“It’s horrible, it’s the worst time…I used to think it was hard when (child) ended up in hospital and at the time that was like the end of the world. You know, we had one child and that child was in hospital and you worried about that child and it was just awful. But actually, now having 2 with it and one without – having 3 children, what actually now has materialised is hideous, as a mother having to pick between your children, having to choose between them.” (Mother 3)
Impact child’s health status on parent
In general, parents did not anticipate their child being born with health problems when they decided to start a family. Now that they were living with a child with a long-term health condition, they sometimes wished the child did not have PCD, were wondering why this happened to them or wished that there was a cure. Emotionally, the worries about PCD never left some parents. For some parents PCD worries were in the back of their mind surfacing as soon as the child was feeling unwell, the child needed to visit a doctor or therapist, or they received PCD related correspondence. Parents wanted their child to live as normal a life as possible as explained by the following mother: