The SIDS Communication Gap

An intriguing new study published in the journal Pediatrics suggests that messages about SIDS prevention might not be getting to parents, despite millions of “back to sleep” and stop-smoking brochures. SIDS (Sudden Infant Death Syndrome) is the unexplained death, usually during sleep, of a seemingly healthy infant, most frequently between two and four months of age. The incidence of SIDS deaths has decreased dramatically in the United States since 1983, starting at 1.4 deaths per 1,000 live births and decreasing to .056 by 2001. But the decrease pretty much levels off after that, hovering around .5 per 1,000 live births through 2006, the last year for which the CDC has data. SIDS claimed 2,234 infants lives in 2006 (the last year for which the CDC has data), making it the third leading cause of death in this age group.

One reason for the decline is heightened awareness of risk factors for SIDS. Rates dropped most dramatically in the early 1990s, correlating with the American Association of Pediatrics “Back to Sleep” campaign, which began in 1992. The National Institutes of Health (NIH) followed suit in 1994. The campaign is straightforward, its core advice being to place infants on their backs when putting them to sleep. And the evidence is substantial: Infants who sleep on their tummies are 12.9 more likely to die in their sleep than are those who sleep on their backs. The campaign adds a few other pieces of advice, like not smoking around your little ones and avoiding pillows, heavy blankets, and soft bedding, and it’s obviously had an effect. After all, a 50 percent drop isn’t bad.

But why the plateau? There are a number of other important risk factors for SIDS, usually categorized as “non-modifiable,” meaning they can’t be changed. For instance, being male or being born during the fall or winter months both increase the risk of dying from SIDS. Other risk factors include happening to be born Hispanic or African-American, or happening to be born poor (two factors that, in the United States at least, all too often go hand in hand). We also know that some infants, risk factors or no, are simply more likely to stop breathing and be unable to start up again. Recent studies suggest that abnormalities in the brainstem may prevent infants from responding to breathing challenges. But those physiological abnormalities are much more likely to occur in infants exposed to risk factors — for instance, an infant whose mother smoked cigarettes while she was pregnant.

In the study published this week, researchers focused on those modifiable risk factors. Study authors Barbara M. Ostfeld, PhD and Thomas Hegyi, MD, professors in the Department of Pediatrics at UMDNJ-Robert Wood Johnson Medical School, found that more than 96 percent of infants who died of SIDS in 2006 were exposed to known modifiable risk factors, including sleeping on their side or stomach or exposure to tobacco smoke. More than three-fourths (78 percent) of SIDS cases involved multiple risk factors. Rightly, they conclude that there’s a lot of potential for improvement in communication between health-care providers and parents, especially parents-to-be: “The study provides evidence that despite a decline in SIDS, a continuing effort should be made by health-care providers to educate parents and other caregivers and to do so with attention to all identified risk factors, as recommended by the American Academy of Pediatrics (AAP).” In other words, they suggest that the decline in SIDS deaths has plateaued because there’s a failure in communication between health-care providers and parents.

But it’s more than a failure of communication and education that’s leading to excess SIDS deaths in the United States. It’s a failure to recognize that parents and families live in complex networks of interpersonal relationships, communities, media advertising, cultural histories, and more. Each of these factors influences people’s choices about whether to adopt known risk reduction practices, whether it be reducing the risk of SIDS for their infants or heart disease for themselves. What pregnant teen do you know who’s going to outvote grandma when she insists that her new grandbaby will sleep more soundly on his tummy (she’s right… and that’s the problem. Baby is likely to sleep so soundly that he won’t wake up if he stops breathing). I think of a young mom who took a CPR class from me recently. When I announced a smoking cessation class to be held in our rural community, she groaned, “Oh… my uncle is going to make me go!” This was after she enthusiastically affirmed my inclusion of smoking on a list of SIDS risk factors: “Oh, yes. Smoking is the biggest problem.”

So is the SIDS communication gap really because health-care providers need to provide more education to parents? I say no. We can educate all we want, but that’s not going to change people’s health behaviors — even when it comes to our kids. Maybe the real SIDS communication gap lies not in what health-care providers aren’t telling parents, but in what they’re not asking them.

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