SUID and SIDS Prevention Efforts: Families at the Center
By Sandra J. Frank, JD, CAEPresident, Association of SIDS and Infant Mortality Programs
The American Academy of Pediatrics (AAP) Task Force on SIDS first recommended back sleep for infants in 1992.1 The national Back to Sleep campaign was initiated in 1994.2 The AAP Task Force is expected to issue revised recommendations in October 2011.
Back to Sleep was tremendously successful in the early years. Despite a nearly 50 percent decline in SIDS, the rate has plateaued in the past decade.3 Studies confirm that the decrease in rates has been offset by an increase in other causes of death, e.g., accidental suffocation, asphyxia and undetermined.4 New terminology has evolved to describe this phenomenon, including sudden unexpected infant death (SUID) and sleep-related infant death.
There continues to be a significant racial disparity in sleep-related infant deaths.5 African-American infants are disproportionately affected by accidental suffocation and strangulation in bed and undetermined deaths, with rates two to three times that of non-African-American infants. Infants born to African-American mothers still succumb to SIDS at a rate more than twice that in white, non-Hispanic infants.6 The extent of the racial disparity has increased.7
With the plateau in rates, changing diagnosis and continuing disparities, it is imperative that our intervention strategies are evidence-based, culturally competent and that core maternal and child health (MCH) principles guide our efforts.
Multiple studies provide new insight about factors – social determinants – that influence the choice of infant sleep position and location, and the barriers to accepting the AAP recommendations. Maternal concerns about infant safety, choking and comfort may account for much of the disparity.5 Other barriers include the lack of advice and inconsistent or incorrect advice. Another finding is particularly significant as we consider new interventions: mothers’ beliefs about her infant’s sleep will influence her decision, no matter how much advice she receives or from whom.8
Focus groups and interviews suggest that mothers did not find the connection between SIDS and safe-sleep recommendations plausible. On the other hand, there was less skepticism about the connection between suffocation and infant death. In terms of interventions, the emphasis on preventability of suffocation may result in acceptance of the recommendations and a decrease in rates of sleep-related infant deaths.7
Back to Sleep was a successful public health education campaign. However, infant safe sleep is more complex, multi-factorial and likely to require different approaches to prevention. Social-marketing concepts may be effective in reaching certain populations. The evidence is suggesting that health professionals may need to rethink the way they interact with families – moving away from instruction and toward mutual dialogue.
What events or family circumstances influence decisions about infant sleep? What are the unique needs of this family? How can we tailor culturally competent services to meet those needs? Who are the trusted sources of information? Who should we engage to help build trust?
What are the family’s beliefs and knowledge about infant sleep? How do we actively listen to the reasoning behind infant sleep choices? How can we acknowledge those beliefs and respond in a respectful, non-critical way?
What are their concerns about safety, choking and comfort? How do we engage in a sensitive two-way conversation to address those concerns? What resources and tools can help us communicate more effectively?
As we work together with families to improve acceptance of the safe-sleep recommendations, our challenge is to avoid criticism or blame and to understand the underlying beliefs and address the needs. As professionals and advocates, our efforts should continue to hold true to MCH principles – care that is centered on the family, attuned to the factors influencing behavior and always mindful of the lasting impact we can have.
1. Kattwinkle, J., Brooks, J., Myerberg, D. (1992). American Academy of Pediatrics AAP Task Force on Infant Positioning and SIDS. Pediatrics, 89:1120-1126.
2. NICHD/NIH. Back to Sleep campaign. www.nichd.nih.gov/sids/sids.cfm. Date accessed: September 7, 2011
3. Kattwinkle, J., Hauck, F.R., Keenan, M.E., Malloy M.H., Moon, R.Y. (2005). Task Force on Sudden Infant Death Syndrome, American Academy of Pediatrics. The changing concept of sudden infant death syndrome: diagnostic coding shifts, controversies regarding the sleeping environment, and new variables to consider in reducing risk. Pediatrics, 116:1245-1255.
4. Shapiro-Mendoza, C.K., Kimball, M., Tomashek, K.M., Anderson R.N., Blanding, S. (2009) US Infant Mortality Trends Attributable to Accidental Suffocation and Strangulation in Bed from 1984 through 2004: Are Rates Increasing? Pediatrics, 123:533-539.
5. Colson, E.R., Rybin, D, Smith, L.A., Colton, T., Lister, G., Corwin, M.J. (2010). Trends and Factors Associated with Infant Sleeping Position: The National Infant Sleep Position Study 1993-2007. Archives of Pediatric and Adolescent Medicine, 163:1122-1128.
6. Joyner, B.L., Oden, R.O., Ajao T.I., Moon, R.Y. (2010). Where Should My Baby Sleep: A Qualitative Study of African American Infant Sleep Location Decisions. Journal of the National Medical Association. 102(10):881-889.
7. Moon, R.Y., Oden, R.O., Joyner, B.L., Ajao, T.I. (2010). Qualitative Analysis of Beliefs and Perceptions about Sudden Infant Death Syndrome in African-American Mothers: Implications for Safe Sleep Recommendations. Journal of Pediatrics, 175:92-97.
8. Von Kohorn, I., Corwin, M.J., Rybin, D.V., Heeren, T.C., Lister,G., Colson, E.R. (2010) Influence of Prior Advice and Beliefs of Mothers on Infant Sleep Position. Archives of Pediatric and Adolescent Medicine, 164(4):363-369.