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2024 Research Studies
Summaries of research projects supported by Tourettes Action.
Research study seeking healthcare and education professionals supporting parents/children from ethnic minority groups with neurodevelopmental disorders
The research aims to understand the lived experience of families (parents/carers and young people) who are from an ethnic minority background and whose child has a diagnosed or possible neurodevelopmental disorder. We want to also explore the perceptions and experiences of health (e.g. GPs, mental health professionals, service managers) and education (e.g. teachers, special need co-ordinators) professionals in supporting these families. We hope that our findings will help us be better able to improve the way in which healthcare is delivered in the future.
Results of the study will follow soon
Professional’s experiences of working with children and young people diagnosed with functional tics
Researchers and Clinicians from University College London and Great Ormond Street Hospital recruited Healthcare professionals (registered with the relevant healthcare organisations/bodies) who have worked, or currently work, with children and young people diagnosed with functional tics. There has been a reported increase in young people experiencing functional tics yet there has not been much research into functional tics. Little is known about professionals experiences or working with children and young people living with functional tics. The study aims to qualitatively explore professionals experiences of working with this group of children and young people.
Results of the study will follow soon
Lived Experience of TS
Exploring the success of pharmacological vs art-based intervention
This study focused on the lived experiences of 18–25-year-old adults with TS including their self-identity and approaches to self-care. It investigated the economic and social pressures that individuals face due to their tics, including greater unemployment rates, more strain on social and familial relationships and avoidance of large public spaces.
Results of the study will follow soon
Understanding the expression of everyday vocal and motor tics in adults
A cross-disciplinary team from the University of Hertfordshire recruited adult participants with a confirmed diagnosis or self-identified as having a Chronic Tic Disorder (such as Tourette syndrome) to join an exploratory workshop. The workshop was a chance for researchers and participants to meet to co-propose how everyday tics may be captured in adults.
Results of the study will follow soon
Participants needed to help inform the development of a feature film
As a filmmaker with TS, Alanna has wanted to create a feature film about her experiences for a long time. Having identified that people with Tourette's are underrepresented in the media and often misunderstood, she is keen to do justice to not only her own story, but also to the wider Tourette's community. The research will help with script content and will be written with the consultation of members of the TS community, to ensure it respects the wishes and ideas within the community and portrays the syndrome accurately and authentically.
Click here to read a lay summary of the study findings
Self-stigma in Parents of Young People with Functional Neurological Disorders or Asthma
This study, from University of Oxford, hpes to identify whether stigma awareness and self-stigma is higher in parents of young people with FND than parents of young people with a physical health condition (asthma). It also aims to understand whether parents of young people with FND experience higher levels of emotional distress than the control group, and whether this is mediated by levels of self-stigma.
Results of the study will follow soon
Functional Tic-Like Behaviours: Towards an Understanding of Young Peoples' Experiences
This study will give young people a chance to share their story: the impact of the tics, what helps, and what doesn’t. Very little research on functional tics has focussed on young peoples’ actual experiences. By centring their voices, this study hopes to improve how doctors, teachers, and other adults understand and help young people, thereby raising awareness, reducing stigma, and enhancing support for functional tics.
Results of the study will follow soon
Online learning resource for GPs
This project from the University of Nottingham aimed to design an online intervention to improve GPs knowledge of tic disorders. Both healthcare professionals and families with tics report challenges in the care pathway for tics. Therefore, in order to meet the needs of people with tics as well as GPs accessing the resource, interviews about the experiences of healthcare from multiple perspectives will ensure the content is co-produced and relevant to all stakeholders.
Results of the study will follow soon
Diversity and Productivity
The Inclusion Initiative at The London School of Economics have been awarded £2million by the Economics and Social Research council to investigate the relationship between Diversity and Productivity.
They are conducting interviews across banking & finance, professional services, technology, retail, manufacturing and public services to better understand what helps and hinders productivity in the workplace. Based on their findings from 200 people they seek to develop cost-effective interventions that can be tested and applied by firms to maximise diversity, inclusion and productivity.
Results of the study will follow soon
Sleep Traits in Tourette Syndrome
The project from University of Reading aims to investigate the potential relationships between morningness-eveningness (i.e.: chronotype/being more of a 'morning person' or more of an 'evening person'), delaying sleep (bedtime procrastination), rumination (overthinking), and traits within the Tourette Syndrome spectrum. Additionally, possible relationships with time spent using electronic devices, depression, sleep quality, and use of stimulants (caffeine, tobacco, or alcohol) will also be investigated.
Results of the study will follow soon
Tourette Syndrome and self-stigma
A research study examining internalisation, social support, self-esteem, and quality of life from the University of Liverpool. Online study exploring how negative public stigma affects self-stigma in people living with Tourette Syndrome.
Results of the study will follow soon
SATURN - Stimulant medication for ADHD and Tics – Understanding Response versus Non-stimulants
Researchers at the University of Nottingham are looking for participants for their latest project. The SATURN study will compare the stimulant medication usually prescribed for ADHD, with the non-stimulant medication usually prescribed for tics to identify the best treatment for children/young people with both ADHD and tics.
Results of the study will follow soon
