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Exploring the support needs of Australian parents of young children with Usher syndrome: a qualitative thematic analysis

21 Mar 2024

Abstract excerpt

BACKGROUND: Advancements in genetic testing have led to Usher syndrome now being diagnosed at a much earlier age than in the past, enabling the provision of early intervention and support to children and families. Despite these developments, anecdotal reports suggest there are substantial gaps in the services and supports provided to parents of children with Usher syndrome. The current study investigated the...

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PMID: 38515174
DOI: 10.1186/s13023-024-03125-w

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