An exploration of the communication patterns and language used between clinical geneticists and parents of children with dysmorphic features

Abstract

The present study aims to provide insight into the interactions between clinical geneticists and parents of children with dysmorphic features during syndrome assessment. Seven families attending a dysmorphology clinic for syndrome assessment consented to have their consultation recorded and transcribed verbatim. Content and discourse analyses were used to study the language and communication patterns of problematic and challenging sections of the consultations, primarily sections concerning the child's appearance and diagnosis which were marked by dysfluency and hesitation, indicators of problematic communication. Findings revealed that the clinical geneticists used a range of communicative strategies when discussing a child's appearance, such as comparing the child's features with those of parents or other individuals and minimizing differences. In doing so they displayed an orientation to the “face-threatening” nature of this communicative task. While geneticists discussed the child's appearance in an extremely sensitive manner, parents tended to describe their child's appearance using direct and objective language. These findings provide novel insight into the complexity of syndrome assessment consultations in a dysmorphology clinic. We suggest that parents may be seeking a more open discussion of their child's appearance, and clinician engagement with this may prove a more effective communication strategy than those currently employed, while remaining sensitive to parents' responses to such a discussion. At the start of the consultation it is important to give parents the opportunity to voice their concerns and expectations, and to explain to parents that a diagnosis may not be reached.