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.
Bibliographical noteFunding Information:
This analysis was conducted as part of Dr Patterson?s participation in the Medical Student Summer Research Program at the Medical College of Wisconsin. She was the first recipient of the Class of 2001 Scott Sprtel, MD, Medical Student Summer Research Fellowship. Dr Farrell received support for the analysis and the main Project from NHLBI grant R01-HL086691. Dr Roedl received additional support from NHLBI grants R01- HL086691-02S1 and RC1-HL100819.
© Taylor & Francis 2016.
- Cystic fibrosis carrier
- Information-seeking behavior
- Neonatal screening
- Physician–patient relations
- Sickle cell trait