This article was originally published by Education Development Center (EDC) on edc.org.
In 2020, there were nearly 3,400 sudden unexpected infant deaths (SUID) in the United States. SUID includes sudden infant death syndrome (SIDS), accidental suffocation and strangulation in bed, and deaths from unknown causes. As with most public health concerns, certain communities are disproportionately impacted by SUID—for American Indian, Alaska Native, and Black families, rates of SUID are double what they are for White families.
In this roundtable, Clare Grace Jones, a public health and safety expert at EDC’s Children’s Safety Network, discusses the need to consider health disparities and culture in safe sleep initiatives with Bonnie Kozial, manager of the American Academy of Pediatrics’ Council on Injury, Violence, and Poison Prevention, and Terri Miller, a senior program supervisor for Safe Infant Sleep at the Georgia Department of Public Health. The following transcript has been edited for clarity and length.
Clare Grace Jones: What concerns you about the disparities in safe sleep outcomes for different populations in the United States?
Bonnie Kozial: We have a disparity problem overall with health outcomes. And the disparities in SUID rates is just where it begins for kids. There’s nothing physiologically different about Black babies or Brown babies or Native American babies. This is a problem that we’ve created through many generations of systematically advantaging some communities and disadvantaging others. Undoing that is not an easy task, but it’s critically important to reducing those overall disparities in health outcomes.
Terri Miller: In Georgia, rates of Black infant death are about three times higher than White infant death. And as we have dug down into those numbers a bit, we have realized that there are community factors that contribute to this disparity. The type of medical access people have, for example, creates a situation where you may have larger disparities. It isn’t just that we need to reach one group of people with messaging on their individual behaviors. It’s what we can do as a community to address all the other factors that are contributing to our infants dying.
Kozial: We have to put community and societal level changes in place, right? We have to understand that the higher rates in certain communities aren’t a reflection of any less fitness as parents, any less love for their babies. In order to start breaking that down, we need to put the systems in place that we lack. So, ideally, if we could provide paid parental leave to all parents, if we could provide lactation support and high-quality, affordable, accessible childcare, if all families felt that their housing situation was stable and their food and nutrition situation was stable…I think that would go a long way towards addressing the issue, even if those fixes are not speaking directly to sleep practices.
Jones: So to that point: We know there’s a huge cultural element to infant safety. How do we advance evidence-based practices while also making space for diverse cultural beliefs about how to best care for infants?
Miller: We try to frame things as different customs and traditions within families, as opposed to cultural differences, because so many of our disparities occur along racial lines. We talk about what’s normal within each family instead of using that idea that there are huge differences in how we think about infant safety among different cultures. We go with the idea that infant safety and the concern for the well-being of an infant is a universal shared belief. One thing that has worked for us is helping people become safe sleep trainers within their own communities. So the people that are speaking to the members of a community live there too. We create evidence-based safe sleep information to give to the trainers, and they can then utilize it however they see fit within their communities. We leave it to them to be the messengers to their own communities.
Kozial: We use focus groups to inform our work with different populations and rely on the themes that emerge from those. So the headline we use for Native American families is “We’ve always raised our babies our way.” We feel that message respects the traditions and the elders of the community, which is very important. For African American families, we have a poster that shows a multigenerational family. We want to make clear that we are respecting the culture. We’re not looking to undermine anything that you learned from your mom or your grandma—we want to build upon it and bring it into a new age.
Miller: Following on that—we also keep everything very positive. For example, we have a brochure that presents room sharing as best for baby, and in that piece we talk about comfort bonding and ease of feeding at night. We don’t tell people what not to do.
Jones: One state in our Child Safety Learning Collaborative was concerned about consistency in safe sleep messaging. So, they conducted an environmental scan of their programs, and they met with program coordinators to learn about messaging to priority groups. Then they interviewed staff at various groups across their state who were working directly with populations that were experiencing disparities. We talk a lot about involving nontraditional partners in communications and messaging work, and I think this state has done it very well. How do you two engage and elevate the voices of communities that are most impacted by SUID?
Kozial: In 2021 and 2022, we had a project called Community Partnership Approaches to Safe Sleep in five cities across the U.S. The program paired a community-based organization with a hospital-based injury prevention program. The idea was to rely on credible, trusted sources of information when talking to communities about safe sleep. Chicago was one of the five sites. They used existing GIS data to map exactly where babies were dying in the city. Then they worked with their partner, Family Focus, to do big, positive community events in those areas. Family Focus had deep roots in the community. They were known to the residents. And one thing they did was to put on community baby showers where families would get a kit with a crib, a sleep sack, a pacifier, and a book to help celebrate the new arrival. It was a really beautiful implementation because it was the community doing it for the community.
Miller: We invited expectant moms and their families to join us in our study on safe sleep. Families would do a pre-survey, take a safe sleep class, and complete a post-survey. Then we invited them to meet with us a few weeks after the baby was born. We just wanted to learn how their intentions about practicing safe sleep matched up with reality. It was valuable for us to have a frank discussion with new parents, to give them a safe place to communicate with us.
Jones: It sounds like you also used that open line of communication to normalize expectations around safe sleep. Newborns don’t usually sleep through the night! That’s just not people’s typical experience. But it leads me to the next question: What practices or policies can we implement that will improve safe sleep outcomes?
Miller: To make progress, we have to start looking at safe sleep in a more holistic way. We recently did a huge hospital-based campaign in Georgia. All 78 of our birthing hospitals participated in education on safe sleep policies and began to distribute take-home educational materials. Everybody wanted to see a massive reduction in SUID. But the reality is that the number of SUID deaths didn’t fall all that much. However, when we looked at our Pregnancy Risk Assessment Monitoring System (PRAMS) data, we saw a major impact. We saw a 30 percent increase in babies most often being laid on their back to sleep. So we felt confident that the program was changing knowledge and practice.
Kozial: At the AAP, we are trying to help pediatricians think about safe sleep as a conversation, rather than a set of recommendations. The goal is for families to tell you the truth. So while pediatricians have an obligation to explain best practices, they should also learn how to better engage families in conversations about safe sleep. Learning to ask, “How does this look in your house?” and “What are some strategies that you could put in place to make it easier to follow recommendations?” can make a big difference.
Jones: All of us doing this work want to feel like we are making progress against SUID. Do you feel hopeful?
Kozial: I do. I feel like as a community and a society we have a better understanding that SUID prevention isn’t just about what the family is doing. It’s about broader societal issues, too. We have to build a society that cares about families, that cares about babies, and that is willing to chip away at those stressors that families face.
Miller: I’m always hopeful. I couldn’t do this work if I wasn’t.