Perceptions of FQOL of families who have a child with Tourette syndrome

Khoury, Rita (2010) Perceptions of FQOL of families who have a child with Tourette syndrome. Doctoral thesis, Anglia Ruskin University.

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The Family Quality Of Life (FQOL) of families who have a child with Tourette Syndrome (TS) has not yet been investigated globally. The purpose of this study was to gather data and listen to the voices and opinions of families of children with TS in order to examine the extent to which the existence of a child with TS, in the family, affected their FQOL. The research was conducted according to the mixed methods approach, combining quantitative and qualitative methods. Data was collected concerning the research population that included all the families who have a child with TS living at home, and registered at the Tourette Syndrome Organisation in Israel. Additionally, semi-structured interviews were conducted with 10 of these 25 families of children with TS. The questionnaire was analysed statistically and the interviews were analysed using a content analysis method. Conclusions derived from the research findings allowed the emergence of the ACEIST model, including five new sub-domains of FQOL that reflect the experiences of the studied families: Advocacy, cooperation, explanation, information, and severity of TS. This is a new way to view FQOL of families having a child with TS, very precise and operative and specific to those families. This ACEIST model fills the gap in knowledge identified in this field, contributing to knowledge regarding FQOL of families who have a child with TS. The new model has practical implications for the education, social and health policies in Israel regarding families who have a child with TS.

Item Type: Thesis (Doctoral)
Faculty: Theses from Anglia Ruskin University
Depositing User: Repository Admin
Date Deposited: 20 Feb 2012 11:49
Last Modified: 09 Sep 2021 19:03

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