TABLE 2

Comparison of Parents’ Preferences for Disclosure of Adverse Events for Themselves Versus Their Children

Parents’ Preferences for ThemselvesParents’ Preferences for Their Children
ThemeIllustrative QuoteThemeIllustrative Quote
Whether to disclose: complete transparency“…I just feel that I want to be informed of everything because I’m his main caregiver. And I feel like I’m the only one who can advocate for him because he can’t speak for himself.”Whether to disclose: a complex assessment“… I think it should be the parent’s choice ’cause kids are all different…. You know your kids better than the doctors know the kids as far as mentally, right? If it’s something that you (the parent) think they could deal with, then you (the parent) can divulge it.”
Who to disclose: person in charge“Somebody of authority coming in and speaking to you because…you would feel…the importance of somebody to come in and speak to you.”Who to disclose: parent, with health care provider support“It depends. Like maybe if the child had questions that I couldn’t answer then maybe I would ask the nurse or the doctor to be there. Otherwise I think I would probably be able to answer.”
When to disclose: immediately“So, if you make a mistake, why’d you make the mistake and just tell me about it. I just, it’s my daughter, I want to know what’s going on at all times.”When to disclose: when the child is ready“it would really depend on the moment and the kind of mood she is in. If she is in a mood where she … doesn’t really want to be there … I might not tell her. Um, but, you know…if I think she could handle it then it would really depend on her condition at that point. You know, emotionally”
What to disclose: full details“…human error… this is what happened… this is how it came to pass, this is what, this is actually how it came… A never told B, shifts change, like…however it actually happened….”What to disclose: partial details“…And say, you know, there was an error with your medication, but now you are here and they’re going to rectify it and you’re going to get better…I don’t think I would like to go into it so deeply and say this is what happened and they screwed up here and now you’re here.”