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A major research study will provide the first detailed insights into the experiences of young people with Tourette syndrome.
The study, led by The University of Nottingham and national charity Tourettes Action, will explore the day-to-day lives of young people at secondary school who are affected by the condition.
Researchers in the Division of Psychiatry and the School of Education will build up a detailed picture of how Tourette syndrome affects their relationships with peers and teachers, their academic work, personal development and other issues — with the aim of developing better methods of support and improving their experience of secondary school.
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The three-year project is being funded with a grant of £335,751 from The Big Lottery Fund.
Tourette syndrome (TS) is an inherited neurological condition that affects one school child in every hundred. The key feature of TS is tics — involuntary and uncontrollable sounds and movements.
Young people with TS are at risk of being less well adjusted than other teens. While research with this group has been limited up until now, work carried out to date suggests these young people can have social difficulties, such as problems making and maintaining friendships, and experience emotional problems such as depression and anxiety. These negative impacts are avoidable.
Across the UK as a whole, TS affects more than 300,000 children and adults.
The University of Nottingham research team is led by Georgina Jackson, Professor of Cognitive Neuropsychology, in the Division of Psychiatry.
Professor Jackson said: “Tourette syndrome is a complex disorder that is not well understood, and parents of children with TS worry that the school experience is a negative one. In this project, we want to get the perspective of young people themselves on secondary school life.
“We want to develop ways to improve the secondary school experience for teenagers with TS, and we will be using our findings to develop a Tourette syndrome training package for schools and a training course for teachers. We also plan to share our findings with clinicians, researchers and other professionals who are interested in Tourette syndrome.”
Around 70 young people with TS, aged between 10 and 20, will take part in the research. In addition, 35 secondary schools will be involved. The research will employ a variety of methods and measures. In particular, interviews with young people, parents and teachers will provide the first detailed insights into the secondary school experiences of individuals with TS in the UK.
The project’s launch event at The University of Nottingham brought together young people with Tourette syndrome and their parents, along with other stakeholders including teachers, clinicians, researchers, and Stewart Jackson MP. Stewart Jackson has been granted an adjournment debate on Government policy on Tourette syndrome, which will take place on October 12.
The research team is currently looking for young people with TS, living in the East Midlands, who might be interested in taking part in the research. Please contact Linnea Larsson at Tourettes Action (Linnea@Tourettes-Action.Org.UK).
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Notes to editors: The University of Nottingham, described by The Times as Britain's “only truly global university”, has award-winning campuses in the United Kingdom, China and Malaysia. It is ranked in the UK's Top 10 and the World's Top 75 universities by the Shanghai Jiao Tong (SJTU) and the QS World University Rankings.
The University is committed to providing a truly international education for its 39,000 students, producing world-leading research and benefiting the communities around its campuses in the UK and Asia.
More than 90 per cent of research at The University of Nottingham is of international quality, according to the most recent Research Assessment Exercise, with almost 60 per cent of all research defined as ‘world-leading’ or ‘internationally excellent’. Research Fortnight analysis of RAE 2008 ranked the University 7th in the UK by research power.
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