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“Before Facebook and before social media…we did not know anybody else that had this”: parent perspectives on internet and social media use during the pediatric clinical genetic testing process

  • Krysta S. Barton
  • Andrew Wingerson
  • Julie R. Barzilay
  • Holly K. TaborEmail author
Original Article
  • 26 Downloads

Abstract

Parents of children who undergo clinical genetic testing have significant informational and emotional support needs at different stages of the testing process. We analyzed parent views about use of both the internet and social media to help meet these needs. We interviewed 20 parents of children who underwent clinical genetic testing and analyzed transcripts to identify themes related to internet and social media use. Parents described using the internet to search for information at three stages of the genetic testing process: before testing, pending results return, and after results return. Each stage corresponded to different information vacuums and needs. Parents also described using condition-specific Facebook groups to learn more about their child’s condition and to find support networks of families with similar experiences in ways that were challenging using non-social media approaches. Both the internet and social media play important roles in meeting informational and support needs in pediatric genetic testing, especially for rare conditions. Providers should consider engaging parents at different stages of the testing process about their use of the internet and social media, and consider directing them to vetted sites and groups as part of shared decision making and to improve satisfaction and outcomes.

Keywords

Genetic testing Internet Social media Diagnostic odyssey 

Notes

Acknowledgements

We would like to thank the parents who shared their experiences and perspectives with us. We would also like to thank the advocacy organizations and researchers who helped us with recruitment.

Funding information

Research reported on in this publication was supported by a pilot grant from the Center for Clinical and Translational Research at Seattle Children’s Research Institute.

Compliance with ethical standards

This study was approved by Seattle Children’s Hospital Institutional Review Board.

Conflict of interest

The authors declare that they have no conflict of interest.

Human studies and informed consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all individual participants included in the study.

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Treuman Katz Center for Pediatric BioethicsSeattle Children’s Research InstituteSeattleUSA
  2. 2.Keck School of Medicine of the University of Southern CaliforniaLos AngelesUSA
  3. 3.Stanford University School of MedicineStanfordUSA
  4. 4.Stanford Center for Biomedical EthicsStanford University School of MedicineStanfordUSA

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