The journey to a functional tics diagnosis and experiences of post diagnostic support: perspectives from adolescents and their parents

In 2020, clinical services noted an unexpected increase in functional tic disorders, which coincided with the timing of the COVID-19 pandemic. Evidence suggests that functional symptoms and tic disorders have a significant impact on family functioning and child and parent quality of life. However, little is currently known of the impact of a functional tics (FTs) diagnosis in adolescence, both on the young person and their family. The current qualitative study explores adolescent and parent experiences of a FTs diagnosis, associated symptoms, and post-diagnostic support. Seven females aged between 12 and 18 years with a formal FTs diagnosis and eight parents were recruited through Tourette’s Action, a UK-based charity concerning Tourette syndrome. Participants took part in individual semi-structured interviews <i>via</i> Microsoft Teams. Transcribed interviews were analysed using a reflexive Thematic Analysis. Themes generated from adolescent and parent interviews included (1) blamed, disbelieved, discounted, (2) fighting for help, (3) professional and community support and (4) changes in identity and relationships. The findings emphasise the importance of psychoeducation encompassing FTs and young peoples’ holistic needs, support to develop personalised strategies for management of FTs and interacting additional needs, alongside an increased public and professional understanding of FTs to aid stigma reduction. Functional tics have a significant impact on adolescent and familial wellbeing and functioning.Adolescents with functional tics and their families report experiences of stigma from public and professionals.An improved understanding of functional tics for rehabilitation professionals is vital to aid timely diagnoses and post-diagnostic support, including the provision of psychoeducation.Psychological support and community support are reported as helpful interventions for functional tics. Functional tics have a significant impact on adolescent and familial wellbeing and functioning. Adolescents with functional tics and their families report experiences of stigma from public and professionals. An improved understanding of functional tics for rehabilitation professionals is vital to aid timely diagnoses and post-diagnostic support, including the provision of psychoeducation. Psychological support and community support are reported as helpful interventions for functional tics.