A Qualitative Exploration of the Experiences of Children and Adolescents with Tourette Syndrome.

Abstract

OBJECTIVE: The purpose of this qualitative study was to explore the experiences of youth with Tourette Syndrome (TS). METHOD: Thirteen participants with TS were recruited from a large tertiary care hospital to complete semi-structured interviews and two questionnaires pertaining to demographic information and tic severity. Thematic analysis was utilized to systematically analyze the data. RESULTS: Three main themes were identified: 1) beliefs about TS; 2) TS related distress and impairment; and, 3) coping with TS. CONCLUSION: The findings from this study suggest that most participants were aware of their tics but unaware of the cause of tics/TS. The interviews also highlighted that, for most participants, TS caused emotional, social, physical, and/or occupational impairment. Despite their distress, participants provided several suggestions for coping with TS and for supporting those who are diagnosed with this condition.