Using Online Support Communities for Tourette Syndrome and Tic Disorders

Posted on 25 May 2021 by Pippa McClounan

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Researchers at the University of Nottingham publish results of an online survey exploring users’ experiences of using online support groups for tic disorders and Tourette syndrome

**Please note: This study took place in 2019, prior to the COVID-19 pandemic and relates to asynchronous online support, such as pages typically found on Facebook. It does not refer to organised online support groups meeting virtually 'face-to-face' on Zoom.**

Click here to watch a short video summary of the study

Tic disorders, such as Tourette syndrome, are neurodevelopmental conditions characterised by ‘tics’ – involuntary, uncontrollable movements and sounds. Tic disorders usually appear during childhood and affect approx. 1 in 100 schoolchildren in the UK. Tics are quite visible to others, often leading to negative comments, rejection and stigma – understandably having a big psychological impact on a person, but also their families too. There is no cure for tics, with medication and behavioural therapy being two treatments used to help manage tics.

As with many long-lasting health conditions, many patients and their families have to manage tics by themselves. Something that can help with this is talking to people who have been through similar situations, but it can be tricky to find people like this near you. Online support groups – such as groups on Facebook - are one way to find and connect similar others, and previous research has found they have been helpful for people experiencing a range of chronic health conditions.

In this study, we designed and shared an online survey to look at the experiences of using online support groups for tic disorders – as this had not been looked at before. We advertised this online survey in four online communities for tic disorders, and also shared it on Twitter and Facebook through Tourettes Action. The 90 people who completed the survey were presented with six questions about their reason for using online communities, what benefits and drawbacks they’d experienced from using them, and whether it had any effect on how they managed tics. They could type as much or as little as they wanted to.

The 90 respondents were mostly people who had a tic disorder themselves, but also included caregivers of children with tics. Many findings came out through looking at their answers to the six questions. As expected, many liked using online groups because they’re easy and convenient to access – particularly when there’s a lack of local support groups or struggle to attend face-to-face groups. Many respondents mentioned the information and advice they were given in online groups was more helpful than what they’d been told from healthcare professionals, and helped their understanding and management of tics, and how to explain tics to other people. Respondents’ answers also emphasised the emotional support they got from online support groups: it provided a space where they could speak openly and non-judgementally about the emotional reality of living with tics to peers who really understood what it was like – which was seen to help their longstanding sense of social isolation they experienced in the ‘offline’ world.

Participants also mentioned reading others’ experiences provided some hope for their future – that they’d be able to live happy lives despite tics.

Several drawbacks of online support groups were mentioned: this included trying to figure out the truthfulness of all the information shared online, and the suggestible nature of tics was a ‘double-edged sword’ as reading about others’ tic-related experiences resulted in a short-term increase in tics. Some participants also mentioned some ‘conflict’ between the two types of users: those who had a tic disorder, and parents of a child with tics. And as with any online group, unfriendliness and harassment was reported.

Overall, the 90 people who completed the online survey reported online support groups to be a highly valuable resource for living with tics. Online groups can help people overcome the isolation often reported by people with tic disorders, providing helpful tried-and-tested tips for coping with the physical and emotional nature of tics. Using online support groups for tics is not without some drawbacks, but are an accessible resource that could be promoted to people living with tics and their families too.

You can read the full study, which has been published online: https://www.jmir.org/2020/11/e18099/

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