Call me biased, but I think is a game-changer. (One of the authors is my wife and colleague, another is a friend and colleague in the NICU at Sainte-Justine, and the others are my friends and colleagues also… just so you know). (Also, just so you know, I was not involved in this study in any way, apart from knowing about the study going on; I did review the final manuscript for language issues and suggest a few changes in wording (all the authors are francophone but speak and write excellent English) but that is my only involvement in this).
What they did was to approach mothers (who might have had their partner with them) within 72 hours after an antenatal consultation from the neonatal team for threatened preterm delivery before 32 weeks. They asked them to fill in a questionnaire, which was intended to find out what the mothers’ expectations and satisfaction with the antenatal consultation were.
The questionnaire is presented in an appendix (in an English translation).
Why did they do the study? There are many guidelines which describe what information should be transferred to parents anticipating a preterm delivery. Most of them concentrate on what information should be transferred to the parents, sometimes with a list of all the horrible things that can happen to an extremely preterm baby that parents should be informed about. Is that what parents want from their antenatal consultation? Few studies have asked that question.
Unlike many studies in this domain, the sample size was substantial, 229 mothers completed the survey instrument, they were hospitalised in one of 3 participating university teaching hospitals in Québec.
A few highlights from the results:
The women surveyed wanted information about prematurity, but also information about their role in the NICU, about feeding strategies, visiting schedules, and so on.
The majority were satisfied with the consultation, but only 57% reported getting the right amount of information, 39% felt that they received too much information about prematurity. Most (89%) were reassured, although 23% were worried by the consultation which is more than 100%, so some were both. More than half felt better prepared for their role as mothers in the NICU (58%), and many (56%) wanted a follow up meeting with the neonatologist.
In open-ended questions,women explained why they wanted a follow-up consultation: (1) they felt too stressed during the initial consultation; (2) they felt unprepared to ask questions; or (3) they did not remember all the information provided.
You will see in the methods that we do not have a decision aid or printed information sheet that we routinely give out. Although some studies have reported that decision aids are useful, the main effect that has been shown in publications is that information transfer may be increased, for example, one decision aid was considered potentially useful because “women recalled more disabilities”. In that study the long-term complications are grossly exaggerated (for a 23 week infant the sheet states “if the baby survives, 2 out of 3 may never be able to walk, talk, see, hear”); recalling more complications certainly does not mean that the parents are more likely to find the consultation useful, that it helps in decision-making, or that better decisions are taken for the babies, especially if the complications are exaggerated.
I think this study is a game-changer as I said, because we should surely be adjusting our approaches to the individual mother (and father) to fulfill their wishes for the consultation, and not just to have a decision about intensive care versus comfort care, which has been the focus of the position statements I mentioned. We should be trying to personalize the encounter in order to give them the amount of information they want (either to make the best decision, or to be adequately informed if there is no real decision to make). From the results of this study we should also be giving information about the local NICU practices, about the mother’s participation in feeding, and discuss how to be a parent of an NICU baby, and we should be providing an easy way for the family to get a follow up visit; improvements which could help us to better address the needs of our families. Whether the same results would be found elsewhere is unclear, but having worked in other parts of North America, I don’t think our parents are much different to parents in southern California or Alberta.
The article ends with this statement :
Current investigations mainly concentrate on optimizing and standardizing information transfer regarding prematurity outcomes, and women want personalized and individualized information. Future studies should investigate how parents want to receive this information. The actual format of the antenatal consultation might not be ideal for these information needs. It is possible that some parents may prefer an interactive Web site, a group meeting with other parents, or to meet ex-NICU parents.
Interesting ideas, but I don’t think those alternatives should be alternatives, rather additional resources for parents, an in-person meeting with the neonatal team would still, I think be essential, but perhaps not, it is something that could be studied prospectively.