RNIB Talk and Support Tele Befriending Service

A longitudinal study of the social and psychological benefits for adults with sight loss from participation in weekly telephone social groups

March 2008

Alex Saunders BA (Hons) MSW Freelance Researcher [email protected] 1. Acknowledgements

This research project lasted 15 months, each stage of the research strategy carefully planned and executed. Jo Stapleton (Service Manager, RNIB Talk & Support) played a crucial role in project planning and overseeing progress throughout. Dr Pritti Mehta (Senior Research Officer, RNIB) offered advice with the research timetable and relevant literature. Val Slade (Operations Manager, RNIB Talk & Support) made some important observations when she helped trial the questionnaires and offered excellent administrative support. Gary Dooley at Guide Dogs was very helpful with the questionnaire design. Finally, Barry Luckock from the University of Sussex acted in an advisory capacity, providing academic expertise and intellectual debate to help sharpen my work. I would like to thank all of these people for their important and insightful contributions. Most of all however I would like to thank the 56 Tele Befriending group participants and RNIB members whose thoughts and feelings so richly inform this report.

2 2. Executive Summary

2.1 Introduction

RNIB Talk and Support provide weekly telephone social groups (Tele Befriending) to adults with sight loss from across the UK. The purpose of the service is to provide opportunities for accessible social contact and peer support to people isolated by sight loss. The service is delivered using teleconferencing technology. Participants require only a landline telephone to access the service. A network of approximately 90 volunteers from across the UK (70% of whom have sight loss themselves) support the service as telephone group facilitators, administration and participant care volunteers. Over the last 12 months, approximately 770 adults with sight loss from across the UK have taken part in Tele Befriending groups.

Tele Befriending provides ongoing and open ended weekly social contact and peer support. Approximately one third of current participants have been active in the service for 12 months or more. A number of benefits arising from short-term participation in telephone groups for people with sight loss have been established. These benefits include improved general wellbeing and mental health of participants (Thomas, T and Urbano,J. 1993. 'A telephone group support program for the visually-impaired elderly' Clinical Gerontologist Volume 13 (2):1993, 61). In order to establish how the benefits of telephone group participation might change and evolve over time, Talk and Support commissioned an independent longitudinal study. The aim of the research was to produce a psychologically rich in-depth analysis of participants' experience of the service in order to establish the following:

 What are the reported benefits of long term participation in Talk and Support Tele Befriending groups?

 How is telephone friendship for people with sight loss different from face to face friendship groups?

100 structured qualitative interviews were undertaken with a cross section of Tele Befriending participant sample groups. Interviews were undertaken with a tracking group of 25 participants (47% of the available sample) prior to entering the service, and after three and six months of participation. During these interviews participants were asked to comment upon their sight loss and domestic circumstances; their daily lives and level of practical functionality as a person with sight loss; their feelings prior to and after joining a Tele Befriending group.

3 Retrospective interviews were undertaken with a sample group of 25 participants, active as telephone group participants for 12 months or more (17% of the available sample). As a control group, interviews were undertaken at three monthly intervals with a small group of six newly recruited RNIB members. These individuals were not in receipt of the Tele Befriending service.

The average age of both Tele Befriending sample groups (73 years of age) was representative of the overall Tele Befriending population. At the time of the study 52% of participants were above 76 years of age, 30% between 55 and 75 years of age, 18% of participants between 18 and 55 years of age.

2.2 Research findings

What are the reported benefits of long term participation in Talk and Support Tele Befriending groups?

2.2.1 Pre-group sample

Of the 25 people interviewed, 16 lived alone. 10 participants felt unable to leave the house independently. Eight participants never went out unaccompanied. Two participants had not left their homes in over six months.

Participants described practical problems with aspects of daily life arising from their sight loss:

"My sight is going down fairly fast. It just swallows so much of the day simply living".

19 of the 25 people in the sample identified deteriorating sight loss in conjunction with health and mobility problems as a major barrier to accessing leisure and social opportunities.

"It's too difficult now .. you feel you're holding other people up".

Participants identified the loss of confidence arising from sight loss as the key reason for the reduction in their social and leisure activities.

In terms of emotional support, 15 of the sample group said they had no-one to talk to or would try to cope by themselves.

4 "Both my sons would be very responsive but I avoid it like the plague .. they have their own lives and I wouldn't like to put them under any more stress".

19 people described themselves as socially isolated as a result their loss of sight. This had affected people's abilities to make and maintain friendships.

"When I first went blind, so-called friends in the pub used to walk by me .. they don't come near me any more."

Participants expressed a variety of reasons for wanting to join a Tele Befriending group, including a desire for friendship, intellectual stimulation and the expansion of their social world.

"I hope to get some friends, even though I'll never see them".

Nine participants were explicit about wanting the social contact offered by the group to alleviate feelings of isolation and loneliness.

"I feel this [telephone group] talk will compensate for not being able to get out. I want contact with another human being."

Participants also identified the opportunity to speak to other people with sight loss as a major potential benefit.

"Maybe someone will know of something I could do and enjoy".

2.2.2 After three months

Three months after joining a Tele Befriending group, 13 participants were still active with the service. Five participants were not active through circumstance but wished to rejoin. Seven participants had opted out of the service for a variety of reasons including cost (participants make a small financial contribution after a free trial period), ill health and incompatibility with fellow participants in the group.

Of the 13 active participants, all identified common benefits from participation in their telephone group. Reported benefits included meeting new people; intellectual stimulation; discussing sight-related issues with people in a similar situation; and having something to look forward to. This had given people an added purpose to their lives.

"I used to have nothing to look forward to, but now I have."

5 Although participants reported few changes to their domestic circumstances, the exchange of practical information, hints and tips shared within the groups had impacted on the practical functionality of participants.

"I've got adaptations for my microwave and my kettle. People in the group have suggested these things. I contacted my social worker".

Being able to share experiences as part of the group had helped participants to put their own lives and sight loss into context.

"It does make you feel a lot more confident, yes. It makes you realise you're not the only person in the situation you're in. That's a big comfort".

Supporting and caring about others had also resulted in increased self-esteem and feelings of self worth.

"People are interested in what I've got to say".

All 13 of the active Tele Befriending participants had begun to form connections with other group participants.

"To my surprise, I seem to be getting quite fond of people".

After 12 weeks, however, participants rarely defined these connections as friendships

"You begin to know them. When you become a friend I don't know".

Feelings of reported social isolation amongst the sample group remained high. Significantly, however, after three months in the service participants reported feeling less lonely as a result of the social contact received within their Tele Befriending groups.

"Living on my own and not being able to get out I'm still lonely, but the group does help a lot."

2.2.3 After six months

Six months after joining a Tele Befriending group, nine participants remained active with the service. Four participants had left the service for a variety of reasons including changing circumstances and poor health.

6 The importance of the group in participants' lives had grown over the preceding three months. Participants described how they were "getting to know people better" and how this had increased the enjoyment and significance of the group.

" We're all more willing to talk about how we manage and suchlike".

Whilst few people talked about friendship at the three month stage, the subject now became prominent amongst participants. The perceived strengthening of social connections within the groups intensified the psychological benefits and support mechanisms identified by participants at three months. Most profoundly, the groups had begun to make participants feel differently about their sight loss.

"It makes you look at yourself more carefully."

By listening to others, participants began to reframe their own experiences.

"Without the group I think I might be a lot more sorry for myself."

This in turn had influenced the context in which sight loss was discussed within the groups.

"We do talk about it [sight loss] a lot but we talk about the ways in which we deal with it. Positive things."

After six months, participants now described group participation as making a significant difference to their lives. Participants enjoyed the social conversation and regarded the group as an escape from their daily lives.

"It's like being in prison and getting a visitor".

As personal involvement with the group increased, participants received an emotional boost by reliving and anticipating the weekly telephone group experience.

"I look forward to the hour that we do have and it's on mind for the rest of the week."

2.2.4 One year plus sample group

After 1 year of more of regular participation, 23 of the sample group identified Tele Befriending as a significant part of their social life and support network.

"It's given me an outgoing, something completely outside of my life."

7 As a result of the social group experience and friendships formed with group members, participants felt better about themselves as their social world expanded.

"It's really important to me. It has widened my horizons".

Furthermore, Tele Befriending had become part and parcel of participants' daily lives rather than a substitute for other activities and social opportunities.

"I had to have something to replace the things I couldn't do any more. It was something to fill the gap. That was the original thought. But now it's just part of my life".

For many participants this represented a significant change of the function of their telephone group.

"It's a norm now .. initially it [the group] was a major event because I was talking to people handling sight loss when I couldn't handle it."

The psychological benefits reported by participants after six months of telephone group participation had once again increased.

"From the beginning it's been a forum for encouragement .. that feeling has never gone".

2.2.5 Control group

Five of the control group members lived with partners and as a consequence had good emotional and support networks in place. All six members, however, felt frustrated by their sight loss and found aspects of daily life difficult. Individuals reported feeling isolated by their sight loss and as a consequence found it difficult to maintain and form friendships.

"I don't make the first advances any more."

Four individuals joined RNIB as a Member with the hope of finding out practical information to assist with their daily lives.

"I am hoping that I've got someone [RNIB] I can ask questions, that I can phone up and who knows about the problems."

8 Members had joined to feel part of a sight loss community and in order to make a financial contribution to RNIB and, in doing so, help other people through RNIB's work.

After three months, members described no significant change in how they managed and felt about daily life with sight loss as a result of becoming an RNIB Member. However, two people had purchased products from RNIB and another had been in touch for benefits advice. The membership magazine, Vision, was found to be useful and informative by all members.

"When it comes you always open it and say 'what's new this time'. It's really quite good".

Whilst RNIB membership had brought about no changes to participants' feelings about their sight loss or sense of social isolation, membership had proved to be of practical and psychological benefit to the sample group.

"It's sitting in the background in case I need assistance or some form of information in the future".

2.3 How is telephone friendship for people with sight loss different from face to face friendship groups?

To determine the impact of the telephone group environment upon participants' ability to socialise and form friendships, sample group participants were asked to compare their experience of the telephone group with experiences of face to face social group contact.

Participants from each of the three sample groups described difficulties maintaining and establishing friendships in a face to face context.

"In ordinary meetings of several people, because I cannot see I can't tell when they [other people in the room] have finished speaking and that means you break in at the wrong moment".

The inability to respond to visual clues and gestures resulted in people feeling left out and isolated from social contact. The individual's level of functional sight informed the degree to which isolation in a face to face context was experienced. Participants from the six month tracking sample group spoke specifically about a lack of visual awareness amongst friends, family and society in general.

"I've gone through quite a lot of humiliation with people".

9 As a consequence of sight loss, the majority of participants reported a loss of confidence in social situations.

"My sight loss has changed my personality quite a lot. I used to be very outward going".

Prior to joining a Tele Befriending group, the majority of people interviewed expressed a preference for face to face contact.

"Of the two courses, one would prefer personal contact, but rather on the phone than not at all".

Over time, however, participants' perceptions of telephone social contact in comparison to face to face social contact changed. The telephone group environment offered participants a 'level playing field' in which sight loss became irrelevant to social interaction.

"It's different because you're not watching anybody you're just concentrating on what you're hearing and what people are saying. That's good. It's liberating".

As a consequence, participants found it easier to make and maintain friendships within a telephone group context.

"It's been easy to make friends in the group .. I've certainly never found that in a room to room basis [group situation]."

Participation in a telephone group from the comfort and accessibility of home also removed many of the practical difficulties such as access to transport and mobility issues experienced by participants attending face to face events. After a year of more of participation in Tele Befriending groups, 12 participants (approximately half of the sample group) felt that telephone friendship offered a better experience than face to face meetings in a group.

"I was invited to join a group up the road but I turned it down. I preferred this one".

2.4. Conclusion

The longer people remain active with the Tele Befriending service, the more intensive the psychological and social benefits for participants become over time.

After six months of telephone group interaction, participants reported feeling less lonely and isolated as a result of their sight loss. Participants established meaningful friendships and connections within the telephone groups. This

10 contributed to increased confidence and improved general wellbeing amongst participants.

As a result of social contact with peers, participants felt differently about their sight loss. After six months of telephone group participation, many participants felt more positive about their sight loss and situation. This contributed significantly to improved general wellbeing.

After six months or more in a telephone group, the positive impact of the group extended beyond the instance of participation. Participants thought about their group and fellow participants during the week. This provided a real and significant psychological boost for participants.

Friendships formed within the virtual telephone group environment significantly expanded participants' social horizons. This helped to counteract feelings of social exclusion and isolation experienced by participants as a result of their sight loss. This was a significant psychological benefit for participants.

By sharing experiences and information within the groups, participants gained practical knowledge about sight loss aids and equipment. This improved participants' functionality in the domestic environment.

Rather than a replacement for other social opportunities and activities, Tele Befriending became part of participants' daily lives. This reflected the changing function of the group for participants over time.

Rather than being a barrier to friendship and social interaction, the telephone group environment demonstrated clear advantages in comparison to face to face contact for people with sight loss. Participants described the telephone group environment as "liberating."

After one year of participation in a telephone group, 50% of participants found their telephone group to be a more rewarding experience than face to face social contact.

11 3. Introduction

3.1 Methodology

This report starts with a brief summary of how RNIB Talk & Support Tele Befriending has developed nationally since its inception in 2001. This is followed by a discussion of the background to this research; in particular its origins in debates about how to support people who are blind or partially sighted. There is then a brief overview including findings from a small-scale evaluation carried out during the early stages of the Tele Befriending service in 2003-04. The impetus behind this current piece of research grew out of the earlier evaluation. The methodology used for this much larger evaluation of Talk & Support Tele Befriending is then outlined. The research findings are introduced in four stages. Firstly, participants’ views on a range of issues prior to joining a Tele Befriending group are presented. Secondly, participants thoughts and feelings after three months active in a group and thirdly after six months are outlined. Fourthly opinions from a group of people who have been part of a Tele Befriending group for more than a year are given. Finally there is a concluding discussion of the main themes to emerge from this research, including lessons about the best way to support people who are blind or partially sighted within RNIB Talk & Support Tele Befriending services.

Tele Befriending is available to anyone in the United Kingdom who has access to a landline telephone. The purpose of Tele Befriending is to bring together over the telephone, people facing the challenge of sight loss, in a weekly social friendship group. RNIB Talk & Support hope this regular, ongoing peer support will assist people with sight loss to live as full and active lives as possible. RNIB Talk & Support Tele Befriending is one of the few services in the UK that offer this unique combination of ongoing interaction and regular intervention to people with sight loss. Each Tele Befriending group takes place at the same time and on the same day each week. Groups run during regular office hour’s i.e. between nine a.m. and five p.m. through Monday to Friday. Each group lasts for 55 minutes and consists of six people plus the volunteer facilitator. This basic format has remained more or less the same from the outset. The service is genuinely UK- wide, with participants from as far afield as Scotland, Wales, Northern Ireland and the Isle of Man.

The first national Tele Befriending groups were piloted in late 2001. The scheme began with five or six groups, catering for approximately 20 people. At the time of the initial pilot, the service was only available in specific parts of the country. The service built up slowly over time, partly because during this pilot period all the

12 training for specific roles, the mechanisms for matching people within groups and the service infrastructure were developed. This practical evolution and learning through action approach to service development meant that by the time the 2003-04 evaluation was carried out, there were about 20 groups connecting about 100 people. As of March 2008 however, there are now 75 groups with about 450 people active at any one time. Delightfully there are eight original members from 2001 still taking part in a Tele Befriending group.

Not only have the number of groups and active participants grown beyond all recognition, but the number of volunteers working within Tele Befriending has also expanded rapidly. Tele Befriending group facilitators are all volunteers, 70% of whom have sight loss themselves. Most of the remaining 30% of volunteers working with Talk & Support have other disabilities that make it difficult for them to volunteer in other ways. The fact that Tele Befriending facilitators’ work from home using the telephone makes this possible. In 2001 there would have been five or six volunteers, increasing to about 20 by 2003. All volunteers would have been attached to a group in the role of facilitator. Today there are approximately 75 volunteers leading groups, but also a team of volunteers carrying out additional tasks within Tele Befriending. This includes conducting initial interviews with participants, phoning participants to let people know about groups, providing cover when regular facilitators are unavailable and so on. This means there are now over 120 roles undertaken by active volunteers within Talk & Support.

3.2 Setting the context - Literature review

About two million people in the UK have a serious sight problem. This can range from being unable to see a friend across the street or read newsprint even with the aid of glasses through to being registered as blind. Approximately 1.7 million people with sight problems (85%) are older people, aged over 65. These people come from every social stratum and represent the full diversity of the UK population. The one thing they have in common is that their eyesight significantly affects the way they function on a day to day basis (Pey, Nzegwu and Dooley 2006).

Most people with sight problems start to lose their sight in later life, experiencing progressive deterioration rather than the sudden onset of traumatic sight loss. Although sight problems are common in the older population, this risk increases rapidly with advancing age, especially for women (Evans et al. 2002). They estimate that as many as 1 in 3 people over 90 suffer from significant visual impairment (Evans et al. 2002, 799). However, the vast majority of people with a visual impairment are not blind but have varying degrees of limited sight. Only 4%

13 of those registered as blind have no light perception whatsoever (Lovelock, Powell and Craggs 1995, 10).

The figures for older people with sight loss are reasonably reliable. A recent review of available literature commissioned by the RNIB contains a range of prevalence rates and offers the most accurate set of estimates to date (Tate et al. 2005). However scant data means the same cannot be said for the UK’s working population.

It is estimated that approximately 250,000 people aged 16-65 have sight difficulties. Similar problems exist in giving reliable figures for children with sight problems. The Tate et al. (2005) study estimates there are approximately 25,000 children with sight problems in the UK, about 12,000 of these children having other disabilities. What we do know is that every day another 100 people start to lose their sight.

There are 378,000 people in the UK who are registered as blind or partially sighted. Ophthalmologists decide if someone can be registered as blind if they are able to read only the top letter of the eye chart from three metres or less. A person can be registered partially sighted if they can read only the top letter of the eye chart from six metres or less. The fact that a doctor of consultant status must certify eligibility for registration as blind or partially sighted is unique to visual impairment. Social services registration as physically disabled for example has no similar requirement (Lovelock, Powell and Craggs 1995, 7). Perhaps as a consequence anything up to 20 per cent more people should be registered but aren’t i.e. an additional 74,000 people. Moreover, registration is not just a ‘medical nicety’. It is a process that sets in motion rehabilitative work in the home and the wider community, the provision of low vision equipment, and an assessment of social care needs by social workers (Percival 2003, 7). Percival exposed significant gaps in the provision of such services, not least because of the failure to register people. It is also likely that over 4 million older people do not have their visual difficulties identified and possibly treated because they do not have regular eye examinations (Tate et al. 1995).

3.3 The impact of sight loss

There is a huge array of research material that describes in detail the emotional and practical consequences of sight loss. A sight problem can affect many different aspects of a person’s life, ranging from mobility, their ability to carry out household tasks and their emotional state (Pey, Nzegwu and Dooley 2006). The impact of a sight loss on an individual is a complex result of individual characteristics, history and situational context. Things that are difficult for one blind person may not be so for another, and irrelevant to the lifestyle of another.

14 The following is only the briefest glimpse at some of the contributions to this debate.

In an independent 2004 report, it highlighted the link between the benefits ‘psychologically’ of RNIB Tele Befriending and how this had a positive impact on the way participants interacted with the ‘social world’. Whilst this was an important finding, it is an artificial distinction, and suggests a simple linear relationship between the two. However, separating the effects of sight loss and Tele Befriending upon participant’s psychological and social world’s formed a starting point for this larger project and the following discussion has been framed in the same way.

Tele Befriending groups use peer support and social networking as a means of alleviating some of the effects of sight loss at a psychological and social level.

3.3.1 The psychological world

A person’s psychological world refers here to the way they feel about themselves as result of sight loss. There is a vast amount of research material that suggests people aged 65 years or older are more likely to suffer from depression than people under 65. Whilst figures vary according to different ways depression is defined and measured, what is clear is that depression is one of the most prevalent conditions in later life and a significant health problem among older people (Godfrey with Denby 2004, 3). They found that approximately 15% of older people living in the community suffer from depression but that this figure doubles if people with depressive symptoms at a sub case level (i.e. deemed not sufficient to merit intervention) are included (Ibid. 2004, 35).

Oppegard et al. (1984) found that sight loss was related to depression and anxiety among older adults, but “only for those person’s with less than average access to the social and care giving support of a family network. Such data are consistent with the social support as a ‘stress buffer’ hypothesis and re-affirm its importance as an adjustment variable in old age” (Oppegard 1984, 292). In other words, the better support people have the more readily they are able to cope. The existence of an intimate, confiding relationship is a major factor in mitigating the impact of psychological difficulties. Older people without confidantes report more psychological distress and higher rates of depression (Godfrey with Denby 2004, 15). Conversely, older people who have close personal relationships available report higher morale and lower levels of loneliness and social isolation. Loneliness in old age is linked to the depletion of relationships as a result of the loss of functional abilities, chronic illness and bereavement (Ibid. 2004, 16).

15 Barron et al. (1994) describes how the availability of a social support network becomes more important as one becomes older. This is due to declining health, limited income and diminished daily responsibilities. Social support offers links to other people and a perceived and actual source of help and advice if necessary. Not surprisingly, people who weren’t lonely had larger support networks and were more satisfied with them than people who described themselves as lonely (Barron et al. 1994). Loneliness was also linked to various health problems, including failing sight.

A number of worldwide studies have suggested that visual impairment is associated with higher rates of depression (Evans, Fletcher and Wormald 2007). The first British study to investigate the association between depression and anxiety and visual impairment of older people in the UK, found that visually impaired older people had a 25% increased odds of depression compared with older people with good vision (Evans, Fletcher and Wormald 2007, 286). Some of this depression can be attributed to factors other than visual impairment, in particular functional impairment. The likelihood is that people with visual impairment are more likely to experience problems with functioning, which in turn leads to depression (Ibid. 2007, 287).

Percival analyses research by Hanson et al. (2002) to unlock powerful feelings of self doubt, a lack of self worth and a tendency to feel a ‘liability’ amongst visually impaired older people (Percival 2003, 7). He suggests that subjective feelings that may make people with sight loss withdraw from social activities and interactions must also be taken into account (Percival 2003, 8).

3.3.2 The social world

A person’s social world is defined very simply as the way they live their lives and the impact of sight loss upon their daily life. Nazroo & Gjonca (2005) were the first to explore the circumstances of those with sight loss in a nationally representative sample of people living in private households. Among many findings they discovered that older people with sight loss are disadvantaged socially and economically and that visual impairment is strongly related to poverty. Those with poor vision or registered blind are three times more likely to report their health as poor or only fair, and twice as likely to report that they have a limiting long standing illness than those with good, very good or excellent vision.

What people can actually do is also severely hampered by sight loss. In the Nazroo & Gjonca study (2005) the proportion of people who have difficulties with three or more activities of daily living, such as getting dressed or bathing/showering, is five times higher in those with poor vision or registered blind category than for those in the good vision and above categories. Similarly, this

16 group is also five times more likely to be unable to walk a quarter of a mile than people without a visual impairment. Those without visual impairments are more likely to be members of organisations than those with sight loss, and more likely to be without paid employment before pension age (Nazroo & Gjonca 2005). In summary, people with good vision are twice as likely to have a good quality of life as those with poor vision or who are registered blind. Percival makes similar points about advancing age and failing health dovetailing with sight loss to make everyday tasks such as cooking independently, bathing and getting out and about such a problem compared with older people generally (Percival 2003, 12). Percival also found serious pockets of poverty, underlining the findings of earlier studies into the circumstances of older visually impaired people.

In recent years there have been two major surveys covering all aspects of blind and partially sighted people’s lives. Pey, Nzegwu and Dooley’s 2006 report on work by the Rehabilitation Project Group, major organisations working in the field across the UK presents findings from interviews with 1155 blind and partially sighted people in the UK. They cover a range of areas as diverse as health, domestic situation, lifestyle, pregnancy and childbirth, education, employment, attitudes and opinions and the psychological and emotional state of respondents. Their report offers a comprehensive and illuminating insight into the lives of blind and partially sighted people in the UK and their associated needs.

A few key points from their research are pertinent to Tele Befriending, can be summarised here. Independent Living Skills (ILS) were a major problem for respondents, such as identifying labels on medication, dealing with mail, shopping and so on. Difficulty with ILS tasks was associated with gender, confidence, mental health, amount of residual vision and mobility but not related to age (Pey, Nzegwu and Dooley 2006, 8). 38% of respondents reported conditions other than their eye condition that made it difficult for them to move around. Age was predictive however in people’s ability and willingness to go out, with confidence a major factor in stopping people going out on their own. In fact, confidence, mental health and physical health were all significant factors related to the ease of mobility in different situations (Pey, Nzegwu and Dooley 2006, 9). Disadvantage reigned in education and employment. Whilst 18% of the UK population under 60 have no qualifications amongst their survey respondents this was as high as 39%. The adverse labour market position of blind and partially sighted people is well documented and Pey, Nzegwu and Dooley’s survey confirmed these findings. Of the working population only 29% were in paid employment yet up to 31% were qualified to degree standard or higher.

Several measures were used to assess the quality of life of participants. Significant numbers of people in the survey experienced unhappiness with their quality of life as a result of functional limitations, including sight loss. Again, an

17 important finding in this study was the extent to which confidence (in oneself) plays a critical role in the enhancement of ‘getting things done’ (Pey, Nzegwu and Dooley 2006, 12). Equally important is the role that self-confidence plays in bringing about greater levels of social inclusion in people’s communities. One in five people felt substantially cut off from their surroundings. Finally, the single most important thing for blind and partially sighted people, as a group was greater awareness and understanding from the general public.

These are issues of equality and inclusion that resonate throughout the study (Pey, Nzegwu and Dooley 2006, 14).

The second major study in recent times comes from the Visual Impairment Centre for Teaching and Research, reported by Douglas, Corcoran and Pavey (2006). In this study 70% of visually impaired people reported that they had long term health problems or disabilities other than their sight problems. The likelihood of this increased with age. The majority of people (80%) said they had retired from paid work. This is not surprising given the age demographic of the visually impaired population. Again, the authors’ report on the pernicious nature of financial problems associated with sight loss and disability more generally.

Percival identified a significant need for greater social contact amongst people with sight loss (Percival 2003, 17). People experienced isolation with a concomitant effect on their basic social skills, which were diminishing as a result. In his interviews he found an overwhelming desire for mental stimulation and the basic need for contact. People profoundly feel the absence of social contact in their lives. They have a strong need for human social contact to help maintain their well being and to give them a foothold in the world of the socially included (Percival 2003, 18). He makes a number of recommendations for helping alleviate social isolation, including peer support groups, befriending services, community guides and resource centres.

3.3.3 Services for people with sight loss

Currently services to blind and partially sighted people are characterised by a wide variation in both scope and variety. There are no national standards of care for either staff or service users, and service provision is based less on agreed need but in line with local pressures and priorities (Pey, Nzegwu and Dooley 2006).

Lovelock, Powell and Craggs (1995) examined the extent to which newly emerging community care arrangements were challenging the historically low priority given to visually impaired people. Depressingly they confirmed that in general, social services departments were still not adequately addressing the

18 social support needs of visually impaired people. They found low priority generally given to visual impairment, diversity of practice across the country but provision typically of poor quality, but with some local pockets of good practice. The changes associated with community care were failing to have an impact on the long standing barriers to visually impaired people gaining access to appropriate assessment of, and help in meeting, their social support needs (Lovelock, Powell and Craggs 1995, 45). Amongst many areas of failure, and confirming the findings of other studies, they highlighted the widespread failure to acknowledge the emotional dimension of sight loss and the tendency of help provided to be inappropriate or inadequate.

In a report commissioned by RNIB, Shield conducted in-depth interviews with people aged 65+ with sight loss; 50 people in residential accommodation, 40 in sheltered accommodation and 25 older people living in their own homes (Maglajlic and Brandon 1999). Amongst many recommendations, they suggest that “older people’s perceptions about their ability to live independently in their own homes are dependent on the availability of low level, preventative services, such as help with housework, laundry, gardening, safety devices and home maintenance and repairs” (Maglajlic and Brandon 1999, 44). They suggest that support is an alternative to hospital care, residential care and also offers greater benefits for older people in terms of their quality of life, greater social activity and better quality of care. In fact, independence in all aspects of older people’s lives emerged as a central theme. The problem is that service users and front line staff who support them are often unaware of the information and help available (Maglajlic and Brandon 1999, 45).

The RNIB has added further to this debate by producing a number of reports that identify additional issues that affect or potentially undermine the social care and social inclusion of people with sight loss. These include a lack of accessible information about relevant services; variation in the provision of rehabilitation services and low vision equipment; poor liaison between key organisations at a local level; and a lack of emotional support when sight is first lost or impaired (RNIB 2001). Pey, Nzegwu and Dooley found that approximately 10,000 new registrations a year were not receiving a service as an outcome of their needs assessment in England alone (Pey, Nzegwu and Dooley 2006, 7). Amongst recipients, they found perceived difficulties with the assessment process itself and inadequate information about type and location of services. To cap it all, there is also evidence of a decrease in the level of government spending in real terms.

Using research conducted by the Thomas Pocklington Trust, Percival (2003) considers whether older people are vulnerable to social exclusion i.e. socially disadvantaged if their social care needs are not met. Older people with vision impairment have significant needs as regard home care support, access to

19 information, psychological stress and social isolation (Percival 2003, 2). Percival advocates initiatives such as peer support groups and resource centres as places where opportunities arise to tackle social exclusion arising from unmet needs.

All of the above findings point to practical and psychological problems experienced in old age that are exacerbated by deteriorating sight and compounded by inadequate support services. Each author advocates in varying degrees and emphasises financial, practical, educational and societal changes to help support people with sight loss.

20 3.4 Helping people with sight loss

The following discussion on ‘mitigating factors’ for people with sight loss therefore concentrates on initiatives that are aimed at improving people’s psychological well being.

3.4.1 Emotional support needs

The RNIB have been making recommendations about the emotional support needs of older people with sight loss for many years. Cox (1999) talks about older people with sight loss struggling with loneliness, isolation, feeling undervalued and distressed by the experience of ageing and disability. Issues such as security, privacy, dignity, remaining independent and access to choice left many people in his study anxious, sad and depressed. He highlights that older people with sight loss had themselves identified the need for emotional support, especially at the time of registration or immediately after but also throughout later life (Cox 1999, 20).

Nelson found evidence to suggest that the emotional support needs of older people with sight loss were being overlooked and devalued. Given that people over 65 make up 85 per cent of people with sight problems this was of grave concern (Nelson 1999, 3). Of 235 people interviewed in her survey, over 88 per cent said that they were not offered any support from a professional source. Among many recommendations for increasing social contact, emotional support, counselling, needs identified information and practical training and information she made the following point: 73 per cent of people would find peer support valuable and more than half were willing to use support services via the telephone. Nelson recommends a continuum of individual support including the development of support services via the telephone.

3.4.2 Telephone support groups

In fact, emotional support via the telephone has been around for many years. The telephone has long since been recognised as a successful and cost effective method of dealing with people in crisis. This is due partly because the telephone is so immersed in cultural understanding and routine. It is pervasive and familiar (Reed and Monk 2004). The Samaritans first started using the telephone as an outreach tool for suicide prevention in 1953 (Wiener 1998). Subsequently telephone support has been developed in a variety of situations; crisis intervention, outreach for people with physical disabilities, ongoing psychotherapy, older people with visual impairments and for people affected by HIV.

21 Telephone support groups have now emerged within the field of social work, and as such have developed with less emphasis on explicit therapeutic objectives than in some other forms of traditional face to face group work. This type of support has developed because of the emergence of telephone conferencing, which utilises specialist equipment to connect several participants simultaneously. Typically groups might be run by a professional who acts as leader and facilitator, ensuring the group runs smoothly and working towards some general goals. For example, Gibbons was promoting the use of telephone groups as a ‘primary treatment resource’ for social workers as early as 1984. She reflects on her experience of running four different groups, each of seven older people with a range of disabilities. Gibbons describes how her ‘Telelink’ groups have enabled isolated people with a range of disabilities to air mutual concerns and to establish emotionally supportive relationships that help alleviate feelings of isolation, fear and anxiety (Gibbons 1984, 14). She discusses her role as group leader, how to help participants to adapt to the technology, the group dynamics at play and some of the therapeutic techniques employed. The extent to which people who have never met develop close and caring relationships was particularly striking. She suggests that one potential advantage of this kind of intervention for a person with a visual impairment is its egalitarian nature. As a sighted person Gibbons points out that in face to face groupwork she receives visual material others were not privy to. On the telephone the group leader is placed in the same situation as everyone else (Gibbons 1984, 15). This is an interesting point and one that is explored further in this report.

However, that is not to say that overtly therapeutic targets and techniques are absent within telephone support work. In Wiener’s telephone support groups for children with HIV, groups for parents with HIV and family members affected by HIV, she explains how the common experience of how HIV affects lives offers participants a sense of confidentiality not afforded in a face to face group. She also describes how telephone support helped create a climate of acceptance and support for individuals isolated by the stigma associated with HIV and the lack of adequate support networks in their communities. Mutual identification and universality are strong therapeutic themes within the groups. Participants developed a sense of support and normality as a result of being part of the group (Wiener 1998, 284). She strongly recommends this ‘psychotherapeutic modality’ to all social workers involved in HIV work as a practical, cost-effective and therapeutically sound means of reaching people geographically or emotionally isolated (Wiener 1998, 285).

22 Whether driven by a ‘psychotherapeutic modality’ or otherwise, this type of telephone group is either led or facilitated by a professional, is usually time limited and with membership strictly controlled. The groups run for a set number of weeks only, and participants attend only for as long as the programme lasts. RNIB Tele Befriending looks very different to this model, and using Kurtz’s work on self-help and support groups we can start to see why. Firstly, the raison d’être of RNIB Tele Befriending.

“Support groups meet for the purpose of giving emotional support and information to person’s with a common problem…behavioural and societal change are subordinate to the goals of emotional support and education” (Kurtz 1997, 4).

Equally important, Kurtz’s work emphasises the benefits of participants running these groups for themselves. Although she is describing face to face self help groups, the point she makes is instructive. Talk & Support provides the technical support that allows telephone conferencing to take place, but crucially the group facilitator is often a volunteer with sight loss or another form of disability. Kurtz argues that with participants running the groups themselves, they are free from organisational rules and regulations or specific goals such as behavioural change. She analyses the work of a number of self-help groups, from Alcoholics Anonymous to Parent to Parent Groups and searches for common themes. She describes the ‘stages of affiliation’ group members typically experience.

The following table shows information in two columns: 1st Stage Deciding (hitting rock bottom) 2nd Stage First Meeting (do I belong here?) 3rd Stage Commitment (regular attendance) 4th Stage Taking Action (improvements) 5th Stage Helping Others

Although not specifically designed with therapeutic objectives, Kurtz uses Yalom’s work on therapeutic factors common within these kinds of self-help groups to show that participants typically experience therapeutic benefits. Yalom’s therapeutic factors offers some interesting pointers about what might be happening in RNIB Tele Befriending groups. Kurtz also discusses briefly the emergence of telephone support groups and makes one or two observations based on the limited research available to her at that time. Where medical conditions or the place of residence makes communication with fellow sufferers impossible, the telephone is a useful tool for the purpose of mutual aid (Kurtz 1997).

23 She talks about the potential pitfalls of telephone groupwork, such as the limitations of conference calling and how groups larger than 3-5 people have sometimes struggled to include people sufficiently well. Kurtz highlights how age similarity is important, as well as a common interest or problem (ibid. 1997, 185). She recommends that groups might want to consider being structured and topic centred. In fact the development of RNIB telephone groups has been informed by all of these concerns. Groups comprise of six participants and a facilitator, whilst some groups are structured around gender, age and personality for example. Talk & Support have developed two quite distinct models as a result. One model is the topic or activity based, time limited group such as the ‘book club’ or reminiscence groups for older people. The group has structure and a set of pre- determined objectives. Also within this model, there are ‘one-off’ sessions on a host of subjects, such as welfare benefits and practical information about living with sight loss. In the other model we find Tele Befriending groups, which are open-ended groups with subject content and direction determined by whatever participants bring to the table.

3.4.3 Telephone support groups for people with sight loss

Support groups for people with sight loss were starting to emerge during the nineties. McCulloch, Crawford and Resnick (1994) describe an eight week structured support group in Chicago, USA. They talk about leading a group of 14 people with sight loss through a number of pre-determined topics, such as stress and visual impairment, loss of privacy, family and friends and sources of both anxiety and satisfaction. They explain how the group helped manage a host of emotional, practical, interpersonal and cognitive needs during a period of tremendous adjustment for the participants. They explain how trust, safety and intimacy develop leading to the sharing of information and experiences, and ultimately empowerment and ‘reorientation’ for members in the group (McCulloch, Crawford and Resnick 1994). Within RNIB, Cox’s study discusses a successful small scale Tele Befriending service in Norfolk, and suggests developing this idea as one of several ways RNIB might provide emotional support/counselling services to this client group (Cox 1999, 46). This idea is advanced more thoroughly in another publication by RNIB that year (Nelson 1999).

Thomas and Urbano’s study (1993) is the only published work to date that analyses telephone support for older people with a visual impairment. Using Yalom’s work on group dynamics they consider the therapeutic effect of Telelink, a special telephone support group program in Australia. The purpose of Telelink is to improve socialisation, to alleviate the anxiety of being alone or blind, and to allow for the sharing of problems in order to create strategies for coping (Thomas and Urbano 1993, 63). The socialisation groups in the Thomas and Urbano study

24 typically ran for eight weeks followed by a four-week break, made up of between four and eight members. The groups were facilitated by a peer, who acts as co- leader, again similar to those run by Talk & Support. Forty-six participants were interviewed, as well as direct ‘observation’ (listening in) of a number of group meetings.

While Yalom was writing with group therapy in mind, the facilitative dimensions of group life pertain to most peer conducted self help groups, including those conducted by telephone. Yalom outlined eleven ‘psychotherapeutic factors’ that assist individuals to mount personal change in groups. He regards the personal change process through the use of groups as a complete interplay between these eleven factors, listed below (Thomas and Urbano 1993, 63-64; Yalom 1995).

The following table shows information in two columns

Installation of hope Particularly witnessing the improvement of others. Universality Despite the complexity of human problems certain key themes or common denominators are clearly evident to group members. Imparting Ranging from providing explicit instruction information about the nature of a person’s illness or life situation through to giving and receiving direct advice by group members. Altruism Acts through the receiving-giving cycle where people receive help when in need and then are focussed away from themselves (and self-preoccupation) by the requests of other group members for assistance. The group as a Any conflicts in members’ early family primary family experiences can be re-lived in a constructive manner. Social learning Often in terms of the powerful feedback given to members about their behaviour. Imitative behaviour Learning from each other, particularly from the leader but also from other group members. Interpersonal This is a complex therapeutic change learning process, involving interplay between the importance of interpersonal relationships, the corrective emotional experience and the

25 group as a social microcosm. Group cohesiveness The attractiveness of the group for its members. The condition of members feeling warmth and comfort in the group, feeling they belong, valuing the group and feeling, in turn that they are valued and unconditionally accepted and supported by other members. Catharsis The risk-taking process of sharing experience and the discovery of others’ problems similar to one’s own. Learning that one is not quite so unique and alone in their experience. Existential factors Such as the group’s ability to remind members that they have the power to change themselves in some way. ‘The assumption of ultimate responsibility for one’s own life’.

Using Yalom’s model of group dynamics, Thomas and Urbano found that Telelink had a significant impact on the mental health of the participants, particularly for those who had recently become visually impaired, women who lived alone, and those who had little social contact (Thomas and Urbano 1993, 61). The main benefits were linked to the giving of support, sharing of information, chatting about current affairs and expressing humour. Participants talked about feeling more confident, and shared stories where advice and information from group members had led to positive experiences outside of the group. The Telelink groups do not have specific therapeutic goals as defined by the host organisation or therapist, but instead rely upon common interests and experiences and mutual support amongst the participants to have a positive effect. Yalom’s work on group dynamics and personal change in therapeutic groups, evident in Telelink offers a window into some of the helpful processes that might be present within RNIB Talk & Support Tele Befriending groups. Moreover, the experience of Telelink described above contains evidence that supports the proposition that improving the ‘psychological world’ of group members may have a concomitant effect upon how they interact with their ‘social world’.

RNIB Tele Befriending reflects developments in telephone support away from professionally led, goal orientated groupwork towards peer support groups, facilitated by a fellow participant. Within these groups there are still therapeutic processes at work that help facilitate positive change for the participants, but these are more covertly experienced. Yet even within the successful Telelink model, groups are time limited, with planned breaks and changing membership.

26 Talk & Support uses an open-ended membership model, whereby participants can be part of a Tele Befriending group for as long as they wish. Research about the capability of friendship offers insight into the longitudinal benefits of tele befriending groups.

3.4.4 Telephone support for people with sight loss as a recreational activity

This literature review describes how a strong social support network could help alleviate the effects of depression in older people.

“A fundamental feature of all social life is the existence of relationships that tie people to each other and meet wide-ranging needs for physical and emotional intimacy, personal support, sociability, stimulation and meaning. There is now considerable evidence that links the strength and quality of interpersonal ties to health, well-being and life quality of individuals” (Godfrey with Denby 2004, 15).

Sociologist Pahl (2000) has some important insights that are useful when thinking about Tele Befriending. He talks about how friendship is becoming increasingly important as traditional forms of ‘social glue’, such as family and kin, decline or are modified (Pahl 2000, 12). He posits that Gerontologist's are in agreement that friendships are of great importance and value to elderly people. “As partners and relatives of the same generation die, friends, particularly for the childless, come to have very great significance. Not only can they serve obvious practical services, but they are important for maintaining self esteem and psychological and social well-being” (ibid. 2000, 135). In line with research cited earlier, he suggests there is a growing body of medical opinion that recognises the importance of social support as a moderator of life stress. Critically, it is the quality of the relationship with significant others that is the basis for the most effective social support (Pahl 2000, 147). It is not simply a matter of frequency or proximity that defines the quality or closeness of the friendship. People have close friends that they don’t see regularly. Indeed Pahl cites data from the British Household Panel Survey, based upon a large, national sample, that showed 20% of people contact their best friend once a month or less.

This body of evidence about the importance of social support has combined with lessons from the field of telephone groups to create a new focus for peer support, based on social networking. Tele Befriending sits firmly within this tradition of telephone support. Groups are open-ended and participants are allowed time to establish friendships that are mutually beneficial. Participants are free to change groups and even to put participation on hold for a while, although group cohesion is improved if participants exercise this right in special circumstances only. Indeed, helping people to create friendship groups over the telephone is a

27 burgeoning service. Healthywise Telephone Social Club in Newham, London and Highland Community Care Forum in Scotland are two recent additions to these new and innovative projects. Both reported an increase in self-confidence and self esteem in their participants, in turn leading to people becoming more active in their local community (FriendshipLink 2007). They enable people who are housebound, either due to frailty, disability, geography or the caring responsibilities of others, to come together and bond over the telephone.

However, in Thomas and Urbano’s article on Telelink they suggest there were mixed results when subjects were allowed to stay in groups for long periods, the risk of dependency developing ‘will inevitably occur’ (Thomas and Urbano 1993, 69). Unfortunately there is no additional information presented in the article to support this claim. Yet this is a significant claim given that some Tele Befriending participants could have been part of the scheme for more than six years. One of the key aims for this research therefore was to hear about the long-term effects of Tele Befriending participation.

Further information about what people enjoy about social network groups comes from the world of communication technology. Reed and Monk (2004) use research conducted with a group of older people accessing Tele Befriending services in London to offer guidance about designing future technologies to support recreational socialising amongst older adults. The Community Resource Team in Hackney runs a befriending scheme for elderly individuals through a recreational telephone conference with volunteer facilitators and weekly one to one telephone contact. Visiting 12 participants of two recreational conferences, they found on first impression people presented their participation in the conferences as rather inconsequential. Participants typically characterised the conversations as ‘a bit of idle talk’, or 'it passes the time'. Other group members were described as ‘people you might meet on holiday’ and ‘without much conversation’ given that people in the groups didn’t get out much.

On closer inspection however what emerges in all participants’ conversations was a joy in ‘companionship’. Participants were generally isolated, partly societal and partly due to getting older. The telephone conference brought ‘social contact’, including the possibility of interaction, arguments and involvement with a group of people (Reed and Monk 2004, 119). Having described how she settled into her favourite chair and made herself a cup of tea, one woman said, ‘it’s like waiting for someone to visit’. Passing the time becomes ‘passing the time with others’. For some this means active participation, for others this was more about listening. What was significant was that this sense of companionship was as important as the discussion itself (Reed and Monk 2004, 166). This wasn’t group participation in order to influence how people behave once they are outside of the group, but group participation for its own sake.

28 The Hackney scheme provides a number of befriending services, of which the telephone conference was one. The recreational telephone conferences prepare participants for physical meetings, which ‘ultimately are the remedy for isolation’ (Reed and Monk 2004, 116). This might be true, but the comments of participants in this study flag up the intriguing possibility that the group offered a form of social escape in its own right. It was a means in itself of getting away from the stresses of normal life by having ‘someone to visit’ (in a virtual sense) or by listening to the vagaries of someone else’s life. In such situations idle chat is perfectly acceptable, and offers up the possibility of participant’s worlds expanding from the comfort of their own armchair. Reed and Monk take the reader in the direction of communications technology, but their consideration of what people gained from being part of a recreational telephone group is a useful signpost. Participants may not simply attend groups in the hope that feeling better about themselves will result in being more active. The original proposition that if people feel better about themselves they become more active is not appropriate here. Participants’ social worlds are expanded in a virtual way and they feel better about themselves as a result, irrespective of what else they do with their day.

A sign of how far things have moved on is the fact that telephone conversation ‘for fun’ is now the subject of rigorous scientific research. Monk and Reed’s (2007) communication experiments in a domestic recreational setting are one such example. They make reference to the RNIB’s Tele Befriending service, but use a random sample of unconnected individuals to understand what makes for a good recreational telephone conference. Using Directed Conversational Analysis as well as participants accounts of the experience the authors found that the spontaneous co-involvement of participants was a good indicator of a successful recreational conference. They then used a number of different manipulations, for example when and how people were introduced to the group as well as supplying pictures of group members to see if these might encourage ‘spontaneous co- involvement’ (Monk and Reed 2007, 3). The results were negligible, the authors unable to pinpoint whether this was due to the experimental design or whether it was actually unimportant when people were introduced to groups or if they had pictures. Nevertheless, this kind of work has important implications for how Talk & Support evaluate and improve the Tele Befriending service in the future.

Recreational social networking on the telephone is now a firmly established form of activity. New technologies such as video conferencing, webcams and videophones may take this movement in an entirely new direction. However, given the sight loss issues fundamental to RNIB’s work this is an appropriate time to pause.

29 In summary, the literature has shown how depression and loneliness increase with old age, compounded by many factors, in particular sight loss. Good social support and quality friendships can help ameliorate the effects of these debilitating conditions. Moreover, it is not just about frequency or proximity that defines the intimacy of a friendship, but the quality of that relationship. Support groups can be effective in providing a place for mutual social support and information and it is demonstrated how pervasive the telephone has become as a tool for social contact. It has risen as a mechanism through which successful therapeutic intervention can be delivered. In recent years this has evolved into recreational telephone support, based on social networking although usually with some loose common link between participants.

RNIB Tele Befriending services started to emerge in the nineties. The success of these small-scale projects, plus support from the Big Lottery Fund enabled RNIB to launch a nationwide, centralised Tele Befriending service in 2001. The next section briefly discusses an evaluation of this newly emerging service in 2004 in order to set in context this current piece of research.

An independent evaluation was commissioned by Talk & Support of the recently piloted Tele Befriending service (Saunders 2004).

The aim of this research was to

 Identify desired outcomes, from a service user perspective, prior to participating in a Tele Befriending group

 Provide information on how relevant the service is to participants’ personal goals and aspirations

 Draw some tentative comparisons between service user aspirations prior to joining a group, with service user defined outcomes from being in a group

The number of people interviewed before joining a group was a representative sample, but the numbers interviewed whilst active in a group were small. The small-scale comparative sample was a weakness, although it was still possible to draw some tentative conclusions. Among the key findings:

 There were clear and tangible benefits from being part of a Tele Befriending group. The weekly exchange of humour, advice and social conversation was a positive experience for most participants.

 As a result of membership, people described feeling more confident, less isolated and less lonely.

30  Some participants said they had made new friends. Moreover, they perceived a genuine quality to the relationships being established, which had a resultant positive effect on how they felt about themselves.

 Group members mentioned in particular the benefits of getting support and learning from people who also had sight problems.

 Participants reported feeling more positive about their sight difficulties as a result of being part of a group.

In the years that followed the generous support of the Big Lottery Fund enabled Talk & Support to expand and develop the service. Funding was also set aside to support a larger research project during 2007/08 to build upon the findings of the 2003-04 evaluation. This report presents the findings from this larger research project.

31 4. Aims of Research

One of the main themes to emerge from the earlier evaluation was the potential relationship between being part of a group and the effect this had upon people’s social world. We will be establishing the outcomes but there were four main aims for the research, summarised below.

 To provide a detailed and rich exploration and analysis of participants’ experience and perceptions of being part of a Tele Befriending group. That is, to understand the meaning and impact of being in a group and how this is played out in people’s daily lives.

 To track and analyse the experiences of Tele Befriending group participants over six months, in order to uncover the effects of this kind of long term intervention on participants well being. In particular, how group participation relates to issues of depression, social isolation and level of functionality (i.e. how much people do for themselves) and how this changes over time.

 To compare the emerging themes from our six-month group of participants with those of a sample of people who have been part of a group for over a year.

 A subsidiary aim was to consider how participants viewed telephone friendship groups in comparison with face to face groups in order to enrich our understanding of this kind of intervention.

The research aims are principally concerned with the personal experience and impact of Tele Befriending. Participants were not asked to comment about operational issues, such as ease of access to the service or customer care standards. As an established service, Talk & Support already have in place formal mechanisms that allow participants to comment upon these kinds of issues. Based upon these broad aims, this study was guided by two main research questions.

What are the reported benefits of long term membership of Talk & Support Tele Befriending groups?

How is telephone friendship for people with a visual impairment different from face to face friendship in groups?

32 The second research question is subsidiary to the first because comparing group dynamics within telephone friendship groups and face to face group situations is a research project on its own. To do this question justice you would need to establish a separate comparison group of people who attend face to face support groups and then compare their experiences with those of Talk & Support telephone group members. What is possible here is an ‘internal’ comparison, where participants are able to reflect upon their experience of Tele Befriending and how this compares with face to face friendship.

33 5. Methodology

Although this is not an academic paper, the procedures used to formulate the research design; evaluation methods and written report have been informed by standard research disciplines. Broadly speaking, this is a descriptive study, using an inductive research methodology based firmly in the qualitative tradition of research.

Qualitative research is multimethod in focus, involving an interpretative, naturalistic approach to its subject matter. This means that qualitative researchers study things in their natural settings, attempting to make sense of, or interpret, phenomena in terms of the meanings people bring to them” .

Qualitative researchers seek to answer questions that stress how social experience is created and given meaning. This is in contrast to quantitative studies that emphasise “measurement and analysis of causal relationships between variables, not processes, and where inquiry is purported to be within a value-free framework” (Denzin and Lincoln 1994, 4). The qualitative researcher is also the ‘primary instrument’ for data collection and analysis. Data are mediated through this human instrument, rather than through inventories, questionnaires or machines. Qualitative research is ‘descriptive’ in that the researcher is interested in process, meaning and understanding gained through words or pictures. Finally, the process of qualitative research is ‘inductive’ in that the researcher builds abstractions, concepts, hypotheses, and theories from details (Creswell, 1994, 145). An inductive approach is grounded in the information gathered. By keeping an open mind about the information to be uncovered, the inductive researcher is able to use that information to uncover new ways of thinking about a given situation.

5.1.1 The questionnaires

The questionnaires were informed by one of the main themes to emerge from the 2004 study, the relationship between participants’ psychological world and their social world. That is, how people feel about themselves and its relationship to how participants live their lives. Areas of overlap were anticipated, although the good thing about two distinct areas of benefit is that they are conceptually separate, allowing tailoring of the questions accordingly. In other words, someone can feel better about himself or herself without necessarily changing how they live. Others can describe a sea change in their activity levels even though how they feel about their problems hasn’t changed that much. Finally, participants can describe positive changes in both, and the links between the two.

34 Participants were interviewed by telephone, using a semi-structured interview schedule. Calls lasted anything up to an hour, although the average length of time was about 30 minutes. Semi-structured interviews allow the participant freedom “to talk about what is of central significance to him or her rather than to the interviewer…but some loose structure [is present] to ensure all topics which are considered crucial to the study are covered” (Bell 1999, 138). All questionnaires used in this study can be found in appendices two-eight. In general, each questionnaire was divided into four sections, two covering aspects relating to how participants felt (the psychological world) and two relating to their daily lives (the social world).

As standardised answers were not required to analyse statistically it was possible to adjust questions slightly, or to ask new questions, as the interviews got underway. This approach to analysing material emerging from the interviews and adjusting accordingly is consistent with a ‘grounded theory’ technique. A section of data from the interviews is analysed, and the emerging concepts and categories are used to inform and influence the next set of interviews (Strauss and Corbin 1994). In truth, few changes were made between questionnaires, although detailed inspection reveals one or two shifts in emphasis. Most importantly, this technique allowed the participants themselves to speak freely and thoroughly about what was important to them.

5.1.2 The sample

In order to obtain our prospective material it was planned to interview 25 participants before they joined a Tele Befriending group, and again after they had been part of a group for three and then six months. As it turned out, after three months 13 participants were still part of a group, although all 25 original participants were re-interviewed. After six months of those re-interviewed again, nine people were still active in a Tele Befriending group after six months, four more people having dropped out from the original sample of 25. These prospective accounts offer a rich body of information about the meaning and impact of being in a group and how this is played out in people’s daily lives.

In order to learn more about the long-term benefits of group membership a different 25 people who had been part of a Tele Befriending group for at least a year were interviewed. The longest member of a group had taken part for over four years. These retrospective accounts proved incredibly meaningful, as will become apparent. Finally, in order to gather some additional comparative material, a small ‘control’ group was created of RNIB members. Six people about to become RNIB members were interviewed and then again after three months. The intention was to compare the benefits of RNIB membership with those obtained through Tele Befriending. In total 100 telephone interviews were

35 conducted. A full list of interview dates can be found in appendix one, although participant names have been removed to protect the anonymity of the people taking part.

Participants were not selected according to age, gender, ethnic origin, geographical location or any other criteria. Participants were selected on a random basis, to avoid any bias on the part of Talk & Support. Between July- September 2007 people signing up to join a Tele Befriending group were invited to participate. As it turned out, there were 53 ‘new starters’ waiting to join a group during this time. Therefore the sample of 25 participants represented 47% of the entire Tele Befriending population available for interview. This is an extremely healthy sample and adds significantly to the credibility of the findings. Participants’ name, phone number and a convenient time to call were collected from those willing to take part. The same technique was employed to recruit the six individuals about to become RNIB members.

Recruiting 25 people who had taken part in a group for a year or more was slightly different. A list of 117 people willing to take part was provided and three categories of potential participants were created; people who had been in a group between 1&2 years, between 2&3 years and for more than 3 years. Potential participants were then telephoned in the order they appeared on the list, with the caveat that roughly the same numbers of people were interviewed in each category. The intention was to ensure as far as possible that opinion from the full range of group membership length was represented. The interviews took place between September and December 2007. During this time there were 147 people in total who had been active in a Tele Befriending group for more than a year. The sample therefore of 25 people represented 17% of the entire population available for interview, and again is a healthy sample of the population as a whole. The total number of people interviewed in each category is summarised below.

The following table shows information Category No. of Participants People about to join a Tele Befriending group 25 The same 25 people were interviewed after 3 25 months (whether they were still part of a group or had dropped out) 13 people were still in a group after 3 months. 13 These 13 people were interviewed after 6 months (whether they were still part of a group or had dropped out) People who have been part of a Tele Befriending 8 group for between 1 & 2 years

36 People who have been part of a Tele Befriending 8 group for between 2 & 3 years People who have been part of a Tele Befriending 9 group for more than 3 years People about to become RNIB Members 6 People who had been RNIB Members for 3 months 6

Total: 100 interviews

Nationally 85% of the total population of people with sight loss are aged over 65. Since age is such an important factor the various age range groupings are presented in the sample, and how these compare with the total number of people using Tele Befriending as a whole.

The following table shows information in four columns:

Age ranges About to join a In a group 1 Total tele group year or more befriending population 26 – 40 2 ( 8%) 1 ( 4%) 12 ( 4%) 41 – 55 3 (12%) 1 ( 4%) 42 (14%) 56 – 65 2 ( 8%) 4 (16%) 40 (13%) 66 – 75 1 ( 4%) 7 (28%) 53 (17%) 76 – 85 10 (40%) 7 (28%) 76 (24%) 85 + 7 (28%) 5 (20%) 88 (28%) Total 25 25 313 Participants

There is no intention to draw wholesale statistical conclusions from this small amount of comparative data, although some general observations can be made. The number of people over 65 in both sample groups, 72% and 76% respectively, is slightly higher than within the Tele Befriending population as a whole at 69%, but not significantly so. Indeed, the percentage of people waiting to join a group aged over 85 in the sample (28%) reflects precisely that of the wider Tele Befriending population. Within both the samples, despite small variations within individual age bands, the average age of participants was 73 years old. This was almost identical to the average age of Tele Befriending participants as a whole. Therefore it is reasonable to say that the age range of people interviewed in the sample broadly reflects the picture within Tele Befriending as a whole. Tele Befriending caters for a generally older population and the sample group reflects this story.

37 5.1.3 Ethical considerations

This work has been carried out paying close attention to ethical issues inherent in this kind of research. By its very nature qualitative research has the potential to be intrusive, in this case relying as it does upon in-depth interviews about the personal meaning and impact of sight loss, feelings about isolation and loneliness, and the nature of friendship. The writer has an obligation to respect the rights, values, needs and desires of the participants

(Creswell 1994, 165). Several writers summarise the obligations of the researcher as ensuring that the principle of ‘informed consent’ is adhered to. Essentially this involves being clear and explicit with the research participants about the kind of agreement entered into, the uses of the data and how it will be analysed and reported (Bell 1999, 39). These obligations have been met in the following ways.

At the beginning of each interview aims of the research were clearly stated, and verbal permission sought to proceed with the study. The participants were informed of all data collection tools and activities (i.e. taped interviews and notes) and also that all personal details, tape recordings and so on would be destroyed at the end of the project. The participants were informed at the outset that their anonymity would be protected in the final report, explaining that excerpts may be quoted verbatim, but that the identity of the speaker would not be disclosed. Indeed, there were many occasions during the course of an interview where it was prudent to remind participants that they would not be identified in the report. The informant’s interests and wishes were considered when contemplating how to report the data, for example it was made clear that participants could request not to include anything they had said. When writing the report, if there was any danger of someone being identified, certain characteristics were changed to protect that person (i.e. gender, group facilitator details, information about other group members). It was explained to the research participants that the process was entirely voluntary, and that they could refuse to answer any questions or withdraw completely at any time.

Finally, the Talk & Support department maintained good channels of communication throughout, enabling relevant information, participant enquiries or any requests to be passed on quickly and easily. If more intensive support was necessary it was possible to refer participants to the RNIB Emotional Support Service. This service provides one to one counselling over the telephone for people who are experiencing emotional distress as a result of their sight loss. Two participants were referred to this service.

38 5.1.4 Presenting the findings

Essential descriptive information was gathered of the characteristics of the final sample, in order to check the extent to which this was broadly representative of the total sample population. The main focus of this work was the practical and emotional experience of being part of a Tele Befriending group and the impact this has on people’s lives. The report is structured accordingly, concentrating on the practical reality and emotional legacy of being part of a Tele Befriending group.

Participants spoke with surprising candour about often very personal and painful experiences. It was noticed how a great many people seemed to value the opportunity to think through, speak out loud, frame and often re-frame their experiences through the conversation. This wasn’t a counselling process and indeed the content and shape of the calls could not be classified as counselling in any sense. Nevertheless, the emotionally rich, detailed and thoughtful comments available, gives this report a personal intensity that is especially judicious when thinking about the RNIB Tele Befriending service.

5.1.5 Can we believe the findings?

There are two aspects to this question. Firstly, did the research participants express what they really wanted to say? Secondly, was the sample representative? The aim was to try to uncover a coherent narrative. Did the study make sense? The participants were given time to share their views and the semi- structured questionnaire design allowed people to focus on the issues that were important to them. Coupled with assurances about anonymity, people had the opportunity to say what they really thought.

In addition, several research methods were used to help improve the quality of the data collected. In most sections of the questionnaire the same point was asked, but in different ways. This system of approaching the same issue from different angles offered a useful ‘check and balance’ tool. Grounded theory techniques to discuss emerging themes with research participants and to ask whether the conclusions were accurate from their perspective were also used. For example, the original questionnaire did not allow for any discussion about the group facilitator joining in with conversations, yet participants frequently raised this in the first few interviews. Participants were asked how they felt about it, and whether it mattered to them. Thus an ongoing dialogue was established throughout the research process that informed the study. The prospective dimension of much of this study lent itself to this technique.

39 Another useful tool was to expose the research methods and analysis to others to see if the processes undertaken were in line with accepted research practice. Both Dr Pritti Mehta (RNIB Senior Research Officer) and Barry Luckock, an external consultant from the University of Sussex were helpful in this respect. Furthermore, the findings have been cross-checked with Jo Stapleton (RNIB Talk & Support Manager) at each stage and draft versions of each section of the report given to Jo for verification and comment. This ‘peer audit’ technique assessed the believability of the results i.e. do the interpretations and meanings given by the participants interviewed appear authentic? Having regular dialogue and detailed discussions about the fledgling material was hugely beneficial and a great deal of credit should go to Jo in this regard.

The sample people interviewed was representative of the Tele Befriending population as a whole. As explained earlier in this section, the people interviewed were randomly selected and represented a good number of the potential Tele Befriending population available for interview. A wide variety of people of different genders, from different geographical locations and living situations were interviewed. The age range of the sample reflected that of the Tele Befriending population as well as national statistics about the age breakdown of the visually impaired population as a whole.

The people tracked over six months were all white British, which was a weakness, and the sample of people who had been part of a group for longer than a year contained only one person from a different ethnic background. Unfortunately the lack of people in the sample from Black and Minority Ethnic (BME) communities reflects wider difficulties Talk & Support have experienced with engaging this group of people. Talk & Support have spent several years building relationships with a number of small organisations up and down the country in order to extend Tele Befriending groups to BME communities. After three years extensive work, Talk & Support have recently been in a position to launch the first non English language speaking telephone groups. This development emerged from a number of successful face to face focus groups with small independent organisations, in particular the Asian Blind Association and Somali Development Association for the Blind. Given the difficulties reaching and gaining trust from people with sight loss in these communities, alongside cultural barriers such as the concealment of people with disabilities within communities and cultural gender inequalities, this represents significant success in its own right. There is still much work to be done.

Nevertheless, the diversity of the sample population arbitrarily selected and representative of the Tele Befriending community as a whole make the findings robust. The results will add significantly to the small body of evidence to date on the impact and effectiveness of Tele Befriending for people with sight loss.