Parent-young person lived experience of sensory dysregulation in children with tic disorders: a qualitative study

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PURPOSE: To understand the breadth of sensory dysregulation on participation in daily tasks for young people with tic disorders, as research identified that sensory dysregulation experiences are broader than the symptoms being assessed. METHODS: Eighteen semi-structured interviews were conducted with 16 families with children (5-16 years) with tic disorders. Interviews ranged from 45 to 120 min and were transcribed verbatim. Data collected from parents and young people were analysed and coded together. Thematic analysis using inductive and open coding methods was implemented using NVivo. RESULTS: The impact of sensory dysregulation on daily life may be understood through the higher-order theme: ''sensory, emotions and tics; it's a ticking time bomb'', and three subthemes: (1) we sacrifice and adapt to get daily activities done in the home, (2) my child's experience of the community environment hinders participation, and (3) sensory preferences impact our entire family. CONCLUSION: Sensory dysregulation experiences impact the entire family's quality of life, yet patient-reported sensory measures do not adequately capture the impact on the family unit and breath of symptoms. A sensory-based measure for children with tics is needed to comprehensively assess sensory dysregulation sensitivities for this population, ensuring patients' needs and effectiveness of therapy can be measured.

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