TABLE 3

Theme 1: Parents and Clinicians Discuss and Value Prognostic Information Differently From Each Other When Considering Care Decisions for Infants

Parent discussion of prognosis
 “That it is a hard road. It is a journey. And she could have a point where she just goes downhill, which, that’s okay. She [the clinician] tells us the outcome, what to expect. From her, you know it’s going to be a hard road, you know that this isn’t going to be easy, and she believes that [the child]’s going to make it.” (Mother, case 7)
 “I can’t get cocky, and be like, 'This is going to be fine,' because whatever is going to happen is going to happen, no matter how I feel. I realize that. I don’t have control over what’s going to happen to her.” (Mother, case 2)
 “I’m just going to keep the faith and keep praying that what’s supposed to happen is going to happen. I know my little girl is going to be here. I’m just hoping my little girl continues her fight and she wins. Regardless of how everything looks to the naked eye, my baby girl is fighting. You hear me?” (Mother, case 3)
 “[I hope] that she can catch up with the babies her age. Some babies catch on; some babies take longer than others. And just, that’s it. Basically, ain’t nothing really.” (Mother, case 6)
 “I know they’re [the medical team] here to do what they can, but deep down, He’s [God] the only one that can save her. I just left everything in His hands from here on out because whatever happens, happens. But I feel really good that she’s going to come home in December. She’s going to come home.” (Mother, case 9)
Clinician discussion of prognosis
 “She may not hear, she may not see, she would end up with cerebral palsy more than likely, or she would not be able to move at all. He [the neonatologist] gave them the worst possible scenario. He gave them percentages with the kind of brain damage that she had. …I think he said somewhere in the 70%–80% would have severe neurologic deficits.” (Nurse practitioner, case 7)
 “It’s a combination of things, I guess. Twenty-two to 23 [weeks’ gestational age] under the best of circumstances have a difficult time. The mortality is high, and the side effects are also high, a 22- to 23-weeker with a grade IV bleed, hypotension requiring dopamine, epinephrine, vasopressin, hydrocortisone… I think it puts that child at, the chance[s] of that child having a normal or near-normal neurologic outcome are dismally small…30% mortality rate in that group here.” (Neonatologist, case 1)
 “When some of these babies have bilateral grade 4 bleeds, they have no hope of having any kind of real quality of life, and we know this, the literature supports this. One hundred percent of kids with bilateral grade 4 bleeds long-term don’t do well.” (Neonatologist, case 6)
 “I just hope that [the child] continues on as well as she has. I mean she’s really almost…I hate to say, ‘miracle baby,’ but you know, really, I mean, from what the anticipated outcome was, she’s really exceeded a lot of expectations.” (Social worker, case 8)