“it is about emotionally as well, it wasn’t really comforting … she is looking at you and you are actually giving her physio and you want her to have the head mask as well and you know she doesn’t know what is happening…..to be honest that was actually really really difficult. ……. she was getting very very edgy, like she was crying and really upset and we were supposed to keep her there for like 5-10 minutes, I mean, depending on how we feel, like if she is coughing or not.” (mother 2)
The parents described their frustration at the continuity of the condition and treatments. They explained how important it is for their child to do the treatment every day in order to stay well. They felt time pressured in the morning to complete the PCD treatment before they did any other activities. The also described not being able to follow their own interests or schedule alone time.