“Welcome to the club”- What COVID-19 can teach us about childhood cancer

New Curtin-led research has found the widespread social and hygiene changes that have occurred because of COVID-19 mirrored the usual way of life for families of children with cancer.

An Australian-wide study, published in Pediatric Psychology, and led by PhD student Jenny Davies from Curtin University’s School of Population Health, explores the impact of COVID-19 on families of children with cancer. The topic was close to home for Ms Davies, whose own daughter battled childhood cancer.

Ms Davies said few studies had examined the impact of COVID-19 on families of children diagnosed with cancer and the results could help others understand the challenges.

“Children treated for cancer become profoundly vulnerable to infections, every fever means a hospital admission and even the common cold is enough to make a child with cancer extremely sick,” Ms Davies said.

“When you have a sick and immunosuppressed child, you have to be very cautious in your contact with other people. Participants said they would previously struggle because many people wouldn’t care about infection control but when COVID-19 hit, many started to take more care by social distancing, wiping everything and covering their mouths.

“Because COVID-19 has increased our awareness of infection and hygiene, parents of children with cancer found the community was more understanding about the need to protect their vulnerable kids.

“COVID-19 restrictions actually made it easier on families, so rather than having someone turn up with a sniffle and having to awkwardly tell them they can’t come in, those difficult conversations could be avoided.”

Ms Davies said parents also expressed that the widespread societal changes reduced their sense of being different, or out of the ordinary.

“Childhood cancer treatment and immunosuppression has meant living in isolation for many families , with one mother commenting that COVID-19 restrictions hadn’t impacted them so much because they didn’t actually see people that often anyway,” Ms Davies said.

“Parents of children with cancer found that, between the fear of infection and demands of gruelling treatment, social outings were “non-existent”, even before lockdowns.”

Ms Davies said that many of the families in the study said lockdowns generally felt like what life was like for them when their children were in treatment.

“Many participants said COVID-19 made it easier for their children to miss out on school and events. One mother said her daughter couldn’t go to school, which was hard, but the silver lining of restrictions meant everything got cancelled. Either way, sick children didn’t miss out on anything because everybody missed out.”

“But those diagnosed during COVID-19 lockdowns painted a bleaker picture. Restrictions on hospital visitors made for a lonely experience, as families couldn’t come together, with one parent recalling hearing that her child had cancer while her husband was forced to sit in the waiting room.”

Ms Davies said that the study also found border restrictions meant relatives of sick children who lived overseas or interstate couldn’t lean on their families for support.

“Some parents noted that support from the community was also reduced during lockdowns,” Ms Davies said.

“Everyone has been doing it tough with COVID-19 over the 18 months. This study helps us to use this experience to understand the lives of families of children with serious illness and perhaps allow us to better support them in the future.”

The full paper, Parents’ Experiences of Childhood Cancer During the COVID-19 Pandemic: An Australian Perspective, is available online here.