A New Way to View Perceptions of the Quality of Life of Families Who Have a Child With Tourette Syndrome
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Date
2015
Authors
Advisor
Editor
Journal Title
Journal ISSN
Volume Title
Publisher
Wydawnictwo Naukowe UAM
Title alternative
Nowe spojrzenie na jakość życia rodziny dziecka z syndromem Tourette’a
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.
Description
Sponsor
Keywords
perceptions, families, quality of life, Tourette Syndrome
Citation
Studia Edukacyjne, 2015, nr 36, s. 425-442.
ISBN
978-83-232-2958-2