Internet searching after parents receive abnormal newborn screening results

Many parents experience confusion and anxiety when their infant has an abnormal newborn screening result, especially for the heterozygous ‘carrier’ results that are typically communicated by primary care providers. The Internet is an important media source for health information, so many organizations have developed websites for parents after newborn screening. Surprisingly, little research has been done on the role that the Internet plays for parents after newborn screening. This qualitative study explored parents’ comments about the Internet included in open-ended interviews conducted as part of a larger study of parents after newborn screening identifies carrier status for cystic fibrosis or sickle cell disease. Analysis used emergent theme coding and deductive coding grounded in uses and gratifications theory. Parents reported a variety of motivations for searching, and many parents volunteered that they had searched the Internet despite a physician’s recommendation to avoid the Internet in this matter. Parents described several strategies for Internet searching and related a mixture of positive and negative experiences. They also gave suggestions for better communication with healthcare providers regarding the Internet search that could have improved their understanding. The study’s results may help to guide providers’ discussions after newborn screening so that parents can maximize the benefits of the Internet search and minimize negative experiences. Further research may help to quantitatively describe the Internet experience after newborn screening, and to further understand how media use after newborn screening influences psychosocial outcomes.