TITLE: Life of Family with a Child with the Toriello-Carey Syndrome AUTHOR: Bc. Ivana Valuchová DEPARTMENT: Department of Special Pedagogy SUPERVISOR: PhDr. Monika Mužáková, PhD. ABSTRACT: The thesis deals with the family of a child with a disease of rare Toriello-Carey syndrome. This is an isolated case of this disease in Europe. The main objective of the thesis is to process of complex information relating to disease of Toriello-Carey syndrome and to determine impacts of the syndrome on the quality of life of individuals and their families. The thesis is divided to theoretical and empirical parts. The theoretical part contains three chapters. The first theoretical chapter (Introduction) is devoted to detail syndrome- its etiology, symptoms, context, history, clinical assessment, treatment and prognosis. Other theoretical chapters describe a family with a child with disabilities and specifics of families with rare diseases. The empirical part of the thesis is focused on a research and mapping the life of the family of a child with Toriello-Carey syndrome by analyzing the documents and semi-structured interview with the parents and an active observation boy. KEYWORDS: Toriello-Carey syndrome; Child; Symptoms; Home care; Rehabilitation
| Identifer | oai:union.ndltd.org:nusl.cz/oai:invenio.nusl.cz:343191 |
| Date | January 2016 |
| Creators | Valuchová, Ivana |
| Contributors | Mužáková, Monika, Hájková, Vanda |
| Source Sets | Czech ETDs |
| Language | Czech |
| Detected Language | English |
| Type | info:eu-repo/semantics/masterThesis |
| Rights | info:eu-repo/semantics/restrictedAccess |
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