Parents’ Perspectives on Decisions to Participate in Pediatric Clinical Research: Results From a Focus Group Study With Laypeople

Abstract

Knowing why parents decide to consent or dissent to participation of their child in pediatric clinical research is essential to further the ethical debate concerning pediatric research. We performed this qualitative focus group study with 16 parents from the Dutch general public to explore their perspectives on decisions to participate in pediatric clinical research. Group discussion revealed the following: Parents conflate clinical research and clinical care, they do not grasp the trajectory of pediatric drug development, their protectiveness matches current research guidelines, and benefit for their child is the most important factor in their decision. Research professionals should be aware of the knowledge gap of parents, the pitfalls of jargon, and unintended false expectations.

Keywords

clinical trials children and adolescent/pediatrics parental consent/child assent decision-making capacity/surrogate decision makers research ethics

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