CORE THEME | SAMPLE DATA REPRESENTING EACH THEME |
---|---|
Balancing pre-existing relationship with required expertise | “OK, so a stranger calls you from the hospital and says your child might have cystic fibrosis, but we just have to check to be sure, it’s probably worse than if I sit down and talk with them, speak with them after I’ve had a relationship for several years” (F2) |
“I don’t know enough to counsel parents and they usually have a lot more questions than I can answer .… I don’t know enough about all the statistics and the next steps, and where to go and what bloodwork they have to do. So I find it easier for the person from the newborn screening to call them” (P4) | |
System design | “Really, like not beyond textbook knowledge and, you know, I’ve never had that result .… So when I saw [the result], I panicked a little—oh my god—I really don’t know anything about this condition, but it didn’t matter because I got such good thorough information, I felt like I could convey the basics to my client. And I was able to refer her to the professionals quickly so it was just seamless; it was a really good experience” (M2) |
“So I get a panicked call at about 3 pm or so in the afternoon, from the dad .… ‘We got some call about something to do with CF in [child’s name].’ I had not received any results yet … I’d received no information, like nothing. They got the call from [NSO] saying they’re being referred, so they’re in like a total panic .… And so it just, it was a bit of a challenging position for me .… I’m scrambling trying to get information before I call them back, in the middle of clinic. Had I received the result beforehand … a couple of hours in an evening to figure it out before I called the family to tell them, or before I heard from them” (F4) |
CF—cystic fibrosis, F—family physician, M—midwife, NSO—Newborn Screening Ontario, P—pediatrician, PCP—primary care practitioner.