Best practice guidelines for communicating to parents the diagnosis of disability

Abstract

Conveying a diagnosis of a disability to the parents of young children is difficult both for the parent and the clinician, however there is an ethical and medical imperative to do so. However, the process and manner of disclosure needs to be done well. When communication between parent and clinicians fails, parental mental health can be adversely affected. This paper adapts and explains how to use the SPIKES protocol to deliver "bad news" about a developmental disability diagnosis with families of infants <12-months old, using cerebral palsy as an example. Next, the range of responses parents experience to the delivery of bad news from "watchful waiting" to "acceptance" are outlined and explained. The knowledge needs of parents range from causes and prognosis to treatments and outcomes. Using clinical scenarios of recently diagnosed infants, commonly asked questions and suggested answers are tabled.