Exploring Parent Support Needs during the Newborn Hearing Diagnosis Pathway

Abstract

Universal newborn hearing screening (UNHS) facilitates early detection of permanent congenital hearing loss in newborns. In recognition of specific needs among parents, support services have been established within some UNHS programs, including the Victorian Infant Hearing Screening Program (VIHSP). Despite this, there is limited research about how to best support parents in the context of well-established UNHS programs. This project aims to retrospectively explore parental support needs between the newborn hearing screen and enrolment into early intervention services. We used semi-structured interviews with parents three- to- six-months post confirmation of their newborn's diagnosis of bilateral moderate-profound sensorineural hearing loss. Data were analysed using inductive content analysis. Thirteen parents of ten children were interviewed. Parents described high satisfaction with the support they received. Some parents felt unprepared for a diagnosis of hearing loss, having been reassured that transient causes such as middle ear fluid caused the hearing screen result. Parents reported mixed responses regarding the value of parent-mentor support along the pathway and some parents described needing additional psychological input to adjust to their child's diagnosis. These findings provide insights into how a well-established UNHS program, VIHSP, supports parents along the hearing diagnosis pathway and how support can be further enriched.

Keywords: hearing loss; parent perspective; support needs; universal newborn hearing screening.