Psychosocial impact of COVID‐19 on caregivers and adolescents and young adult survivors of childhood cancer

Abstract

Background Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID‐19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID‐19‐related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics. Procedure From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID‐19 Exposures and Family Impact Survey (CEFIS) and CEFIS‐AYA, respectively. Total COVID‐19‐related exposures, average COVID‐19‐related impact, and COVID‐19‐related distress were calculated. Conventional content analysis was used to analyze free‐text responses about the negative and positive effects of COVID‐19. Results Caregivers and AYA reported an average of 7.4–7.8 COVID‐19 exposures to pandemic‐related events and a slightly negative impact of COVID‐19 across psychosocial domains, with some positive impacts reported. COVID‐19‐related distress was moderate and clinically meaningful (4.9–5.2/10) for AYA and caregivers. Racial and ethnically minoritized AYA and caregivers reported higher COVID‐19‐related distress than non‐Hispanic white caregivers. For AYA, distress was also higher among female, college‐age (18–22 years), and long‐term survivors compared with males, younger AYA, White and those recently off treatment. CEFIS outcomes remained relatively stable over time. Conclusions COVID‐19 had a significant and consistent negative impact on caregivers and AYA survivors. Racial and ethnically minoritized families and female, college‐age, and long‐term AYA survivors may require additional psychosocial support. Assessing for COVID‐19 impact and distress is important in pediatric oncology to evaluate adjustment and plan targeted interventions.

Impact of COVID-19 on Lifestyle Habits and Emotional State of Childhood Cancer Survivors and Their Parents

“…During the lockdown period, children engaged less in outdoor activities, but were able to find alternative indoor activities. This finding is consistent with the results of a previous study comprising adolescent and young adult (AYA) cancer survivors [ 40 ] and of a study comprising primary school adolescents from Poland [ 20 ], showing no significant change in exercise levels during the COVID-19 pandemic.…”

“…In the current study, we have shown that childhood cancer survivors and their parents had higher levels of anxiety during the COVID-19-associated home confinement compared with the period before, similar to worldwide studies in healthy adults and children, as well as in those with chronic diseases [ 1 , 2 , 4 , 5 , 6 , 7 , 8 , 9 , 11 , 12 , 13 , 40 , 44 ]. Despite widespread concerns regarding lifestyle habits during the COVID-19 outbreak [ 14 , 16 , 17 , 18 , 21 , 22 , 23 , 24 , 25 ], in our cohort, eating behaviors improved, sleep duration increased, and physical activity remained unchanged during confinement, although screen exposure time increased significantly.…”

“…Interestingly, COVID-19 had no effect on the anxiety levels of children with CF [ 43 ]; a study comprising caregivers of CCS showed that 77% felt more anxious during the COVID-19 outbreak than before, while 64% of caregivers felt more depressed [ 44 ]. In another study, a moderate negative impact of COVID-19 on anxiety and mood was observed in caregivers as well as in adolescent survivors [ 40 ].…”