Parental Information Seeking Following a Positive Newborn Screening for Cystic Fibrosis

Abstract

This investigation focused on the information-seeking behaviors of parents (N = 38) whose newborn had received a positive screening result for cystic fibrosis. Roughly half of the participants actively sought information about their child's potential disease prior to the clinic visit. The most common sources of information were the Internet, pediatricians, and family physicians. Analysis of behavior during the clinic visit showed rates of question asking that were judged as low, but they were comparable to the results of other studies. It was observed that parents occasionally would collaborate in the production of a single question. More educated parents tended to produce such questions more frequently. Importantly, frequency of collaborative questions was positively correlated with enhanced knowledge of cystic fibrosis six weeks after the clinic visit and with apparent dissatisfaction with the counseling interaction.

We thank Linda Makholm and Anita Laxova for their invaluable assistance with data collection. This research was supported by the National Institutes of Health (R01 DK34108–16 and MO1-RR03186).

Notes

*p < .10.