Wednesday 9th October 2019
Sarah Smith and Linda Falzarano are Youth Support Coordinators are based in University College Hospital's Teenage Cancer Trust unit. Ahead of World Mental Health Day, they spoke to us about the mental health challenges young people with cancer face and how they support young people's emotional wellbeing in their roles.
What challenges do young people with cancer face when it comes to their mental health?
Sarah: This topic is a huge one. The most obvious change is that being hospitalised or coming to hospital for treatment is far from their normal routine, and that alone can have a big impact. It’s not just their diagnosis that brings stress and worry – a young person worries about their family, education, finances and relationships.
Linda: And we often see a young person being very protective of their family and friends, not wanting to show that they’re struggling emotionally in front of them because they feel the cancer is burden enough. And then of course there’s the feeling of guilt, which many of our patients feel – guilt for putting their families through this.
Sarah: Friends can be a huge support to begin with, but cancer can be a long journey. If someone is in treatment for a year or so, friends might move on. They can feel very isolated.
Linda: Yes, timing can always be hard. If someone is diagnosed in the middle of their education or before they go to uni or start work, they can feel as if their life is moving on without them.
Sarah: And while social media can be really positive, it also adds to the pressures, especially when it comes to things like body image and life experiences. It’s not enough that they know they’re missing out, now they can see exactly what they’re missing out on.
How do Youth Support Coordinators support young people’s emotional wellbeing?
Sarah: We’re there for young people, whether it’s in a crisis moment like a panic attack, or if it’s for the more ongoing worries and anxieties. We’re reactive and stay flexible, because no two days or two patients will be the same. People can walk on egg shells around cancer patients, but I’ve found being honest works best - saying ‘Hey, you seem down at the moment’ is the most honest way of approaching what can be a tricky conversation.
Linda: It can be a bit of a guessing game – someone might want to talk and get it all off their chest, and others won’t right away.
Sarah: Some young people can have a physical reaction to coming to the ward for the first time, even before they start their treatment. Seeing other young people having treatment, or with visible signs of cancer like having no hair can be very overwhelming.
Linda: So it’s important to build that relationship with them, find out their interests and help build something that’s unique to them. That will always help them to feel able to talk.
Sarah: I find young people open up a lot easier when doing activities like puzzles, a game of pool, art, or painting their nails. I believe this is because there is no pressure to talk, and they don’t have to keep eye contact. Sometimes not having to look at someone when you’re opening up makes it easier.
Linda: But sometimes it’s also about realising if you’re not the person they’re most likely to open up to – and that’s ok. It’s not about me and my role, it’s about them and what they need. I’ll be led by them.
Sarah: Sometimes they might want to talk to someone of the same gender, or another staff member they’ve built up a rapport with.
Linda: It’s important to remember too that we’re seeing young people at the most intense part of their treatment – they might be very tired or feeling sick. And that might mean that talking about it all now would just be too overwhelming. They might open up more when they’re feeling better.
Sarah: When it comes to practical things, we run workshops and activities for young people on the unit, and try and encourage them to get out of their cubicles if they’re able so they can meet other people. This can really help young people feel connected and less isolated.
How does cancer affect a young person’s family and friends?
Linda: It affects the whole family dynamic. Parents are often separated from their partner and other children because they’re spending so much time in hospital. Siblings can feel neglected, or not understand what’s going on. And it can bring up memories of other family members who’ve had cancer, especially if they were very unwell or died.
Sarah: Parents sometimes say they wish they were going through it instead of their child, too. We can signpost parents to support through charities and organisations that can help them with practical things.
What everyday things can help a young person’s emotional wellbeing?
Sarah: It’s about normality, and trying to maintain that as much as possible. I’m not a nail technician, but I can paint someone’s nails if that makes them feel more like themselves!
Linda: Doing something nice for themselves every day.
Sarah: Even ordering a Domino’s pizza can feel like a treat, because they get to choose what they want at a time when so much else is out of their control.
Linda: Part of my budget goes on ice lollies! They help with physical symptoms of treatment as well as being something nice.
Sarah: We also make sure they’re covering the basics – are they eating, drinking and getting active if they’re well enough. We have a gym here which many patients find gives them some space and energy.
What further mental health support is available for young people?
Linda: We can refer any young person on our unit to the psychology team we have here. This can be really helpful space for them to open and talk about what’s happening for them.
Sarah: Sadly the waiting lists for our mental health support are long, because it’s a much-needed service. And sometimes if a young person wants to talk today, that might not be the case in a few weeks’ time.
Linda: We’re not mental health workers, and are not trained to give specialised psychological support, but sometimes we can help in the meantime by giving them our time. We’re there to listen sometimes, more than talk.
Sarah: We try to break down the stigma that goes with getting help for your mental health – in an ideal world every young person with cancer would have this support. It doesn’t mean they’re not coping, it means they’re dealing with something very difficult and it’s absolutely normal to need more support.
How do Youth Support Coordinators look after their own mental health?
Sarah: I think the biggest thing for me is the support we give each other, as well as the boundaries we have to set around our work and our personal lives. We also have clinical supervisions.
Linda: This job does change you, but how you grab life and live life changes with what our eyes see everyday. Our job is so focussed on others. But we have to practice what we preach, and make sure to make time for ourselves and what we enjoy too. Being around family and friends is important.