Lauren is an children’s oncology research nurse. She works at Alder Hey Children's Hospital in Liverpool. Her job is to look after young patients who are part of clinical trials and other research studies, and to support them and their families with the right information. Lauren also works hard to keep research in the minds of busy hospital staff!
Lauren Butler
How do you support children and their families in cancer research?
We’re involved in lots of types of research, from projects about quality of life to clinical trials looking at new treatments. Our job is to support children and families, often from the start of their cancer journey. I find it amazing that patients take part in research when they're going through something so big.
We make sure that everyone has all the information about research they can take part in, and that they understand it. We spend a lot of time supporting families with the clinical trials as they are the child’s main treatment. I love that we get to know them quite well over the course of their treatment.
We approach things differently depending on how well the family are processing information. Some people need more time, some like you to read it to them - we do whatever helps. It looks different for everyone.
Some families and children crack on and understand the trial better than us. But some people need us to check in more often to make sure it's still making sense. The questions often come as things start to settle down and become more routine, so we make sure they get their answers.
Another part of my role is making sure we don’t put our patients through extra tests or appointments. We work around things that are already planned, so the researchers get what they need with minimal distress to a child and their family.
What does a day look like as a research nurse?
We have an oncology research team meeting in the morning, and attend the meeting with the clinical team. We plan what we need to do for the day, like collecting samples, and looking for new patients. We also have to see whether anything has changed with any of our current patients. The trial needs to know if they've been admitted to hospital, or if they're seriously unwell.
We answer questions from families and help talk through families’ concerns about certain drugs. It can be problems like a child has never taken a tablet before, but the trial means the drug must be taken as a tablet. Whilst normally we might crush it to make it easier, we can't do that in a research trial. We have to try and figure out a way that works for everybody.
Clinical trials are an important part of treatment for some children – is that something you are involved in?
For the trials with new drugs, the consultants or researchers do most of conversations with families.
But we often go in to see if families have any more questions. It’s important to find the right way of explaining things to different people. We have some young children as young as four or five who want to be involved - but you can’t just give them a boring trial booklet. So, it's about finding alternative ways like story books or videos. Some kids love that and really want to be involved and others don't.
What is the most rewarding part of your job?
A big part for me is seeing how resilient children actually are. We give them these treatments that are so hard to cope with, and they're still smiling and making us laugh. It’s such a reward to be able to be a part of their little lives.
Sometimes we don't give them credit for how much they take on. I had a little boy who was only six the other day, pronouncing the chemotherapy he was getting better than me. He also wanted to know about how it works and the cell cycle - he was just so interested in it!
I love seeing patients improve as well. When they first come to us, they can be very sick. Seeing them start going back to school and going out with their friends is amazing.
It must be lovely to build relationships with families.
Definitely! I love taking time to be able to sit and chat to people and get to know them. We have a great trial at the moment looking at quality of life questionnaires for children with cancer. It’s being led by a nurse and we're looking into how we can improve the questionnaires.
I’ve been able to sit down with the children and their loved ones and talk to them about what's important to them. It’s rare to be able to sit and have long conversations with families about how they feel. We've had a few teenagers take part who didn’t say much to start with, but slowly opened up and made some really interesting points.
How did you become a childhood cancer research nurse?
When I was younger, I wanted to be a graphic designer – not a nurse! But I volunteered for a first aid organisation with my friend, and I loved it. A few years later, I decided to do nursing.
I worked in adult cardiac theatres in my first job, but I helped out in children's theatre and loved it. I found out I could work on paediatric intensive care with my adult nurse qualifications. I got a job there and it was perfect for me.
Lauren working during the COVID-19 pandemic.
Then I saw research nursing – before that I didn't think that research was a thing nurses could do. At nursing school, you do hear about research, but more as statistics and analysis, rather than something nurses can be involved in.
When I left university, I saw that there were nurses doing their own research, and other allied health professionals too. I was so happy to find out that nurses can do research!
As time goes on, nurses and allied health professionals are getting more and more involved in leading their own trials - it's really exciting.
I got a job as an adult research nurse, and then moved to Liverpool after the pandemic and started working with children at Alder Hey. I’ve only been here around a year and a half, but I'm loving it.
Having nurses involved in research as well as doctors must be beneficial for patients?
We do have different skill sets and different perspectives on what might be important to patients. The drugs trials are so important, but I love working on research where I get to talk to patients about what's important to them.
Patient-led research is such a growing focus – it’s great to see their needs being prioritised!
It's amazing seeing more and more patient-focused research happening. It's so interesting what people's priorities are when you chat to them. One thing I've found from talking to families is that children often mature so much over their cancer treatment. Cancer changes their outlook on life, and talking to them about it is fascinating.
Is being a children's cancer research nurse different to adults?
I've worked in both, and a lot more children are treated through clinical trials than adults. But when you approach an adult to take part in a research trial, it's their own choice whether to take part.
Asking a carer or a parent to make the same decision for a young child is really difficult. They're making a choice to take part in this trial, but they don't know how it could impact their child’s future. It's so different to adults who make a decision for themselves.
All these families powering through and still taking the time to think about research for their children - it's just amazing. I think that's the main difference I've seen.
When I started, I was thinking, ‘how can I possibly approach this family to ask about research right now?’. But they really do want to hear about it, and to support the advancement of the treatments we have now.
What are the most exciting breakthroughs in childhood cancer research that you've seen?
I'm really excited by the breakthroughs that we're having in whole genome sequencing. It could end changing how we treat cancer, and I just think that's incredible.
The survival rates for leukaemia blew my mind when I started in cancer research.
I think that the difference that research has made since the 1960s is absolutely unbelievable. I think now 88% of children with leukaemia survive - in the 60s it was a really bad diagnosis to get. And that's all down to the clinical trials that we've been running back-to-back.
Research is also improving quality of life and personalising treatment. I think it’s massive breakthrough that we are thinking about how patients will go on to live their lives as adults, and how cancer will impact them.
What do families think of your role, and is there anything you wish they knew?
I think families are so overwhelmed when they first meet us. We normally rock up at the start of their treatment when they're meeting so many new people anyway. It's later on that they actually learn what we do.
One thing I really want families to know, is that there's no pressure from us at all to take part in research.
I sometimes worry that they feel they have to do it, or feel guilty if they say no. There's no pressure at all - we can't imagine how much energy it takes to go through what they're going through and to still talk to us. We appreciate every little thing. I love that some families look forward to telling their child when they're older that they took part and are helping to change the future.
I wish everyone knew how fantastic our patients are, and how much we appreciate the extra samples and time they give us. I think we should tell them that more.
Lauren with her team.
What would you tell people who are interested in being a research nurse?
I think go for it! Coming into research is fascinating and you can explore why we're doing what we're doing. If you're the kind of person who is interested in why we do things, I would definitely give it a try. You can see the impact clinical research has on practice, and the papers that you worked on getting published. It's mind-blowing for someone who thinks like me to see it happen.
Read next: What recent progress has there been in childhood cancer research?
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