Table 2.
Specific content messages that influenced parents’ NBS results disclosure experiences and reactions (Theme 1) *
| Content Message | Total | CF | SCH | Quotation |
|---|---|---|---|---|
| % (n) | % (n) | % (n) | ||
| Infant is (likely§) a carrier † ‡ | 20% (53/270) | 39% (39/99) | 8% (14/171) | “[PCP] did good. He explained it all to me and reassured me that [infant] most likely did not have [disease] but was most likely a carrier.” (mother, CF carrier infant) “I think that it would’ve been nice…to be told that there is a possibility that [infant] could just be a carrier.” (mother, CF carrier infant) |
| Infant (likely§) does not have disease † ‡ | 19% (50/270) | 26% (26/99) | 14% (24/171) | “The most helpful thing is that [PCP] told me… [infant] has the trait, she doesn’t have the disease….because at first I was like does that mean she have [the disease]? And when [PCP] told me, ‘no’ that she doesn’t have it, she just has the trait, and I felt a little better.” (mother, SCH carrier infant) “I was so scared and terrified because [PCP] didn’t really give me any information, odds are [infant] is not going to have this disease. She didn’t tell me that. I walked away believing that [infant] probably had it and, obviously, we were just freaking out. That was pretty scary there.” (mother, CF carrier infant) |
| NBS result should not worry parent † | 16% (44/270) | 24% (24/99) | 12% (20/171) | “[PCP] kinda broke it down like what, what [the NBS result] was and not to worry you know about it and stuff, but it was just helpful because it lets you know right away and don’t get surprised by it.” (father, CF carrier infant) |
| Information on statistics, inheritance or family history † | 15% (40/270) | 13% (13/99) | 16% (27/171) | “[PCP] gave me a lot of specific information about, um, if my husband and I were carriers what that would mean for [infant]…I think she was trying to put our minds at ease by saying what would be the most likely reaction, and she was giving us actual statistics …they helped us visualize what was going on by [PCP] having these statistics to give to us… just focus on what she said regarding the statistics and the likelihood of [infant] actually having cystic fibrosis.” (mother, CF carrier infant) |
| Explanation or clarification of carrier status‡ | 13% (34/270) | 11% (11/99) | 13% (23/171) | “[PCP] just said, ‘[infant] has trait’ and she left out of the room and I kind of thought that was like a new disease because I had never heard of trait.” (mother, SCH carrier infant) |
| Infant is healthy and not sick † | 11% (31/270) | 3% (3/99) | 16% (28/171) | “Well first of all [PCP] said, um, she reassured me that it’s not a health problem, and she said it’s just something that [infant] has that’s a little different from the rest, but it’s not something that poses a great risk to his health. So that was pretty reassuring right away.” (mother, SCH carrier infant) |
| Information on sweat test process‡ | 11% (30/270) | 30% (30/99) | n/a | “[PCP] explained the chloride sweat test to us, but maybe there could be more detailed information on actually how they perform it and, you know, because I think the biggest thing that went through my mind was I was scared that they would, that it would hurt her or it would, you know, involve lots of needles…but I was more concerned about having her tested, you know, would it hurt her, you know, how long would it take, you know, that kind of stuff.” (mother, CF carrier infant) |
| Explanation of NBS process | 6% (17/270) | 7% (7/99) | 6% (10/171) | “We didn’t really know what the newborn screening was up until the point that we found out that there was something that came up, we didn’t still fully understand everything that they were looking for…I mean [PCP] explained that they did it on all babies and it was, you know, just testing but we didn’t really know the detail of it.” (mother, CF carrier infant) |
| Explanation of disease (symptoms) | 5% (14/270) | 13% (13/99) | <1% (1/171) | “I really think that I should have had more information because I felt like, first of all, I didn’t even know what cystic fibrosis was and [PCP] just said “okay, a mutation on his cystic fibrosis gene.” That all sounds really scary…and then, um, really, I think, for me personally, more information would’ve been better as far as what cystic fibrosis is and I think that it would’ve been nice to know.” (mother, CF carrier infant) |
| Information on next steps for parent and infant | 4% (11/270) | 5% (5/99) | 4% (6/171) | “If you’re going to call someone and say that their child could have a serious illness, you know, they want to know the next step as well as what that means to us and our family.” (mother, CF carrier infant) |
| Difference between disease and carrier | 4% (10/270) | 5% (5/99) | 3% (5/171) | “[PCP] just went ahead and explained [trait] to me so, you know, it made it more clear because I was kind of…you don’t really know the difference between the trait and the actual sickle cell [disease].” (mother, SCH carrier infant) |
| Likelihood carriers will have health complications | 3% (7/270) | 0% (0/99) | 4% (7/171) | “Could [infant] get sick? I mean, could he ever, his blood…I mean, anything else could happen to him? Or anything? Yeah, that’s what I wanted to know [from PCP].” (mother, SCH carrier infant) |
*
The abbreviation SCH refers to parents of SCH carriers; the abbreviation CF refers to parents of CF carriers; percents are rounded to the nearest whole percent
†
If content message present, statistically significant correlation with parents’ report of positive reactions (p<0.05)
‡
If content message not present, statistically significant correlation with parents’ report of negative reactions (p<0.05)
§
The word “likely” should be included for CF results only because the infant’s carrier status is probable but not definitive at the time of results disclosure