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“The Stakes Could Not Be Higher”: A Qualitative Study of Parental Social Media Use in Pediatric Oncology
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  • Elizabeth Foot,
  • Amanda Leonhard,
  • Jill Majeski,
  • Lauren Zahn,
  • Hsin Li,
  • Amy Caruso Brown
Elizabeth Foot
Hamilton College
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Amanda Leonhard
Hamilton College
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Jill Majeski
SUNY Upstate Medical University
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Lauren Zahn
SUNY Upstate Medical University
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Hsin Li
Wright Center for Graduate Medical Education
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Amy Caruso Brown
State University of New York Upstate Medical University
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Abstract

Background: To describe how parents and families of children with cancer evaluate the benefits and risks of using social media (SM) and how they navigate disagreements between oncologists’ advice and information found on SM. Procedure: Parents of children who had been previously diagnosed with cancer, and who had used SM for a purpose related to that child’s health were recruited through SM sites and nonprofit organizations across the U.S. and were invited to complete questionnaires about their experiences using SM; a subset of participants also completed a follow-up in-depth interview. Open-ended responses and interviews were analyzed using thematic analysis. Results: 90 parents completed written questionnaires; 21 completed follow-up interviews. 70% described experiencing a situation in which information shared on SM conflicted with information provided by their child’s oncologist. Although 86% discussed it with the oncologist and 70% described the response as positive, 78% retained negative feelings about the experience. Openness to discussing SM, honesty, transparency and humility regarding the limits of medicine, and shared decision-making regarding information found on SM were connected with reported trust in the oncologist. Conclusions: Parents offered valuable insights regarding their experiences navigating SM, including 8 recommendations for how pediatricians might approach discussing parental SM use. Future studies will evaluate the utility of these recommendations for pediatric clinicians.

Peer review status:ACCEPTED

08 Jan 2021Submission Checks Completed
08 Jan 2021Assigned to Editor
08 Jan 2021Submitted to Pediatric Blood & Cancer
12 Jan 2021Reviewer(s) Assigned
22 Jan 2021Review(s) Completed, Editorial Evaluation Pending
08 Feb 2021Editorial Decision: Revise Major
02 May 2021Submission Checks Completed
02 May 2021Assigned to Editor
02 May 20211st Revision Received
03 May 2021Reviewer(s) Assigned
20 May 2021Review(s) Completed, Editorial Evaluation Pending
20 May 2021Editorial Decision: Accept