Number 54 • January 2015



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Researching the Voices of Deafblind Children:

an update on research activities at the University of Birmingham1, UK

I am Liz Hodges. I trained as a teacher of deafblind children and have and have been working with deafblind people for nearly 30 years. My more formal research in deafblindness has focused on acquired deafblindness but my interest in children and congenital deafblindness remains. I work at the University as a teacher trainer in deafblindness for three days a week and as a specialist a teacher of deafblind children for two days a week.


I am Liz Ellis. I am a research fellow at the University of Birmingham and have been so for nearly three years. I first volunteered for a Sense holiday sixteen years ago and have been working in a voluntary and now paid capacity in relation to deafblindness ever since. I have been involved in three research projects about deafblindness since coming to the University. I am a British Sign Language (BSL)2 level 2 signer.
We work in the Department of Disability and Inclusion. We have a very strong reputation in the field of special needs, including specialists in hearing impairment and visual impairment and we are committed to deafblindness. Our department has been training specialist teachers of deafblind children for more than 25 years.

As researchers, we are social scientists, looking at the ways in which people live their lives, usually through asking them about themselves in relation to the research we are doing. The work we do is focused on helping people to have their voices and opinions heard and validated by research. In three recent projects we have found out how funding changes have affected deafblind people, about how they feel about hospital visits, about the real, lived experience of Usher syndrome, and in all of this, what it is like to be deafblind today.

We focus on meeting people in their own homes and using the communication methods they prefer, be it speech, writing, or sign language. The professional skills in our team and in our department allow us to be flexible and to understand what those needs are, e.g. to produce materials in BSL or in braille.

We are committed to listening to what people say, what they feel and think, about what is happening for them, so that we can reflect these voices in our research. Our work is also founded in social science methodology, so that we look carefully at issues such as sampling, analysis and validity meaning that our reports can be read and respected in academic and government circles. There is an increasing call for evidence based practice, that is, demonstrating the evidence for approaches, or schemes to provide continued commitment to them and this is what our research supports.

We are very proud of the outcomes of our research3. In the last ten years we have completed three projects in relation to people with acquired deafblindness in older age, one of these about people in care homes. These looked at the needs and expectations and the life stories of older people.

More recently we have completed a two year study into the lives of people with Usher Syndrome in the UK. We believe this is among the largest social studies of Usher syndrome and the first to include people with Usher type 3. In telling their own stories, we found that people with Usher met this challenge with a wide range of responses, some being depressed but many developing their ability to adapt and then continue to live their lives to the full and make choices for themselves.

We are currently working on two projects specific to the UK, one looking at the changes in disability related benefits and how this is affecting visually impaired and deafblind people in the UK. The other is looking at how specialist hospital clinics meet the needs of deafblind people with the syndromes Usher, CHARGE, Wolfram4, Bardet-Biedl5, Stickler6 and Alström7. We hope that the outcomes of the first project will help organisations to give better advice to people applying for these benefits and to understand what campaigns may be needed to ensure deafblind people get what they are entitled to. For the second project we are hoping to demonstrate models of good practice for hospitals when dealing with deafblindness people, in relation to the environment, communication and sensory awareness.

In addition we support students researching in deafblindness. We have a number of students completing Masters degrees each year, ranging from audits of services to investigating the world view of practitioners working with deafblind people. Because of the nature of deafblindness, many of these projects, although fairly small scale, represent original research on new topics. We also supervise PhD students working in the field of deafblindness and have a student working with us at the moment on CHARGE syndrome. Students undertaking teacher training in deafblindness benefit from the input of our research and our researchers.

Our work would not be possible without funding and we are deeply grateful to those who have enabled us to take on these projects: Sense, Royal National Institute for the Blind8 (RNIB), the Thomas Pocklington Trust9, and Bupa (a private healthcare and social care organisation in the UK)10.
For more information contact: Dr. Liz Hodges (e.m.hodges@bham.ac.uk)
or Dr Liz Ellis
(l.ellis.2@bham.ac.uk)

1 www.birmingham.ac.uk
2 l .britishsignlanguage.com
3 http://www.birmingham.ac.uk/research/activity/education/victar/research/research-with-people-with-deafblindness.aspx.
4 ghr.nlm.nih.gov/condition/wolfram-syndrome
5 ghr.nlm.nih.gov/condition/bardet-biedl-syndrome
6 ghr.nlm.nih.gov/condition/stickler-syndrome
7 ghr.nlm.nih.gov/condition/alstrom-syndrome
8 www.rnib.org.uk/
9 www .pocklington-trust.org.uk
10 www.bupa.co.uk


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