“I know it has had a big impact on my 2 other children, because
of this condition that my child has PCD, you know. Because they can see
I give her more time and I don’t have enough time for them and even if I
do, I’m just too tired that my attention is not with them, especially
when it comes to homework and just other stuff, you know cos I’m just
physically run down and tired doing all the chest physio and stuff like
that. I get tired myself, you know what I mean.” (mother 14)
Parents received support from friends and family, however reported
feeling that nobody understood exactly what they are going through. The
following mother explained: