“we were relieved and sad at the same time. Because PCD, it’s something he will have for the rest of his life, and something he will have to deal with for the rest of his life. You know, we were sad that he did have a condition that would affect him for the rest of his life.……. we were happy because now he is being treated, so now we can actually get things with his diagnosis so we are relieved that we have one.” (mother 10)
Many parents did not process their child’s PCD diagnosis immediately, but just focused on dealing with daily challenges. These parents described getting overwhelmed when faced with a major challenge.
“I think the hardest thing we ever found to deal with was the hearing aids…..Which was just because we’d coped so far, like he was 18 months when he had hearing aids in and I think that, at that point we were like, actually it’s ok to not feel ok about this. Whereas up until that point we were like ok, yeah, we can do this, we can do this!” (mother 4)
Impact child’s treatment regimen on parent
Parents caring for their first child with PCD described feelings of worry and stress, having responsibility for PCD management. Treatment regiments were described as overwhelming particularly in the early stages of diagnosis but became easier over time.