Parenting Between the Rules: How the Parents of Young People with Cystic Fibrosis in Canada Navigate Cross-Contamination Restrictions

Background Due to the risk of cross-contamination and the enforcement of strict infection control guidelines, patients with cystic fibrosis (CF) and their families have engaged in social and physical distancing for the past decade and a half. Family members, such as parents, are considered to be a critical component of patients’ lives. Objective We explored how the parents of young people living with CF in Canada take up, navigate, and negotiate cross-contamination restrictions in the context of their everyday lives with their children. Methods We drew upon social theories of loneliness and also employed a thematic analytic descriptive qualitative approach. Our descriptive qualitative approach included conducting semi-structured interviews with 13 parents of young people with CF. Results Although the parents of young people with CF carefully adhered to the cross-contamination rules, many were critical of the practice and spoke to the social costs of physical distancing. As well, parents often felt isolated from social activities, their partners or spouses, and from access to informational resources within the CF community. Conclusions Perceptions of social isolation and loneliness were common in the reported experiences of CF parents in this sample. These parents also conveyed concerns about cross-contamination restrictions and other biomedical regimes, finding it difficult to balance the rules with their lives. Development of social support programs and interventions that address the themes identified may be useful.