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The experiences of diagnosis for people with Usher syndrome

Funder: SENSE

Oct 2011 – September 2013

Usher syndrome affects people who are deaf and then lose their vision later in life. This obviously has a significant effect on their experience of life and a need for a different outlook on opportunities and experiences. It is one of the most significant causes of deafblindness in the UK.

In this research we will be examining the lives of people with Usher syndrome, types 1, 2 and 3. We will talk to people at different stages in their lives to understand their experience of diagnosis and the impact this has on planning for life and identity. This research into Usher syndrome is timely for a number of reasons -: changes in attitude to disclosure to children; the possible introduction of more sensitively targeted genetic diagnosis; screening in relation to cochlear implantation, and the impact of the internet.
The key data collection for this research will be talking with people who have Usher syndrome, (some of who use British Sign Language) and through this gaining an insight into their lives. Through this we will identify key themes from their own experience of life.
We will be seeking participants with Usher 1,2 and 3 at 15, 25 and 45 years of age.

Impact and Dissemination

We will be keen to share the findings with people with Usher syndrome, and with other professionals and researchers. They will cover research issues such as the identification of people with Usher syndrome, and also the life stories of people with Usher syndrome, including their perceptions of the diagnosis on their lives. We hope that the findings may have significance for those working in education, treatment, and counselling for people with Usher syndrome. We hope to publish a variety of reports, including in peer reviewed research journals, and also to make our findings available to the Usher community through interactive signed material on the web.

Project Reports

We are pleased to share with you our first report, which we have planned as part of our dissemination to the deaf community and to those with Usher. Further reports both for this audience and more research focused outputs will follow.

The experiences of diagnosis for people with Usher syndrome - interim report (new web page)

The experiences of diagnosis for people with Usher syndrome - interim report (Word document)