Original Article

Journal of Inherited Metabolic Disease

, Volume 35, Issue 5, pp 879-884

First online:

Internet use by parents of infants with positive newborn screens

  • Jane M. DeLucaAffiliated withUniversity of Rochester, School of Nursing Email author 
  • , Margaret H. KearneyAffiliated withUniversity of Rochester, School of Nursing
  • , Sally A. NortonAffiliated withUniversity of Rochester, School of Nursing
  • , Georgianne L. ArnoldAffiliated withUniversity of Pittsburgh, School of Medicine

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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.


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.


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.


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.