“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.