“…what I’m really concerned about also, is whether he’ll be able to have children one day. Because, I know the kind of science is moving in the right direction and there might be some further development, but from what I understand for males with PCD to actually conceive the child naturally it can be difficult. So he might need some extra help and I know that for some males that might be an issue, they won’t be an alpha male. Being able to fully, not just perform, but what I’m saying is being able to do all those things that they are kind of natural to male, and it might affect his confidence and self-esteem and mental health in the future.” (mother 15)
COVID-19 pandemic and caring for a young child with PCD
Three months into this project the COVID-19 pandemic started. As we wanted to focus on everyday experiences of parents caring for a young child with PCD, our data collection stopped from March to July 2020, the first wave in the COVID-19 pandemic in the UK. COVID-19 was rarely reported among children diagnosed with PCD (Pederson et al., submitted) and as the world tried to return to some form of normality, the data collection for this study resumed from August to December 2020. The interviews did not focus on the effect of COVID-19 on caring for a child with PCD, but parents spontaneously brought up the impact COVID-19.
Parents discussed how anxiety-inducing it is caring for a young child with PCD due to COVID-19. One mother described how she worried about her child going to school and that he wasn’t shielded anymore: