The objective of the proposed study is to engage American Indian communities in the design and implementation of an intervention to reduce the risk for Sudden Infant Death Syndrome (SIDS) and other related infant deaths due to unsafe sleep environments. American Indian/Alaskan Natives (AI/AN) carry a disproportionate burden of infant mortality. According to the Centers for Disease Control and Prevention (CDC), AI/AN have 1.6 times the infant mortality rate as non-Hispanic whites and are 1.7 times as likely as non-Hispanic white babies to die from SIDS. While there have been decreases in infant mortality rates, the Northern Plains American Indian SIDS rate is 3.46 per 1000 live births compared to the overall US SIDS rate of 0.54 per 1000 live births. The disparity between infant mortality rates by race is largely driven by post-neonatal mortality. Post-neonatal deaths occur after 28 days post-delivery and are primarily related to SIDS and infant care practices including, sleep environment related factors that are largely considered preventable. Compelling evidence from research in other racial populations suggests that family and cultural norms, attitudes and personal beliefs about infant sleep, safety and comfort are strongly associated with the choice of infant sleep environment. It may be possible that the current safe sleep messages are in conflict with inherent cultural beliefs within American Indian communities. This conflict with the scientifi recommendations regarding safe sleep may influence behavior, even in the presence of adequate knowledge about safe sleep practices. This proposal provides an unprecedented opportunity to expand our current work in infant mortality established, in part, through the Prenatal Alcohol in SIDS and Stillbirth (PASS) Network (NICHD 2U01- HD045935). During this time, we have successfully engaged communities at the highest risk of infant mortality and established long-term relationships through dialogue and trust, to develop mutually agreeable research protocols and procedures. In partnership with local clinics, hospitals and community service agencies, we have developed a clinical site infrastructure designed to recruit and follow women for research purposes through multiple health-care environments and physical locations to allow for optimal retention and outcome ascertainment. Using a Community Based Participatory Research model, we will investigate the influence of parental knowledge, cultural beliefs and access to resources on decision making regarding infant sleep environment. Community input and feedback will be utilized in development of a culturally embedded group intervention program, buoyed by the American Academy Pediatrics safe sleep recommendations for infants. The intervention will be tested using a randomized, open trial of a 150 pregnant American Indian women, comparing standard safe sleep education format to a culturally appropriate group education format.
The potential impact of this project is to decrease post-neonatal infant mortality in high risk American Indian communities in the Northern Plains and create a cost-effective self-sustainable model that can build upon current programs. This research can also provide a model for intervention that can be applied to other high risk communities in prevention of SIDS and other sleep related deaths.