Making Visible the Life Stories of Families of Children who are Immunocompromised during COVID-19

A significant number of children worldwide are immunocompromised (IC). These children are extremely vulnerable to illnesses and infections, meaning that any time IC children or their family members leave their home, the child's life is in jeopardy. Families of IC children encounter many challenges and inequities, such as financial difficulties, poorer physical and psychological health, social isolation, and marginalization. In spite of the large number of IC children, we have little understanding of what it is like to be a family of an IC child. Moreover, we have limited understanding of these families' experiences during the current COVID-19 crisis from the emergence of the virus, to the various peaks and waves, to the new and changing circumstances in which they find themselves trying to adjust as part of their everyday lives. The goal of this 4-year patient-oriented study is to understand and document the lived experience of families of IC children during COVID-19. Children under the age of 18 who are IC (primary or secondary) and their families (including parents, caregivers, siblings) across Canada will be invited to take part in the study. Multiple data sources are planned to include individual and family interviews (conducted in English and French), and digital story-telling. Short-term, the study will result in advanced knowledge on the experiences of families of IC children during COVID-19 including insights into their well-being has been affected by the pandemic. Recommendations to improve healthcare and social supports and services that improve their well-being for future waves and/or crises will be identified. Long-term, the work emerging from this research program will be used to inform patient-oriented service delivery and outcomes nationwide for this currently underserved and vulnerable population, with implications for children who are IC and their families residing in other contexts, important for future pandemics and other public health crises.