Elicitation of children's understanding of information in pediatric genetic counseling encounters: A discourse-oriented perspective.

Abstract

Affirmation of children's understanding of information provided in genetic counseling encounters is crucial to obtaining children's informed consent/assent in pediatric genetic counseling encounters. It is also important for the proper management of a genetic condition. Currently, there is a relative scarcity of research on how understanding of complex genetic information by children is elicited in the process of pediatric genetic counseling. In this study, we apply theme-oriented discourse analysis to examine 23 video/audio-recorded genetic counseling encounters in Hong Kong. The encounters involve children aged between 3 and 17years old who are suspected to have or diagnosed with Sudden Arrhythmic Death Syndrome (SADS). Specifically, we examine a range of communicative strategies that genetic professionals employ to elicit children's understanding of information in this genetic counseling setting. We also examine how children's epistemic status is negotiated between genetic professionals, parents, and children. The study reveals that genetic professionals typically use direct questioning (e.g., "do you understand?" or "do you have any questions?"). Less typical are examples where genetic professionals explore children's epistemic access and invite children to recall information after they deliver it. The study reveals two discourse strategies that genetic professionals and parents employ to justify a child's low epistemic status: (1) construction of "current ignorance" and "future competence" in children and (2) association with a child's character. In the examined counseling encounters, genetic professionals and parents tend to construct a low epistemic status in younger children and allocate the responsibility for understanding relevant information to the parents and the "future" competent children. The study highlights the impact of genetic professionals' and parents' assumptions on children's knowledge and comprehensibility at different ages, and the role that children themselves play in conforming or contesting these assumptions.