Impact of the COVID-19 pandemic on the psychosocial health of children with cancer, survivors, and family caregivers: A pan-Canadian study of issues and solutions

Although the impact of the COVID-19 pandemic on youth mental health is widespread, children with cancer (the most common life-limiting disease in Canadian children), survivors of childhood cancer, and their caregivers, sit in a particularly precarious position. Childhood cancer is a highly stressful life event marked by intense and difficult treatment decisions, impacts on mental and physical health, and increased financial burden on families. During the pandemic, children impacted by cancer and their caregivers have also been exposed to several changes in cancer care. For example, cancelled psychosocial support groups, and limits to the number of caregivers allowed to be present in the hospital during treatment (e.g., one caregiver per patient). These restrictions have likely further impacted the wellbeing of children and their families. However, no studies have evaluated the psychosocial and behavioural health consequences of the COVID-19 pandemic among Canadian children with cancer, survivors, and their caregivers. We want to hear directly from youth with cancer, survivors of childhood cancer, caregivers, and health care providers (HCPs) in childhood cancer care settings about the impact of the COVID-19 pandemic. Our study has four phases. In Phase 1, patients, survivors, caregivers, and HCPs from across Canada will complete online surveys. In Phase 2, we will interview some patients, survivors, caregivers, and HCPs from Phase 1. Together, these surveys and interviews will tell us about COVID-19 impacts on mental and physical health as well as childhood cancer care. In Phase 3, we will meet with patients, survivors, caregivers, HCPs, and organizational partners. Here we will decide the clinical, research, and health policies that are needed to prevent or alleviate negative health outcomes on youth impacted by cancer and their families, and how to optimize wellbeing in the next phase of pandemic recovery and beyond.