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Title: A New Way to View Perceptions of the Quality of Life of Families Who Have a Child With Tourette Syndrome
Other Titles: Nowe spojrzenie na jakość życia rodziny dziecka z syndromem Tourette’a
Authors: Khoury, Rita
Keywords: perceptions
quality of life
Tourette Syndrome
Issue Date: 2015
Publisher: Wydawnictwo Naukowe UAM
Citation: Studia Edukacyjne, 2015, nr 36, s. 425-442.
Abstract: The purpose of this study was to gather data from the families of children with Tourette Syndrome (TS), in order to examine the extent to which the existence of a child with TS in the family affected their Family Quality of Life (FQOL). The research was conducted according to the mixed methods approach, combining quantitative and qualitative methods. Data was collected from 25 families of children with TS. The questionnaire was analyzed statistically and the interviews were analyzed using a content analysis method. Conclusions derived from the research findings allowed the development of the ACEIST model, including five new sub-domains of FQOL that reflect the experiences of the studied families: advocacy, cooperation, explanation, information, and the severity of TS. This is a new way to view the FQOL of families who have a child with TS which is very precise, functional and family-specific. This ACEIST model fills the knowledge gap in this field, contributing to our knowledge regarding the FQOL of families who have a child with TS. The new model has practical implications for education as well as social and health policies in Israel regarding families who have a child with TS.
DOI: 10.14746/se.2015.36.24
ISBN: 978-83-232-2958-2
ISSN: 1233-6688
Appears in Collections:Studia Edukacyjne, 2015, nr 36

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