“one of the things which is quite difficult is to get to take his
antibiotics. …as he’s got older that’s become more tricky and
we’ve had to hide it in food. Because sometimes you’ve got to give him
this stuff 3 times a day and it’s not particularly flavoured nicely, so
he’s very aware that this is medicine that he’s having and he doesn’t
want to have it so, um obviously that’s something that is, you can
overcome it but sometimes it’s quite tricky.” (father 2)
In some healthcare settings children diagnosed with PCD attended a
one-stop multidisciplinary clinic once every 3 months for review by a
PCD respiratory consultant, respiratory physiotherapist, PCD nurse
specialist, and sometimes a psychologist, dietician, and/or
Ear-Nose-Throat consultant. In countries with fragmented PCD care, the
parent was responsible for coordinating all appointments and
communication with medical specialists needed for their child’s
wellbeing.
Most parents valued an update on the medical status of their child and
felt involved in the medical decision making regarding their child.
Parents described their medical team as family and felt they could
contact their medical team whenever they had questions or issues.