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!

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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

rosemary.oram@manchester.ac.uk

07799 773012 (text) or Alys Young

alys.young@manchester.ac.uk 0161 306

7747

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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-

coleman@manchester.ac.uk

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: sord@manchester.ac.uk

* 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 sord@manchester.ac.uk.

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/