The Impact of Usher Syndrome on Families: A Closer Look at Their Support Needs

Living with Usher syndrome is not only complex for people with this syndrome, but also affects family members. Usher syndrome is an inherited progressive disorder that leads to deafblindness. Due to genetic testing, Usher syndrome can now be diagnosed before the child’s first year of life. Receiving the diagnosis can bring up many feelings for parents, including insecurity, and raise questions about when and how to inform the child of the diagnosis. The progressive sensory loss in Usher syndrome also requires ongoing adaptations, such as in communication strategies. People with Usher syndrome and their family members often need support in learning to cope with these adaptations. This chapter discusses the support needs of families with a child with Usher syndrome and families with a parent with Usher syndrome. It also discusses what expertise and skills professionals should have when supporting families with a child or parent with Usher syndrome.