Julia Gumy: Child centred care in paediatric oncology—lessons from the covid-19 pandemic

A BBC news article titled “Covid: The devastating toll of the pandemic on children” highlighted the negative effect of the pandemic on children’s physical and mental wellbeing. Months of lockdown and school closures over the past 18 months  have increased mental health problems due to loneliness and a lack of schooling and social interaction. The pandemic pushed children into an unimaginable situation where for periods of time they were not allowed to visit family members, play with friends, and or even touch surfaces. Children have, at times, been confined to their houses, many of them without private gardens and in overcrowded living spaces. But while for the majority of people this has been truly unimaginable, the community of paediatric oncology parents has been softly whispering: “welcome to our world.”

My daughter was diagnosed with Anaplastic Large Cell Lymphoma (ALCL) at the age of seven months old. She is now 4.5 years old and still on treatment due to two relapses, one after a Bone Marrow Transplant. As any other oncology patient, she is immunosuppressed, which means that she is at high risk of infection. Because of this she has lived her life in lockdown. We take extreme precautions to sterilise and disinfect everything she touches. We restrict and “track-trace” her and our social contacts to avoid her acquiring infections. It has only been a year since she started going to nursery but, as she was initially classed as Critically Extremely Vulnerable (CEV), we shielded her for months. The BBC article referred to it as “incarceration” of disabled children, and the term couldn’t be more appropriate. But I’d argue that for many oncology children, it wasn’t the lockdown that incarcerated them. The lockdown has only made things worse. Many oncology children cannot attend school or nursery on a regular basis. They often spend long periods of time in hospital. Their social network is limited to prevent infections. Their activities are also restricted due to neutropenia or medical equipment (e.g. central lines, nasogastric tubes). Families of oncology children are confronted on a daily basis with numerous challenges and uncertainty. The recent SHARE study supported by the Children’s Cancer Leukaemia Group (CCLG) highlighted that the pandemic has increased these uncertainties and anxieties. 

Nevertheless, there is something that the pandemic has improved for our family. My daughter’s journey has been characterised by long periods of in-patient care as well as out-patient and day care. Some of the treatment protocols required her to attend hospital day care twice a week, each visit lasting around four hours or more and was primarily waiting time. Those sessions felt never-ending, our entire lives revolved around hospital, which didn’t help with our mental wellbeing. While my daughter’s peers were enjoying their childhood, my daughter experienced much of her early years learning to silence a beeping IV machine. Saving the life of a child is, of course, a priority in cancer treatment and some protocols will require children to attend hospital regularly. But the pandemic has also taught us lessons. My daughter’s current protocol requires blood tests weekly (via finger prick), chemotherapy fortnightly (via portacath,) and IV antibiotics once a month. Because of the pandemic, our hospital has arranged for most of her care to be given at home by specialist oncology nurses, and this takes 30 minutes per week overall. This change saved us several trips to hospital and several hours in hospital each week. It has allowed my daughter to have a life, to attend nursery, and to understand hospital as an auxiliary element in her life, not as an integral part of her existence. The time gained is time that we can spend as a family fulfilling our needs and values and it has had a huge impact on our quality of life. While this is certainly not possible for all cancer patients or stages in treatment—and hospitals may not have the resources and staff to provide home care—it puts child-centred care at the core of the discussion. In other words, how can we protect oncology children’s time in a context where given the uncertainty of the disease every second of life is precious? 

At a time where we are forced to think about what is important in a child’s life and ways in which we can protect children’s needs and rights, it is imperative to remind ourselves that for a sizeable group of children, cancer is the source of their lockdown. Therefore individualised and child-centred solutions in the care of these children can have a significant impact on theirs and their family’s quality of life. Once the pandemic is over and life is back to normal for the majority of people, what can be done further to alleviate oncology children’s cancer lockdown? An answer to this question is crucial if we don’t want to leave any child behind. 

Julia Gumy, lecturer in social policy, University of Bristol. Twitter: @julemy20

Competing interests: none declared.

Patient consent obtained.

Acknowledgements: JG would like to thank the NHS and her daughter’s medical team for the outstanding care they have provided throughout four years of cancer treatment.