The experiences of people with dual sensory impairment attending rare syndrome clinics

Researchers in DISN (Liz Ellis and Liz Hodges) are conducting research on the experiences of people who have a dual sensory impairment (deafblind people) and attend specialist clinics for people with rare syndromes. This project is funded by Sense the national charity for deafblind people and their families, and some of the research will also be conducted by Yemi Tadesse a researcher from Sense.

The needs of people with a dual sensory impairment (deafblind people) are unique in terms of communication, getting around, and accessing information. “Deafblindness is not just a deaf person who cannot see, nor a blind person who cannot hear. The two impairments together increase the effects of each.” (www.sense.org.uk). Consequently this research looks at the experiences of deafblind people, as told to us in their own words, as they talk about attending specialist rare syndrome clinics. We will pay particular attention to the three core issues of communication, mobility, and accessing information. 

We will be talking to deafblind people who have the following rare syndromes:

  • Alström
  • Usher
  • Bardet-Biedl
  • Wolfram
  • Stickler
  • CHARGE

Participants will be invited to take part in two interviews. The first will be in their own home (or another suitable place) and the participants will be asked about their syndrome and their experiences of attending specialist rare syndrome clinics. We are interested in hearing both positive and negative aspects of people’s experiences. We will gather opinions on what works well and what things can be improved. Participants will be encouraged to communicate with us in the way that they prefer e.g. British Sign Language, braille, or symbols.

In the second stage of the research we will observe whilst a patient attends a clinic appointment and have a discussion with the participant about the clinic appointment and the ways in which their needs as a deafblind person were supported (or not) at this clinic appointment.

We will also be doing an environmental audit looking at the ways in which the environment of the hospital/clinic supports or hinders the requirements of its deafblind patients and their families.  

Find out more

Life and Change with Usher (WORD 97-2003 document, 882KB) 

Life and Change with Usher (PDF, 1.30MB)

Contact

Liz Ellis

Email: l.ellis.2@bham.ac.uk

Tel: 0121 414 4392