Last week I spoke to Evie, a super friendly researcher from the University of Hertfordshire who’s working on a project to learn more about how people with Tourettes experience food and mealtimes. I enjoyed speaking to Evie and I could immediately see how her project might help us better understand an area of Tourettes that hasn’t been looked into much. Evie’s looking for young people who are up for getting involved, so I invited her to write a guest post to introduce herself and the project, and let you know more. Over to Evie.

About Me

I’m Sandra-Eve Bamigbade, but I go by Evie. I’m working on a PhD in Food and Public Health, at the University of Hertfordshire. A fun fact about me is that I’m learning to roller-skate.

My Work

Did you know that eating is one of the daily habits most likely to be negatively affected by over- or under-responsiveness to certain smells, tastes, textures, sounds and temperatures, also known as sensory sensitivity? Despite research suggesting that up to 80% of people with Tourette’s Syndrome may have sensory sensitivities, the impact of this on their day-to-day lives is relatively unknown. Particularly in comparison with other groups known to have sensory sensitivities, for example Autism which currently seem to be more researched.

My research aims to fill this gap so that we can learn more about the mealtime experiences and eating behaviours of people with Tourettes. Do certain smells put you off your food? Do you dislike items of food touching each other? Does the sound of someone chewing make your skin crawl? Do you eat in a strategic way, for example one food-item at a time? I want to understand how people with Tourettes eat, and the factors that might impact on their mealtimes.

I also want to explore how tics shape these experiences. For example, is it hard to sit still at a table? Do you spill things regularly due to tics? Do you avoid eating out because you’re worried what other people might think of your tics? Does your medication affect your appetite? All of your experiences, both those I’ve mentioned and lots of things I don’t yet know about, are important.

Mealtimes are unavoidable, we all have to eat to survive and many social activities involve food, such as Christmas, birthday parties, cinema, dates etc. It’s important to understand more about mealtimes and the possible effect these experiences can have on our quality of life. I’m keen to understand this better and I need your help to find people who are up for being involved in this research.

Who can take part?
So far, most research on mealtimes relies solely on parents to explain the experience, but my study is different. I’m looking to talk directly to young people with Tourettes, or a Chronic Tic Disorder, who are aged 11-16 and live in the UK. This is a chance to have your say. I want to hear from you directly about your experiences.

If you’re a parent/caregiver I’d also like to hear from you: we’re planning a study that talks to parents and I’ll be sharing information about this parent study in due course.

What’s Involved
I have two studies for teens with Tourettes, and you can participate in one or both, it’s completely up to you.

Study One – Online Survey
The first study is an online survey. This survey includes a few questions that allow me to see what factors influence your mealtime experiences, if any. The factors I’m exploring include anxiety, sensory processing, tic severity and eating behaviours. The questionnaire takes approximately 30-40 minutes to complete. I’ve divided it into two parts, part A and part B, so that it is easy to take a break if you need to. All participants who complete the survey will be entered into a prize draw where one lucky winner can win a £25 Amazon voucher.

For more information on the survey, or to participate, visit this webpage.

Study Two – Online Interview
Study two is an online interview where we talk about your mealtime experiences. This allows me to understand what daily life is like for you. Interviews are simply conversations. We’ll have a chat over Zoom or Skype at a time and date that suits you best. Typically, interviews last around an hour, give or take 15 minutes. It all depends on how much you have to share with me. You’re able to end the interview at any time. If you’re interested in speaking with me contact the Touretteshero team and they will put you in touch.

To take part in either study you’ll need your parent/guardian to agree that they’re happy for you to take part. Do get in touch if you have any questions.

I enjoyed talking to Evie about this project and it was interesting to have an opportunity to think about an aspect of everyday life with Tourettes that I haven’t given much time to before. It’s always exciting to hear from researchers who are exploring aspects of our lived experiences in new ways.

Thanks to Evie for taking time to share her work with us. If you’re interested in helping with her study, please do follow the links for more information.