Table 2:

Illustrative quotes regarding informational needs

Participant groupQuote
Pregnant participants“I’d have more questions, more about the breathing problems … what that means, how long the baby would need to be in some kind of care unit. Can I take the baby home, or does it have to stay in hospital for a period of time? What’s the average or usual period of time … how long the period is of these concerns?” — Pr 2
“At first, low blood sugar does not sound scary. But … I’d need more clarification on what does that mean for a newborn?” — Pr 14
“[Hearing about neurodevelopmental outcomes] may or may not change the decision, but at least having, knowing that you made a decision based with as much information as you could possibly have.” — Pr 17
“[Patients] go home and do their own research and then come up with this, then they might want to hear it from the doctor first … rather than looking up something on Google and saying that ‘Oh, now my baby is gonna have, like, learning disability from getting the steroids,’ where you’re misinterpreting the information.” — Pr 20
Obstetricians“I talk about how the benefits would be decreased respiratory distress, decrease in intraventricular hemorrhage, and decrease in needing ventilation, and a decrease in NEC … over 34 weeks, there probably is a higher risk of hypoglycemia” — OB 7
“RDS and requiring oxygen or even CPAP or intubation … and time spent in NICU.” — OB 10
“Low blood sugar, like, that doesn’t really mean as much to [parents] as, like, oh, a small head or … lower test scores. … I think any evidence that there could be harm is concerning to a degree.” — OB 6
“I’m trying not to place too much emphasis on neurodevelopmental problems because it’s very fuzzy” — OB 5
Pediatricians“Hypoglycemia is bad. And that may be a risk for, that may be part of the long-term risks for the developing brain … If you monitor well, it should be preventable, minimized for the most part. … the neonatal or the perinatal brain is very vulnerable to that kind of insult.” — Peds 9
“There is absolutely nothing that proves [association of hypoglycemia and long-term neurodevelopmental outcome]. The only thing that is proven is an association between persistent, symptomatic, severe hypoglycemia and long-term outcome.” — Peds 7
“Long-term neurodevelopmental outcomes are … a very challenging thing to study.” — Peds 1
“We have the same dilemma with postnatal corticosteroids, and we bring it up all the time. It’s out there. It’s in the literature. Someone will Google and find it. And we’ve, in our practice in the NICU, we’ve always been completely transparent. And I think parents understand the — they probably feel more reassured that we talk about it.” — Peds 9
  • Note: CPAP = continuous positive airway pressure, NEC = necrotizing enterocolitis, NICU = neonatal intensive care unit, OB = obstetrician, Peds = pediatrician, Pr = pregnant, RDS = respiratory distress syndrome.