Newsletter. Social Research with Deaf people. Issue 8 January 2014

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1 Social Research with Deaf people Issue 8 January 2014 Inside this issue: Recent Grants awarded 1 Deaf with Dementia project 2-3 NSPCC SAFE: An evaluation study 4 Recent travel 5 Recent presentations and publications 6 Update on NDCS FE project 7 Congratulations! Congratulations to: Rosemary Oram who was awarded her MRes in Health & Social Care. The title of her dissertation was An exploration of the social care services needs of older Deaf people from their perspective. Katherine Rogers who was awarded her PhD (Title: Deaf people and mental well-being: Exploring and measuring well-being in British Sign Language). Goodbye Tracey Raistrick, who is currently doing a Doctorate in Professional Studies in Practical Theology, has left SORD to study to become a minister. We would like to wish Tracey all the best in her new vocation. Recent Grants awarded: Evaluating the effectiveness and cost effectiveness of BSL (British Sign Language) IAPT (Improving Access to Psychological Therapies). Funded by NIHR Health Services and Delivery Research Programme. Due to start in March Contact Katie for more information at: katherine.rogers@manchester.ac.uk Develop a therapeutic tool for Deaf people with dementia. Funded by ESRC-NIHR as part of the Neighbourhoods and Dementia study Working in partnership with the Deafness Cognition and Language (DCAL) Research Centre and the British Deaf Association (BDA). Due to start in Summer Link (with BSL version included): Contact Emma for more information at: Emma.ferguson-coleman@manchester.ac.uk The Deaf Children with Autism project is one phase of a national study, Diagnostic Instruments for Autism in Deaf Children (DIADS) within National Deaf Child and Adolescent Mental Health Services. Funded by the Medical Research Council. Project started December Contact Emma for more information.

2 Project Close-up: Deaf with Dementia project The Deaf with Dementia project, funded by the Alzheimer s Society, started in July 2010 and has now finished. The aims of the study were to explore the early identification of dementia amongst Deaf people who use BSL and to work towards developing effective information and care which meets their unique needs. After the three years, this project has achieved a great deal! In summary: * We have improved diagnosis of dementia for Deaf people. There is now a clinic in London for Deaf people who are worried about their memory. You can get more information from here: There is now a proper test in BSL which can help to diagnose dementia. * We have clear evidence from the Deaf community about what kind of information they want and what is the best way to help everyone learn more about dementia. A new project starting this year will create online information resources in BSL about dementia. * We have for the first time collected the experiences of Deaf people who are living today with dementia and their carers. We know more about Deaf people s needs and strengths. We are using this to influence better services for Deaf people with dementia and their families. We will be able to announce more about this next year.

3 Project Close-up: Deaf with Dementia project (con d) * We have attracted a lot of government attention and raised awareness in Parliament of the need to provide better services for older Deaf people. There has already been one parliamentary reception. In March 2014, the government minister for social care is launching a report for us on the social care needs of older Deaf people. * We have helped professionals become more aware of what they need to do so Deaf people with dementia have better services. We have written some guidance for the Department of Health in England linked to the National Dementia plan. We have provided professionals with information on the Social Care Institute for Excellence Dementia Gateway. * We have used the research results to create a new project. It will help Deaf people with dementia and their carers to create personal life story books in BSL using Deaf history. The BDA are working with us on this project. We were awarded the funding as part of the Prime Minister s Dementia Challenge. To find out more go to: Thank you to everyone who has helped us so far and everyone who has volunteered again to help us in the future. We are very grateful. The Deaf with Dementia project team: Professor Alys Young, Dr Jo Atkinson, Emma Ferguson-Coleman, Professor Bencie Woll, Professor Jane Marshall, Professor John Keady, Dr Jan Sheldon, Dr Katherine Rogers, Professor Alistair Burns

4 We are looking for participants for the following study: An evaluation of the NSPCC's SAFE: Personal safety skills for deaf children pack The aim of the SAFE pack is to raise awareness amongst deaf children about how to stay safe and make better informed life choices. It is a key preventative measure in safeguarding deaf children and young people. We have been commissioned by the NSPCC to evaluate the effectiveness of the SAFE pack from the point of view of its users. As part of the evaluation, we are asking people who have purchased and/or used the SAFE pack with deaf children/young people about their thoughts and experiences of using the pack and their ideas for improving it in the future. You can take part by being interviewed by a member of the research team or by completing the online survey. To take part in the online survey, please go to: NSPCCSAFEsurvey/interested We are also keen to get feedback from deaf children/young people about their thoughts on the SAFE pack. If the deaf children/young people you are currently working with are using the SAFE pack and would be interested in being involved, please feel free to contact us! We would be very grateful if you could pass this on to anyone who you know has purchased the SAFE pack or used the SAFE programme. We are recruiting until March If you have any queries, please do not hesitate to get in touch with us. We look forward to hearing from you soon. You can contact us via * Katie Rogers: katherine.rogers@manchester.ac.uk * Rosemary Oram: rosemary.oram@manchester.ac.uk

5 Travel by SORD team members: Rachel Belk In 2012, SORD hosted a knowledge exchange workshop to share developments in online data collection research methods that have potential to be used in other research and clinical settings. This followed a collaborative bid to the ESRC Digital Social Research community activities fund and was reported in the May 2013 newsletter. Following this, Rachel Belk travelled to Montréal to represent SORD and her co-authors, Katie Rogers and Alys Young, through a spoken presentation to the World Social Science Forum. The conference theme Social Transformations and the Digital Age fitted perfectly with this work and the attendees came from hugely diverse backgrounds: linguists, health professionals working in social research, political scientists, anthropologists, members of ehumanities groups, media specialists, web specialists, disability studies researchers, sociologists there were up to 10 parallel sessions so the audiences were small, but engaged. Discussion followed about ease for participants of using an online system, the challenges of collecting video data that cannot be anonymised and ways of incorporating visual data into reports and presentations through re-filming. The following day Rachel attended a particularly stimulating session on minority languages and identities where excellent links were made. Hilary Sutherland Hilary was a keynote speaker, focusing on the theme of Deaf Role Models, at the The World Deaf Day at Ostend in Belgium on 28 th September Her paper, Room for d/deaf professionals, was presented to an audience made up mostly of Deaf adults, along with some hearing parents and the Heads of the Flemish home guidance services. In the presentation, she looked at UK provision for d/deaf children and their families and also looked at what is happening in other countries, including what we know from research about the benefits of using d/deaf role models. The aim of the day was to try to improve the brothering between the two worlds. After her presentation, which was delivered in three different sign languages and in three spoken languages, a young Deaf person spoke of her personal experiences with her hearing parents and also her hearing parents talked about their experiences of bringing up a deaf young person. A Deaf mum of two Deaf children also talked about their recent experiences where their eldest son has taken part in a television show and proved to be a hit amongst the viewers, thus providing a good example of a positive role model for other d/deaf children and for their families too. In the afternoon a number of stalls were set up and it was good to see the variety of different of organisations working together. It was an enjoyable weekend, especially as it was Hilary s first time going by Eurostar, an experience worth doing, and both the interpreter and herself managed to have some time visiting Bruges before coming back home. Alys Young In June/July 2013 Alys spent time in Australia delivering multi professional training days at the Victorian Deaf Education Institute, Melbourne; Royal Institute for Deaf and Blind Children in Sydney; and parent workshops. She gave keynote lectures at ANZCED 2013 (Australian and New Zealand Conference on the Education of Deaf children) and contributed to research symposia. Details of presentations can be found at: [See a photo of one of Alys s furry friends that she met when she was there...]

6 Recent Presentations by members of SORD: Atkinson, J., Callaghan, P., Denmark, T., Ferguson-Coleman, E., Keady, J., Marshall, J., Sheldon, J., Woll, B., & Young, A. (2013) Deaf with Dementia Symposium: From the margins to the mainstream. UK Dementia Congress, Nottingham, 7th November Atkinson, J. & Ferguson-Coleman, E. (2013) The Deaf with Dementia Project. Presentation given at UKCoD Conference on Ageing and Deafness: Implications for Health and Social Care, London 16th October Belk, R.A., Rogers, K.D. and Young, A.M. Online Data Capture in British Sign Language (BSL): Implications for Research and Clinical Applications. World Social Science Forum 2013 (WSSF 2013), Montréal, Canada, 13th-15th October Ferguson-Coleman, E. (2013) "Overcoming obstacles to the early identification of dementia in the signing Deaf community". Presentation delivered to NowDoc PhD student conference, UCLAN, 15th July Ferguson-Coleman, E. (2013) Deaf people with dementia and their carers: communicating experiences, attitudes and service provision Presentation delivered at Taunton and Bridgwater Deaf Club, Taunton, 22nd October Ferguson-Coleman, E. (2013) Deaf people with dementia and their carers: communicating experiences, attitudes and service provision. Presentation to Social Work students, Adult Elective, University of Manchester, 19th November Oram, R. (2013) Older People who use BSL preferences on residential care provision in Wales (Welsh Assembly Government), given at UKCoD Conference on Ageing and Deafness: Implications for Health and Social Care, London, 16th October Woll, B., Atkinson, J., Denmark, T., Ferguson-Coleman, E., Keady, J., Rogers, K. & Young, A. (2013) The Deaf with Dementia Project, Alzheimer's Association International Conference, Boston, USA, 15th July Recent Publications Rogers, K., Evans, C., Campbell, M., Young, A., & Lovell, K. (2013). The reliability of British Sign Language and English versions of Clinical Outcomes in Routine Evaluation - Outcome Measure with d/deaf populations in the UK: an initial study. Health and Social Care in the Community. Advance online publication: onlinelibrary.wiley.com/doi/ /hsc.12078/pdf Ferguson-Coleman, E., Young, A & Keady, J. (in press) Dementia and the Deaf community: knowledge and service access. Aging and Mental Health. Sutherland, H., Young, A.M. (2013). Research with deaf children, not on them: a study of method and process. Children and Society. Advance online publication: onlinelibrary.wiley.com/doi/ /chso.12000/pdf

7 Update on NDCS FE project: This research project, funded by NDCS, focuses on deaf young people (aged 16 to 19 years) in England and on their experiences of and views on FE provision. There are a number of routes young people can choose to take in relation to FE provision and we want to explore, amongst other things, if deaf young people have same options as hearing young people. In 6 Local Authorities selected in England, interviews with deaf learners and college staff were completed in conjunction with interviews of key informants, both professionals and parents supporting deaf young people. In addition, workshops were run with deaf young people where they shared their views and discussed issues they have faced in preparation for FE and during their studying. With data from 59 participants in total, we are very pleased with the data we have collected. We have begun data analysis, which we hope to complete by mid-february. This will be followed by a write-up and we anticipate that a full report will be available in the Spring. For more information, please click on the following link: Rosie and Hilary [rosemary.oram@manchester.ac.uk] [hilary.sutherland@manchester.ac.uk] The Perspectives on Deafness series (Oxford University Press) is publishing Alys s new book (with B. Temple): Approaches to Social Research: the case of Deaf studies. It is a book which examines mainstream social science theories and practice in interaction with the insights, innovations and challenges of studies by, with and about d/deaf people and contexts. For more information go to: -to-social-research ? cc=us&lang=en&q=deafness&tab=description