Perceptions of Parents and Caregivers in New Zealand: Educational Experiences of their Children with Tourette Syndrome

Abstract

ABSTRACT Tourette Syndrome (TS) is a neurological disorder estimated to affect around 1% of children worldwide. Although advances in pharmacological and behavioural treatments appear promising, there is a paucity of research, especially in New Zealand, where little is known about parents’ and caregivers’ attitudes and experiences. The current study aimed to explore parents’ and caregivers’ attitudes and experiences of education for their child diagnosed with TS in New Zealand. Participants were also asked about any changes in tics during the COVID- 19 lockdowns. Parents with a child diagnosed with TS and members of the Tourette’s Association New Zealand’s patient support association were recruited for the survey. In total, 75 parents agreed to participate in the anonymous online survey during February and March 2021. A thematic analysis of participants’ qualitative responses was completed. Five distinct themes emerged from the data: (1) Accommodations (2) Separate Space (3) Tics’ interference with Learning (4) Tics and COVID- 19 Lockdown, and (5) Recommendations. Understanding parents’ attitudes towards and experiences with TS is essential when identifying recommendations for school personnel, peer educational programs and clinical pathways in New Zealand. Suggestions for future research are discussed.