Internet searching after parents receive abnormal newborn screening results

Abstract

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.

Keywords:

• Communication
• Cystic fibrosis carrier
• Information-seeking behavior
• Internet
• Neonatal screening
• Physician–patient relations
• Sickle cell trait

Acknowledgements

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.

Disclaimer statements

Contributors Each of the three authors contributed equally in the conceptualization, development, carrying out, and writing aspects of this study.

Funding None.

Conflicts of interest None.

Ethics approval This study received ethical approval from the institutional review board of our host institution, the Medical College of Wisconsin. It also received approval from the University of Wisconsin-Madison's Institutional Review Board.

Author information

Michael Farrell, MD, is an internist and pediatrician who researches methods to assess and improve communication on population scales. Much of Dr Farrell's communication research has focused on newborn screening, but he has also done work on cancer screening, genomics, and quality improvement. Dr Farrell's research is based at Aurora University of Wisconsin Medical Group. When this study was done, all three authors were based at the Medical College of Wisconsin.

Rachel Patterson, MD, is currently a pediatric neurology resident at University of California-Irvine. When this study was done, she was a medical student at the Medical College of Wisconsin (class of 2014). Dr Patterson has a special interest in children with complex medical conditions, and in ensuring that communication with parents goes well. She was the first recipient of a new funding program in her medical school: the Class of 2001 Scott Sprtel, MD, Medical Student Summer Research Fellowship.

Sara Roedl, PhD, is a marketing communication specialist at the ‘Be The Match’ foundation operated by the National Marrow Donor Program in Minneapolis. At the time of this research, Dr Roedl was finishing her PhD in communication and working as a research coordinator in Dr Farrell's lab.