Models of mystery: Physician and patient perceptions of sudden infant death syndrome

Sudden infant death syndrome or SIDS is the term applied to unexplained infant deaths. This syndrome is distinguished by a lack of knowledge about its cause, pathophysiology, and possibilities for prevention. Given these uncertainties, SIDS provides an opportunity to investigate what types of explanatory models are constructed by physicians and patients when relatively little is known about a condition, and how these models may be translated into clinical practice. Interviews about SIDS were conducted with members of a Pediatric Pulmonary Section and their high risk patients, and the clinical interactions between the staff and families were observed. The pulmonary model focused on physiological causes which might affect respiration, and reflected uncertainty in both content and variability. Parents largely accepted the respiratory hypothesis, although they also considered nonphysiological causes. They tended to manage the uncertainty by focusing on ways to prevent SIDS and by believing they could predict which babies might die. However, observations of clinical interactions revealed that very little of the uncertainty as perceived by either the staff or the parents was discussed. The staff is able to emphasize hope for a particular patient, despite the uncertainty that surrounds SIDS, by following an explicit protocol which states how to handle a child despite the theoretical unknowns, and focusing on the knowns about the particular baby's condition.