“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.