Emma Webb1,2, Professor Jan Hodgson2, Dr Alanna Gillespie1,5, Professor Cheryl Jones2,3,4, Dr Zeffie Poulakis1,2,5, Dr Janis Wong2, Associate Professor Valerie Sung1,2,5
1Murdoch Children’s Research Institute, Melbourne, Australia, 2The University of Melbourne, Melbourne, Australia, 3The University of New South Wales, Sydney, Australia, 4Sydney Children’s Hospital Network (Westmead), Sydney, Australia, 5The Royal Children’s Hospital, Melbourne, Australia
Biography:
Emma is an audiologist by background and is in the final stages of her PhD with the thesis title: “Exploring factors facilitating early screening for congenital cytomegalovirus”, which is the leading infectious cause of permanent hearing loss in babies.
Abstract
Issue of consideration: Congenital cytomegalovirus (cCMV) is the leading infectious cause of sensorineural hearing loss and neurodevelopmental disabilities, with prompt detection (<21 days of life) required to enable accurate diagnosis and anti-viral treatment where clinically appropriate. International guidelines recommend cCMV screening for infants who do not pass their Universal Newborn Hearing Screening (UNHS).
Aim: This study aimed to explore parental experiences of targeted cCMV screening through the UNHS in Victoria, Australia between 2019-2020 (HearS-cCMV study). Methods: A qualitative study comprising 18 semi-structured interviews with parents who took saliva swabs from their infants who did not pass their UNHS. A maximum variation sampling strategy was used with data analysed using thematic analysis.
Purpose of presentation: To discuss findings of our study, including four themes describing parental experiences: (1) parents’ lack of CMV awareness prior to cCMV screening; (2) overall positive experience; (3) varied understanding of CMV post screening; (4) parents were glad to screen their infant for cCMV. Enablers included the swab being simple, non-invasive, easier in the hospital, and well-delivered by staff. Barriers included potential increase in anxiety, especially with false positives, and the timing of cCMV screening coinciding with their infant not passing UNHS being difficult for some parents.
Outcomes: Parent experiences of targeted cCMV screening were positive. Increasing public knowledge of cCMV and training staff members to complete the CMV swab would reduce the risk of false positives and associated parental anxiety. This would facilitate successful routine targeted cCMV screening.