“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.