RNIB Understanding the Needs of Blind and Partially Sighted People: their experiences, perspectives, and expectations
Report
May, 2009
Prepared by: SSMR at the University of Surrey
Contents
RNIB Understanding the Needs of Blind and Partially Sighted People: their experiences, perspectives, and expectations 1
Report 1
May, 2009 1
Prepared by: SSMR at the University of Surrey 1
1. Executive Summary 5
Overview of services 6
Key life changes 6
Differences related to onset of sight loss 7
Support received 7
Work/Employment 8
Emotional support 10
Information needs 10
Transport 11
Education 11
Enablement 12
Personal care budget 12
Needs of different groups 13
Key informants 15
Carers 16
Parents 17
Further support needed 18
Possible need for specific services identified 19
2. Introduction and Objectives 21
Research Objectives 22
3. Research Method and Sample 23
Approach taken 23
Qualitative Method 24
Sample details 24
4. Literature Review 28
Experience of loneliness and the need for understanding 32
Addressing personal and social needs 35
Environmental Needs and Experiences 36
Assistance for living at home 36
Assistance outside of the home 37
Access to Information 38
Addressing Environmental Needs 40
References 41
5. Detailed Findings – Key Informants 47
5.1 Key Needs 47
5.2 Long term vs. recent sight loss 53
5.3 Satisfaction with services 54
5.4 Overall service provision 56
5.5 Employment and Education 58
5.6 The needs of different groups 62
5.7 Information 68
5.8 Good practice 69
5.9 Key issues 71
6. Detailed Findings – Blind and Partially Sighted Respondents 74
6.1 Key life changes 74
6.2 Support received 83
6.3 The needs of different groups 103
6.4 Long-term loss of sight (from birth) 112
6.5 Changes over time 114
6.6 Sudden sight loss 116
6.7 Reactions to sight loss 118
6.11 Further support needed 132
7. Detailed Findings – Carers 149
7.1 Informal carers 149
7.2 Carers in a residential home 156
7.3 Parent Perspectives 157
8. Detailed Findings – Blind and Partially Sighted Children 169
8.1 Interviews 169
8.2 Leisure 186
Appendix 1: Case Studies 1
Case study 1: Jill 2
Case study 2: Ali 5
Case study 3: Mary 7
Case study 4: Malik 9
Case study 5: Erica 11
Case Study 6: Aisha 13
Case Study 7: Victoria 16
Case Study 8: Philip 19
Case Study 9: Rosemary 21
Case Study 10: Stephen 25
Appendix 2: Accompanied Journeys 27
Walk 1: Accompanied Walk Notes 28
Walk 2: Accompanied Walk Notes 31
Walk 3: Accompanied Walk Notes 32
Walk 4 & 5: Accompanied Walk Notes 34
Walk 6 & 7: Accompanied Walk Notes 36
Walk 8 & 9: Accompanied Walk Notes 40
Walk 10: Accompanied Walk Notes 44
Main Sample 48
Children 58
Age Summary 60
Appendix 4: Interview Topic Guides: Key Informants; Blind and Partially Sighted Adults; Carers; and Parents and Children 61
Topic guide – Key informants 62
Topic Guide – Groups/Interviewees with sight loss 64
Topic guide – Carers for those with sight 67
Topic guide for children and parents 70
Appendix 5: List of Informant Organisations and Acknowledgements 73
1. Executive Summary
The overall aims of the research were to gain an understanding of the experiences, needs and expectations of blind and partially sighted people; to explore ways in which they can be supported to lead independent and fulfilling lives; and to investigate how needs change over time.
This report presents a summary of information collected through in-depth interviews with people who are blind and partially sighted; recommendations are also included. The main body of the findings in the full report includes verbatim quotations from blind and partially sighted people themselves providing a rich insight into their feelings and experiences.
An innovative approach was adopted; researchers accompanied individuals on journeys around their locality, using video recording to identify specific difficulties encountered and how the individual would negotiate their environment. The researchers were also able to explore specific elements of the individuals’ typical every day journey highlighting improvements that would be welcome. Video footage will be available to RNIB for presentation purposes.
The study provides substantial qualitative evidence for many of the findings from earlier studies summarised in the literature review. It describes the actual experiences of those with sight loss, highlighting their own perceptions of their situation and needs, and illustrating these with their own words. It focuses very largely on the social aspects of being blind or partially sighted and provides a basis for enhancing the inclusion and independence of those with sight loss.
This report presents a summary of information collected through 83 in-depth interviews with blind and partially sighted people in England, together with 18 interviews with informal carers, and with 22 representatives of organisations dealing with people who experience sight loss. It also includes interviews with 10 blind or partially sighted children aged 5 to 15, and their parents. This information is supplemented by in-depth information from 10 ‘case studies,’ where a second interview was conducted, and from 10 ‘accompanied walks’ where interviewees actually showed researchers some of the difficulties they encountered in everyday living. The initial interviews were carried out between November 2008 and March 2009, with case studies and accompanied journeys completed in April, 2009.
There were 46 females and 37 males included in the adult sample of those with sight loss, with ages ranging from 16-94. Respondents had a wide range of conditions and levels of sightedness: 49 reported that they were blind, and 34 were partially sighted. Twenty-two people were in employment (19 full-time), 32 were retired, and the remaining sample included students and those who were unemployed, plus 10 stating they were volunteers. Ten respondents were from minority ethnic groups. The sample was drawn from various regions of the UK, with 58 from the South-East, 16 from the North/North-East, and 9 from the South/South West.
Overview of services
Interviewees described a wide range of services and support that they received. However, the variations in provision between different geographical areas were substantial. Ideally, all services should be available in all areas, e.g. initial support and information, telephone contact, assistance in obtaining benefits, in seeking employment, mobility training, etc.
The single most important factor in the design and delivery of services is to recognise that people with sight loss have highly individual needs. Hence any service provision needs to take this into account and to seek to operate a personalised care agenda.
When support is provided is as important as what support is provided. The key point for support is at the time of a diagnosis of the eye condition and during the transition stage from sight to blindness or partial sight. However, once support is in place it needs to be continued. A difficulty with formal support is that it is likely to be delivered at a point in time, but without ongoing support. To some extent this is simply the way that the support delivery is set up, but it is also affected by funding when cuts can mean that a service is no longer available.
It is also important to bear in mind that many issues relating to service provision are constantly changing, e.g. IT, the economic situation; therefore there needs to be a continual reassessment of services offered to blind and partially sighted people. Research into understanding needs and service provision should also reflect societal, cultural, and economic changes.
Every effort needs to be made to maintain normality in the life of someone diagnosed with sight loss. Service provision should take into account an individual’s personality, previous situation, interests, support networks, and so on, in order to provide appropriate and timely support.
Key life changes
The greatest change in the lives of many blind and partially sighted people had been the loss of independence that accompanied the loss of sight. Closely allied to this were transport difficulties, particularly arising from not being able to drive.
Key life changes noted included:
· Loss of flexibility and spontaneity, with every outing having to be carefully planned
· Loss of reading so that a person cannot deal with items in the post or read for pleasure
· Loss of employment
· Inability to carry out household tasks, including cooking and cleaning
· Time and effort required to accomplish simple tasks
· Inability to shop alone
· Failure of other people to treat them as the individual they have always been
· Difficulty in forming new social relationships because of lack of non-verbal cues or eye contact
Differences related to onset of sight loss
It was clear that those who had been blind or partially sighted from birth were better adapted to their situation because it was all they had ever known in life. They appeared more confident in getting about, using public transport, including bus, train and Tube. They were often more embedded in a ‘blind’ culture, with many friends who also have sight loss, particularly if they have attended schools for those who are blind and partially sighted.
For some of those who have been blind or partially sighted all their lives, there may have been a time at which their sight deteriorated further to the extent that they could no longer do things that they had been able to do in the past. At this point they did not necessarily know how to access further support required. A further difficulty for some was that, although the deterioration in their sight was gradual overall, its progress was not even and was often unpredictable.
A minority of interviewees had lost their sight quite suddenly. The initial impact on them included a large element of emotional upset, often followed by depression and a feeling that their life was over. The key difficulties they voiced were the restrictions on their mobility. Having had no opportunity to gradually adjust to deteriorating sight, they typically lost all confidence in going out alone. People who had lost their sight suddenly were particularly aware of the immediate transition from being a capable individual to being treated, in many instances, as someone incapable of carrying out simple tasks and activities.
Support received
Many interviewees reported receiving little support at the time of diagnosis. In particular, few had been offered any emotional support or counselling when faced with a devastating life change.
Many blind and partially sighted interviewees were heavily dependent on informal support from partners or other family members. This could cause stresses in a partnership and for older people the loss of a partner could mean being left with no everyday support. Informal support was particularly important in relation to getting out of the home and for small household tasks.
Voluntary organisations were key in providing support, particularly through social groups and the provision of information and resources. Little formal support from statutory agencies was provided to most people, particularly ongoing support, and there were reservations about the intervention of Social Services in private lives. The support varied considerably between different local authorities.
The most important support provided by RNIB related to aids for carrying out tasks and, for some, the provision of rehabilitation training. Charities, including local organisations, are in a good position to provide a central reference point for information and access to support.
For middle aged and younger interviewees, the biggest impact in terms of support had been the provision of appropriate technology. Software providing an interface with the computer for those with sight loss opened many further information and support possibilities.
Most interviewees had private arrangements for cleaning, shopping and other household tasks, but their provision had significant financial implications.
While the financial support provided by the Disability Living Allowance was much appreciated, this was generally provided at the lower level and was widely felt to be inadequate. It represented a failure to appreciate the full impact of living with sight loss. It was most commonly used to provide transport (taxis) and to pay a cleaner.
Work/Employment
For those of working age, a key area of support required, but not always provided, was assistance to obtain employment. Difficulties with employment resulted in economic limitations for many blind or partially sighted people. Hence any new services need to be developed bearing in mind the cost to the user. In the first instance support should be directed at encouraging someone diagnosed with sight loss to remain in their job, as this presents fewer difficulties than trying to access another job at a later stage.
A number of interviewees expressed disappointment that charities such as RNIB and Guide Dogs for the Blind do not employ more blind and partially sighted individuals. There was also a need for RNIB to work collaboratively with people with sight loss, providing services, mainly advisory, to others with sight loss.
Many of those in employment were those who had been blind or partially sighted throughout their lives and may have received training for appropriate employment opportunities. However, these opportunities are becoming more limited, e.g. telephone operators, touch typing. Other employment to which the long-term blind and partially sighted had been directed included IT, and in a couple of instances, piano tuning.
Experiences with assistance provided at Job Centres was varied. There was a need to have staff at Job Centre Plus who have specific knowledge of the needs of those with sight loss. Such a specialised member of staff could perhaps cover several centres. Access to Work was felt to be poorly promoted by the government and hence many employers do not know about this scheme which will contribute to the cost of equipment in the workplace for blind and partially sighted individuals. JCPs could help those experiencing sight loss by providing voluntary work with employers that would help to build the confidence of blind and partially sighted people.
There is a need to make full use of an individual’s talents and intelligence at work. There were instances where people with sight loss had felt held back by their condition in their working situation even though this did not directly affect their ability to do a job.
Self-employment in running a small business appeared to be a satisfactory employment route for a number of interviewees who had taken this approach to work. Instances including selling specialist items or services through a shop or via the internet, and providing advisory services related to sight loss. Greater support for those planning to set up a business would be a valuable approach to assisting with the employment problems of the blind and partially sighted.