (biological, emotional, cognitive, motor, social field, the field of speech and language and behaviour) are presented, with special emphasis on platform for working with them in educational practice and on identification of their strengths. Recommendations for planning and designing an individualized programme are with PWS are exposed and effective ways to reduce unwanted behaviours of pupils and students with PWS are developed. Adequacy of the model of inclusive education for persons with PWS is proven. Display of a system model of realization of special needs of persons with PWS and the model of a systematic approach to the development of inclusive education that effectively supports people with PWS are featured, subsystems of the 4-step system model for a successful introduction and implementation of inclusive education for these people are concretely described.
This master thesis contributes to the valuable research and better understanding of PWS, in our area so far poorly studied though important syndrome. Analysis, facts, recommendations and guidelines for working with people with PWS are contribution to the scientific development of special and rehabilitation pedagogy. With an articulated educational profile of people with PWS in Slovenia we can help professionals and parents to learn and understand this syndrome better and enable them to create a quality educational environment.
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