Table 4.
Setting | Total | CF | SCH | Quotation |
---|---|---|---|---|
% (n) | % (n) | % (n) | ||
Liked receiving results over the phone | 4% (10/270) | 4% (4/99) | 4% (6/171) | “So I think maybe the phone call and the giving of information immediately was probably the best – at least for me – that was the best way to do it.” (mother, CF carrier infant) |
Disliked receiving results over the phone | 3% (8/270) | 6% (6/99) | 1% (2/171) | “Just like I said, in the initial phone call when we found out that he had an abnormal screening, it was just high anxiety…we really didn’t understand what was going on so it was just kind of hard that it all happened over the phone and I talked with [PCP] about it” (mother, CF carrier infant) |
Liked receiving results from PCP | 5% (14/270) | 6% (6/99) | 5% (8/171) | “Um, I liked the personal contact, that [PCP] herself called me, and it wasn’t, it wasn’t a nurse although I don’t mind if a nurse calls me either but the fact that the doctor herself took the time to call, um, and made sure she spoke to me directly, um, and, you know, she was just, like I said, very matter of fact about it and reassuring and, um, she followed up with sending the printed material like she said she would.” (mother, SCH carrier infant) |
Liked receiving results in person | 4% (12/270) | 7% (7/99) | 3% (5/171) | “I felt more comfortable by [PCP] talking to me about it face to face.” (mother, SCH carrier infant) |
Disliked receiving results on a Friday or before a holiday weekend | 3% (7/270) | 6% (6/99) | <1% (1/171) | “It was, um, well first of all it was just bad circumstances. It was the Friday before Labor Day weekend…and, well you know, it’s Labor Day weekend and we couldn’t even call to schedule an appointment until the following Tuesday, so we go through the entire holiday weekend completely miserable thinking that, you know, our poor infant is going to be, um, extremely ill for the rest of his life and not knowing, you know, the differences between, like I said, being a carrier and having the disease. And, um, you know, and then having to wait four days through a holiday weekend to even be able to call to schedule an appointment to find out if he had it – it just wasn’t good…it was just unfortunate for us…it wasn’t a good situation…It was a pretty miserable weekend.” (mother, CF carrier infant) |
Disliked receiving results by voice mail‡ | 2% (5/270) | 4% (4/99) | <1% (1/171) | “[PCP] actually left me a voicemail saying that, “Some of the results came back…” I remember she used the word “irregular” I think and that I needed to call her back, and so that was the first time I heard anything about the newborn screening and the results, was on the voicemail…we played phone tag for probably a couple days, so without knowing what was irregular, you know, I’m at home with a brand new infant, extremely concerned….I’d say, uh, the first would be not leave a message…saying, you know, ‘There’s test results that came back’ without elaborating on that at all. Of course as a new mom you think the worst right away.” (mother, CF carrier infant) |
The abbreviation SCH refers to parents of SCH carrier infants; the abbreviation CF refers to parents of CF carrier infants; percents are rounded to the nearest whole percent
Statistically significant for parents’ report of negative reactions (p<0.001)