COVID-19 pandemic has placed an additional burden on parents of children with cancer

The COVID-19 pandemic has brought additional financial pressures, childcare problems and other problems on existing burden-bearers with children diagnosed with cancer, according to a study by researchers at Duke Health and other institutions.

Studying 360 parents and carers of children currently in treatment or still being screened for cancer, the researchers found that half of appointments had to be postponed or delayed, 77 said. % were more worried and of those who lost their jobs or wages, 11% were struggling to pay for basic needs.

The findings of the study will appear online this month in the journal Pediatric blood & cancer.

“Parents and caregivers of children with cancer are already under great pressure,” said lead author Kyle Walsh, Ph.D., an associate professor in the Department of Non-Surgery at Duke University School of Medicine. “And while the pandemic has affected everyone, isolation, job losses, lower wages, school closures and other effects of the pandemic on families with cancer are particularly severe. “

Walsh and colleagues conducted a 13-question multiple-choice study in the early months of the pandemic, between April and May 2020, in partnership with the Alex’s Lemonade Stand Foundation. The foundation maintains a voluntary register of families with children diagnosed with cancer, and caregivers from this register were participants in the survey.

Among respondents, just over half had children currently or still being monitored for cancer. The majority of respondents were women, and overall household income was representative, with approximately 20% earning an income of less than $ 50,000 a year and 30% earning over $ 100,000 a year in income.

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• 50% of carers reported that meetings were delayed or postponed.
• 26% said they had turned to telehealth.
• 9% report career-related supply challenges.
• 28% said they were losing a household salary as a result of the pandemic, with 11% having a problem. pay for basic needs and 5% straining to pay for their child’s medical care.
• 64% said they felt sadder or lower than they had before the revolution.
• 77% said they felt more anxious, often due to isolation and financial stress.

“Overall, many families struggled with break-ins of care as well as educational breaks,” Walsh said. “In families with more than one child, it was difficult to find out how to get their cancer patient to a doctor or clinical visit, for example, by getting other children home from school, but however these children were unable to attend meetings due to a lack of visitors at hospitals and clinics. “

Additional concerns focused on how COVID could have a significant effect on children whose immune systems were already weakened by cancer treatments, and whether additional cleaning and disinfection practices would be more immune to enough.

Walsh said another issue that emerged from survey respondents was the many similarities between parenthood during their child’s treatment and parenthood during COVID, in particular being “high alert” for germs during both. time, especially surface disinfection and limiting visitors.

Walsh said the information gathered in the study will help determine how to improve access and social support for pediatric cancer patients and their families.

“This idea of ​​trying to identify pressures – where social work teams can intervene – will be helpful in moving forward,” said Walsh. “We understand that everyone feelings of stress and distress with COVID, but this is an unparalleled risk to children and parents and we must make a stronger effort to identify and reduce this distress as best we can. “