Table 5.

Positive and negative parental reactions resulting from NBS results disclosure experience ^*

Reactions	Total	CF	SCH	Quotation
	% (n)	% (n)	% (n)
Positive Emotional Reassured, Relieved Comforted, Calm, Happy	31% (84/270)	36% (36/99)	28% (48/171)	“And [PCP] just really comforted me and let me know and rest assured me, it’s okay, and not to be concerned, and it was so meaningful, ‘cuz that’s how he is, and then when he gave me all the information… that was good too so, I just felt really reassured.” (mother, SCH carrier infant)
Positive Cognitive Understood result, Trusted provider	8% (22/270)	7% (7/99)	9% (15/171)	“Um, well [PCP]…she broke it down into a picture and illustrated for me, which, um, I understood that better. You know, I got a better understanding.” (mother, SCH carrier infant)
Negative Emotional Scared, Anxious, Shocked, Surprised, Miserable, Upset Stressed, Frustrated	26% (69/270)	48% (48/99)	12% (21/171)	“Um, it was kind of a – a scary, unsettling moment then. Um, because I knew that it was a genetic disorder, didn’t know too much past that…it still left that uncertainty and – and worry in my mind right off the bat.” (mother, CF carrier infant)
Negative Cognitive Confused, Thought infant had disease, “My mind went blank”	13% (35/270)	22% (22/99)	8% (13/171)	“You know when [PCP] said something about (the sweat test), she said, ‘You should go do it’ and then she started explaining about what it was and I…my head went blank, seriously. I was like, ‘Oh, my God, something’s going on. I got to go do this and oh, you know when should I do it?’ and ah, honestly I didn’t really even listen to her, you know. And then I’m like, ‘Oh, my God, something could be wrong with my infant’ …I didn’t hear a thing.” (mother, CF carrier infant)
Negative Physical Crying, Racing heart, Sleepless nights, Sick	4% (11/270)	10% (10/99)	<1% (1/171)	“I kind of lost it when [PCP] said cystic fibrosis and I guess I didn’t understand what a carrier was at that time and I told my husband, I was pretty hysterical…[PCP] knows I’m a pretty sensitive person so I pretty much lost it on the phone. She was very understanding and was open to any questions that I had…” (mother, CF carrier infant)
Negative Social Changed PCPs, No available social support	2% (6/270)	5% (5/99)	<1% (1/171)	“Yes, so we’ve actually changed PCPs since then because of the situation that’s happened from that [NBS] screening…I think, you know, the part that I feel really negative about the newborn screening, I think a lot of it was to do with my PCP herself and how it was handled.” (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