“Your child has cancer.” Being confronted with a child’s serious illness – particularly a disease as devastating as cancer – is any parent’s worst nightmare, and going through diagnosis, treatment, recovery and sometimes bereavement is heartbreaking.
But there’s a team at UNSW that is helping families find their way, and a woman at its centre who has dedicated her life to helping sick children.
“Working with children who are seriously ill and improving their families’ wellbeing has been a theme across my career,” says Professor Claire Wakefield from UNSW Medicine’s Behavioural Sciences Unit.
“I always wanted to work in a healthcare setting – I’ve worked at an autistic school, a brain injury respite service, I have conducted research into children with legal blindness, and I spent ten years working at a hereditary cancer centre – all before I started at the Behavioural Sciences Unit here at UNSW.”
Since Professor Wakefield joined in 2008, the team has grown from just her to a group of 35 staff of psycho-oncology professionals, exercise physiologists, dietitians, social workers and bereavement counsellors who work alongside the medical team to help the families of sick children, often children with cancer.
“We do that in all sorts of creative ways, driven largely by what families tell us would make the experience better for them,” Professor Wakefield says.
“We try to find ways to build resilience in children, improve family well-being, make sure children have a healthy lifestyle when they finish their cancer treatment, help families to find meaning again if their child dies, and find ways for the systems, medicines and technologies that we use to think about the child first and the family first.”
Listening to what families really need
With 35 specialist staff, there’s always a lot going on.
One project the team is really excited about at the moment is PRISM, a large precision medicine programme that aims to find the right treatment for every child with a high-risk cancer.
“We're running the quality of life sub-study of PRISM – so we’re asking patients and families, ‘What's it like to be offered this testing? What could we do better in delivering the results? What did you feel if the results weren't helpful for you? Did you then regret participating?’ We're actually using the answers to the questions to improve the trial as we go.”
Professor Wakefield hopes that then when precision medicine becomes standard care in the future, the team will know how to deliver it in a way that works for families.
Despite exciting projects like PRISM, Professor Wakefield says even more can be done to really find out what families need.
“The more that we listen to them, the more we can develop a system of care that suits families and takes their needs into account from the beginning. I think we have to be really careful about the excitement that we have around science and new drugs and new technologies and also think, what does this mean for the family? What does it mean for quality of life?”
Focusing on every activity’s purpose
No two days are the same when you’re on such a huge mission. These days, Professor Wakefield spends her days meeting with her team of direct reports (a group of talented early-career researchers), teaching and lecturing, writing, and giving talks.
“I don't think of myself as an organised person. I try and always focus on the purpose of what we're doing, and how's it going to be relevant for the eventual purpose of helping families find their way. And then I kind of organise my day accordingly,” say says.
“One of the things I love doing most is meeting with my team leaders – I invest lots of time in working with them. We think of new research ideas and studies that come out of what we are learning from families, and I’m also teaching them how to be new managers, and how to supervise people. Seeing them grow into independent leaders in the field gives me a lot of energy.”
Mentoring and coaching is a real passion of Professor Wakefield’s – she’s really invested in helping people find their strengths and confidence.
“That seems to be a real issue for young researchers – they realise how little they know, and sometimes focus on all of their limitations, rather than how much they've got to contribute.
“I spend a lot of time focusing on resilience, because there's a lot of rejection in research. I try and show them how I pick myself back up that when I get rejected.”
Finding joy and balance
When Professor Wakefield first moved into the field about 10 years ago, it was thought paediatric cancer was not genetic – now estimates say 10 – 15% of children with cancer might have a genetic predisposition to the disease.
“The families that have made the biggest impact on me recently are the ones who are going through the experience of having a child diagnosed with cancer, only to then find out that this is a potential genetic change that could follow through to other members of the family.
“It's not something that's common, but I'm really fascinated with how these families adjust to that – how they work out a new "normal" with the threat of cancers hanging over them.”
You’d imagine that working with sick children and their families for decades would take a toll on Claire, but she says the Kids Cancer Centre is a really happy place to work.
“Everyone's working towards improving the lives of families. Of course there are sad days, where something does not go as we would have hoped. But generally, I don't find it a difficult place to work.”
Making a difference here and abroad
Looking ahead, Professor Wakefield is looking to increase her impact outside of home: she’s part of the World Health Organisation’s Global Childhood Cancer Initiative, which is aiming to improve survival of children in low- and middle-income countries.
“It’s a real passion and future area of growth for me – the inequity there is astronomical. When we talk about 85% survival rate in Australia, that is ridiculously high compared to what's happening in other countries, where you're looking at only 5-10% of children surviving cancer.
“There are so many children with such high needs. We need to think about how the work we do here can be rolled out and adapted in creative ways for low-resource settings.”
That focus on helping those who might not have what they need – and doing an excellent and innovative job at it – is a big theme in Professor Wakefield’s career motivations.
“I think it comes back to that purpose around doing something that makes a difference. Research is sometimes quite slow, and it can take a long time before you see a difference. But one of the unique things about our group is we never just describe a problem in the field. We're pretty passionate about finding problems with families, and then at least having a go at improving them.”
Professor Wakefield’s other big motivator is striving for academic excellence.
“I get really excited about doing something that no one's ever done before. That gives me energy, from an intellectual perspective – if I can think of a new model or a new approach to something that other people haven't done, and then I can design a fantastic study to prove it, that's like the best thing since sliced bread!”