1. Jones, Amy1; Anderson, S2; Murphy, T1 and Martino, D3.
Users’ views on psychoeducation for individuals with Tourette Syndrome and tic disorders
Jones, Amy1; Anderson, S2; Murphy, T1 and Martino, D3.
1. Great Ormond Street Hospital, 2. Tourettes Action, 3. Kings College Hospital
Figure 2. Summary of thematic analysis of focus groups
Introduction
Tourette syndrome (TS) and chronic tic disorder are conditions characterised by motor and phonic tics, typically starting in early childhood. Psychoeducation is recommended as an essential component of any treatment package for TS 1, 2. Studies indicate that educational information enhances knowledge and attitudes towards individuals with TS, and improves how individuals with TS perceive the condition 1, 3. It is suggested that studies are needed to investigate the optimal method of offering educational information and what themes it should encompass1.
Results
Feedback from the online survey demonstrates that 61% respondents (n=166) felt they had not received adequate information on TS from health professionals. Respondents wanted information on alternative treatments for tics, why tics change over time, and the hereditary nature of tics. 71% (n=123) reported a need for educational support on TS in a format that they could use at home. Qualitative data from the survey highlighted that individuals need more information on comorbid difficulties associated with TS e.g. anger, low mood and anxiety. A need to enhance the knowledge of educational professionals was highlighted, as was the need to correct public misconceptions.
Feedback from focus groups highlighted the need for information for education and health professionals, and that reliable, accessible information is needed at the point of diagnosis. Findings support existing literature which states that many patients do not receive adequate information 4, and that psychoeducation represents an important component in providing support and enhancing knowledge in TS 4. Participants reported that an online psychoeducational resource would be beneficial, specifically one which outlines treatment options and coping strategies, while also giving advice and personal stories of TS.
Coding Categories
Preliminary Thoughts
Information sharing
“Some kind of resource that I could approach the school with”
“I would like to have leaflets you could print and hand out for friends and grown-ups”
Personal stories
“A real personal account of this is what it feels like to live with Tourettes”
“To hear from someone else saying ‘that really helped me’ and ‘that really didn’t help”
“It would have helped me to have known that I was not the only person in the world out there”
Variety of mediums
“Fun stuff – test your knowledge about tics quiz, tics word search”
“A web interface where you can ask questions and someone would actually come back to you”
Coping strategies
“A coping strategy page of what people have found has worked for them”
“Something like a step-by-step guide to living with Tourettes”
Treatment options
“Medication”
“Habit Reversal”
“Mindfulness”
Research Aims
The objective of this study was to identify the views of service users regarding optimal information about TS.
Method
An online survey (n=247), facilitated by Tourettes Action, was used to explore the needs of patients and parents regarding psychoeducation on TS and tic disorders. Five focus groups (n=14) were facilitated with children, adolescents, adults and parents of those with TS to obtain direct feedback about information that individuals believe would be of benefit to them. Participants were recruited from survey responses and service users of the Great Ormond Street Tourette Syndrome Clinic. Focus groups were recorded, transcribed and analysed using a thematic approach.
Conclusion
The results support the need for a new educational programme, developed and informed by people with TS and tailored to their needs.
Acknowledgments
Many thanks to Tourettes Action for developing the online survey and assisting with recruitment; and to participants for generously giving up their time.
References
1. Nussey C. et al., Does it help to talk about tics? An evaluation of a classroom presentation about Tourette Syndrome, Child and Adolescent Mental Health 19: 31-38, 2014
2. Verdellen, C. et al., European clinical guidelines for Tourette Syndrome and other tic disorders. Part III: behavioural and psychosocial interventions, European Child Adolescent Psychiatry 20: , 2011
3. Nussey C. et al., How does psychoeducation help? A review of the effects of providing information about Tourette Syndrome and attention-deficit/hyperactivity disorder, Child: care, health and development 39: , 2013
4. Cath D. et al., European clinical guidelines for Tourette Syndrome and other tic disorders. Part I: assessment, European Child Adolescent Psychiatry 20: , 2011