Perceptions of treatment for tics among young people and their parents

Posted on 16 March 2015

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This study explored perceptions of treatments for tics among young people with TS and their parents.

Researchers and experts in Tourette Syndrome have just released results of a study called ‘Perceptions of treatment for tics among young people with Tourette syndrome and their parents: a mixed methods study’. (Authors: José Cuenca, Cris Glazebrook, Tim Kendall, Tammy Hedderly, Isobel Heyman, Georgina Jackson,Tara Murphy, Hugh Rickards, Mary Robertson, Jeremy Stern, Penny Trayner and Chris Hollis)
The background of the study was the psychosocial difficulties that young people experience and the important role parents play in helping the management of the condition. Little is known about how young people and their parents perceive their treatment options or their desired outcomes of treatment. The aim of this study is to explore perceptions of treatments for tics among young people with TS and their parents. In-depth interviews were conducted with 42 young people with TS and a mixed-methods, online survey of 295 parents of young people with TS. Participant recruitment was conducted through Tourettes Action (TA): a non-profit UK organisation for the support of people with TS. Interview transcripts were analysed using thematic analysis and responses to survey open-ended questions were analysed using content analysis.
The results found a strong theme was the perception that health professionals have limited knowledge of TS and its treatment. Medication was a common treatment for tics and both young people and parents described benefits of medication. However, adverse effects were frequently described and these were a common reason for stopping medication among young people. Aripiprazole was viewed most positively. Access to behavioural interventions for tics was limited and 76% of parents wanted this treatment to be available for their child. Some young people had reservations about the effectiveness or practicality of behavioural interventions. Reduction and abolition of tics were desired outcomes of treatment, but both parents and young people also identified the importance of increasing control over tics and reducing anxiety-related symptoms. For young people, managing the urge to tic was an important outcome of treatment.
The results suggest a need for more training in the identification and management of TS and wider availability of behavioural treatments. Clinical trials could explore the effectiveness of Aripiprazole used in combination with psycho-educational interventions to reduce anxiety and promote a sense of control.
If you want to read the full article access is free here
Tourettes Action wants to help increase access to behavioural treatments for tics and TS and we have a list of specialist therapists who have training and expertise in delivering these treatments. Some of these therapists also can deliver treatments online via computer. Please contact Tourettes Action if you would like a copy of the behavioural therapist list sent to you
If you have received behavioural treatments and found them useful then please also contact Research Manager Seonaid Anderson with the name of your therapist as we can invite them to join the TA therapist list.

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