Journal of Inherited Metabolic Disease

, Volume 35, Issue 5, pp 879–884 | Cite as

Internet use by parents of infants with positive newborn screens

  • Jane M. DeLuca
  • Margaret H. Kearney
  • Sally A. Norton
  • Georgianne L. Arnold
Original Article

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.

References

  1. Araia M, Potter B (2011) Newborn screening education on the internet: an analysis of North American newborn screening program websites. J Community Genet 2:127–134PubMedCentralPubMedCrossRefGoogle Scholar
  2. Beaudoin DE, Longo N, Logan RA et al (2011) Using information prescriptions to refer patients with metabolic conditions to the Genetics Home Reference website. J Med Libr Assoc 99(1):70–76Google Scholar
  3. Bylund CL, Gueguen JA, Sabee CM et al (2007) Provider-patient dialogue about internet health information: an exploration of strategies to improve provider-patient relationship. Patient Educ Couns 66:346–354PubMedCrossRefGoogle Scholar
  4. Bylund CL, Gueguen JA, D’Agostino MA et al (2010) Doctor-patient communication about cancer-related internet information. J Psychosoc Oncol 28(2):127–142PubMedCrossRefGoogle Scholar
  5. Caiata-Zufferey M, Abraham A, Sonnerhalder K et al (2010) Online health information seeking in the context of the medical consultation in Switzerland. Qual Health Res 20:1050–1061PubMedCrossRefGoogle Scholar
  6. Cameron Hay M, Cadigan RJ, Khanna D et al (2008) Prepared patients: internet information seeking by new rheumatology patients. Arthritis Care Res 59(4):575–582CrossRefGoogle Scholar
  7. Carrad I, Crépin C, Rouget P et al (2011) Randomized controlled trial of guided self-help treatment on the internet for binge eating disorder. Behav Res Ther 49:482–492CrossRefGoogle Scholar
  8. Chisolm D (2010) Does online health information seeking act like a health behavior?: A test of a behavioral model. Telemedicine and e-Health 16(2):154–160Google Scholar
  9. Chiu YC (2011) Probing, impelling, but not offending doctors: the role of internet as an information source for patients’ interactions with doctors. Qual Health Res 28 July doi:10.1177/104973231147455
  10. DeLuca JM, Kearney MH, Norton SA, Arnold GL (2011) Parents’ experiences of newborn screening evaluations. Pediatrics 128:53–61PubMedCrossRefGoogle Scholar
  11. DeSantis M, DeLuca C, Quattrocchi T et al (2010) Use of the internet by women seeking information about potentially teratogenic agents. Eur J Obstet Gynecol Reprod Biol 154:154–157CrossRefGoogle Scholar
  12. Dolce M (2011) The internet as a source of health information: experiences of cancer survivors and caregivers with healthcare providers. Oncol Nurs Forum 38:353–359PubMedCrossRefGoogle Scholar
  13. Fox S (2010) Pew Internet & American Life Project, the Social Life of Health Information. Available at: http://www.pewinternet.org/Reports/2011/Social-Life-of-Health-Info/Summary-of-Findings.aspx Accessed 8/15/11
  14. Gundersen T (2011) ‘One wants to know what a chromosome is’: the internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder. Sociol Health Ill 33(1):81–95CrossRefGoogle Scholar
  15. Kaufman N (2010) Internet and information technology use in treatment of diabetes. Int J Clin Pract 64(Suppl 166):41–46CrossRefGoogle Scholar
  16. Khoo K, Bolt P, Babl FE et al (2008) Health information seeking by parents in the internet age. J Paediatr Child Health 44:419–423PubMedCrossRefGoogle Scholar
  17. Knapp C, Madden V, Marcu M et al (2010) Information seeking behaviors of parents whose children have life-threatening illnesses. Pediatr Blood Cancer 56:805–811PubMedCrossRefGoogle Scholar
  18. Knijnenburg S, Kremer L, van den Bos C (2010) Health information needs of childhood cancer survivors and their family. Pediatr Blood Cancer 54:123–127PubMedCrossRefGoogle Scholar
  19. Miles B, Huberman A (1994) Qualitative data analysis. Sage Publications, Thousand Oaks, CAGoogle Scholar
  20. Moseley K, Freed G, Goold S (2011) What sources of child health advice do parents follow? Clin Pediatr (Phila) 50(1):50–56CrossRefGoogle Scholar
  21. Muhr T. Users’ manual for ATLAS.TI (v.5.0) (2004) Scientific software development GmbH, BerlinGoogle Scholar
  22. New York State Department of Health (2003) Newborn Screening in New York State, a Guide for Health Professionals. Available at: http://www.wadsworth.org/newborn/pdf/phyguidelines.pdf Accessed 9/2/11
  23. Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 23(4):334–340PubMedCrossRefGoogle Scholar
  24. Schaffer R, Kuczynski K, Skinner D (2008) Producing genetic knowledge and citizenship through the internet: mothers, pediatric genetics, and cybermedicine. Sociol Health Ill 30(1):145–159CrossRefGoogle Scholar
  25. Scullard P, Peacock C, Davies P (2010) Googling children’s health: reliability of medical advice on the internet. Arch Dis Child 95:580–582PubMedCrossRefGoogle Scholar
  26. Sommerhalder K, Abraham A, Caiata-Zufferey MC et al (2009) Internet information and medical consultations: experiences from patients’ and physicians’ perspectives. Pat Educ Couns 77:266–271CrossRefGoogle Scholar
  27. Stevenson FA, Kerr C, Murray E et al (2007) Information from the internet and the doctor-patient relationship: the patient perspective-a qualitative study. BMC Fam Pract 8:47. doi:10.1186/1471-2296-8-47PubMedCentralPubMedCrossRefGoogle Scholar

Copyright information

© SSIEM and Springer 2012

Authors and Affiliations

  • Jane M. DeLuca
    • 1
  • Margaret H. Kearney
    • 1
  • Sally A. Norton
    • 1
  • Georgianne L. Arnold
    • 2
  1. 1.University of Rochester, School of NursingRochesterUSA
  2. 2.University of Pittsburgh, School of MedicinePittsburghUSA

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