The experiences of diagnosis for people with Usher syndrome
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Dr Liz Hodges, Dr Liz Ellis, Dr Graeme Douglas, Prof Gary Thomas – Department of Inclusion and Special Needs, University of Birmingham
Funded by Sense – October 2011– September 2013
This two year study conducted by researchers at the University of Birmingham and funded by Sense, is designed to examine the lives of people with Usher syndrome (type 1, 2 and 3), at different stages of the life course, to help to understand their experience of diagnosis and the impact this has on planning for life and identity. People with Usher type one or two are born, respectively, either profoundly or moderately deaf and gradually lose their vision from their teens. People with Usher type three may or may not be born with a hearing loss and (usually) lose both vision and hearing in middle age
The research 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.
To understand processes of identification and diagnosis in Usher syndrome and the impact these are likely to have on life planning and identity. We expect the findings to aid in the communication of the diagnosis and in the subsequent education, treatment and counselling of people with the syndrome.
The fieldwork will comprise of extended semi-structured interviews and fixed measures of self-esteem with 40 people with Usher syndrome at different life stages. These 40 participants will comprise 15 who are (about) 15 years of age; 15 who are (about) 25 years old, and 10 who are (about) 45 years old. Our sample of participants reflects an expectation of three key age-stages in relation to life plan and acceptance of diagnosis.