Article Figures & Data
Tables
Characteristics n (%) or median (range) Infant (N = 10a) Gestational age, wk, median (range) 23 (23–26) Sepsis, n (%) 6 (60) Intraventricular hemorrhage, n (%) 4 (40) Necrotizing enterocolitis, n (%) 2 (20) Death, n (%) 3 (30) Parent (N = 16) Mother, n (%) 9 (56) Father, n (%) 7 (44) Age, y, median (range) 26 (19–35) Race and/or ethnicity, n (%) White 5 (31) African American 9 (56) American Indian 2 (13) Level of education, n (%) High school or less 12 (75) Some postgraduate education 4 (25) Annual income, $, n (%) <15 000 2 (12.5) 15 000–25 000 6 (37.5) 26 000–50 000 4 (25) 51 000–75 000 4 (25) ↵a One case included a set of twins.
Characteristics (N = 53) n (%) Attending physician 16 (30) Fellow 5 (9) Social worker 10 (19) Nurse practitioner 7 (13) Registered nurse 15 (28) Race and/or ethnicity White 46 (87) African American 1 (2) Hispanic 6 (11) Sex Male 13 (25) Female 40 (75) - 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) Clinicians perceived parents did not or could not understand prognostic information “My impression of them was that they were in shock. It just seems like nothing was real to them. They seemed in shock. You would tell them something, and you could see that you were telling them something, but definitely the message wasn’t always getting through.” (Nurse, case 1) “I think the staff, generally, here gets concerned if they feel that the plan of care, either that the parents aren’t informed or that the parents don’t understand, which is a different thing and that may not be true, the parents may understand and be choosing differently than we wish they would choose.” (Social worker, case 3) “Even if I tell parents it’s going to take 4 or 5 months of them being in the hospital, it’s very hard to conceive. [The mother is] focusing a lot on small things, and I was telling her today, the sodium being down, 'Well, the sodium is down today, it’s up tomorrow, it’s down the next day.' …I think they’re not concentrating on the big picture because they don’t understand the degree of this, what’s going on. And they’re concentrating on the sodium.” (Neonatologist, case 7) Parents valued consistent therapeutic relationships “I think, to her, the primaries [are] important ‘cause they know [the child]; they’ve been working with her long enough, and they know what she needs and what makes her comfortable.” (Father, case 7) “For the most part, when you get the same nurses all the time that we’re happy with, it’s good. …And they know her. They know she doesn’t like to lay this way or that way…and all the little things about her.” (Father, case 2) “Now he’s on the [other] team, and the advantage of that is that the attending will also be the one that does his follow-ups, so I think it’s good that they get to know him now because that’s who he’ll be seeing with his follow-ups.” (Mother, case 4) Clinical uncertainty forced parents and clinicians to wait and see about the future “We’ll never feel secure until we’re home with him…and probably then won’t even feel secure until he’s bigger. You know? It’s just, it’s very scary. He’s doing well, he’s stable, but to me, that doesn’t mean anything. So, it’s a scary place to be very uncertain. And [there is] nothing that I can do can change it.” (Mother, case 4) “They said it looks pretty good for her, that we have to take 1 day at a time. You never know what can happen. …You get nervous walking back there to see what they’re going to say today.” (Mother, case 1) “They just, you know, they said it’s going to be a rocky road over the next bit of time. So, you know, it’s hour by hour, day by day.” (Father, case 2) “It’s very hard to predict the future. That’s why I try to stay away [from] that. …And I think the fellows, for instance, I was telling them that you cannot apply that. You cannot guess because…kids are miracles walking, grade 4 that you see in the follow-up clinic that are perfect, go to school and learn. So, you can never predict. There are some cases, though, that are devastating.” (Neonatologist, case 1) “There’s always a little bit of uncertainty. You can’t say 100%, ‘I know he’s not going to survive,’ you have to say, ‘I’ve never seen a baby in his condition survive. Even if he did survive, he would have to go through a huge amount, and is it worth putting him through that for, you know, a 1%, or 2%, or 10% chance of survival?’ And that’s hard.” (Neonatologist, case 8)
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Neurologic Outcome After Prematurity: Perspectives of Parents and Clinicians
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