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Person with Teacher Collins syndrom in context with coordinated care and quality of life, case study
KOUBOVÁ, Michaela
Bachelor thesis deals with the issue of Treacher Collins syndrome. Treacher Collins Syndrome is a rare genetic disease that is distinctly manifested by deformities in the face. Due to the different appearance and ignorance of the syndrome, it is difficult, for the public, to integrate individuals into society. These factors impede the mental well-being of both the individual and his family. This work is divided into theoretical and research part. In the theoretical part, the subject of this syndrome is elaborated based on relevant sources, so that the reader be well versed in this issue. It deals with the definition of Treacher Collins syndrome, its history, description of symptoms, and causes. The thesis also mentions methods of prenatal diagnosis and the development of such an individual. The next part focuses on comprehensive care of individuals. It includes special pedagogical care, health and social care. It deals primarily with the education of individuals, surgical interventions, compensatory aids, and the integration of individuals with Treacher Collins syndrome into society. The research part consists of a case study of a specific individual with Treacher Collins syndrome and his family. This part has been aimed to obtain and process information concerning the state of health, personal and family case history, available medical care, education, interests and life quality of the individual and his family. An in-depth interview and analysis of specific documents were used to obtain data. The research revealed a lot of interesting information. It turned out that the quality of life is influenced by levels of parental competencies, quality of health care, and the functionality of integration into the education system.
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