The complexities of contagion: The experience of social isolation among children and youth living with cystic fibrosis in Canada

Abstract

While cross-respiratory infection guidelines reduce the risk of infection, this may have deleterious impacts on the socialization skills of young people living with cystic fibrosis (CF). The purpose of this study was to explore the experience of social isolation among young Canadians with CF, as well as how they navigate these complex contamination restrictions. The thematic analytic qualitative research tradition was adopted and social theories of risk provided theoretical grounding. The youth described a pressing sense of social isolation in their everyday lives. Although most of the youth ‘obeyed’ the cross-contamination guidelines, some demonstrated a more carefree attitude. Social media was employed across the group as a tool to reduce isolation. In accordance with the sociology of risk, youth with CF demonstrate sophisticated decision-making abilities, navigating exceedingly difficult choices to preserve an always-precarious future. While necessary, cross-contamination guidelines might further marginalize an already isolated group of children and youth.