During and after cancer treatment, the recovery of the mind is just as important as what goes on in the body.
When families think about cancer treatment for children, they first imagine its physical effects. There are the deadly effects of the cancer itself as well as the damaging side-effects of the therapies.
However, for a long time the medical community has also appreciated the powerful effect of caring for emotional well-being throughout and following treatment, not only for the patient but also for their family.
Claire Wakefield, a Professor in the School of Women’s and Children’s Health at UNSW and Head of the Behavioural Sciences Unit of the Kids Cancer Centre at Sydney Children's Hospital, has long been at the forefront of practice and research in this field.
Claire manages a team of 35 researchers working on mental health and behavioural projects that align closely with the needs of clinicians and families within the cancer treatment system.
“The core themes of the work of my team are around mental health in young people with serious illness, as well as education and schooling,” she explains. “We’re looking at cognitive outcomes and we do a lot of work around lifestyle, exercise and diet, and how to encourage young people to do things to reduce their risks.”
One of the group’s programs focuses on families and family systems, and impacts on parents, grandparents and siblings. Another looks at psychological impacts and ethics around genetic testing for cancer risk.
“We have to think carefully about what research to invest in,” Claire says. “We do that by setting priorities by listening to families about what’s most important to them and what’s troubling them most. We also spend a lot of time speaking with doctors and nurses. Often we hear regular themes coming up about what problems families are having, and which ones are most impactful, then we focus on those.”
“Once we have focused on what’s important, we’ll go on to develop some kind of intervention or program to address this. We figure out what’s happening and how we can help.”
One exciting project that is coming to fruition is the Reboot program, made possible by funding from The Kids’ Cancer Project. Reboot helps families manage a healthy nutrition balance after cancer treatment.
Another program from Claire’s team is called Cascade, which helps families to reintegrate back into their ‘normal’ lives once they come out of the treatment system.
“It’s really hard for parents to suddenly be back in the real world,” Claire says. “They can find it quite difficult to pick up the pieces and move back into normal life. They’re battling things like financial impacts, having been out of work, and other worries, particularly around the cancer coming back.”
“We conducted qualitative interviews with 112 families and worked out what their challenges were. Then we created Cascade, which is a resilience program delivered online. Parents meet up in groups with a psychologist and they go through this program for four weeks. Many parents value sharing their stories about how they coped with certain challenges.”
“We just finished a randomised trial and we’re now implementing it with partners in community organisations, in different forms and content levels.”
Most impressively, the program is already being picked up internationally after being recognised for its enormous value, including in the UK, Mexico and New Zealand.
“It has taken a long time to develop, about seven years, but it’s a program that is packageable and shareable with other sites,” she says. “Hopefully soon, no matter where you’re from you’ll be able to participate and connect with other parents to share information and knowledge around problems and solutions.”
Claire’s office is across the corridor from that of Professor Tracey O’Brien, Head of the Kids Cancer Centre and Professor Richard Cohn, Medical Director of the Behavioural Sciences Unit. This, she says, stands as a constant physical reminder that the work she and her team do must make a measurable difference to families.
“All of this work has taught me that every family is different,” Claire says. “People cope better or worse at different aspects of it. I think it’s fair to say that all families will be challenged in some way during and after cancer treatment. But you can’t necessarily predict what will be most difficult for a family until they get there.”
“My message to any family would be to be aware that there’s a huge support network around them, both professionally and personally. Most people want to do something to help. So my overarching advice would be that the journey will be easier if you share your worries and concerns. It will be easier if you are open and honest about how you’re going and how you’re feeling. Ask for specific help to give people a chance to contribute in a practical way that will make it easier for you.”
“Finally, remember that there is great value in meeting other people who’ve been through it. You can connect and share that lived experience to discover your own solutions.”