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.
Highlights
Children born with hearing loss are at increased risk of behavioural problems, lower academic achievement, challenges with both verbal and non-verbal communication, and poorer employment prospects [1,2]
This study explored parental support needs following their newborn’s diagnosis of bilateral moderate–profound sensorineural hearing loss
The main goal of this study was to understand the parent experience and their support needs from the newborn hearing screen until enrolment into early intervention services
Summary
Children born with hearing loss are at increased risk of behavioural problems, lower academic achievement, challenges with both verbal and non-verbal communication, and poorer employment prospects [1,2]. Supporting parents from hearing screening to diagnosis, and into early intervention, is a critical component of the diagnostic experience to foster the best possible long-term outcomes for the child [2,8,9]. It could be postulated that parents will have specific support needs due to the challenging emotions associated with their newborn’s hearing diagnosis. Research has shown accommodating parent support needs could aid in the effectiveness of early intervention programs for their child, as parents feel more empowered to assist with hearing habilitation [11]. In addition to screening for hearing loss, there are proposed benefits of UNHS programs embedding support services within their programs to assist parents of infants who do not pass the newborn hearing screen and require further audiological investigation. Despite the recommended benefits of pairing UNHS and support services together [1], it remains unclear how many countries have embedded support services into their screening programs
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