Ms Caris Jalla1, Mrs Lara Shur1
1Earbus Foundation of WA, Wembley, Australia
In the past UHL was considered to have little consequences because speech and language presumably developed appropriately with one normal-hearing ear. However, research has widely concluded that children with UHL have increased rates of speech delays, need for additional educational assistance and perceived behavioural issues. Children with UHL report lower in hearing-related quality of life, similar to children with bilateral hearing loss. Research has also reported that approximately half the number of parents undergoing the decision making process for intervention extremely stressful. This stress can be minimised with evidence-based education and support. Furthermore, children with UHL are often not prioritised compared to children with bilateral hearing loss and can easily fall through the cracks of services and intervention.
While the national adoption of newborn hearing screening has provided new opportunities for very early hearing loss interventions, it can also present difficulties or concerns for families; as commonly experienced with any diagnostic tests. Many families are met with emotions particularly when the hearing loss is unexpected. It is common for parents to experience sadness, anger, confusion, vulnerability and guilt. As a diagnostic service, it is typical for parents to express their worries and concerns when their child is first diagnosed with hearing loss.
In response to the need for greater UHL supports and resources, Earbus Foundation are establishing a resource centre and support group for families. This presentation will describe the experiences and identified needs of parents caring for children with UHL. The UHL program is co-designed with families, working towards upskilling parents in knowledge, capacity building and advocacy. An outline of the programs aims and outcomes will be shared. Parents raising children with UHL need support with understanding their child’s type of UHL, their likes, strengths and behaviours and more can be done to empower families beyond the diagnosis.