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NewsletterJune 2015
Newsletter
Social Research
with Deaf people
SORD
Issue 11 June 2015
Hello Everyone Its June already, this year has gone extremely fast and its not long till the summer. We hope you will enjoy our newsletter. Dont forget to visit the SORD website for more information about SORD research projects and to know who is on our team. We also have a Facebook
page, Social Research with Deaf People, so do check us out and click like to see our regular updates! There are also opportunities for you to participate or get involved in various projects. Please do get in touch if you are interested or want further information.
Best wishes from SORD Research Team
Inside this issue:
Front page Greeting Page 2 SORD Team Members Page 3-6 SORD Research Projects Page 7 SORD: Impact
Page 8 Conferences
Page 10 Fundraising news
Last page Photos, news and
SORD contact details
NewsletterJune 2015
At SORD, we have such a committed team from all backgrounds and we
want to give you the opportunity to know who we are and what we do.
Everyone in the team contributes greatly in such different ways and this is
what makes SORD so unique - the diversity and the strength of our team.
If you want to know more about us, check out our website
www.manchester.ac.uk/sord. We each have BSL clips on our staff profiles as
well as English text.
SORD Team members
Working with the Deaf Community
NewsletterJune 2015
Working with the Deaf Community
SORD Research Projects
Improving access to services and raising standards
Ensuring that services meet the specific needs of Deaf people and supporting service providers to do this better is common to many of the research projects that SORD under-takes. The first step is always to identify clear evidence of where and why some services are just not effective for Deaf people; the second is to try to do something about this. In this edition of our newsletter we focus on some of those projects that are contributing to changes in practice because they are creating a better evidence base for health and social care services. At the heart of them is good consul-tation with the Deaf community and good relationships with professionals and policy makers.
NHS England Quality Standards in Interpreting and Translation in Primary
Care
We have now completed the data collection phase of this project. We ran 4 focus groups for Deaf people (in London, Derby, Gloucester and Manchester), involving 35 participants in total. Our online survey for interpreting providers was completed by 147 people. The majority of these were registered, qualified interpreters (14% of all registered, qualified interpreters responded); some were trainees; some were agency staff; some were Deaf translators. Thirteen people were then chosen to be interviewed in more depth. Wed like to thank everyone who took part we had a really great response. All the data are now being analysed. We are
drawing out common themes and ideas and
sharing our findings with NHS England, so that
they can use our work to shape and
strengthen the Quality Standards framework
and guidance that they are producing. NHS
England are sharing their documents in draft
form with clinicians, service staff and user
group representatives in a series of 5 regional
events. Feedback from these sessions will
help them to refine the documents and there
should be one final event for users and
providers later this summer. SORD will
conduct a more extended analysis of the data
over the next few months and we are planning
to publish our findings independently.
_____________________
RAD in the 21st Century
The Royal Association for Deaf People has a long and proud history of providing services and supporting the Deaf community http://royaldeaf.org.uk/About_RAD/History_and_Archives_/77 Currently its services include interpreting/translation, care and support for older people, employment and advocacy, legal advice and spiritual support amongst many others http://royaldeaf.org.uk/ Looking toward the future, the Board of Trustees has decided to commission a piece of consultative research to think about what RADs future service priorities should be. RAD has always been concerned to ensure its resources are targeted at the most important services from the Deaf communitys perspective. Perhaps its focus is absolutely right at the moment but maybe there are some gaps in service provision that RAD should address? For example, RAD is working increasingly with older peoples social care. Should those services be the ones that grow
NewsletterJune 2015
Working with the Deaf Community
SORD Research Projects
Is RAD really addressing these opportunities and challenges? What should RAD services look like if young people meet more online than they do in a Deaf club? It is these kinds of questions and many more that RAD is interested in exploring. SORD has been asked to support RAD in this consultation. We will be running focus groups aimed at people who currently use RAD services. We will be interviewing RAD trustees and staff. We will be setting up an online survey in BSL and English so anyone can share their views and respond to questions. All resources are limited though, so some of the research work will be asking participants their views on priorities e.g. is it more important to expand employment support services than it is to further develop interpret-ing services? Obviously both are important but which is more important in the early 21st century and why? Look out in the next few months for
opportunities to take part! RAD wants this
consultation to be as meaningful as possible,
to reach a large number of people who
currently use RAD services and those who do
not. The results will directly inform the Board
of Trustees decisions about how to spend
money, what services to develop and which to
maintain in the future. So please have your
say!
-
Many of the projects that SORD carries out
concern how the Deaf community sees its own
strengths and ensuring that these are
communicated well to others. We know the
Deaf community makes an enormous
contribution to the well being of Deaf people
and to society in general but sometimes this is
not recognised. People unfamiliar with sign
language and the culture of Deaf people(s)
misunderstand the contribution or do not
recognise Deaf peoples strengths. One of our
new projects is exploring one aspect of this
idea:
Translating the Deaf Self:
Understanding the impact of mediation
As you may be aware, we have received fund-
ing from AHRC (the Arts & Humanities
Research Council) to carry out this 18 month
project in partnership with Heriot Watt
University, Edinburgh. The project teams are
interested in exploring the real-life experiences
of Deaf BSL users who use Sign Language
Interpreters and for whom this may be an eve-
ryday experience. Although there has been
quite a lot of research about sign language
interpreting before there has been little about
the perspectives of Deaf people themselves
and none that has really asked what the im-
pact might be on a Deaf person of being trans-
lated.
For example, when Deaf people interact with
hearing people through interpreters do they
think that the hearing person can really see
them for who they are? Does the Deaf person
feel they get the attention they deserve or are
people just fascinated by the interpreter?
Does the use of interpreters in everyday life
impact on a Deaf persons positive mental well
being? What is it like to be a Deaf
professional and use interpreters do others
see you for your skills and treat you equally?
NewsletterJune 2015
Working with the Deaf Community
SORD Research Projects
These are the kinds of issues we mean by
impact. Part of the project will involve
discussion groups and you could get involved
if you want. Participants will need to attend
two separate sessions in Leicestershire (by
arrangement through Action Deafness). This
will be called a Community Participatory
Group. Interpreters, hearing colleagues and
parents who have a deaf child/children will be
invited to share their views too, in separate
discussion groups called Focus Groups.
These will last between one to two hours and
they will meet once.
More information on the project and how to
get involved can be found on our webpage.
The link is
http://www.nursing.manchester.ac.uk/
deafself.
For further details contact:
Rosemary Oram
07799 773012 (text) or Alys Young
[email protected] 0161 306
7747
-
Keeping close to Deaf peoples own concerns and priorities is important to us too. In research projects this is often called PPI (patient and public involvement) or member involvement. In some of our cur-rent funded research projects we are taking the opportunity to explore PPI as an idea with the Deaf community as well as to ensure that PPI is at the heart of our work.
One of our current research projects is about
the effectiveness and cost effectiveness of
IAPT (Improving Access to Psychological
Therapies). It sets out to compare standard
IAPT accessed by Deaf people using e.g.
interpreters, and a version of IAPT delivered
by a trained Deaf professional directly in BSL.
It is funded by NIHR (National Institute for
Health Research)
http://www.nursing.manchester.ac.uk/
bsliaptevaluation/
As part of this project we have recently set up
a PPI group (Patient and Public Involvement)
and carried out two workshops. A group of
eight Deaf members participated in the
discussions on both occasions sharing their
information, advice and contribution to the
research design.
These workshops gave Deaf PPI members
the opportunity to work with researchers not
for Deaf people. They are representing
the Deaf community not as participants but
alongside the researchers. In this case, PPI
members were helping us to refine the
information and consent materials in BSL that
we would be using in a pilot study for a later
clinical trial. The PPI group was Deaf-led,
members came from all over England and
were paid an approved fee for their expertise
in line with INVOLVE guidelines for PPI (http://
www.invo.org.uk/posttypefaq/payment-what-rates
-should-be-offered-for-involvement-in-research/)
All of the participants in the PPI group felt
that their involvement had been worthwhile
and the biggest impact on participation was
to have a Deaf only group with no
interpreters. Participants felt it meant they
could express themselves more freely. Also
NewsletterJune 2015
Working with the Deaf Community
SORD Research Projects
they did not have to explain lots of things
about Deaf perspectives before they said an-
ything which is sometimes the case in PPI
groups with hearing participants as well.
Members comments on the value of PPI were
filmed and we are talking to NIHR IN-
VOLVE at the moment about promoting more
of this kind of work in the future. PPI is very
important to service providers as well through
the work of NHS England and Public Health
England. Our PPI members felt strongly that
Deaf people have something important to
contribute via PPI in consultations that the
NHS run and want to have their voice heard
via sign language.
________________
Neighbourhoods and Dementia Project
PPI
As advertised in BSL on our SORD Facebook
page, (https://www.facebook.com/
socialresearchwithdeafpeople),
my name's Emma Ferguson-Coleman and I
am a research assistant on the Neighbour-
hoods and Dementia project. Our project is
developing a life-stories tool for Deaf people
with dementia and their families using video
footage and photos from the British Deaf As-
sociation Deaf Heritage Project.
However, before we develop this work, we
want the Deaf community to support us by
giving advice, opinions and knowledge about
how this might work for a Deaf person who has
dementia.
We are looking for Deaf people who have
dementia, their families or people who have
experience of caring for a Deaf person with
dementia.
If you are interested in supporting this work,
please email me directly at emma.ferguson-
As a team we know we are much more than we can be as individuals why not explore our website and find out more about us?
Our website homepage. http://www.nursing.manchester.ac.uk/research/researchgroups/socialcareandpopulationhealth/sord/
We also do our bit to raise general awareness of Deaf people, sign language and issues in the community. This year we raised money for a local Deaf charity in aid of Deaf Awareness week. There is more information on Page 10 about this.
NewsletterJune 2015
Working with the Deaf Community
SORD: Increasing our impact
We have built upon our expertise in online data collection and our commitment to making information available bilingually (BSL and English) for our research methods and results dissemination. Many of our projects are now routinely based, at least in part, on our webpages. We launched a Facebook page on 23.10.14 to increase our social media presence. This is particularly valuable given the capacity of Facebook to host video clips, so information can be posted in BSL, making it increasingly popular with Deaf people. The page has been phenomenally suc-cessful, with the Facebook metrics show-ing a clear spike in the reach (the number of people for whom the post has appeared on their newsfeed) each time a post of particular interest goes up. For example: 1. A call for Deaf people to take part in our
NIHR-funded study to validate the EQ-5D 5L psychological tool reached 1,800 people.
2. A call to BSL/English interpreters to
take part in our study for NHS Eng-land, developing Quality Standards for Interpreting in the NHS reached 850 people.
3. A job advert for a part-time research
role in SORD reached 800 people. 4. An information post to let people know
about the launch of the Translation the Deaf Self: understanding the im-pact of mediation project website reached 1000 people.
Our frequent use of the University-supported Select Survey questionnaire creation tool (with modifications to post BSL videos, sometimes to capture BSL video responses and to separate personal data from questionnaire responses) also allows us to monitor access. For example, the questionnaire for the Quality Standards for Interpreting project was accessed over 2,000 times and over one seventh of all the BSL/English interpreters in the UK responded to the questionnaire. Outside our digital presence, and back in the real world, we have increased our visibility outside the Deaf research community through good representation at the inaugural MAHSC (Manchester Academic Health Sciences Centre) conference in December 2014. We presented four posters on SORD projects and won third prize for Rachel Belks PhD project Genetic information in British Sign Language (together with Alys Young and also colleagues from the Institute for Human Development) http://www.mahsc.ac.uk/uncategorized/mahsc-staff-awarded-top-research-impact-health-conference/.
NewsletterJune 2015
SORD travel news Conferences
Deaf Health ChampionsManchester
On 11th March 2015, Deaf Health Champions
organised a conference to highlight the health
needs of Deaf people. The conference was to
focus on the work of Deaf Health Champions in
the North West as well as the result of
SignHealths Sick Of It Report which was
launched in March 2014 in Westminster. Guest
speakers delivered talks including Professor
Dame Sue Bailey who talked about how Health
Services fail Deaf people, Dr Andrew Alexander, who talked about SignHealths
Sick of It report and Ann Marie Stone, a volunteer for HealthWatch based in
Wigan discussed her experiences as a volunteer. The event was attended by
many professionals that work within the Deaf community in different areas such
as Deaf Centres, Universities and Charities. There was also networking
opportunities and the chance for organisations attending the conference to have
a stall and share the information about their work and how they contribute to the
Deaf community with their work as well as meet other professionals.
SORD was pleased to welcome Ann Porter who
visited briefly on a fact finding and research liaison visit in June.
Ann is a PhD student from Griffith University researching decision making for parents of
children with a unilateral hearing loss .
Ann is also Chief Executive Aussie Deaf Kids www.aussiedeafkids.aug.au/ in addition to
being a parent in the Global Coalition of Parents of Deaf / Hard of Hearing Children ( GPOD).
SORD Visitors
NewsletterJune 2015
SORD: Team News
As a specialist research team it is important to us that academics in other disciplines understand this area of study too. We take every opportunity we can to disseminate our work to the wider world not just to the Deaf community and those working alongside Deaf people. Many of our publications are in mainstream academic journals, not in specialist Deaf-related ones. More widely, we foster excellent links, such as:
Jane Russell is the UK rep for the Global Coalition of Parents with deaf and hard of hearing children. Alys Young was awarded funding from Marie Curie Fellowship. Claire Dodds posted the first ever BSL vlog on the
Universitys Making a Difference blog about her role in supporting new mums with breastfeeding.
The Deaf with Dementia project received a Commended Certificate award from the inaugural Making a Difference Awards for outstanding contribution to society through research. Luke Holdsworth has been with SORD under an internship for
12 months, which has benefited SORDs work tremendously.
NewsletterJune 2015
Working with the Deaf Community
To celebrate Deaf Awareness week, which took place on 4th10th May, SORD decided to host a Homemade Anything sale, where we sold a variety of things such as cake, jam, rhubarb, plants, homemade cards and even more cake. The sale went down a treat with the staff at the University of Manchester where we sold our items and we raised 175.10. SORD decided we would donate the money to Genie Networks, a local children's charity which supports Deaf and HOH chil-dren and their families.
Deaf Awareness Week4th10th May 2015
NewsletterJune 2015
Working with the Deaf Community
SORD [Social Research with Deaf People]
School of Nursing, Midwifery and Social Work, University of Manchester, Jean McFarlane Building, Oxford Road Manchester M13 9PL Email contact: [email protected]
* Bridging the Gap 3: 21st November 2015 *
SORD will be hosting the Bridging the Gap 3: Conference at the University of Manchester on
21st November 2015. More information will be released shortly on our Facebook page and in
the next Newsletter in September.
To ask any questions and to book a place, please contact us on [email protected].
RECENT PUBLICATIONS
Young, A.M., Squires, G., Oram, R., Sutherland, H., Hartley, R. ( 2 015 ) . Further Education as a
post-secondary destination for deaf and hard of hearing young people: a review of the literature and
analysis of official statistics in England. Deafness and Education International, 7 ( 1 ) 49-59. DOI:
10.1179/1557069X14Y.0000000042.
Young, A.M., Ferguson-Coleman, E., Keady, J. ( 2015 ) . Understanding dementia: effective infor-
mation access from the Deaf community s perspective. Health and Social Care in the
Community. http://onlinelibrary.wiley.com/doi/10.1111/hsc.12181/pdf
Uus, K., Young, A., Day, M. ( 2015 ) . Parents perspectives on the dilemmas with intervention for
infants with auditory neuropathy spectrum disorder: A qualitative study. International Journal of
Audiology, DOI: 10.3109/14992027.2015.1020970
Young, A., Storbeck, S. ( 2015 in press ) . E arly intervention in challenging international con-
texts . In: M. Sass-Lehrer ( Ed. ) Infants, Toddlers and their Families: An Interdisciplinary
Perspective , New York: Oxford University Press.
Young, A. ( 2015 in press ) . Deaf children and their families: sustainability, sign language and
equality , in: De Clerck, G., Paul, P. (Eds ) Proceedings of the International Conference on
Sustainability, sign language and equal opportunities. Ghent: Academia Press.
Young, A.M., Russell, J. ( 2015 in press ) . B uilding foundations in family support , in: Moeller, M.,
Ertmer, D., Stoel-Gammon, C. (Eds. ) Contemporary Methods of Promoting Speech and Language
Development in Children Who are Deaf and Hard of Hearing. New York: Brookes.
Sass-Lehrer, M., Young, A. ( 2015 in press ) . Evidence Based-Practice in Early Intervention: The
Proof of the Pudding is in the Eating . Proceedings of the International Conference on the Education
of the Deaf, Athens, July 2015.
Young, A., Bond, J., King, E. ( 2015 ) . Guide to working with adults who are d/Deaf. Community Care Inform
Adults http://adults.ccinform.co.uk/guides/guide-working-adults-ddeaf/