O'Hare, Deirdre, Eapen, Valsemma, Grove, Rachel, Helmes, Edward, McBain, Kerry, and Reece, John (2017) Youth with Tourette syndrome: parental perceptions and experiences in the Australian context. Australian Journal of Psychology, 69 (1). pp. 48-57.

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Abstract

Objective: To enhance understandings of the impact of TS on parents of diagnosed youth. Specifically, the current study aimed to explore and identify the multidimensional stressors associated with parenting a child or adolescent with Tourette Syndrome (TS) in the Australian context.

Method: As part of a larger qualitative and quantitative community-based study, semi-structured telephone interviews with 22 mothers of youth with TS were conducted regarding their experiences.

Results: The study identified parent, child and contextual factors that contributed to parental stress, with many mirroring the experiences of parents of children with other chronic paediatric disorders. However several TS specific factors also emerged from the data analysis, highlighting the unique difficulties encountered by parents of diagnosed youth. Serious deficits in professional expertise and services currently available for the TS community were also identified.

Conclusions: Findings indicate the generally unacknowledged challenge of parenting a child with TS, which equates with that experienced in the context of other serious chronic paediatric disorders. Results also indicate the need for psychosocial support for both child and parent, and greatly improved access to well-informed mental health and educational services in the Australian context.

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