Building Agency and Self-Efficacy: A Vital Opportunity to Reduce Sleep-Related Infant Deaths

In the past decade, overall infant mortality rates have gone down. Yet, nationwide sleep-related infant death rates have stagnated, and the rate of accidental suffocation or strangulation in bed has actually increased. Changing these statistics requires more than teaching families about safe sleep guidelines; it requires concerted efforts to empower families as champions for their children’s health and well-being.

“We need to think about safe sleep improvement in terms of supporting and building parents’ agency—their sense of competency and control—in a purposefully positive way,” says national maternal and child health expert Milt Kotelchuck, PhD, MPH, who serves as a Professor of Pediatrics at Harvard Medical School and Mass General Hospital for Children. “That means partnering with families to build their capacity. We can do this by avoiding situations that make parents feel judged, talked down to, or overwhelmed, and instead focusing on opportunities to help them feel like they are in control of their child’s health.”

Kotelchuck partnered with NICHQ on the Collaborative Improvement and Innovation Network to Reduce Infant Mortality (Infant Mortality CoIIN)*, which included a targeted focus on reducing sleep-related infant deaths. Now, four states are building off their successes and lessons-learned through the Safe Sleep Infant Mortality CoIIN, which aims to improve infant safe sleep practices and reduce disparities in infant deaths. Promoting parent/caregiver agency and self-efficacy is central to their efforts.

“Teaching families about safe sleep practices is one way to build self-efficacy, but it’s not enough,” says NICHQ Executive Project Director Pat Heinrich, RN, MSN, CLE, who leads NICHQ’s work on the Safe Sleep CoIIN and NAPPSS-IIN. “Really building self-efficacy and positive agency depends on engaging in authentic conversations with families about safe sleep—conversations that respect and engage with their lived experiences and opinions, and acknowledge and elevate them as experts in and advocates for their children’s health.”

Understanding how to support agency can help health care professionals transform their conversations with families and tap new and innovative approaches. Below, Kotelchuck provides six practical opportunities, drawing on more than three decades of experience working in maternal and child health quality improvement.

1. Change the way we talk to families about safe sleep

All conversations about safe sleep should start from a place of respect, explains Kotelchuck. “I think sometimes, unintentionally, we promote a message that says, if parents aren’t automatically practicing safe sleep, they aren’t being good parents. This pejorative message makes families feel inept and can cause them to lose trust in us. And that’s the opposite of building agency.”

Instead, begin conversations by empathizing with parents’ competence and resiliency. Talk to families about all the other areas of agency they have, such as providing their child with food, reading to their children, and breastfeeding. This is especially important for families facing negative social determinants that may make them feel less in control, such as navigating unstable housing or employment. Strengths-based approaches, like motivational interviewing, can reaffirm parents’ belief that they have control over their children’s health and well-being, which in turn builds positive parental agency.

2. Build on the positive, address the negative

“One of the best ways to build capacity is to create opportunities to enhance parents’ feelings of control while simultaneously addressing what makes them feel powerless,” says Kotelchuck. Along with promoting strengths-based conversations, Kotelchuck recommends talking to parents about what makes them feel good—whether that’s reading a book, going for a walk or taking a yoga class—and finding ways to encourage those behaviors.

Then, at the same time, address sources of strife (e.g., depression, substance dependency, and the impact of trauma) and connect families with supportive interventions. Talking to families about contingency planning—such as what they would do if they became homeless or if they lost their job—is also vital for capacity-building, says Kotelchuck. “Rather than ignore their reality, we need to give families skills for dealing with the way the world really is for them. This not only affords them control, but it also shows them that we are their allies and are genuinely interested in partnering with them to manage the real life problems they face.”

3. Encourage self-learning

Self-learning is a powerful path to agency. When parents ask questions and engage in individual research, they walk away feeling prepared, capable, and empowered. After all, they took initiative; they found the answers; and now, because of their actions, their family will be safer. Health professionals can support self-learning by connecting parents with trusted sources of information outside of the clinical setting, such as parenting groups that practice safe sleep and online forums monitored by a health professional.

4. Focus on fathers

“It’s important to activate all caregivers around safe sleep, but often our strategies mainly target mothers,” says Kotelchuck. “This has created a big opportunity to build agency in dads, specifically.”

Kotelchuck recommends empowering fathers by identifying specific areas or roles that they can own, such as being in charge of safety in the house. Then, develop father-focused campaigns that disseminate this message in homes, hospitals, and communities. The Arkansas Safe Sleep CoIIN team is one example of a successful father-focused campaign: they partnered with an alliance of African American fraternities, taught the fraternity members about the importance of safe sleep guidelines, and empowered them to lead trainings for fathers in their communities. You can learn more about their work and how to promote it in your community here.

5. Promote paid family leave

Taking care of a newborn while also working 40-hours (or more) each week doesn’t build agency. Instead, it leaves parent under-resourced and overwhelmed. Paid family leave is a critical opportunity to give more families the time to create a safe, stable and nurturing environment for their baby. This could especially benefit families with low-incomes who cannot afford to take unpaid leave even if eligible for it. 

“By supporting parents’ agency, especially parents who cannot afford to take unpaid time off, paid family leave may also address the causes of increased SUID rates in under-resourced communities,” says Kotelchuck. “Every state that passes it will positively affect every birth outcome in their state.”

6. Build community agency

Strengthening the capacity of communities as well as parents is important, says Kotelchuck. After all, communities can play a vital role in raising awareness about safe sleep and developing programs and policies that empower parents to follow safe sleep guidelines. The Mississippi Safe Sleep CoIIN has capitalized on this approach by partnering with the city of Jackson to create a citywide safe sleep campaign. By collaborating with individuals across the community—doctors, store owners, daycare staff, restaurateurs, city officials—, they’ve created a citywide collective agency focused on caring about the health and well-being of their community’s babies.

The more parents who are empowered to practice safe sleep, the more babies who will sleep safely. “When combined, these individual agencies will become community agency and political will,” says Kotelchuck. “As more people take ownership of this because they feel it is important, there will be more opportunities to create community, state, and federal programs centered on keeping babies safe.”

Interested in more strategies for supporting safe sleep? Recently, a cohort of hospitals came together to share successes and lessons learned. Here, find their highest-rated strategies and change ideas, all of which reflect early successes in their work.

*The Infant Mortality CoIIN was funded by the Health Resources and Services Administration Maternal and Child Health Bureau (HRSA MCHB)