Parental Perspective on Shared Decision-Making of Extremely Premature Infants

When a baby is born far too early, the world of the parents changes instantly. They enter a neonatal intensive care unit, a place filled with machines, beeping monitors, and medical teams who speak a language of probabilities and risks. In these first days, families are often asked to make the most difficult decisions of their lives: whether to fight for a life that might be very short, or to let go to spare the infant suffering. Doctors cannot make these choices alone; they need the parents to act as the voice for their child. This process, where medical experts and families work together to choose a path forward, is called shared decision-making. It is meant to be a partnership, blending medical facts with the family's own values and hopes. But for parents in the middle of a crisis, this partnership can feel overwhelming. They may wonder if they truly understand the options, if they are being heard, or if they are making the right call.

A team of researchers at Nationwide Children's Hospital set out to understand how parents actually feel during this critical time. They focused on the very first week of life for infants born extremely prematurely, specifically those born between 22 and 27 weeks of pregnancy. This is a period of intense uncertainty, where the future is unclear and the emotional weight is heavy. The researchers wanted to know if these parents felt confused or conflicted about the choices they were making, and whether they felt like true partners in the process. To find out, they asked 65 families to fill out a short survey during the second or third week after their baby was born. The survey used a simple four-question check, known as the SURE test, which asks if parents feel sure of their choice, understand the information, know the risks and benefits, and feel supported. A low score on this test would indicate that a parent is struggling with decisional conflict, a state of uncertainty that can lead to regret later on.

The results of this study offer a reassuring picture of how care is delivered in these high-stakes environments. The researchers found that most parents did not feel stuck or confused. When looking at the individual parents who answered the survey, only about 17 percent showed signs of decisional conflict. Even when looking at the family as a whole unit, the number was higher but still a minority, at roughly 28 percent. This means that the vast majority of parents felt clear about their choices, understood the medical information provided to them, and felt encouraged by the medical team. Perhaps most importantly, the study found that the level of confusion did not depend on how early the baby was born. Parents of the tiniest, most fragile babies, those born between 22 and 24 weeks, felt just as supported and clear as parents of babies born a few weeks later, between 25 and 27 weeks. This was a significant finding because the decisions for the smallest babies are often the most complex and carry the highest risks. The fact that the parents felt equally engaged and less conflicted suggests that the way doctors talk to families is working, regardless of the baby's size.

The study also looked at who was feeling the most stress. While the overall rates were low, the researchers noticed a small but distinct difference between the mother who gave birth and the other parent. The birthing mother was more likely to report feeling some level of conflict or uncertainty compared to the non-birthing partner. This makes sense when considering the physical and emotional reality of the situation; the mother is simultaneously recovering from childbirth while trying to process complex medical information and make life-altering decisions for her child. The other parent, while deeply involved, does not carry that same physical burden at that exact moment. The study suggests that medical teams might need to pay extra attention to the birthing mother's readiness to engage in these heavy conversations, perhaps by allowing more time for her to process or by ensuring the other parent is fully included as a partner in the decision-making process.

Despite the high levels of engagement, where nearly 80 percent of parents felt they were active participants and shared responsibility with the doctors, there was one surprising detail. More than half of the parents said that their personal religious or spiritual beliefs did not seem to influence the care they felt was right for their baby. This was unexpected, as many previous studies have suggested that faith and hope are central to how parents navigate these crises. However, the researchers noted that a majority of parents did say they were asked about their beliefs by the medical team. It is possible that because these beliefs were acknowledged early on, the care plans were already aligned with what the families wanted, leaving no room for conflict. Or, it may be that in the face of such immediate medical reality, the practical needs of the baby took precedence over abstract beliefs for many families.

The researchers were careful to note the limits of their work. The study only included parents who could read and speak English, which means the experiences of families facing language barriers were not captured. It is well known that language gaps can make communication much harder and increase the feeling of being left out. Additionally, the study was relatively small, and while it found no difference between the two groups of babies, a larger study might find subtle differences that this one missed. The researchers also pointed out that the survey tool they used, the SURE test, has not been fully tested on NICU parents before, so it might not catch every nuance of their emotional state.

Ultimately, this study suggests that the current approach to talking with parents in the neonatal intensive care unit is effective for most families. The high rates of engagement and the low levels of confusion indicate that when doctors take the time to explain the situation clearly and listen to the family, parents can navigate these terrifying first days with a sense of clarity and partnership. The findings do not mean that the decisions are easy or that the stress is gone, but they do show that the process of shared decision-making is successfully supporting families through the most difficult moments of their lives. The work highlights that the quality of the conversation matters more than the severity of the baby's condition, offering a path forward for improving care even further by ensuring that every parent, regardless of their background or the size of their baby, feels fully seen and heard.