The Importance of Peer Support

Posted Thu 20th Oct 2016 at 13:28
by Tracey Francis

Share

Tracey Francis is a freelance writer and researcher with a particular interest in improving the chances and life choices available to young people who face barriers to inclusion. She was awarded a Travel Fellowship by the Winston Churchill Memorial Trust to explore the experiences of young people with Tourettes, Asperger’s Syndrome or ADHD in Italy, Norway and the Czech Republic after they leave school. Her findings, taken from conversations with 50 young people and/or their family members, are the basis of a new report offering practical insights and recommendations to improve the experiences of this group as they make the transition to adulthood. For full details of the project, or to download a copy of the final report, visit www.lifeontheedgeofthecliff.com

Time and again, in country after country, the response from young adults living with Tourette’s was the same. One of their biggest challenges, they say, is lack of awareness and understanding among the people around them.

It starts early: families talked first about the struggle to find an explanation for what they were experiencing. Then, all too often, about the fight for a diagnosis that reflects the full impact on their daily living and activities. Finally, young people spoke about the support they need to make the most of educational, work and social opportunities, and to build the life they want.

Professionals often have limited experience of Tourette’s, and undoubtedly a lot more research is needed to plug the knowledge gaps and answer questions both about the condition itself, and how it sits in relation to other neurological and psychiatric conditions.

But in the meantime, young people who continue to be affected into adulthood need to get on with their lives. And for many, that’s where peer support is absolutely indispensable.

Nothing breaks down barriers, builds confidence or provides reassurance better than connecting with others who share some of the same issues. Whether it’s sharing information, suggesting strategies or just providing a listening ear, peer groups can help young people and families tackle problems and celebrate successes. They don’t judge, they do understand, and they don’t underplay – or overplay – the issues. Most importantly, they’re highly likely to accept you just as you are.

The young adults I spoke to were all used to living with and managing their tics, but many had found the challenges of suppressing them in a work or study situation led to significantly increased physical or mental pressure.

“Tourette’s is a very tiring condition, it can be very hard on your body,” says Jan-Erling Haugsand, father of a 16-year-old with Tourette’s and leader of the parents’ organisation for Tourette’s in Sør- and Nord-Trondelag in central Norway. He provides information and support to parents and teachers, and has worked with school leavers beginning to learn an occupation. “You have to have an employer that gives you a lot of flexibility, and that’s really difficult.”

Getting the right information can be crucial in helping others understand the adjustments that may make the difference between succeeding or struggling in work or education. Peer groups can often be the best source of up-to-date, relevant knowledge, both on entitlements and practical strategies. They play a key role in encouraging and motivating young people to try new ideas and approaches, and can go a long way towards combating social isolation – essential to maintaining good mental health.

“I think personally I have Tourette’s Syndrome relatively well under control, therefore it doesn’t limit me strongly,” says Petr, 28. “But of course, when it was worse, primarily at a younger age, there were many doubts about myself and concerns for the future.”

Petr is attending a twice-yearly group run by ATOS, the Czech organisation for people with Tourette’s, in Prague. People come from all over the Czech Republic to attend, as well as from neighbouring Slovakia, where there is currently no patient organisation. For some, it’s a 10-hour round trip. Adriana, 24, looks astonished when I ask if it’s worth it.

“Of course,” she says. She lives in a small rural town where the family doctor has little experience of tics, and virtually all of her knowledge thus far has come through the internet. This is the first opportunity she has had to meet people of her own age who are similarly affected. “It’s really great to be here and to meet with other people. I find other people have the same experiences as me.”

Adriana has a job fielding customer enquiries, but although she finds the work boring she feels she is lucky to be in employment and isn’t sure what other options might be available given her Tourette’s. The group offers her the chance to hear what others are doing, make new contacts, and build her confidence to prepare and plan for the future.

“When someone has very noticeable or disruptive tics, it’s difficult to find a job,” says Oskar, now in his mid thirties. “If you’re educated and a lawyer it’s fine, you can sit at a computer or something, you’ll be OK. But if your education is not very high and you are surrounded by people whose education is not high you will have a more difficult time.”

Between meetings the ATOS group remains in contact online and offers support by telephone or email from volunteers who have experience of living with Tourette’s themselves or in their families.

Sharing experiences can offer significant social, emotional and practical benefits when young people are navigating the first steps into the less structured, more challenging adult world. When parents are no longer on hand, or where a young adult simply doesn’t want mum or dad to play such an active role in their lives, effective peer support can be invaluable.

There are no hard and fast rules, and support can take many forms. It was clear young people very much enjoyed social contact – just going for a drink, or to watch a film or a football match together, can sometimes be enough. But where this wasn’t possible, for example because of geography or maybe low energy levels getting in the way of leisure activities, Facebook or Skype groups have been very successful in giving people the chance to connect with others.

In college or university, peer support groups can often be arranged and promoted by disability inclusion officers or equivalent members of staff. In the workplace or wider community they can be less easy to access, although support agencies and charities may be aware of local groups in operation. It’s generally perfectly OK to begin a group yourself by reaching out to other interested people, maybe by advertising online or through a local library or doctor’s surgery – although it’s important to take health and safety considerations into account, so involving a support worker or other professional can be a wise idea.

Every group benefits from having a nominated coordinator as a central point of contact, but beyond this the best groups are those whose members shape and direct their activities. The one caveat young people made was that someone should be responsible for keeping track of group members, so no one could “disappear” without it being noticed. Some groups have a much greater degree of formality, for example inviting expert speakers to talk on specific topics or to lead a Q&A session, while others share more informally and make a point of cooking and eating together.

Every member of the group, not only the extroverts, should have the chance for their voice to be heard, and to have their questions and concerns addressed. It’s important, too, for people to be able to offer support as well as receive it. There’s something empowering about having the chance to share your own knowledge and experience with others: it’s not good for anyone always to feel they are the ones in need of “help”. Recognising the value of what you’ve learned and achieved is important in building confidence and self esteem, and peer groups are very much a two-way street. The process of giving as well as receiving represents an essential step on the way to independent living as young people move towards adulthood.

And of course, peer support isn’t always about groups. Identifying a mentor or buddy can work well, particularly in higher education settings, but also where possible in the workplace or local community.

Building relationships, understanding and acceptance among friends who do not have Tourette’s is a vital part of social integration and inclusion, but when it comes to raising awareness and tackling prejudice on a wider scale there can be an added strength in linking with others who share your experiences.

Even young people who felt well supported by family and other friends felt there was still a particular benefit in being in contact with others living with the same challenges. For those who do not have the same good quality relationships, or who are finding their feet in a new and unfamiliar setting, the backing and support of a peer group can be the difference between merely surviving, and beginning to thrive.

NB: Names have been changed

Tourettes Action Support Groups & Befriending
If you are interested in the growing network of support groups Tourettes Action has in England, Wales and Northern Ireland and would like to meet others for support, information sharing and friendship please ask us about finding out more information.

Helpdesk telephone: 0300 777 8427
Helpdesk email: help@tourettes-action.org.uk

Return to blog