When we think of a nurse, many of us picture someone hands-on, caring for patients each day on the ward. But nursing is so much more than that - there are many types of nurses, each playing a vital role in supporting children and young people through cancer.
This week, we spoke to Helen Trower, a research nurse at the Weston Park Cancer Clinical Trials Centre in Sheffield who specialises in working with teenagers and young adults (TYAs) between the ages of 13 and 25. She told us a bit more about what it’s like working as a research nurse…
Helen Trower
How are research nurses different to ‘typical’ nurses?
In my experience, it's totally different. I worked for 15 years on the Teenage Cancer Unit here, which I have to say was the best job in the world. On the ward, you care for a set group of patients. You look after all their care, and you're there immediately for them as and when they need you.
I moved into research for family reasons and am really happy to now be back working with TYAs again. In research, you have a portfolio of research studies, so you’re looking after patients who are considering taking part in a trial, or who have agreed to participate in a trial.
There’s less personal care, though you may see patients in the clinic and sometimes follow up with them remotely. I lead research projects, identify patients who may like to participate in trials and check that they meet the required criteria, support them to make informed decisions about trial participation, go to clinical meetings to help find studies for patients, and try to raise the profile of research regionally and nationally.
Why do you like working with TYAs?
The TYA group covers patients who are at school, doing exams, starting jobs, going to university, getting married, and having families. There are so many milestones in that time that make TYAs very different from older adults.
They're leaving childhood behind and becoming adults - then you throw in the diagnosis of cancer. It can impact education, university, jobs, future fertility, just so many different parts of life.
You’ve been working in the TYA cancer field for over 15 years - what have you seen change over that time?
I’ve seen the care for side effects change and improve, and outpatient treatment options becoming available to keep more patients out of hospital. But the main thing is that the cancer treatments have changed so much over the years.
The explosion of treatments is massive. There are so many different treatments, new immunotherapies and chemotherapies. I could probably name most of the chemotherapies I would give when I started, but now I wouldn't have a chance. There are so many, and that's all thanks to research.
Was the research nurse role created because of this explosion of research and treatments?
There have always been research nurses here, as far as I can remember. The Clinical Trial Centre has been here for 20 years or so. But there was research before that, because I know some research nurses who worked on Trastuzumab (Herceptin) years ago, back when that first found its way into standard use. To bring in a new treatment as standard of care, it's got to go through various stages of regulated clinical trials, and that takes a long time.
I imagine you can’t wait to see some of the trials you work on lead to treatments! What challenges do you face when trying to get young people involved in research?
The main issue is that there is not much research open to TYAs - studies are often for 18-plus, or for children’s cancer types. The more adult-like cancers that young people get may not have been studied, especially when you get into relapsed versus refractory cancer and subtypes. That’s why I hope, in the future, to see more studies opening for young people.
There are also practical issues like geography, because taking part in clinical research can involve more travel. It might be that patients have to go to centres elsewhere in the country, have more visits, or spend longer at the hospital.
Do you struggle to get TYAs interested in joining clinical trials?
TYAs can be incredibly keen to participate and also desperate to have any chance of a cure. Before I worked in research, I didn't understand the complexities of getting onto a clinical trial.
But you've got to meet criteria to get onto a trial, so that the researchers can show whether a treatment actually works. I didn't understand that at the time, and it’s still heartbreaking sometimes.
That must be tough to deal with. What keeps you going?
I just love working with young people. When you're looking after TYAs, you are also looking after their parents, their children - there’s so much variation. I know the difference that research can make for them, so it is very rewarding to be a part of that.
What is the most important thing for professionals to remember when they're working with young people with cancer?
Get to know the person and not just the patient or their diagnosis. Young people have so many issues to deal with in addition to their condition, and understanding their emotional as well as physical needs can make all the difference. Take the time to explain what is happening and listen!
Remember, they’re more than their diagnosis – so please, be gentle with them and support them as much as you can.
Ellie Ellicott is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters. You can find Ellie on X: @EllieW_CCLG
