Championing Safe Sleep Through Research and Education

How can improving safe sleep practices for preterm infants reduce their risk for sudden infant death syndrome?

For Children’s Hospital Colorado neonatologist Susan Hwang, MD, MPH, PhD, seeing a baby sleeping with blankets and stuffed animals is as alarming as seeing a baby in the front seat of a moving vehicle. That’s because unsafe sleep practices have been linked to sudden infant death syndrome (SIDS) and sudden unexpected infant death (SUID). Social norms simply haven’t caught up to medical knowledge around safe sleep, but through several branches of research, Dr. Hwang is working to change this.

Though any child under 1 year old can die from SIDS and SUID, the risk for preterm infants is two to four times higher. The exact cause of the two conditions is unknown, but prior research has indicated a close relationship between sleep practices and both SIDS and SUID. In preterm infants — those born before 37 weeks’ gestation — Dr. Hwang hypothesizes that respiratory and neurologic immaturity may increase risk.

And while providers can’t change the preterm state of babies after they are born, they can identify barriers to safe sleep and implement safe sleep practices in the neonatal intensive care unit (NICU), so parents and caregivers see best practices in action. This is where Dr. Hwang is focusing her research and impact.

Understanding barriers to safe sleep

Dr. Hwang’s research and work around safe sleep in premature infants is investigating the problem from all angles. She’s done past work with the Centers for Disease Control to understand SIDS and SUID from a population health perspective, and now she’s drilling down deeper through a National Institutes of Health-funded study called the Study of Attitudes and Factors Effecting Preterm Infant Care Practices (SAFE-PREP).

“The SAFE-PREP study is trying to identify barriers and facilitators to maternal decision-making around behaviors that reduce or increase the risk for SUID,” she explains. “So, while I focus on safe sleep, we also are asking and following outcomes related to breastfeeding and secondhand smoke exposure.”

The national study currently includes 1,200 maternal-infant dyads from 30 NICUs across the United States. Each family takes a series of surveys: one during their NICU stay, another two to three months after discharge and the last at six months after discharge. These allow researchers to gain insight into the factors affecting decision-making during critical points in a premature baby’s life.

After five years of intensive interviews and ongoing surveys, Dr. Hwang and the SAFE-PREP team are beginning to analyze data and put the pieces together. One of their key findings is that NICUs aren’t always following recommended safe sleep practices (often as a result of medical needs), creating a flawed model for parents.

“We know that what influences parental decision-making among preterm infants is very different from the full-term population,” she says. “These parents are very anxious and nervous about their vulnerable infants and actually engage in unsafe sleep practices because they think it's the safer thing to do for their preterm baby. They also highlight that they have trusted sources of advice that influence their decision-making, including what they see and hear in the NICU, and yet we know that what they're seeing is not really what's recommended.”

From a quantitative perspective, the team has already seen that the adherence to safe sleep practices is far from optimal, but they are still working to understand all the barriers that define the problem. That’s because having a safe place for a baby to sleep isn’t as simple as it might seem.

“To follow safe sleep practices, we need a separate sleep space with the room temperature not being too warm. We also know that breastfeeding lowers the risk for SIDS and SUID,” Dr. Hwang adds. “If we think about the families that can or cannot do that, you can sort of begin to understand how social determinants can impact safe sleep practices.”

Quality improvement in the NICU

Because new parents of preterm infants learn so much about safe sleep in the NICU, Dr. Hwang is targeting research and education efforts at improving sleep modeling among neonatal providers.

This work, which is informed by Dr. Hwang’s barriers research, tests interventions in NICUs to see which tactics improve hospital safe sleep modeling and post-discharge adherence to safe sleep recommendations. The study, called the Smart Preemie study, is just kicking off. Dr. Hwang’s team is designing a variety of technology-based interventions and hopes to implement and test them in 20 NICUs around the U.S. to see how they perform.

Alongside that study, she formed and leads the Data-Driven Engagement of Families to Improve the NICU Experience (DEFINE) Colorado collaborative. The Colorado-based group is following a model for quality improvement that Dr. Hwang led in Massachusetts. Their task is to build and implement a set of criteria for when preterm infants are medically ready to begin safely following sleep best practices — ideally months or weeks before discharge — so that parents can see them in action. DEFINE Colorado has 10 local NICUs on board, helping determine and implement the criteria.

Beyond that, Dr. Hwang is developing educational materials to help preterm infants that account for their increased risk of SIDS and SUID

“We're changing our toolkit because many of the resources that we have to teach parents and nurses about safe sleep are geared toward healthy infants,” she says. “For example, none of the babies in these materials have medical devices on them, so we're creating very NICU-specific materials. We have a preterm infant safe sleep roadmap that goes through the transition of sleep development during the NICU stay, and we've just created a series of very short videos around what sleep looks like for preterm infants during the NICU stay and after discharge home. So, we are really being very, very targeted to the experience of preterm families.”

Through these efforts and the growing list of others, Dr. Hwang seeks to optimize systems that better support parents in engaging in safe infant care practices.

“It takes a village to raise a child, and if you think about other developed countries and why they have lower infant mortality rates, one reason may be that they have a very robust social safety net system that supports infant and family well-being,” Dr. Hwang says. “It’s not just one nuclear family trying to make ends meet to raise this new baby, but truly there is a system that envelops these families and allows them to have the time and resources to care for their baby the best way they can.”