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Exploring Parent Support Needs during the Newborn Hearing Diagnosis Pathway
Kayla Elliott1,2, Danya F Vears3,4,5, Valerie Sung1,2,6
1Prevention Innovation Research Group, Murdoch Children's Research Institute, Parkville 3052, Australia.
Insights
Parents in newborn hearing screening programs reported satisfaction but also unpreparedness for hearing loss diagnoses. Additional psychological support and refined parent-mentor programs are needed to better assist families.
Area of Science:
- Audiology
- Developmental Pediatrics
- Public Health
Background:
- Universal newborn hearing screening (UNHS) programs aim for early detection of congenital hearing loss.
- Support services exist within some UNHS programs, like the Victorian Infant Hearing Screening Program (VIHSP).
- Limited research addresses optimal parental support within established UNHS frameworks.
Purpose of the Study:
- To explore parental support needs during the diagnostic journey from newborn hearing screening to early intervention.
- To identify areas for improvement in parental support within the VIHSP.
Main Methods:
- Retrospective study using semi-structured interviews.
- Participants: 13 parents of 10 children diagnosed with bilateral moderate-profound sensorineural hearing loss.
- Data analysis: Inductive content analysis.
Main Results:
- Parents expressed high satisfaction with overall support received.
- Some parents felt unprepared for a permanent hearing loss diagnosis, especially after being reassured about transient causes.
- Mixed views on parent-mentor support value; some parents desired additional psychological support.
Conclusions:
- Established UNHS programs like VIHSP provide valuable support but can be enhanced.
- Addressing parental preparedness for diagnosis and offering tailored psychological support are key areas for improvement.
- Refining parent-mentor programs may increase their perceived value.
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.
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