Paediatric oncology parents are pleased with quality of care despite pandemic

This article originally published on The Limbic

Most parents of children undergoing active cancer treatment at the RCH Children’s Cancer Centre, Melbourne last year reported no change to their child’s care due to COVID-19.

An online survey of more than 100 parents in October-November 2020 found 69% reported no change to their child’s treatment plan and 71% reported no delay in procedures or treatment.

This is despite general COVID-19 restrictions, stresses and impacts on family lives including stay at home orders, school closures and reduced household incomes.

Most children had diagnoses of ALL (44%), brain cancer (18%) or sarcoma (9.5%).

Most parents felt well informed and reported that their children felt safe in the hospital and that they themselves perceived it as safe or even safer than pre-COVID-19.

“Over 90% of parents (92%, n = 76) were confident that COVID-19 had no impact on medical decision-making,” the study said.

The study, published in Paediatric Blood & Cancer, said of the 56 families (67%) whose child was diagnosed before COVID-19, only 9% felt their oncology care was worse due to the pandemic.

“All parents reported an overall positive relationship with their child’s care team, with 93% (n = 76) rating the relationship as good and 7% (n = 6) as satisfactory. Parents’ overall positive perception of their child’s medical care was also reflected in the majority of open-text survey responses.”

Most parents (57%) also reported that oncology support services such as social work, mental health, art/music therapy, and education continued to be accessed.

Young children 8 years and under were more likely to be distressed than children ≥9 years during COVID-19 swabs prior to procedures or due to symptoms such as fever, runny nose or cough.

Twenty families (24%) reported their child needed to be restrained during swabbing and 11% of families reported being extremely distressed by this.

“Whether this testing has led to greater procedural distress in oncology patients or will have persistent longer term effect is, as yet, unknown,” the study said.

Many more parents (71%) were personally impacted by the one caregiver policy during their child’s admission

In general, parents worried about their child contracting the virus, financial issues, and difficulties accessing some health care/charity services.

Yet some positive impacts of COVID-19 included increased quality family time, greater community hygiene standards, ability to work from home, and children’s adjustment to online learning.

Only increasing family dysfunction was associated with a greater COVID-19 impact, the study said.

“This finding also suggests that psychosocial interventions directed at strengthening family functioning and relationships may be helpful in mitigating the additional stressors families with children with cancer are navigating because of COVID-19.”

“In conclusion, this study has identified that despite enduring some of the strictest lockdown measures worldwide, most paediatric oncology parents were pleased with the quality of their child’s care during the COVID-19 pandemic.”

“Importantly, there was minimal impact on paediatric oncology care during lockdown.”

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