Being a Research participant: A child and Parent's view.

Posted Tue 19th Dec 2017 at 13:01
by Calum and Michelle Gibson

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Calum took part in 'a naturalistic study investigating sleep and cognitive learning in children with and without sleep disorders' run by the University of Nottingham. Calum talks first about his experience, followed by his mum Michelle. They hope by reading this you'll be inspired to get involved with research too!

What’s your name

Calum

How old are you?

12

How long since you got diagnosed with Tourette Syndrome?
Almost 2 years, but I've had tics for about 5 years.

Which research project did you take part in?

It was a sleep study.

Did you have to go somewhere to take part? A university or a clinic?

No, a lady came to our house.

Can you tell us what it was like when you went to take part? 
When she came to our house she asked me some questions and played some games with me eg a memory game. Some were simple and some were more difficult but they were fun overall.

Did you meet the researchers? Did you get taken somewhere like a scanner or a clinic room?
I met a researcher called Charlotte, she was really nice. I didn't have to go anywhere special to take part.

Did you have any activities to do? Did you have any scans or use any equipment?
I had to wear a special watch for 2 weeks and on one day I had to use an ipad to complete some games before bed and again when I woke up in the morning.

How long did it last roughly? How many times did you go?
The study took two weeks, but Charlotte only visited us once.

Did any researchers ask you or your parents questions?
Yes we were given a questionnaire to fill out and she asked some questions verbally about my tics and how they make me feel.

Was there anything you didn’t like to too much about it? (for example going into a scanner, being asked lots of questions, taking a long time?)

No, there was nothing I didn't like.

What were the bits you liked?

The ipad games were fun. (I also was given a £10 Amazon gift card for taking part which made me happy!)

What would you say to someone else thinking about joining in a research project like you did? (would you recommend doing it to other people?)

Yes I would recommend it to other people as it is helpful in finding out more about Tourettes and I liked feeling that I had helped with research.

Mum Michelle, gives her perspective: 

Calum took part in a sleep study in October 2016 (about 7 months after he was diagnosed). We were told it was 'A naturalistic study investigating sleep and cognitive learning in children with and without sleep disorders'.

Taking part in the study was very straightforward; initially we were contacted by email by Charlotte, the trainee clinical psychologist who would come out to visit us. We were given plenty of information about the study before we decided to go ahead, explaining why the research was being carried out and what would be required of Calum. We were also given the option to withdraw from the study at any time should we choose to. We talked to Calum about why research is important in finding out more about TS and he was eager to get involved.

The home visit was organised for a time that suited us and took less than 2 hours. Charlotte first spoke to Calum and I together, then asked me to complete some questionnaires about Calum's tics and mood while she carried out some ipad games with him. She set up the watch Calum was to wear night and day for two weeks and explained he would need to press a button on the watch just before he fell asleep. She also showed him how to access the special games he would need to play on the ipad for 30 minutes before bed and on waking the next day on just one occasion during the 2 weeks. She gave me a sleep diary to complete for him each day.

At the end of the study we were emailed details of how to return the watch, ipad and sleep diary by post and once they had been returned, Calum received a £10 Amazon voucher as a thank you, which he was really pleased with! The whole experience was a positive one and we would definitely be keen to get involved again.

If you would like to take part in research, you can join our Research Participant Registry which is a voluntary database of individuals willing to consider participating in research studies. This would allow TA to contact you about studies that might be of interest to you.

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