“We are always in self-isolation”: Navigating COVID-19 as a young person in Canada with cystic fibrosis

Abstract

The pandemic disproportionately influenced marginalized communities in North America. However, the social and spatial inequalities impacting marginalized rare genetic disease communities – such as those living with cystic fibrosis – have not been heard in mainstream pandemic narratives. Sensitized by the social determinants of health, this qualitative study explored the experiences of 12 youth with Cystic Fibrosis (CF) during the pandemic. Content analysis revealed four themes. Youth with CF experienced changes across physical spaces, faced pandemic anxiety, and struggled with access to digital and medical spaces. Youth also reflected on being “used to” life-long physical distancing as a result of CF. Our findings show the complexity of environments for youth with CF during the pandemic while demonstrating how Covid-19 shaped the lives of rare disease communities. Our findings also illustrate spatial and social inequities among marginalized, rare genetic disease communities.