Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences

Posted on 7 October 2024 by Pippa McClounan

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A summary of a recent research study supported by TA

Ella Ford &  Dr Bethan Davies, School of Medicine, University of Nottingham

People living with tics or Tourette syndrome, and their parents or carers, may use online support groups. These can be hosted on social networks – such as groups on Facebook, communities on Reddit – and on instant messaging-type services, such as on Discord servers. They can be a place to meet other people with tics who have similar experiences and challenges.

In 2019, we conducted a study with users of these online groups. Participants reported they felt more ‘empowered’ in healthcare appointments through using groups. 'Empowerment' is a process of gaining more control over your life. This includes being able to make decisions relating to your health. People with long-term conditions, like tics, can develop empowerment to help manage their condition. This can be done by increasing their confidence and skills in living with tics. As well as to improve their ability to back themselves when making healthcare-related decisions.

Following this study, we wanted to explore this further. In 2022, we asked people with tics who used online support groups about tics to complete an online survey. This survey asked questions about how using these groups helped them manage their tics. This included asking them about healthcare interactions, and decisions about whether to try treatments for tics. Participants typed their answers with as little or as much information as they wanted. We then analysed these answers to find patterns in their responses.

Thirty-nine people with tics completed our survey. From their answers, we found empowerment processes happening in groups. These included exchanging emotional support and information. They felt recognized through connecting with people they related to.

Participants reported positive outcomes relating to these processes. Some outcomes were about increased confidence in engaging with healthcare workers. They felt they better understood what 'language' to use, and the information given to them. They said they were more confident about deciding whether to have treatment. In addition, they felt groups helped them accept and ‘come to terms’ with their tics.

However, some people felt less confident about healthcare and interacting with healthcare workers. They reported reading about others’ negative experiences and the lack of help available added to this. Some respondents felt concerned about sharing information learnt from groups with their healthcare teams, or that they used them at all. They felt that they could be misread or judged for this.

We hope our study's findings can help people with tics and their families. Our study adds to a better idea of how people with tics can use online support groups. The study could help people working in healthcare to understand the positives of online peer support. We suggest using groups as part of the wider ‘toolkit’ for managing tics. 

We have now submitted the full study for publication in an academic journal – this can be read here.

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