“my child will become more independent with treatments and stuff
and we’re helping her to achieve that, but that’s quite tough to achieve
that, because you want them to have the best possible treatment and in
my eyes, the best possible treatment is me being in control of that
treatment.……So that concerns me. Have I brought her up in
the best possible way I can for her to really comprehend how serious
this condition is and that PCD if it’s well maintained…. she can
live…as normal a life as she allows herself to live, by the
treatment she continues to do?” (mother 3)
Many parents thought about how PCD might limit the child’s social
activities, development, and career goals.