Siobhán Laoide-Kemp, Wendy Mc Cracken, Amr El Refaie, Kai Uus
Background: Cytomegalovirus (CMV) is the leading non-genetic cause of permanent hearing loss in children. 90% of CMV cases are asymptomatic at birth. They remain undiagnosed. A small number develop delayed-onset hearing loss within the first 5 years of life Aim: This research aims to raise awareness of symptomatic CMV (cCMV) as well as informing change in public health policy with regard to asymptomatic congenital CMV (AcCMV). Methodology: A pilot study was carried out using 1:1 interviews with four parents of children who had been diagnosed with permanent delayed-onset hearing loss and retrospectively diagnosed with cCMV. All were asymptomatic at birth (AcCMV). Their parents are members of Our New Ears, a charity and advocacy group run by parents of deaf children. Interviews were transcribed and analysed using narrative and thematic analysis and cross checked by two investigators. Findings: Preliminary analyses suggested no standardised diagnostic and management pathway for t