“Currently my son is very confident, but kids can be very cruel and I think if he’s going to continue speaking very, very unclearly, they might pick up on him. … I don’t know, but you know simple things like, he can’t say finish, he’s saying pinish, and you know for 4 ½ its still quite cute, but when he’s 6, 8 or 10, it’s not going to be cute any more, it will become an issue for him” (mother 15)
“I think he will be more affected by it when other children get annoyed by it, so like he coughs a lot, you know and I can just imagine him sitting in class coughing and someone’s going “ooh, that’s not very nice”. So, it’s that, that we need to be like teaching him how to do it nicely, and make sure he blows his nose, and all of those things, just to support the social aspect of it. I guess it’s that side of it that needs to be carefully managed and supported as well because otherwise he will be physically fine but mentally not, so … we need him to be able to cope with that side of it.” (mother 4)
Another concern that was frequently mentioned was progression of disease severity. Some parents worried that lung damage might lead to lung transplant, progression of hearing loss, and even PCD cutting their child’s life short. Currently, parents were in control of PCD treatment and adherence, but some worried whether their child would continue to manage their treatments adequately when older.