“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.