Aston University's Dr. Amanda Hall and Dr. Helen Pryce have helped to develop a new series of videos to offer guidance and support to parents of very young children diagnosed with mild hearing loss or hearing loss on only one side.
The videos, available on YouTube, were produced by the National Deaf Children's Society (NDCS) and were designed in conjunction with partners from University College London and Oxford University Hospitals NHS Foundation Trust. A new report from the team, Development of parent experience-based information resources for families of children age 0-4 years with mild/unilateral deafness, identified a number of challenges and uncertainties for parents, which the videos aim to address.
A newborn hearing screening program in England was set up to identify moderate or greater deafness in both ears (bilateral deafness) but also picks up mild bilateral deafness and deafness on just one side, or unilateral deafness. The researchers interviewed 17 parents of children aged 0-4 with mild or unilateral deafness to understand their experiences of diagnosis, their decisions on managing their child's condition, experience of equipment and technology, and advice to other parents.
After analyzing the answers, the researchers found that parents experienced particular uncertainty around mild or unilateral deafness, and that these uncertainties were influenced by various factors, such as whether hearing devices or education support are available locally, and their trust and compliance with medical advice. They found that parents decisions were often taken based on a combination of professional advice and what they themselves had noticed about their child's hearing. Changes in circumstances, such as progressive hearing loss or the child starting nursery, generate more uncertainties to navigate.
As a result of the analysis, Dr. Hall, Dr. Pryce and their colleagues were able to develop the four short support videos with NDCS, in which parents share their own journeys and experiences, aiming to help other parents on their journeys.
The report's authors also made a number of recommendations for further support for parents, including that professional bodies should develop guidelines for professionals working with parents of children with bilateral mild deafness and unilateral deafness, and that professionals may need additional training on communicating uncertainty.
Our goal with the videos is to support families through hearing from other parents who have been through similar experiences. We hope these videos help families to feel more confident in their decision making and managing their child's unilateral or mild deafness."
Dr. Amanda Hall, Aston University
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