Community Conversations and Caregiver Connections

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Introduction

This summary outlines key information from a webinar focused on ending infant sleep-related death by building a community of pediatricians educated about the death review process and prevention outcomes. The project is funded and collaborates with the Texas chapter of the American Academy of Pediatrics to create a webinar series specifically for physicians to understand the child death review process, how to access and use the data, and how to develop prevention programs. The session featured insights from local experts involved with the Harris County Child Fatality Review team and the Center for Disease Control (CDC) grant for community outreach.

Project Goals and Context

The primary goal of the project is to reduce infant sleep-related deaths by empowering pediatricians and other professionals with the knowledge and tools to implement prevention strategies based on data. The project seeks to create a community of educated pediatricians dedicated to this cause. The webinar series is a key component of this effort.

Definitions and Causes of Sudden Unexpected Infant Death (SUID)

The session began by clarifying definitions and acronyms commonly used in this field. Sudden Unexpected Infant Death (SUID) encompasses several causes, including:

• Sudden Infant Death Syndrome (SIDS): A diagnosis given after a thorough investigation fails to explain an infant's death.
• Suffocation/Asphyxiation: Can result from choking on objects, overlaying (a caregiver accidentally suffocating an infant while sleeping), strangulation by cords, rebreathing of exhaled gases (often when placed prone), neck compression, or wedging/entrapment between objects like a mattress and bed frame.
• Injury/Trauma: Intentional or unintentional injuries.
• Genetic Causes.

Epidemiology and Data Insights

A significant historical shift occurred in the mid-1990s with the Back to Sleep campaign, which advocated placing babies on their backs. This campaign, supported by national organizations and the American Academy of Pediatrics, led to a huge decline in SUID rates. However, over the last 20 years, these rates have become stagnant, highlighting the need for new strategies.

National statistics indicate that certain minority groups have higher infant death rates related to SUID and SIDS. Specifically, American Indian/Alaskan Native families and non-Hispanic Black families show higher SUID death rates. This trend is also observed in Harris County, Texas. Texas's SUID rate is around 87.7 per 100,000 live births. Harris County, being a large county, is comparable in size to smaller and mid-sized states.

Data from the local Harris County Child Fatality Review team's decade report revealed that almost a third of cases reviewed were infant sleep-related deaths. When looking at infants 12 months and younger, almost 80% of deaths in that first year of life were sleep-related, highlighting a tragic loss from preventable causes. Sleep-related deaths are most common in infants aged one to four months, identifying this as a critical period for prevention messaging and follow-up.

Harris County statistics by race show that Black babies are two times more likely to die from something sleep-related than their white counterparts, indicating significant disparities. These disparities are linked to an increased prevalence of known risk factors associated with low socioeconomic status, such as unemployment, housing instability, and intimate partner violence. There is also variation in sleep practices, with parent-infant bed sharing and the use of soft bedding being common among Black families, based on local data. Data from 2016 also showed an increased prevalence of Black babies not sleeping on their backs.

To drive prevention strategies, data from the review team has helped identify a "top 10 list of SUID zip codes" in Harris County. This geographic data allows for targeted strategies with providers, professionals, and community agencies located in or near these high-incidence areas.

Accessing Data and Resources

Data like that presented is available for other areas and regions. Recommended resources include:

• Local and state health departments.
• CDC Wonder, a database that collects birth and death data by state and region, available for free. A previous webinar provided a walkthrough on accessing and using this database.
• The National Center for Child Fatality Review and Prevention, a robust resource offering training for team members, education, facts, figures, and staff training.
• Local Child Fatality Review teams, which can provide SUID data for a specific region. Information on joining a team or finding regional teams in large states like Texas is available.

Partnership Development

Developing partnerships is critical for this work. Key tips for successful partnership development include:

• Establish mutual trust and respect.
• Engage early: Involve community partners from the start of program planning so their input is integral.
• Be transparent: Be open about goals, expectations, limitations, and financial resources, ensuring equitable sharing.
• Share decision-making power and responsibilities.
• Use culturally competent approaches: Understand the community's cultural context, partner with leaders knowledgeable about community values and needs, and design culturally appropriate interventions.
• Tailor communications: Use language, media, and messaging that resonates with the community, addressing language barriers and health literacy.
• Leverage community strengths (asset mapping): Identify and build on existing resources like local health workers, churches, and community centers. Community health workers are particularly helpful in bridging the gap between healthcare and the community.
• Build sustainable long-term relationships: Trust takes time; engage continuously with partners beyond short-term projects.
• Capacity building: Support training and development of local stakeholders to sustain programs after the initial partnership ends.
• Multi-sector collaboration: Engage diverse stakeholders, including local government, schools, faith-based organizations, and businesses, to broaden impact.
• Integrated services: Link maternal child health services with other community resources like housing, nutrition, and education to address social determinants of health holistically.
• Be data-driven and evidence-based: Use a community-based participatory research lens, involving community members in data collection, using data to guide interventions, monitoring/evaluating programs, and sharing findings with partners to adapt programs. Community input is crucial on how best to share information.
• Address barriers to access: Reduce financial barriers (funding options, sliding scale fees) and make services easy to access (convenient locations and times).

Examples of potential partners include

• Healthcare systems/birthing hospitals: Can use case review data to improve prevention efforts in perinatal settings. Collaboration with OB partners is important for early education.
• Home visitation programs: Nurse or community health worker-driven programs that can provide education, correct practices, and assist families with barriers and safe sleep environments. They often have established rapport with families.
• Data-driven self-identification: Sharing data like the "top 10 zip codes" can prompt agencies and individuals in those areas to reach out and partner.
• Fatherhood initiatives: Including fathers in education is critical and supports bonding.
• Product manufacturing (aspirational).
• Housing systems: Including apartment communities, housing authorities, shelters, and places where transient families may lack a safe sleep environment.
• Common gathering locations: Community markets, flea markets, laundromats – places where families frequent, suitable for passive education like posters.
• Peers: Families who have experienced loss or a close call are highly trusted and impactful advocates.

Key Safe Sleep Recommendations ("ABCs")

The fundamental safe sleep recommendations include the ABCs of safe sleep:

• Alone: Baby sleeps alone.
• Back: Baby sleeps on their back.
• Crib (or other safe surface): Baby sleeps in a firm, flat, level surface covered with a fitted sheet, such as a crib, bassinet, or pack and play.
• The baby's sleep area should be free of chemicals and other hazards, including exposure to smoking, vaping, alcohol, and tobacco.
• Avoid overheating: Ensure the baby's head and face are not covered while sleeping.

Addressing Common Misconceptions

Many misconceptions exist about safe sleep practices. Addressing these requires understanding caregivers' perspectives and providing evidence-based responses. Common misconceptions and responses include:

• "I would wake up if I rolled over on my baby" (related to co-sleeping/bed sharing): This is not necessarily true; exhaustion and sleep can reduce the ability to arouse easily.
• Concerns about bed sharing: Beyond overlaying, risks include soft bedding, rebreathing air, wedging, and overlay. Data shows infants who bed share have a 2.88 increased chance of SIDS.
• "Just as many babies pass away in their cribs as from bed sharing": This is false; there is no evidence that bed sharing is safe, and multiple risk factors exist in an adult bed.
• "Babies sleeping on their back can throw up and choke": Babies sleeping on their back are more protected against choking on vomit than those on their stomach. The orientation of the trachea (airway) and esophagus (food passage) means vomit tends to pool in the esophagus and drain away from the trachea due to gravity when a baby is on their back.
• "Babies will get flat spots on their head from back sleeping": This concern, potentially leading to helmet use, can be addressed by recommending supervised tummy time. Tummy time strengthens neck, shoulder, and back muscles, helping prevent flat spots and allowing the baby to learn to lift their head. It's also a bonding opportunity. Tummy time should begin soon after hospital discharge, starting with short periods and increasing incrementally.
• "My baby sleeps so much better on her stomach": While this may feel true, evidence shows that sleeping on the back is much safer. Prone or side sleeping increases the risk of rebreathing expired gas (CO2) and increases the baby's body temperature, which is a risk factor for SIDS.
• "Sleeping in a car seat or swing is fine if the baby falls asleep": Products with incline, like car seats or swings used for sleep outside of travel, are unsafe for infant sleep. They can put the baby in a chin-to-chest position, which can restrict the airway, especially as infants lack head control. A retrospective study of deaths reported to the Consumer Product Safety Commission found that many infant deaths in sitting and carrying devices occurred in car seats, slings, swings, bouncers, and strollers. There have been national recalls of inclined infant sleepers.
• "Sleeping elevated reduces GE reflux": Elevating the head of a crib is ineffective in reducing GE reflux and is not recommended. This practice is sometimes seen in hospital settings like NICUs, highlighting the need for collaborative efforts to model safe sleep practices even there, recognizing that hospital babies are monitored while home babies are not.
• "Don't wake a sleeping baby": While understandable, inclined sleeping positions are a danger, and safety should be prioritized. When practical, a sleeping baby should be moved from an unsafe position (like a car seat) to a safe sleep surface (crib, bassinet, pack and play).
• "My baby's not impacted by people smoking around them": This is false; smoking has physiological effects on the baby, including increasing the risk for preterm birth and low birth weight, both SIDS risk factors. Secondhand smoke settles on linens and fabrics in the home. Strategies to mitigate exposure include changing clothes after smoking and potentially having grandparents care for the baby at the parent's home.
• Putting stuffed animals, toys, or extra items in the crib: The crib should be kept clear, flat, and firm, with only a fitted sheet. These items are more for the parent than the baby, especially in the first few months when vision is blurry. Prioritize safety and hold off on decorations until after the first year.
• "Babies need to be swaddled," often implies using a blanket: There is no evidence that swaddling reduces the risk of SIDS. There is a high risk of death if a swaddled infant rolls to the prone (stomach) position. Blankets are considered suffocation hazards once infants develop purposeful movement and can roll.
• Using a blanket because the baby will be cold: Infants typically only need one layer more clothing than adults. Sleep sacks are recommended as a safe alternative to blankets for swaddling, as they are secured with velcro, zippers, buckles, or snaps.

Additional Protective Factors

Certain practices are associated with a reduction in SIDS risk:

• Keeping up with well-child visits and immunization schedules.
• Breastfeeding.
• Prenatal care.
• Offering a pacifier once breastfeeding is well-established, as sucking helps keep the infant aroused and out of deep sleep.

Barriers to Practicing Safe Sleep

Barriers can be personal/family, social, or related to media/marketing.

• Personal/Family Barriers: Influence of others, contradictory cultural/family beliefs, lack of other strategies for sleep, belief that co-sleeping helps with bonding. Intervention strategies include spending time to understand the caregiver's perspective, using motivational interviewing, educating the entire family (including extended members), beginning education during pregnancy, and helping families develop new strategies.
• Social Barriers: Language differences, lack of skills/support, misinformation, varying perspectives from agencies, lack of resources. Intervention strategies include using the family's native language, using concise terms with pictures, collaborating with other organizations for consistent messaging, and providing resources for safe sleep locations and other services.
• Marketing/Media Barriers: Trends created by manufacturers and advertised (e.g., on social media like TikTok), lack of knowledge about the impact of SUID, shows/photos highlighting unsafe sleep environments (e.g., nursery makeovers with unsafe cribs). Intervention strategies include sharing statistics, facilitating safe storytelling of real experiences, and advocating for transparency in marketing and media.

Provider Communication Strategies ("Let's Talk"): Providers can use the "Let's Talk" approach developed by the Texas Department of State Health Services, guiding discussions with parents based on themes of Time, Setting, Knowledge, and Culture.

• Time: Consider how much time is available and when the conversation makes sense (e.g., during a clinic visit or through other means).
• Setting: Consider the environment; intimate one-on-one conversations or group settings can be effective. Group settings may encourage parents to voice concerns and barriers.
• Knowledge: Connect recommendations to the "why" behind them to help shift understanding. Emphasize multiple sources and multiple times hearing the information.
• Culture: Recognize that cultural reasons may influence practices like bed sharing. Share information and respect that families will ultimately make choices, but strive to provide the information in a way they receive it. Consistency from multiple sources reinforces the importance.

The DSHS "Let's Talk" caregiver plan is a tool to help walk parents through their needs, identify barriers, work together to overcome them, and facilitate follow-up, especially in the first four to six months.

Resources

Several resources are available to support safe sleep education and practice:

• NICHD (National Institute of Child Health and Human Development): Offers diverse resources in multiple languages, including materials for grandparents and other caregivers, with good pictures and images.
• Safe Kids Worldwide: Provides checklists and tip sheets with more pictures than words, available in English and Spanish. They also host a Safe Sleep symposium.
• National Center for Education and Maternal and Child Health: Offers free online learning modules for health professionals, community health workers, and home visitors focused on safe sleep and breastfeeding.
• First Candle: A great resource for educational material and information on programmatic efforts nationwide.
• JPMA (Juvenile Products Manufacturers Association): A source for determining if a sleeping device is approved or safe.
• American Academy of Pediatrics (AAP): Provides great resources on their website.
• Texas Department of State Health Services (DSHS): Offers significant resources, including the "Let's Talk" curriculum and a train-the-trainer program.
• Texas Children's Hospital Center for Childhood Injury Prevention (in Houston/Harris County): Provides community education and limited pack and play distribution.

Specific Product Discussions

• Side sleepers attached to adult beds: Are not safe if the side comes down, as infants can become entrapped between the sleeper and the adult mattress. They are safe if the side remains up like a bassinet.
• Thene (product from Australia): Is not considered unsafe, but it's not a solution to prevent SUID. Some infants have died in it. Strapping down an infant is generally not recommended. The slight movement may contradict AAP recommendations against movement in safe sleep products.
• Weighted blankets: Are not safe for infants. No blankets, weighted or not, should be used.

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