Abstract
Background
Internet searches on health topics are common, but not enough is known about online use during serious health concerns. The aim of this study was to investigate parents’ internet use and responses to online information following the referral of their newborn screen-positive infants.
Methods
Forty-four parents were interviewed about their internet use during their infants’ evaluations for a potential metabolic disorder. Responses to open-ended questions were audio taped and transcribed. Content analysis was used in analyzing the interview data.
Results
An overwhelming majority of parents (89%) accessed the internet and most went online before meeting with genetic providers at metabolic treatment centers. Primary and genetic providers did not routinely recommend websites to parents. Online descriptions of metabolic disorders increased parents’ anxieties. Some parents allayed their distress by enlisting others to search and filter information for them and by seeking optimistic internet content about the disorders. Parents with fewer years of education were often baffled by complex disease information. Parents found limited information about treatments or what to expect during the clinical evaluations of their infants.
Conclusions
The internet is an integral part of health care and an important source of information for newborn screening parents. Parents may benefit from recommendations of credible websites and discussions of internet information with health care providers.
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Acknowledgments
We wish to thank the International Society of Nurses in Genetics (ISONG) and personnel from the metabolic treatment centers for their assistance and support. We thank the parents in the study who generously gave of their time to share their experiences with us.
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Communicated by: Jean-Marie Saudubray
Competing interest: None declared.
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DeLuca, J.M., Kearney, M.H., Norton, S.A. et al. Internet use by parents of infants with positive newborn screens. J Inherit Metab Dis 35, 879–884 (2012). https://doi.org/10.1007/s10545-011-9449-7
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DOI: https://doi.org/10.1007/s10545-011-9449-7