Qualitative Exploration of the Daily Experiences and Challenges Faced by Parents and Caregivers of Children with Tourette's Syndrome.

Abstract

Few studies address the daily challenges faced by parents of children diagnosed with Tourette’s syndrome. This article reports on a qualitative interview study with 15 parents exploring their experiences, the challenges they face and the support mechanisms they have found to be most helpful. Thematic analysis identified four core categories which represented shared experiences of the participants: coping with children’s challenging behaviours, misconceptions and lack of understanding of professionals and the lay public, negative experiences of their children’s education and lack of support and services for families with Tourette’s syndrome. The findings highlight the challenges of parenting a child with Tourette’s syndrome, particularly with respect to family life and the child’s schooling.