Exploring Adults’ Experiences of Treatment for Tic & Tourette Syndrome
Research type
Research Study
Full title
Exploring Adults' Experiences of Treatment for Tic and Tourette Syndrome
IRAS ID
330111
Contact name
Breda Cullen
Contact email
Sponsor organisation
University of Glasgow
Duration of Study in the UK
1 years, 1 months, 0 days
Research summary
Background
Tourette’s syndrome (TS) and chronic tic disorder (TD) are characterised by the presence of chronic motor and phonic tics, with onset during the developmental period. A recent meta-analysis suggested that the prevalence is around 118 cases of TS per million adults (Levine et al., 2019). Recently, a small body of literature has emerged reporting the experience of TS as multidimensional, relating to self-identity threat, social withdrawal, self-stigma, social support, and pain management (Malli et al., 2019; Perkins et al., 2020; Taylor et al., 2022). Comprehensive Behavioural Intervention for Tics (CBIT) is a well-established treatment for children and adults (McGuire et al., 2014; Piacentini et al., 2010; Pringsheim et al., 2019). However, no study to our knowledge, focuses on experiences through the CBIT pathway.
Aims
The study aims to explore the process by which adult participants with TS/TD make sense of their experiences moving through a CBIT treatment pathway, developing an insight into their unique perceptions, understanding, and impact on their lives.Methods
A qualitative approach will be employed in the form of interpretative phenomenological analysis (IPA). We will aim to recruit approximately eight individuals who have been medically diagnosed. Participants will need to have either completed the CBIT pathway or attended a minimum of three sessions. Semi-structured, one-to-one interviews will be conducted.Practical Applications
This study will provide a greater understanding of CBIT with the aim of creating a positive impact on guidance for improving patient experiences and care provisions.REC name
London - Hampstead Research Ethics Committee
REC reference
24/PR/0388
Date of REC Opinion
30 Apr 2024
REC opinion
Further Information Favourable Opinion