The diagnostic and therapeutic journey of Tourette syndrome: Thematic analysis of the difficulties experienced by parents of patients.

OBJECTIVE

The aim of this thematic analysis is to formalize the parental trajectories of therapeutic wandering, from first symptoms to the diagnosis until disease management.

METHODS

An inductive and deductive thematic analysis was carried out based on 25 interviews with parents of children with TS. Statistical and association tests were also conducted.

RESULTS

From the interviews with parents, 284 codes were categorized into 19 inductive subthemes, which were then grouped into 5 deductive themes. Some of the subthemes were relevant to all interviewees, and ranged from the description of the disease characteristics, parental distress, the impact of the TS diagnosis, and the evaluation of the diagnostic journey.

CONCLUSION

Our study sheds light on how the parents of children with TS experience the diagnostic and therapeutic journey. By highlighting recurrent themes experienced by families, we hope that the results will be beneficial to both parents and children with TS in avoiding future diagnostic and therapeutic delay.