THE WILBERFORCE TRUST

WHY RESEARCH – WHAT RESEARCH SHOULD BE DONE?

8 November, Mayfair Conference Centre, London

REPORT OF A COLLABORATIVE WORKSHOP IN THE UK TO DISCUSS SOCIAL RESEARCH PRIORITIES ON VISUAL IMPAIRMENT

By Mike Brace OBE (VISION 2020 UK), Paul Herriotts (RNIB), Angela McCullagh (Thomas Pocklington Trust) and Femi Nzegwu (Guide Dogs) - December 2006

INTRODUCTION

This paper reports on a workshop to discuss future research priorities in the visual impairment sector, held under the auspices of the VISION 2020 UK Social Research Group. The sponsors were the Wilberforce Trust, Thomas Pocklington Trust, Guide Dogs and RNIB. VISION 2020 UK organised the day.

The Chair was Anthony Aston OBE. Dr Graeme Douglas of VICTAR, University of Birmingham, facilitated the group discussion sessions. These contributions are gratefully acknowledged.

The workshop attracted 42 people: major research funders, researchers, blind and partially sighted people, organisations representing blind and partially sighted people and people working in the field. Delegates are listed at Annex A.

AIMS

The purpose of the workshop was to bring people together to discuss why we need research and if we need it what kind of research should be done. The main activities of the workshop were stimulated by presentations, comments, questions and discussions.

The Chair posed a number of challenges, for example:

  • Do we need research?
  • How many projects in the last 5 years have ameliorated blindness and partial sight?
  • If we agree we need research, what kind do we need – e.g. medical/social/psychological/services/environmental.

Dr Barlow Wright of Brunel University gave a keynote presentation “Looking Both Ways: distinguishing between research on the blind and research for the blind”. He began with a thought-provoking history of perspectives on disability research.

Issues cited by Dr Wright included:

  • Indications that partial sightedness is more stigmatised than blindness
  • Visual impairment and mental health
  • How to balance research between age groups
  • Ethnic issues: e.g. in this country there are differences in infant mortality by ethnic group
  • Employment as an important indicator of life chances
  • How far education for pre-16s in the mainstream or special sectors is related to the balance of single impairment or co-morbidity
  • Visual impairment and learning difficulty, and children getting more and more behind
  • Civil rights aspects and disability provision
  • The very small proportion of people who are visually impaired who are in higher education

PRESENTATIONS

Short presentations were given by the three organisations who commission social research programmes about their research and plans.

1. Too little, too late: Provision of school textbooks for blind and partially sighted pupils.

This was given by Paul Herriotts, Corporate Research Manager and Sue Keil, Research Officer of RNIB.

The aims of RNIB’s corporate research department were outlined. This was followed by a presentation of some key findings from research carried out in 2006 by RNIB into provision of school textbooks in accessible formats in England, Wales and Northern Ireland.

The research identified a diversity of approaches to accessible textbooks provision. There were difficulties in obtaining Braille and large print textbooks “off the shelf” and many schools and services produced their own. The advantages and disadvantages of in-house production were discussed. The impact on pupils’ social inclusion and educational progress was highlighted, which took into account the views of teachers and of pupils themselves. Possible solutions to the current situation were put forward. The research findings helped to inform the November 2006 Right to Read campaign.

A copy of the full research report can be downloaded from:

2. Lighting The Homes of People with Sight Loss.

This was given by Angela McCullagh, R&D Director, Thomas Pocklington Trust, John Barrett, consultant project manager and Tony Scott, a tenant in independent Pocklington property giving a service user view.

Here, Pocklington gave a presentation of recent work where research had led to development and practical action in the field of lighting at home. Pocklington has commissioned research into lighting over some years from Reading University. This had shown that: many people did not have very good lighting, people did not know where to get advice and lives could be improved by better lighting. On this basis, Pocklington decided to trial new lighting in its own properties, with individual assessments and an evaluation. Tony Scott reported examples of the benefits he had experienced from the new lighting. He commented that good basic research, a technician who knows both his trade and visual impairment and a landlord who is prepared to back up research with action “and it seems everyone is a winner”! So his overall message was - carry on funding research.

3. Designing Research for Practical Application: Guide Dogs’ mobility agenda.

This was given by Tom Pey and Femi Nzegwu.

Guide Dogs' research is governed by the vision of the organisation that blind and partially sighted people enjoy the same rights, opportunities and responsibilities as everyone else. One such right is mobility. Blind and partially sighted people have a right to mobility and access. Indeed, it is a right to experience the same degree of ease or comfort and difficulty as everyone else. In other words, the aspirations of blind people, adults and children, are that they function as well as anyone else in society, with or without assistance. Guide Dogs commitment is to develop research to support this aspiration and right. At Guide Dogs mobility and access are seen as being fundamental to achieving so many of life's opportunities. Understanding the science, the training and the technology of mobility and access remain the main thrust of Guide Dogs research over the foreseeable future.

DISCUSSION SESSIONS ON PRIORITIES

There were two group sessions. A first group session generated five broad themes and a second session elicited some more specific ideas bulleted below:

Older/Retirement Age

Some distinction was made between older people (those beyond or approaching statutory retirement age) and those who were older again (e.g. over 80 years old). Also highlighted were issues of social inclusion and isolation and related 'leisure' interests and involvement. Technology and difficulties with packaging (access to instructions as well as being able to open packages) were especially identified in this group. Also identified was how this group may often experience bereavement following the death of family and friends. Example questions included:

  • How to engage with older people (when they do not want to be seen with disability) - risk of taking away independence. How to inform population that by keeping independence is to acknowledge that visual impairment, plus help, builds self esteem.
  • Assessing effectiveness of LV social services/voluntary sector support service interventions (medics will only listen to high quality research), which help to overcome social isolation and depression (particularly older people)
  • How could media be used to enhance older people's lives. Do we know what older people want from media? Information? DVDs?

Working Age

The main focus of this theme was in relation to employment - barriers and enablers to employment and implications of employment status (self concept, confidence). As with the 'older people' theme, sub-groups (e.g. younger adults) were identified as having different/distinct needs. Example questions included:

  • Transition from long term welfare benefits to employment
  • Do people with VI have the same access to social skills development and training as sighted
  • Transition from long term welfare benefits to employment
  • Do people with VI have the same needs to social skills development and training as sighted peers
  • What are the implications for/of sight loss on career choice (value of role models) - knowing someone who works in a certain profession - contact.

Children and Young People

Much of the research ideas surrounding children related to the impact of education systems. This includes the perennial comparison of mainstream and special school provision, but also more specific questions relating to access to information (different formats), teaching literacy and different types of staff (e.g. learning support assistants). Educational achievement was not seen as the only relevant outcome measure, but there was also concern about broader outcomes including entry into employment (and the support and pathways available), as well as issues of social inclusion and friendship. Example questions included:

  • Evaluation of different models of teaching blind and partially sighted children
  • Criteria used by teachers when deciding whether a child's main literacy medium should be Braille or other tactile medium, or large print
  • Identify factors that lead to social isolation or facilitate social inclusion of blind and partially sighted pupils at school
  • What are the educational outcomes for blind and partially sighted pupils?
  • Identify factors that influence post-16 choices of blind and partially sighted young people
  • Identify social and leisure needs of blind and partially sighted young people
  • Identify models of best practice relating to education and offer support for blind and partially sighted young people

Impact of Services at Time of Diagnosis

A number of research ideas related to what could be broadly called services pathway and service impact (both social care pathways and clinical/eye care pathways). This was generally not specific to age groups, but often reflected services at, or around, the time of diagnosis or registration. The research ideas also reflected different impacts of services, including notions of adjustment to sight loss and measures of quality of life (which in part is also related to discussions about method). Example questions included:

  • To what extent do existing models (service providers) meet the needs of customers in the first instance?
  • What impact does the attitude held by the visually impaired person towards their own blindness have on adjustment to visual loss? And how does it affect their potential?
  • Do different approaches to empowering visually impaired people improve impact of services?
  • Does what happens at point of registration impact on people's adjustment to visual loss?
  • How do you measure the impact on people's quality of lives upon diagnosis?
  • What impact has withdrawal of rehab services had on newly blinded people?
  • What messages can be found in existing literature?

Methods and Population

The ideas in this theme were more concerned with technical aspects of research, including sampling (and what ‘representative’ means), research design, ethics, dissemination and networking of research groups and databases of ongoing and completed research. Another distinct area of discussion was related to issues of defining and describing the population (including epidemiology). Also related to method, but discussed in more detail under 'Other' below, was the concern that research must be sensitive and inclusive of different minority groups. Example questions included:

  • How do we set our research priorities?
  • How much research is related e.g. to government policy, new day treatments or ongoing research.
  • Advisory committees - how do they function? Who? Where?
  • How do we ensure high quality research (where should it be done) – At universities? By whom?
  • Is peer review an appropriate tool (agreed and transparent mechanism)?
  • How do we ensure ethical governance of research?

Other

An array of other themes cut across the different age groups as already identified – service impact and pathways being the most commonly occurring. Another repeated issue was related to sub-groups, including ethnic minority groups, people with multiple/complex conditions other than their visual impairment and different levels of vision (including those not registered as blind or partially sighted). Other topics, perhaps not mentioned elsewhere, included technology (and technology and mobility), attitudes of the public and self-concept and lighting.

PLENARY DISCUSSIONS AND CONCLUSIONS

During a final plenary and panel session, the three commissioning organisations, RNIB, Guide Dogs and Thomas Pocklington Trust, welcomed the ideas expressed and the day as a whole was welcomed as an example of what can be achieved when organisations are working to a common goal.

The following general principles were accepted in the summing up:

  • There is a need to investigate further the status of research in the sector and to look at the potential to use our research for wider change, e.g. in the social care sector.
  • Research needs to be practical, in order to affect quality of life of individuals: researchers need to think ahead to the potential practical outcomes of their work.
  • This should be the beginning of a long term collaboration on research for the benefit of blind and partially sighted people and for the prevention of blindness.
  • Another important principle is the part that blind and partially sighted people need to play in research: they need to be consulted on what is done in their name and involved in how that is carried out (direction, management etc).
  • The primary objective ought to be to put blind and partially sighted people in control of their lives. We can do this by focussing and directing research in a way that achieves that outcome, so that we gain ultimate inclusion in mainstream of society.

ACTIONS

The following actions were agreed:

  • The commissioning organisations would take back the results of the workshop to their own organisations, discuss these in the Social Research Group and consider how to use the results to help co-ordinate research further in the sector.
  • For a trial period, a facility for debate would be provided on the VISION 2020 UK Social Research Group microsite.

FINAL COMMENTS

This is the first workshop of its kind. It is intended to repeat the exercise probably in two years’ time. The coming together of the disparate commissioning organisations was seen as a very positive and welcome move by the sector in the UK.

ANNEX A

Attendance List

Tony Aston OBECHAIR

John BarrettThomas Pocklington Trust (PRESENTER)

Jeff BashtonSocial Care Consultant

Mike Brace OBEVISION 2020 UK

Jennifer BrowerABDO

Sarah BuchananThomas Pocklington Trust

Sid CarpenterQAC

Iris CorfieldRoyal National College for the Blind

Gary DooleyGuide Dogs

Dr Graeme Douglas University of Birmingham (PRESENTER)

Angela EdwardsRNIB

Gabor ErdelyiRLSB

Laura FoleyGuide Dogs

Derek ForbesDuke-Elder Eye Unit/Merton Vision

Dave GunnRNIB

Paul HerriottsRNIB (PRESENTER)

Prof John HilbourneQAC

Amanda KayeChristopher Grange

Peggy KeaneAction for Blind People

Sue Keil RNIB (PRESENTER)

Prof John LawrensonCity University

Dr Tom MargrainCardiff University

Dr Angla McCullaghThomas Pocklington Trust (PRESENTER)

Pritti MehtaRNIB

Tom MuldowneyGuide Dogs

Dr Femi NzegwuGuide Dogs (PRESENTER)

Tom Pey Guide Dogs (PRESENTER)

Dr Angela ReidyLondon Metropolitan University

Tony ScottThomas Pocklington Trust (PRESENTER)

Linden SmithCHECT

Robin SpinksSight Savers Int.

Alwyn StephensonOBAC

Kirstine StewartChristopher Grange

Angela StokesRNID

Janet StonehouseThomas Pocklington Trust

Deborah TaylorAction for Blind People

Roger Wilson-HindsScreenreader.net

Alison WoodThomas Pocklington Trust

Dr Barlow WrightBrunel University (PRESENTER)

Margaret Alexander)

Colin Linton)Administrators,VISION 2020 UK

Malcolm Roads)