‘Welcome to my world’ – researcher inspired by personal experience to improve support for parents of a child with cancer

Highlighting the challenges faced by parents experiencing childhood cancer has become a passion that drives Curtin University psychology researcher Jenny Davies.

Ms Davies has recently published a paper in the Journal of Pediatric Psychology which found most parents of a child with cancer believe the COVID-19 pandemic provides greater understanding in the community of the everyday issues they face.

The study was inspired through her own experience parenting a daughter who was diagnosed with a cancer 8 years ago and her gratitude to Head of Oncology and Haematology at Perth Children’s Hospital, Professor Nick Gottardo.

Professor Gottardo is now co-supervising Ms Davies’ PhD.

The study highlights how the widespread anxiety and disruption to normal routines during COVID-19 is all too familiar for parents of a child with cancer.

Ms Davies said the common complaints expressed during COVID-19 such as loss of income, fear of infection, social isolation and interruption to school were routine for families of children going through cancer, which one parent summed up as ‘welcome to my world’.

The study documents some benefits from the pandemic for these parents such as the rise of zoom, working remotely and virtual schooling.

“Parents were also comforted that their kids were safer due to the practical benefits from handwashing, masks and social distancing,” Ms Davies said.

“I hope this work will help generate greater understanding and psychological support for families impacted by cancer, particularly newly diagnosed families.

“A lot of families suffer through a lack of understanding around issues such as fear of infection.”

Ms Davies also noted that COVID-19 increased challenges for many families particularly for those who had a child diagnosed during COVID lockdowns.

Ms Davies said visitor restrictions at hospitals during this time meant it was often a very lonely experience for these families.

“There is enormous scope to provide better support for these families, particularly given cancer is not just a medical condition but also a psychological condition.

“While the experience of COVID-19 has been extremely difficult, it has enabled our society to develop the skills and infrastructure to create more flexible workplaces and schools.

“In the long term, I hope we can use what we’ve learnt from this experience to help better support our most vulnerable including parents supporting a child through cancer,” Ms Davies said.