Childhood Deafblindness

A man teaching a young boy the alphabet in sign language as they read a book.

UsherKids Australia is a parent-led organization that aims to empower the Usher community through support, connection, and knowledge. Emily Shepard of UsherKids Australia recently published a paper titled "Exploring methodologies for establishing prevalence of deafblindness in children: A scoping review" in the British Journal of Visual Impairment. She worked with a team of researchers to conduct a comprehensive review to reveal the complexities in defining, assessing, and diagnosing childhood deafblindness to determine the prevalence of deafblindness in children. A few of their key findings are:

  • The literature on deafblindness in children highlights a lack of comprehensive descriptions of the characteristics and needs of this population.
  • Inconsistencies among researchers in defining, assessing, and diagnosing deafblindness pose challenges for meaningful comparisons.
  • Accurate descriptions of the childhood deafblind population are crucial for understanding their unique needs.

They recognize the need for continued research and a unified effort to describe and address the needs of children with deafblindness accurately. They recommend assessing this population with the aim of paving the way for future studies and interventions.

Earlier in 2023, Emily also published a paper titled “Awareness of Usher Syndrome and the Need for Multidisciplinary Care: A Cross-Occupational Survey of Allied Health Clinicians,” where she aimed to find out how aware of Usher syndrome healthcare clinicians are, specifically audiologists, optometrists, and orthoptists. To ensure the best care for those affected, a team of different healthcare professionals is needed. The results of this study highlight that healthcare clinicians need more education about Usher syndrome to provide better care. It is also essential to help them recognize the valuable roles of different healthcare professionals in multidisciplinary care so that appropriate referrals occur.