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Peer-reviewed article

When Parents Take Conflicts to Digital Media

Over the past decade, there have been numerous cases around the world in which parents have used digital media to orchestrate public opposition to doctors' recommendations. Parents are not always "successful" with such efforts; these cases…

By John D. LantosJanuary 1, 20191 min readin PEDIATRICS

Over the past decade, there have been numerous cases around the world in which parents have used digital media to orchestrate public opposition to doctors' recommendations. Parents are not always "successful" with such efforts; these cases have mixed outcomes and, sometimes, unintended consequences for parents. In this article, we address the current lack of understanding of parents' goals, motivations, and rationalizations in initiating such campaigns. We analyze 12 cases in which parental digital media campaigns went viral that occurred between 2007 and 2018, with the aim of better understanding parents' motivations for going public. We identify 7 themes raised by parent-initiated digital media campaigns: (1) changing doctors' minds, (2) being heard, (3) feeling empowered, (4) buying more time, (5) raising public awareness, (6) feeling that they have done everything possible, and (7) financial gain. Greater attunement to these themes and what is driving parents in such conflicts may help to disrupt the highly adversarial narrative surrounding such cases. It may also inform how clinicians approach disagreements that cross a certain threshold of public interest at the bedside.

Originally published at PEDIATRICS · January 1, 2019.

About the author

John D. Lantos is a pediatrician and bioethicist writing on AI in medicine, neonatal intensive care, and end-of-life decisions. His essays appear in JAMA, JAMA Pediatrics, the Hastings Center Report, the New England Journal of Medicine, and Aeon. Read more about John.

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