“The Stakes Could Not Be Higher”: A Qualitative Study of Parental
Social Media Use in Pediatric Oncology
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.