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Evaluation of Emotional Support within an Integrated Low Vision Service

Logos appear above for University of Liverpool, RNIB, Action for Blind People, GlaxoSmithKline and Gateshead Sight Service.

Evaluation of Emotional Support and Counselling within an Integrated Low Vision Service - Final ReportSeptember 2010

Authors:

Dr Suzanne HodgeDr Wally Barr

Health and Community Care Research UnitUniversity of LiverpoolThompson Yates BuildingBrownlow HillLiverpool L69 3GB

Dr Paul Knox

Directorate of Orthoptics and Vision ScienceSchool of Health SciencesUniversity of LiverpoolThompson Yates BuildingBrownlow HillLiverpool L69 3GB

http://www.biotene.com/


AcknowledgementsWe are indebted to the numerous individuals and organisations who have contributed to this study. Firstly, we are grateful to GlaxoSmithKline and RNIB for funding the pilot project of which this evaluation is a part and to the members of the ESaC Project Team (listed on p. ii) who have overseen the pilot project. For their invaluable role in overseeing the evaluation itself, we would like to thank the members of the ESaC Research Advisory Group (listed on p. iii). We would also like to thank Tracy Quillan from HaCCRU for providing administrative support and Stuart Duncan from RNIB for providing technical assistance with the report.

There are a number of individuals who have made a significant contribution to the design and execution of the research presented within this report. Firstly, we would like to thank Louise Bowen, Eleanor Cain and Martina Leeven, the three counsellors who have worked in the ESaC services, who have had a vital role as co-researchers – contributing to the design of the study, collecting data and assisting and advising the research team throughout the course of the evaluation. We would also like to thank Clare Thetford, who was the first lead investigator on the evaluation and Helen Prosser, co-investigator, both of whom had key roles in designing and setting up the study.

Finally, we would like to thank the service users, family members and service providers, who all participated freely in this study, giving generously of their time for the benefit of others.

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ESaC Project TeamSusannah BadgerAnita BoguslawskiLouise BowenEleanor CainSusan CoulsonStuart DuncanSharon HaffendenAmanda HawkinsPamela LacyMartina LeevenPritti MehtaMary NorowzianRebecca SheehyPhilippa Simkiss

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ESaC Research Advisory GroupYasmene Alavi London School of Hygiene and Tropical

MedicinePeter Bower University of ManchesterMarie Dewhurst Royal Liverpool and Broadgreen University

Hospitals TrustAngela McCullagh Thomas Pocklington TrustHelen Prosser University of SalfordDawn Scott Bradbury FieldsJeanette Scott Independent service user member

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List of abbreviationsAMD Age-related Macular DegenerationCORE-OM Clinical Outcomes in Routine Evaluation –

Outcome MeasureDAISY Digital Accessible Information SystemECLO Eye Clinic Liaison OfficerESaC Emotional Support and CounsellingLVS Low Vision ServiceMD Macular DiseaseNEQ Needs and Expectations questionnairePCT Primary Care TrustRNIB Royal National Institute of Blind PeopleSI Sight Impaired (registration category previously

termed Partially Sighted)SSI Severely Sight Impaired (registration category

previously termed Blind)

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Contents

Executive Summary......................................................................11 Background..........................................................................13

1.1 Introduction.....................................................................131.2 The case for counselling in low vision services..............131.3 Description of the ESaC services...................................17

2 Methods................................................................................202.1 Aims and objectives of the evaluation.............................202.2 Study design...................................................................202.3 Issues in setting up the evaluation..................................29

3 Quantitative findings...........................................................313.1 Referrals to the ESaC services.......................................313.2 The different service user samples.................................323.3 Referral sources..............................................................323.4 Eye conditions.................................................................333.5 Other physical health conditions.....................................343.6 Characteristics of the Full CORE Sample.......................353.7 Therapeutic input over the duration of the study.............413.8 Change in CORE scores between baseline and follow-up

assessments...................................................................423.9 Summary of quantitative results......................................46

4 Service users’ needs and expectations of the ESaC services................................................................................47

4.1 Introduction.....................................................................474.2 The baseline assessment of needs and expectations....474.3 Post-intervention assessment of needs and

expectations....................................................................514.4 Summary........................................................................56

5 Findings from the Qualitative Interviews...........................595.1 Introduction.....................................................................595.2 The ESaC way of working...............................................59

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5.3 Embedding the ESaC services within low vision services...........................................................................66

5.4 The experience of living with visual impairment: understanding the role of the ESaC services..................79

5.5 Valued features of the ESaC services..........................1075.6 Summary......................................................................116

6 The ‘carer’ perspective: Findings from the supporting relatives and friends questionnaire.................................123

6.1 Description of the sample.............................................1236.2 Impact of visual impairment on daily living....................1236.3 Emotional impact of visual impairment.........................1246.4 Impact of visual impairment on relationships................1256.5 Impact of counselling....................................................1256.6 Summary......................................................................127

7 Discussion and Conclusions............................................1287.1 Introduction...................................................................1287.2 Levels of psychological distress in the sample.............1287.3 Differences between the research sites........................1307.4 What service users value about the service.................1307.5 Organisational issues....................................................1327.6 Limitations of the study.................................................1377.7 Future research.............................................................1407.8 Conclusions..................................................................141

8 References.........................................................................144

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Executive Summary

BackgroundThis summary reports findings of an evaluation conducted by researchers from the University of Liverpool as part of a pilot project set up by RNIB and funded by GlaxoSmithKline, aimed at establishing an effective model of emotional support and counselling (ESaC) provision within an integrated low vision service (LVS). The project has been conducted on two sites: in Gateshead through Sight Service, a local voluntary organisation; and in London through RNIB’s Low Vision Centre at Judd St, serving the residents of Camden and Islington. At each site a part-time counsellor has been employed to work as part of an integrated LVS.

Aims1. To explore the impact of emotional support and counselling

services provided as part of an integrated low vision pathway;2. To provide evidence to support policy makers, commissioners

and practitioners for the future development and delivery of low vision services.

Data collectionA range of quantitative and qualitative methods was used to collect data from service users, service providers and supporting relatives and friends of people who have used the service. Data was collected between April 2008 and May 2010.

Service use dataBasic demographic and clinical information was obtained from all service users who gave their consent for this data to be collected. A total of 98 people provided basic service use data: 58 in Gateshead and 40 in London. This sample is known as the Overall Sample. Data collected included age, gender, current living circumstances, cause and duration of visual impairment, visual acuity, other health conditions, source of referral, and the number of sessions planned and delivered.

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CORE-OMThe CORE-OM (Clinical Outcomes in Routine Evaluation – Outcome Measure) was used with service users at baseline and at post-intervention as a measure of psychological well-being and social functioning. The CORE-OM is a 34 item questionnaire that addresses four domains of subjective well-being, problems/symptoms, functioning and risk (to self and others).

Of the Overall Sample of 98 service users, 64 people provided CORE-OM data at baseline: 40 in Gateshead and 24 in London. This sample is known as the Baseline CORE Sample. Of these 64, 35 (55%) provided CORE-OM data at both baseline and post-intervention assessment: 18 in Gateshead and 17 in London. This is known as the Full CORE Sample.

Needs and Expectations questionnairesA qualitative assessment tool was developed in order to generate a picture of service users’ needs and expectations of the service at baseline assessment, and whether the ESaC service had met those needs and expectations at post-intervention assessment. This took the form of two short questionnaires to be completed in parallel with the CORE-OM at baseline and post-intervention. 44 people completed a Needs and Expectations questionnaire at baseline. 32 participants also completed a post-intervention questionnaire.

Qualitative interviews with service usersSemi-structured interviews were conducted with 14 service users; 7 from each site. The purpose of these interviews was to explore service users’ experiences of the ESaC services in more depth.

Qualitative interviews with service providersSemi-structured interviews were conducted with 15 key service providers involved directly or indirectly with the ESaC services: 8 in London and 7 in Gateshead. This sample included the ESaC counsellors, other LVS staff including rehabilitation workers and optometrists and key individuals in external organisations. The purpose of these interviews was to generate an understanding of how the ESaC services were working and how they fitted into the Low Vision Services and into wider low vision services.

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Questionnaire with supporting relatives and friendsA short questionnaire was devised and sent out to supporting relatives and friends of service users who had consented to take part in a qualitative interview. The purpose of this questionnaire was to generate an understanding of the impact of visual impairment and of the ESaC services on service users and on their relationships, from the perspective of their close relatives/friends. A total of 31 questionnaires were sent out via service users, of which 7 were returned.

Quantitative findings

Referrals to the ESaC services Between 01/10/07 (when the services became operational) and

30/04/10 190 people were referred to the ESaC services: 89 to Gateshead and 101 to London.

149 of those referred became clients of the service: 69 in Gateshead and 80 in London. This gives an average monthly referral rate of 3.6 in Gateshead and 4.0 in London.

The majority of those referred to the services were women (70%) and the mean age of people referred was 66.

Referral sources For the Overall Sample of 98, three quarters of referrals to the

ESaC service at each site came from within the LVS. The biggest single source of referrals was rehabilitation workers, who account for 42% of referrals.

Some anticipated referral sources, notably GPs and hospital eye clinics remain low providers of referrals.

Characteristics of the Full CORE Sample 66% of service users were women. Most service users were aged 50-65 years, with a mean age of

57 in Gateshead and 61 in London. There was a big difference in the ethnicity of service users

between the two sites: 94% of the Gateshead sample was White British, compared with only 53% of the London sample.

Less than one in ten of the Full CORE Sample was employed and nearly half were retired, as expected, given the age distribution of the sample.

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59% of service users lived alone. 49% of the sample reported having a history of mental health

problems. However, there was a marked difference between the two sites, with 41% of Gateshead clients reporting past mental health problems, compared with 59% of London clients.

Therapeutic input For the Full CORE Sample 77% received counselling at each

site, the remainder emotional support. Clients receiving emotional support remained in the service for

a significantly shorter time (6.50 weeks) than those receiving counselling (13.38 weeks).

The mean duration of therapy was 11.46 weeks for the Full CORE Sample. The mean number of therapy sessions planned with each client in advance was 6.72 in Gateshead compared with 10.47 in London.

Findings from the CORE data Comparison of CORE scores for the sample with data from

previous studies clearly showed that at baseline assessment the Full CORE Sample fell within the realm of a clinical population in all CORE domains except risk.

The mean CORE total scores for the Full CORE Sample reduced from 53.34 to 30.83 from baseline to post-intervention assessment. This result is statistically significant and represents a considerable improvement in psychological well-being during the course of counselling. This statistically significant improvement was seen in all four of the assessment domains.

Both men and women in the sample showed improvements in CORE scores that were both reliable and clinically significant.

Findings from the Needs and Expectations questionnaires

At baseline assessment: The two major issues people wanted help with were visual

impairment and depression or low mood. Other concerns included dependency and isolation, difficulties coping with

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bereavement, boredom and frustration, relationship difficulties and work or career worries.

The main changes that participants reported wanting were to gain confidence, cope better emotionally and to be able to come to terms with their visual impairment.

Asked what help they want from the ESaC services, people overwhelmingly identified the need to talk (73%). Relatively few identified more specific ways in which they wanted to be helped.

By post-intervention assessment: Asked what help they wanted from the service only 19% of

participants reported that they wanted to talk, compared with the 73% who gave this response at baseline. Instead, responses were more specific and more positive, the main themes being wanting to feel better, gain confidence, cope, make sense and move on.

Responses to the question about whether the service met their needs were also more positive. Key themes were being able to talk things through, being helped to think differently, feeling better as a result of counselling.

The third question about what aspects of the services people found helpful also produced positive responses, with positive feelings, being able to talk, being listened to and being helped to think differently being key themes.

The presence of the counsellor comes across more strongly in the post-intervention data, underlining the importance of the counselling relationship to service users.

Findings from the qualitative interviews

The ESaC way of workingThe interviews with service providers offer insights into key features of the ESaC services.

Humanistic counselling - Although no single model of counselling was adopted when the service was designed, all three counsellors who have been involved in the project have worked within a humanistic model of counselling. Humanistic counselling emphasises choices, individual responsibility and the capacity of the individual for personal growth. The role of

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the counsellor is to guide the individual so that they might tap into their own psychological resources.

Flexibility – Flexibility of approach is a key element of the service, helping to engage people who might not otherwise use a counselling service. This flexibility involves following-up service users who do not arrive for sessions, undertaking home visits and tailoring the number of sessions offered to the needs of the individual service user. Such flexibility distinguishes the service from generic counselling available through primary care.

The dual model of counselling and emotional support - Setting the service up as a dual model that offers both counselling and emotional support is another feature of the service that distinguishes it from generic counselling. The counsellors are able to offer emotional support to people who do not need or may not be ready for formal counselling but who may be in need of a period of emotional support. In some cases this emotional support may evolve into formal counselling. This helps to draw people into the service who may not have sought counselling through primary care but who may have emotional support needs.

Embedding the ESaC services within low vision servicesThe interviews with service providers also explore some of the organisational issues involved in integrating the ESaC services within low vision services.

Emotional support in low vision work – The interviews with service providers show that emotional support is part of all low vision work, although a distinction needs to be drawn between the emotional support routinely provided by low vision workers and the specialised emotional support and counselling provided by the ESaC counsellors. The ESaC services are clearly seen as a vital addition to the low vision services, enabling people to make better use of other elements of the LVS, particularly rehabilitation activities such as learning to use a white cane. The potential for more integrated systemic work is identified.

The referral process – Most referrals to the ESaC services have come from within the low vision services. Referrals are often opportunistic, occurring when the service user attends for a routine low vision assessment or for a reason unrelated to their emotional needs. When introducing the ESaC service to service users, LVS staff will use strategies which normalise and

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downplay what is involved, often avoiding using the term ‘counsellor’.

Screening calls – Referrals to the ESaC services were slower to develop than anticipated. To help increase referrals a ‘screening call’ system was adopted, in which an individual who attends for a routine low vision appointment is asked whether they would mind receiving a follow-up phone call from the counsellor. If the individual agrees, the counsellors will then phone them to find out how they are and make an arrangement for further contact if appropriate. Although responsible for a relatively small proportion (7%) of referrals this system has been seen as working well. However, by the end of the study the screening call system was no longer being prioritised as referrals had picked up and the counsellors were holding caseloads which were near to or at full capacity.

Promoting the service - A considerable amount of work has had to be put into promoting the service and generating referrals, particularly by the counsellors. This work will probably need to continue into the future.

The experience of living with visual impairment and the role of the ESaC servicesThe interviews with service users provide valuable insights into the issues facing people living with visual impairment and into the role of the ESaC service in helping to address some of those issues.

Sight loss as a transitional process – The interviews highlight the importance of understanding sight loss as a transitional process or journey. People may need emotional support at different stages in that journey including at the point of diagnosis, sudden loss of sight or as visual function deteriorates. Other life changes such as bereavement may also increase their emotional support needs. It is clear that the ESaC services have a role to play in supporting people at all stages through this journey.

Loss of confidence, social withdrawal and isolation – Several participants report having been helped to become less socially withdrawn and isolated by their experience of counselling through the ESaC services. Younger people, in particular, recognised the importance of overcoming their inclination to become socially withdrawn. The risk of social

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withdrawal leading to loneliness and isolation seems to be greater in older people.

Loss of the ability to read – Another strong theme emerging from the service user interviews is the emotional and practical impact of no longer being able to read easily. In some cases, there may be a role for the ESaC counsellors working with rehabilitation workers to enable service users to maximise the use of their remaining vision.

Psychological distress – The service user interviews provide vivid illustrations of the kind of psychological distress that people experience and of the role of the ESaC services in helping to alleviate that distress.

Relationships – The service user interviews also highlight the way in which loss of sight can affect relationships, particularly those between parents and children. For parents of both young, dependent children and of grown-up children there is a concern not to become a burden on their children or to become dependent on them. A number of service users also report having been helped with other difficult relationship issues through the ESaC services.

Bereavement – The interviews provide evidence of the way in which bereavement affects people’s ability to cope with visual impairment, adding to their feelings of loss.

Physical ill health - This is a big issue for users of the ESaC services, as most of those in the Overall Sample reported other physical health problems. The interviews highlight the additional burden that physical ill-health brings with it, in some cases leading people to need emotional support who have, up until that point, coped emotionally with their situation.

Valued features of the ESaC servicesSome specific features of the services emerge as being particularly valued by service users.

Being able to talk – One of the most highly valued features of the ESaC service is being able to talk to an impartial, non-judgemental listener.

The counselling relationship – Another important feature is the counselling relationship itself, and the personal qualities of the counsellors.

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Continuity of the service – Another feature of the ESaC services valued by service users is the knowledge that it is there for the future, both for them and for others who may benefit from it.

Accepting and adapting to sight loss – The ESaC services are valued because of the role they have in enabling people to accept and adapt to their visual impairment. This process takes different forms for different people such as adapting their behaviour and plans for the future or learning that they do not have to cope on their own. The key theme seems to be that the ESaC services help people to adapt emotionally in different ways according to the individual’s particular experiences.

Findings from the Supporting Relatives and Friends questionnaireThe data from the Supporting Relatives and Friends questionnaire is limited because of the small sample size (n=7), making only limited analysis possible and allowing only tentative claims to be made.

The main impacts of visual impairment reported by supporting relatives and friends are frustration and loss of confidence, the loss of the ability to read being the most commonly mentioned practical effect.

The main way in which visual impairment affects people’s relationships is the increased dependency and need for support which it creates.

The ESaC services are seen as helping by giving people an improved outlook, reducing their symptoms and giving them someone to talk to.

Discussion

Key findings Impact of the ESaC services on psychological distress -

The Full CORE Sample of 35 individuals who participated in this study clearly represented a clinical population, showing relatively high levels of psychological distress, which are also reflected in the qualitative data. By the end of therapy these levels of psychological distress had improved markedly. This improvement in well-being is also reinforced by the findings

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from the Needs and Expectations data and by the qualitative interviews with service users, which illustrate vividly how service users feel they have benefitted from the ESaC services.

The humanistic model of counselling - The humanistic model of counselling adopted by the ESaC counsellors is an effective and appropriate approach for the services. This can be seen particularly in the emphasis that the approach places on establishing and working within the counsellor-client relationship, and in its emphasis on the capacity of the individual for personal growth and development. We suggest that consideration be given to formally incorporating the adoption of a humanistic approach into the ESaC model.

The referral process: ‘normalising’ counselling - LVS staff work quite hard to ‘normalise’ the idea of the counselling service with clients in their routine low vision appointments. This helps to introduce people to the service who may not otherwise seek counselling.

Referral sources - Some anticipated referral sources, notably GPs and hospital eye clinics, remain low providers of referrals. Increasing referrals from GPs may be an area of work that is beyond the scope of the ESaC services as they currently exist, with a single part-time counsellor employed at each site. However, work might be undertaken with local PCTs (or with GP commissioning consortia that are likely to take over the commissioning role of PCTs) to address this issue. In terms of referrals from hospital eye clinics, this study highlights the disparity in provision of Eye Clinic Liaison Officers across the UK. In London, where there is no Eye Clinic Liaison Officer (ECLO) in post at the local specialist eye hospital, no referrals came from hospital sources. However, in Gateshead, where an ECLO was in post at the local hospital eye clinic, they were the main source of external referrals to the ESaC service, accounting for 12% of all referrals.

Flexibility - One of the essential features of the ESaC services is flexibility in the way in which they seek to engage clients and potential clients. This includes the use of telephone counselling and home visits, flexibility in the number of counselling sessions offered to people and

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following up people who do not arrive for sessions. There is strong evidence from the service user data that this flexibility has been highly important, particularly in drawing people into the service who might not otherwise have sought counselling but who have gained significant benefit from it.

The dual emotional support and counselling model - The defining feature of the ESaC services is that they offer both emotional support and counselling. This enables people who might not be ready for formal counselling to benefit from less structured, but nonetheless much needed emotional support.

Integration of ESaC into low vision services - The introduction of the ESaC services into the low vision services is viewed as a very positive and much needed development, by service providers as well as by service users. Having a specialist counsellor to refer individuals who have an immediate counselling need on to is perhaps the most important aspect of this. Another valuable aspect of the integration of the ESaC services into the low vision services is the possibility it creates for collaboration between the counsellor and other low vision workers when working with service users around certain areas, particularly white cane use or other rehabilitative activities. Although relatively little such systemic work seems to have been undertaken in the service so far, it is an area of activity that would make the service stronger and more distinctive.

ConclusionThe evaluation has shown that the ESaC services are both highly valued and are having a significant impact on those who use them. Although further research would be needed to establish that there is a causal link between the ESaC intervention and the significant reduction in psychological distress seen in people who have used the service, the case for it being the causal factor is fairly persuasive. The qualitative findings not only help to support this conclusion, but also indicate some of the mechanisms that might be involved in bringing about the level of clinical improvement shown. They also highlight some of the key issues that need to be considered if the ESaC model is to be replicated in other low vision services.

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One issue is that the rates of referral into the services have been slower to develop than originally anticipated, although by the end of the evaluation both services were running at or near to full capacity. It is also important to note that the majority of referrals have come from within the low vision services in which the ESaC services are located. Although there is still further work that could be done to promote and develop the profile of the services, the fact that the services are running near capacity primarily through internal referrals is testimony to the level of need for emotional support and counselling that exists in low vision services. Opportunistic referrals from low vision service staff are an important feature of the service, drawing people into the services who might otherwise not have sought emotional support or counselling, but who go on to receive great benefit from it.

Another feature of the services which has been crucial to engaging people has been their flexibility, part of which resides in the dual model of emotional support and counselling that was designed into the services from the outset. It is this flexibility which marks the ESaC services out as distinctively different from counselling available through primary care and which also makes the services particularly suitable for people with visual impairments, whose emotional support needs change over time as their visual function changes and the circumstances of their lives change.

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1 Background

1.1 IntroductionThis report provides details of an evaluation conducted as an integral element of a pilot project set up by RNIB, with funding from GlaxoSmithKline, aimed at establishing an effective model of emotional support and counselling provision within an integrated low vision service (LVS). The project has been conducted on two sites: in Gateshead and London. In each site an Emotional Support and Counselling (ESaC) service has been set up as part of an existing Low Vision Service (LVS), providing a range of assessment and support services to people with visual impairments. The service in Gateshead is delivered by Sight Service, a locally-based voluntary sector organisation, and in London it has been delivered by RNIB as part of its Low Vision Service based in Judd Street, which serves residents of the London Boroughs of Camden and Islington.

The methodology adopted for the evaluation was designed in collaboration with RNIB and with the staff of the ESaC services at both sites. Ongoing communication between the research team and members of the ESaC Project Team, which was set up to oversee the pilot project, helped to ensure that the evaluation was conducted robustly and with the needs of the services in mind.

1.2 The case for counselling in low vision services

1.2.1 Prevalence of visual impairmentVisual impairment affects a significant proportion of the UK population, with over 362,500 people registered as Severely Sight Impaired (SSI) (Blind) or Sight Impaired (SI) (Partially Sighted) in England, Wales and Scotland (Health and Social Care Information Centre, 2008; Local Government Data Unit Wales, 2008; National Statistics, 2007) , over 65% of whom are over 75. However, it is recognised that those formally registered as SSI or SI represent only a relatively small proportion of those who experience visual impairment (Barry & Murray, 2005). Visual impairment particularly affects older people, and it has been estimated that between 1.2 and 2.2 million people aged 65 and over in the UK have a mild to serious visual impairment (Charles, 2007).

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1.2.2 The psycho-social impacts of visual impairmentThe link between visual impairment and reduced psychological well-being is now well-established, particularly for older people. A review of research evidence conducted by Wahl and colleagues found that the reported prevalence of depressive symptoms amongst older visually impaired people in most studies was between 25% and 45%, with some studies reporting rates over 50% (Burmedi et al., 2002b). These rates contrast with rates of depression in the general population of older people of less than 20% for mild depression and less than 5% for more severe depression (Burmedi et al., 2002b). As an example, one study of depression in people with advanced Age-related Macular Degeneration (AMD) in the United States found a rate of depression of 32.5% in a sample of 151 individuals, a rate twice as high as that found amongst older people in the general population (Brody et al., 2001). Although one large UK study of the health of older people conducted through primary care practices found a lower prevalence of depression amongst people who were visually impaired than that reported in the Wahl review, at 13.5% it was still nearly three times as high as that reported amongst older people who were not visually impaired (4.6%) (Evans et al., 2007). It is suggested by the authors that the lower rate of prevalence in this study may be accounted for by the fact that it used a community-based sample, whereas most studies of the link between visual impairment and depression have used samples of participants seeking health care.

Two studies by Bazargan and colleagues of older Black Americans have shown that the link between visual impairment and reduced psychological well-being is not accounted for by other factors such as demographic characteristics, functional status and perceived health status (Bazargan et al., 2001; Bazargan & Hamm-Baugh, 1995) . Whilst most studies into the relationship between visual impairment and psychological well-being find a clear link between the two variables, a study by Rovner and colleagues further suggests that low psychological well-being may also adversely affect visual function (Rovner et al., 2006), a finding which has particular implications for those working in low vision services whose role is to help people with visual impairment to maximise their visual function.

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A number of studies have looked at the relationship between both visual and hearing impairment and psychological well-being. One of these studies found that whilst both forms of impairment were associated with increased risk of depression, only visual impairment was also associated with poorer social relationships (Carabellese et al., 1993). Two studies found that whilst both were linked to reduced psychological well-being, the link was stronger for visual impairment than for hearing impairment (Bazargan et al., 2001; De Leo et al., 1999). The De Leo study, along with several other studies, also identified an increased risk of suicide in people with visual impairment (De Leo et al., 1999; Lam et al., 2008; Mitchell & Bradley, 2006; Waern et al., 2002).

As well as evidence for the direct psychological impact of visual impairment, there is also evidence that it has wider social and behavioural impacts, which in turn may indirectly affect psychological well-being. In their review of research evidence relating to the impact of visual impairment on older people, Wahl and colleagues found that visual impairment affects the ability of older people to engage in daily living activities, reduces their level of mobility and restricts their leisure activities (Burmedi et al., 2002a). They also found that visual impairment has a negative impact on older people’s social relationships and social support, and that social support may help to protect against depression and increase capacity for adaptation (Burmedi et al., 2002b). The visually impaired person is likely to experience feelings of loneliness, which alters their ability to adapt to visual impairment (Verstraten et al., 2005). A recent systematic review of research into quality of life in people with AMD demonstrated a reduction in quality of life, including a reduced ability to live independently and to engage in leisure activities (Mitchell & Bradley, 2006). The stress that living with visual impairment places on relationships, as people become less able to live independently and are compelled to rely on family and friends to meet their support needs, was highlighted in another recent study (Thetford et al., 2008).

Finally, people with visual impairments, like people with other physical or sensory impairments, face discriminatory and stigmatising social attitudes which may negatively influence their psychological well-being. For example, devices that help to increase the mobility of people with visual impairments can serve as symbols that themselves become the subject of prejudice (Ben-Moshe & Powell, 2007). This is particularly true of the white cane,

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which is a powerful symbol associated with visual impairment (Schillmeier, 2008). In the light of this, people with visual impairments may be reluctant to use such devices, particularly when they signify the presence of an impairment that may not otherwise be apparent to the outside world. This may have implications for the work of those in low vision services, part of whose role is to promote the use of such devices.

1.2.3 The role of integrated low vision servicesDespite advances in the treatment of eye disease and in interventions aimed at correcting sight, for many of those who experience visual impairment through conditions such as glaucoma and AMD, deterioration in visual function still occurs, with all the functional impacts that entails. A major focus of interventions aimed at people with low vision must therefore be upon enabling individuals to learn how to function, physically, socially and emotionally with low and deteriorating vision. Because visual impairment is multi-dimensional in its effects, low vision services need to draw upon the expertise of a number of professional groups providing a range of services including low vision assessments, prescription of optical and non optical aids, support in using such aids and welfare rights advice.

Access to integrated low vision services is recognised as being important for people at all stages of the visual impairment ‘journey’ from the point of diagnosis onwards. However, despite the work of bodies such as the Low Vision Services Consensus Group services in many areas of the UK are often inadequate, fragmented and poorly co-ordinated (Culham et al., 2002; Ryan & Culham, 1999). In the Network 1000 study into access to services and support, only 50% of the registered visually impaired people surveyed had ever visited a low vision clinic (Douglas et al., 2008).

1.2.4 Emotional support within low vision servicesAs part of these integrated, multidisciplinary low vision services, there is a growing recognition of the need to provide emotional support services (McBride, 2005). This is highlighted in various national standards and guidelines (Low Vision Services Consensus Group, 1999; NHS Eye Care Services Programme, 2007; NICE, 2004; Vision 2020 UK/RNIB, 2008). However, evidence of the effectiveness of emotional support and counselling services and their role alongside and within related vision services (statutory and voluntary) is limited (Nyman et al., 2010). An

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evaluation of an RNIB pilot counselling service in Bristol 2001-2005 indicated a range of significant benefits from the provision of such a service both to service users and related statutory services (Nicholls, 2005). These included increased self-esteem, better relationships, reduced levels of depression and suicide risk, improved quality of life and a reduction in the burden placed on health and social care services. There is evidence that the emotional support needs of individuals who attend specialist low vision services also impact on those who work in the services, particularly optometrists and rehabilitation workers (Fenwick et al., 2009; McBride, 2005).

An important element in understanding the emotional impact of visual impairment is understanding it as a transitional process through different stages (Thurston, 2010) in which people’s emotional and other support needs change over time from diagnosis onwards (Douglas et al., 2008; Thetford et al., 2008). Thurston’s study highlighted the key role that counselling can play in helping people through key stages of that transition, particularly at the time of diagnosis and during rehabilitation. It also highlighted the importance to visually impaired people themselves of receiving counselling from someone who understands the experience of being visually impaired, underlining the need for specialist counselling services for people with visual impairment. However, the Network 1000 study found that only 2% of recently registered visually impaired people had received formal counselling or emotional support of some kind in the first year after diagnosis (Douglas et al., 2008).

Thus there is a strong body of evidence indicating a need which is currently unmet. RNIB’s ESaC pilot project is one response to both this evidence and to policy guidance highlighting the need for specialist emotional support services provided as part of integrated low vision services. Because few such services exist, there is little research evidence for the effectiveness of such services. It is in this context that the ESaC pilot project has been conducted.

1.3 Description of the ESaC servicesAt each site one 0.6 full time equivalent (3 days per week) counsellor is employed. During the course of the ESaC pilot project there have been three counsellors employed: one at the Gateshead site and two at the London site. The first London-

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based counsellor left the service in April 2009 and was replaced by another counsellor. All three counsellors have been experienced, but have had different professional backgrounds. The Gateshead counsellor is MBACP (Member of the British Association for Counselling and Psychotherapy) Senior Accredited; both the current and previous London counsellors are Chartered Counselling Psychologists (British Psychological Society and Health Professions Council registered).

The intervention delivered by the ESaC services includes a number of elements that individually or collectively may impact upon a client's psychological wellbeing. These are: provision of information about support that is available, initial assessment of needs, provision of time limited counselling and/or emotional support with an accredited counsellor, and consultancy support to the Low Vision Team.

All clients who attend the LVS are routinely given information about the ESaC Service with details of their low vision appointment. Clients may self refer or, following the low vision appointment, may be referred by members of the LVS (Optometrist, Rehabilitation Worker, Service coordinator) or by other professionals (e.g. GPs). Following referral, the counsellor contacts the client by telephone to arrange an initial assessment appointment. Assessment takes place at the centre or, if the client is unable to travel, at the client’s home. At assessment, clients are invited to explore their psychological support needs and if appropriate are offered time limited individual counselling/emotional support from the counsellor. As an outcome of the assessment, clients are, where appropriate, offered up to 12 sessions of counselling or emotional support. Each counsellor aims to hold an optimum caseload of 10 clients, allowing for 2 or 3 requiring home visits.

The decision to offer emotional support as an option was made in the project planning stage. Whilst many people affected by visual impairment express a need for someone to talk to outside of family and friends, not all feel ready, feel the need for, or feel willing to engage in counselling. In recognition of this the counsellor may work at less depth in a less formalised approach utilising counselling skills. This offers clients the opportunity to talk and be listened to within a confidential setting and for feelings to be normalised. This intervention is described as emotional support.

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Signposting to other sources of emotional support, for example befriending schemes, may also take place at assessment.

Sessions last up to 50 minutes and are usually weekly, although this may vary. Sessions take place at the centre, by telephone or, if clients are unable to travel (for example on health grounds), at the client’s home. Counselling offers the opportunity for clients to explore their thoughts and feelings about the impact of visual impairment on everyday living and their sense of self. Over an agreed number of sessions this provides an opportunity for feelings to be affirmed and normalised; for reflection upon the basis of their beliefs about visual impairment; for the identification of personal strengths that can be utilised and for a re-evaluation of their ability to live with reduced sight. This can enable the client to test out new approaches within a supportive relationship. A systemic approach may also be utilised, e.g. where a client is also receiving rehabilitation support an integrated approach may be negotiated (within agreed limits of confidentiality) with the rehabilitation worker. For example if a client is working on mobility skills with a rehabilitation worker, and is experiencing anxiety about travelling alone they may explore this in more depth with the counsellor.

In addition to providing counselling and emotional support sessions to clients, the counsellor acts as a point of consultation to other members of Low Vision Staff who might want advice or support in meeting the emotional needs of service users as part of their role.

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2 Methods

2.1 Aims and objectives of the evaluation The evaluation had two overarching aims:

1. To explore the impact of emotional support and counselling services provided as part of an integrated low vision pathway;

2. To provide evidence to support policy makers, commissioners and practitioners for the future development and delivery of low vision services.

In addressing these aims the evaluation had a number of objectives:

To assess the impact of the services on clients’ mental health, wellbeing and quality of life;

To assess the efficiency and accessibility of the services; To examine the experiences and views of the services of

service users, professionals and other key stakeholders; To explore the impact of the services on other components of

the low vision services and related services, including eye care services, rehabilitation etc.;

To assess the benefits and challenges of providing emotional support and counselling within an integrated low vision service;

To disseminate findings widely in order to reach those persons best placed to effect changes to improve services for visually impaired people.

2.2 Study designIn order to provide a robust and holistic evaluation of the services a mixed methods approach was adopted, using a range of quantitative and qualitative research methods. The main body of data was collected from clients of the ESaC services, with additional data collected from service providers and from supporting relatives and friends of service users, in order to generate a broader understanding of the impact of the services.

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2.2.1 Service use dataIn order to generate as comprehensive a picture as possible of the overall development and use of the services, basic demographic and clinical information was obtained from as many clients as possible of the ESaC services. These data were collected by the counsellors themselves during the assessment or first counselling session with clients. Data included age, gender, socio-economic characteristics, current living circumstances, cause and duration of visual impairment, visual acuity and co-morbidity (e.g. hearing impairment, stroke, diabetes, pre-existing mental health conditions). The source of referral to the service was recorded as well as the number of sessions planned and delivered. Data for each site was collated in an Excel database by the counsellors, and then forwarded on to the research team on a monthly basis. These data have been used on an aggregated basis to create an overall picture of the services’ client base.

2.2.2 Questionnaires with service usersWith all service users who gave their consent, two sets of questionnaires were administered, one at baseline (wherever possible at the initial session) and another post-intervention (at the end of the final session). Service users who did not attend for their final session were followed up by telephone. The questionnaires consisted of one validated quantitative measure of well-being (the CORE-OM; see below) and one qualitative assessment of needs and expectations designed specifically for the study. In most cases, because of the level of visual impairment of study participants, the questionnaires were administered by the counsellors, who were also responsible for collecting and returning the completed questionnaires to the research team.

2.2.2.1 The CORE-OMThe CORE Outcome Measure (CORE-OM) was used with service users at baseline and post-intervention to assess the impact of the services on psychological well-being and social functioning. Eleven different instruments were considered by the research team and Project Team, some of which related specifically to people with visual impairment. However, many either tended to focus too much on visual functioning rather than quality of life or psychological functioning, or they had not been widely used in research. Whilst the CORE does not focus specifically on people with visual impairment, it does have other benefits (listed below)

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and on balance it was decided it was appropriate for this evaluation.

The CORE-OM was designed to be suitable for use across a wide variety of client groups and service types. It taps into a 'core' of clients' distress, including subjective well-being, commonly experienced problems or symptoms, and life/social functioning. In addition, items on risk to self and to others are included. The CORE-OM addresses global distress and is therefore suitable for use as an initial screening tool and outcome measure, and the mean of all items can be used as a global index of distress. However, mean item scores for the dimensions of wellbeing, problems/symptoms, life functioning, and risk can also be used separately where it is desirable to produce a finer grained analysis.

The CORE-OM has now been extensively used in assessing the efficacy of a range of psychological therapies with clients who have a variety of presenting problems. Data from the original pilot studies on the CORE-OM suggested it had considerable clinical face value, supportive validity and reliability, and distinguishes between clinical and non-clinical or general populations; research in the field since then has confirmed this to be the case (see for example Connell et al., 2007; Evans et al., 2002; Gilbody et al., 2007)

The CORE has a number of advantages over many similar client-completed protocols utilised in existing measurement practice:

1. It is both very brief and user-friendly so client compliance is high;

2. The content of the measure addresses those patient aspects identified by practitioners as important assessment domains;

3. As the measure can be practitioner-scored, subjective well-being, symptom, functioning and risk profiles are pragmatic for assisting assessment and discharge;

4. Practitioners using the CORE-OM are able to compare individual scores with available normative data for clinical and non-clinical populations allowing clinically significant change to be determined;

5. Use of the CORE-OM in research studies has not been restricted to only one client group (such as people with

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schizophrenia or personality disorder): CORE measures of change in the psychological functioning of people with one sort of problem (such as visual impairment) are the same as CORE-measured changes in the psychological functioning of people with other presenting problems. Psychological improvement is the same in all people. Furthermore, because the CORE-OM has now been widely used in a range of studies assessing psychological wellbeing there has developed a substantial dataset of comparative outcome data. The fact that these are not necessarily vision-related was felt to add an element of validity to the study since it allows comparison between the study sample and others that have received psychological therapy. Adoption of an instrument confined for use in studies involving only people with visual impairment would mean that any comparisons made would be restricted to this relatively small client-group and would limit comments on the counselling approaches under study.

In short, the CORE-OM is sensitive to change over time, relatively quick to administer (approximately 5-15 minutes) and was acceptable for use by the counsellors as it does not cause great disruption to their ‘normal’ model of service. This was particularly important for the ESaC services because, although the CORE is designed to be self-completed, the questionnaire was usually administered by the counsellors i.e. the counsellors would read out the questions and write down the clients’ responses. It has 34 items addressing the four domains of subjective wellbeing, problems/symptoms, functioning and risk (to self and to others) (Evans et al., 2002). The problems/symptoms domain includes item clusters addressing anxiety, depression, physical problems and trauma. Similarly, the functioning domain includes item clusters relating to general functioning, close relationships and social relationships. All items are scored on a five-point scale ranging from 0 (not at all) to 4 (most or all of the time), higher scores reflecting greater psychological distress in the respondent. The total score can range from 0–136 and is calculated by summing the response values for all 34 items. The total mean score is calculated by dividing the total score by the number of completed items (usually 34). 2.2.2.2 Qualitative assessment of needs and expectationsA qualitative assessment tool was devised for the purposes of the study to generate a picture of what the needs and expectations

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were of clients of the services, and to assess the extent to which the services met those needs and expectations. This took the form of two short, open-ended questionnaires, one for baseline and one for post-intervention. The baseline questionnaire was designed to assess what people hoped and expected to gain from the service, whilst the post-intervention questionnaire allowed people to reflect on what they had gained from the service, and whether it met their needs and expectations. As with the CORE, responses to the Needs and Expectations questionnaires (NEQs) were usually recorded by the counsellors. The research team worked with the counsellors to develop questions which were similar to what would routinely be asked in these sessions as part of the normal counselling model.

2.2.3 Qualitative interviews with service usersSemi-structured qualitative interviews were conducted with a sub-sample of the main sample of service users. The purpose of these interviews was to explore service users’ experiences of the service in more depth, allowing individuals to describe their experiences in their own words. As relatively little counselling research has focused on the client experience of counselling (Manthei, 2005), this element of the study provides a valuable additional layer of evidence that is absent from many service evaluations. Semi-structured interviews are based on open-ended yet clear lines of questioning (Holloway, 2005). A topic guide was used which ensured that there was consistency across the interviews in terms of the topics covered, but also flexibility, in order that individuals could focus on topics that were important to them. The interviews were all conducted face to face by one of the researchers (SH) between November 2009 and April 2010. In most cases the interview was conducted in the interviewee’s own home, but one was conducted at the Low Vision Service. All but one of the interviews was digitally audio-recorded and later transcribed in full. The data from these interviews were analysed thematically by one of the researchers (SH).

2.2.4 Qualitative interviews with service providersA total of 15 semi-structured qualitative interviews (7 in Gateshead, 8 in London) were undertaken with a range of service providers (see section 2.2.6.3 below for details). Twelve of these interviews were conducted face-to-face; two by telephone. Again, a topic guide was used to ensure consistency in the topics covered and in all but one case the interviews were digitally audio-recorded and

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later transcribed in full. One individual declined to give their consent for the interview to be recorded so notes were made of the interview in situ and written up shortly afterwards. These interviews were conducted in June and July 2009. The transcripts were analysed thematically.

2.2.5 Questionnaire with supporting relatives and friendsIn the original study protocol it had been intended to conduct a focus group interview at each site with up to 24 supporting relatives of friends of individuals who had taken part in a qualitative interview. In the event, this method proved to be unfeasible, due to the very small pool of participants to draw from. Instead, a short questionnaire was devised to be sent via the individual who had taken part in the interview, to an appropriate supporting relative or friend. The purpose of this questionnaire was to generate an understanding of the impact of visual impairment and of the impact of the ESaC services on individuals and on their relationships with their close relatives/friends, from the perspective of those relatives/friends.

2.2.6 Sampling and recruitmentThe sample for the study consists of three main groups, corresponding to the different components of the evaluation: current users of the ESaC services; staff of the ESaC services and other service providers; family and carers of users of the services. 2.2.6.1 Service usersRecruitment of service users began in April 2008 and continued until the end of January 2010, with the collection of follow-up data (CORE-OM and NEQs) continuing until the end of April 2010.

The minimum sample size required in order to ensure the quantitative analyses of the CORE-OM data would be adequately powered was calculated on the following basis: Paired t-test between the mean total CORE-OM score for the

sample at baseline (T1) and the mean total CORE-OM score at follow-up (T2);

Significance level of 5% 80% power

The sample size required was found to be n=34 individuals in total across both research sites.

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The majority of users of the services were invited to participate in order to maximise the size of the sample. In the original study protocol it had been planned for all users of the ESaC services to be invited to participate in the study. However, as the project progressed the counsellors found that recruitment to the study was not possible in the case of 50 clients (34%) who received at least one session of therapy. These clients either refused or were not invited by the counsellor to take part in the study. Further details of this group of excluded clients are given in section 3.6.1.

In the original study protocol it was also intended that data collection would continue until September 2009. However, this end date had to be extended due to the slower than anticipated rates of referral to the project and recruitment to the evaluation. Initial consent to participate in the study was sought by the counsellor or other appropriate member of staff within the service. In the majority of cases signed consent was obtained, but in one case audio consent was taken as an alternative. Refusal to take part in the evaluation did not prevent individuals from accessing the services nor influence the level or standard of support they received. Consent was also sought at this stage from participants for the researcher to contact them at a later stage for a follow-up interview. The signed consent forms were returned to the lead researcher.

Information and consent materials for recruitment of service users were produced in both large print and audio formats suitable for people with varying degrees of visual impairment. These materials were produced in collaboration with RNIB in order to meet the needs of research participants. When the study was first being designed it was thought that full ethical review by a NHS Research Ethics Committee might be required, so these materials were produced with NHS ethical requirements in mind. However, as recruitment got underway it became clear that the counsellors were finding that the use of the consent materials was creating a barrier to engaging people in the service. In most cases the counsellors were reading the information sheet out to service users in their assessment session, and this was found to be overly long and wordy. The materials were reviewed and a shortened version produced. These shortened versions of the consent materials were found to be much easier for the counsellors to use.

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2.2.6.2 Service users: Qualitative sub-sampleQualitative interviews were conducted with a sub-sample of the main sample of service users. In the original study protocol it was intended that this sub-sample would consist of up to 32 individuals who would be purposively selected on the basis of information derived from the study database and from issues emerging from the CORE data, a strategy in which the sample can be adjusted to allow for the exploration of particular issues of interest (Silverman, 2000). However, in the event the slow rate of recruitment to the study, and to the pool of participants willing to be interviewed, meant that a purposive approach to recruitment could not be adopted. Instead, a list of all those who had expressed a willingness to be contacted about being interviewed was drawn up for each site: 30 in total. At the request of the ESaC Project Team these lists were sent to the counsellors to be checked, and a number of individuals identified as not being appropriate for contact e.g. because of illness or because they had been referred on to other mental health services. A few others could not be approached about being interviewed because they were recruited to the study too late to be included in the interview sample.

In total 21 individuals were invited to take part in a qualitative interview: 12 in Gateshead and 9 in London. Contact was made by post first: an information sheet was sent in both large print and audio format along with a consent form, a freepost return envelope and a covering letter explaining that a researcher would be in touch by telephone within a few days to find out if they were willing to take part in an interview, and to arrange a date if appropriate. A total of 14 service users from the main sample consented to be interviewed, 7 from each site. Although consent forms and return envelopes were sent out in advance, in most cases verbal consent was taken over the phone and written consent obtained at the time of the interview. 2.2.6.3 Service providers and key stakeholdersFifteen qualitative interviews were conducted with service providers and key stakeholders, 7 from Gateshead and 8 from London. The sample was purposively selected, in discussion with the ESaC Project Team, and specific individuals identified by the Low Vision Service Manager at each site. The sample was made up as follows:

The three counsellors who have been involved with the project

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Three rehabilitation workers who work for the low vision services

Two optometrists from the low vision services Two low vision service managers One social worker based in a low vision service One low vision service receptionist One low vision service chief executive One hospital-based Eye Clinic Liaison Officer (ECLO) One hospital-based Ophthalmic Nurse Counsellor

These individuals were contacted directly by telephone by the Lead Researcher (SH), the context and purpose of the interview explained, their provisional consent to be interviewed obtained and a time arranged for the interview to take place. A printed information sheet was given to each individual at the time of the interview, and written consent obtained. 2.2.6.4 Supporting relatives and friendsThe questionnaire to supporting relatives and friends was sent out to 31 individuals identified as appropriate to be contacted by the counsellors – mostly individuals who had consented to be contacted about being interviewed. The questionnaire was sent with a covering letter to the individual who had used the ESaC service, explaining what the purpose of the questionnaire was and inviting them to pass it on to a supporting relative or friend for completion if they wished to. In order that the individual could look at the questionnaire before they passed it on, the questionnaire was contained in an open envelope, along with an information sheet written for the supporting relative/friend and a freepost envelope for returning the questionnaire directly to the research team. The questionnaire and information sheet were both in large print.

A total of seven completed questionnaires were returned. It could be argued that this sample was too small to justify the inclusion of the data in this report. However, it was felt by the Project Team to be important to try to gain some understanding of the perspective of close relatives and friends of people who had used the ESaC services, and so the decision was made to present the findings from this data in this report.

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2.3 Issues in setting up the evaluationThe ESaC services became operational in October 2007, with the counsellors in post and starting to see clients from this point. However, it was not possible to begin work on the evaluation at this stage, due to delays in the process of gaining research governance approval from the two Primary Care Trusts (PCTs) involved (Camden & Islington and Gateshead) and in obtaining a decision on whether the evaluation needed full research ethics committee approval. There was uncertainty on the parts of the PCTs and ethics committee as to whether the study was ‘research’, or a service evaluation. As a service evaluation the study would not need to be submitted for full consideration by a research ethics committee, nor would it need to be registered as ‘research’ with the local PCTs, thus avoiding the need for the researchers to go through the process of gaining honorary contracts with the two PCTs. These uncertainties led to a delay of several months. A definitive decision was finally received from the National Research Ethics Service in April 2008 that the study was an evaluation and therefore would not need to go to full ethical review and PCT registration. Thus formal recruitment of participants and collection of data was able to commence in April 2008.

Another factor that has affected the progress of the project and the evaluation has been the slower than anticipated rates of referral to the new ESaC services. This is an issue that is discussed in 5.3 of this report.

It is also important to mention the tensions present in the role of the counsellors as co-researchers in this evaluation. As has already been noted, the counsellors were responsible for recruiting service user participants to the study and in this respect were required to act as ‘gatekeepers’ in the research process. However, their primary role and responsibility was clearly that of counsellor rather than researcher, which meant that they exercised their clinical judgement in assessing some individuals as not being appropriate to recruit to the study. There is no suggestion that this judgement was being exercised in order to skew the sample or in any other way to intentionally interfere with the research process. However, it does need to be noted as a potential limitation in the research design. A further tension is that the counsellors themselves were responsible for administering the CORE-OM and

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the NEQs. Again, there is no suggestion that this resulted in any deliberate interference in the data collection process. However, as the counsellors were responsible for delivering the service that was being assessed there is clearly a potential ambiguity in their role. It is important to acknowledge the presence of these tensions in this study, as in much evaluative research that involves practitioners as ‘co-researchers’.

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3 Quantitative findings

3.1 Referrals to the ESaC servicesDuring the period of service user recruitment to the study, from April1st 2008 to April 31st 2010, a total of 190 people were referred to the ESaC services. The basic demographic details of these individuals are shown in Table 1.

Table 1. Referrals to the ESaC services during the study period

Gateshead01/04/08 to 30/04/10

London01/04/08 to 30/04/10

Total

Total number of referrals 89 101 190Number accepted for ESaC (cases)

69 80 149

Mean ageReferred 65.95 66.80 66.40Accepted 65.10 67.30 66.28GenderMen referred 29 29 58Men accepted 24 24 48Women referred 60 72 132Women accepted 45 56 101

Throughout the course of the pilot project there has been a concern to ensure that referral levels are optimised. Little information is available on what are acceptable or average referral rates in counselling services. However, the referral rates for this project compare favourably with those reported in RNIB Bristol Counselling Project (Nicholls, 2005). The Bristol project was evaluated over a period of three years, with one 0.6 fte counsellor, the same staffing level as at each ESaC site, and reported a total of 83 referrals over that period.

In terms of conversion of referrals into cases, the Bristol project reported that 68 of the 83 referrals evolved into cases (seen once or more). This represents a conversion rate of 81.9%, which compares with 77.5% in Gateshead and 79.2% in London.

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3.2 The different service user samplesTable 2 shows the numbers of people who were referred to the ESaC services, at both the Gateshead and London sites, that consented to allow personal data to be used in the research study. In this section these 98 clients are referred to as the Overall Sample. Within this number, those who provided CORE data at the T1 assessment (the Baseline CORE sample: n=64) are shown alongside those from within this group who provided CORE data at each assessment time (referred to as the Full CORE Sample: n=35).

Table 2. Participants providing data for the research study

Site Overall Sample(any personal data)

Baseline CORE sample(CORE data at T1)

Full CORE Sample(CORE data at T1 and T2)

Gateshead 58 40 18London 40 24 17Total 98 64 35

3.3 Referral sourcesTable 3 shows the sources of referral to the services, based on data provided for the 98 individuals in the Overall Sample. This shows that the majority of referrals came from within the Low Vision Services (those marked LVS). Three quarters of referrals at each site came from these sources, which also includes self-referrals following either a screening call or attendance at a vision support course. Of the LVS providers referring to the ESaC services, by far the biggest source of referrals is the rehabilitation workers, who account for 42% of all referrals to the Overall Sample. In London a much larger proportion of referrals came from rehabilitation workers than in Gateshead: 58% compared to 31%. However, this is accounted for by the fact that in Gateshead a larger number of people are involved in providing what can be understood broadly as ‘social support’ to people who use the Low Vision Service. This includes a social worker working within the Low Vision Service and the Supporting People team, who provide housing-related support under contract to the local authority.

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The other main difference between the two sites in terms of referral sources is that in Gateshead the main source of external referrals is the Eye Clinic Liaison Officer (ECLO) employed by Royal Victoria Infirmary in Newcastle, which is one of the main regional providers of eye health care. At present no ECLO is employed in Moorfields Eye Hospital, the main specialist health care provider used by residents of Camden and Islington. This reflects the disparity of provision of ECLOs across the UK

Table 3. Sources of referrals to the services (Overall Sample)

Referral source Gateshead

London Total Overall Sample

Rehabilitation worker (LVS) 18 23 41Supporting People (LVS) 14 0 14ECLO 7 0 7Self after screening call (LVS) 4 3 7Optometrist (LVS) 1 4 5Social worker (LVS) 5 0 5Self 0 5 5GP 1 2 3Voluntary sector 1 1 2Family member 2 0 2Self after vision support course (LVS) 1 0 1LVS unspecified 1 0 1Community optometrist 1 0 1Clinical psychologist (diabetic clinic) 0 1 1Employment worker 0 1 1College sensory support team 1 0 1Psychiatrist/psychiatric unit 1 0 1

3.4 Eye conditionsTable 4 shows the eye conditions reported by service users in the Overall Sample of 98. Many participants reported more than one condition. As might be expected, Macular Disease is the most commonly occurring condition in the sample, affecting 45% of the total sample. The condition occurs slightly more frequently in the Gateshead sample (47% of Gateshead participants) than in the London sample (43% of London participants).

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Table 4. Eye conditions reported by service users (Overall Sample)

Eye condition Gateshead


Macular Disease 27 17 44Diabetic retinopathy or maculopathy 6 4 10Glaucoma 5 5 10Cataracts (mostly in conjunction with other conditions)

5 5 10

Amblyopia 3 2 5Eye injury due to trauma 3 1 4Stroke-related sight loss 2 2 4Myopia (degenerative or high) 1 3 4Stargardt’s Disease 2 1 3Usher’s 2 1 3Stickler’s Syndrome 1 1 2Brain tumour 2 0 2Retinitis pigmentosa 0 2 2Charles Bonnet Syndrome 1 1 2Retinal dystrophy 1 1 2Bleeding behind eyes 2 0 2Cancer 1 1 2Detached retina 1 1 2Multiple Sclerosis related sight loss 1 1 poss. 1 or 2CMV retinitis 0 1 1CMV retinopathy 0 1 1

3.5 Other physical health conditionsOf the Overall Sample of 98, the majority (88%) reported having other physical health problems in addition to their eye condition. Many had multiple health conditions. Table 5 shows the numbers reporting different conditions. As might be expected, the most commonly occurring conditions are those associated with the ageing process: arthritis and joint conditions, heart disease, diabetes and stroke.

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Table 5. Physical health conditions reported (Overall Sample)

Condition Gateshead


Arthritis, osteoporosis, joint/spinal problems 20 13 33Heart attacks, heart disease, angina 15 4 19Diabetes 9 7 16Stroke 8 3 11Asthma, COPD, breathing difficulties 7 2 9Hearing loss 7 1 8High blood pressure 7 1 8Cancers 2 5 7Cognitive impairment, memory loss 4 1 5HIV 1 3 4Diverticulitis, hiatus hernia, GI problems 3 1 4Balance problems 3 1 4Anaemia 3 0 3Epilepsy 0 2 2Multiple Sclerosis 1 1 2Sickle cell anaemia 0 1 1

3.6 Characteristics of the Full CORE Sample

3.6.1 Representativeness of the sampleThe main analyses reported in this section relate to the 35 people who made up the Full CORE Sample, having provided CORE-OM data at each of the two assessment times. Since our evaluation of the effectiveness of the ESaC services was based on these individuals it is important to establish whether they are representative of the larger group who received the service. Wherever possible, all those who received the ESaC intervention were invited to take part in the study. However, on a number of occasions people were excluded from the Full CORE Sample, either because they declined involvement, terminated their therapy prematurely or because their mental state or other problematic issue precluded them from the study. In total 30 clients from Gateshead and 20 from London fell into this group. Of these 50 people, 28 (56%) terminated their involvement in the service and study prematurely and the reasons for this were unknown. Where the reasons were known, however, the most common was because the client suffered marked cognitive impairment and the counsellor judged it inappropriate to invite them to take part in the

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study (n=7; 14%), because they declined involvement in the study (n=5; 10%), they failed to engage with the service (n=3; 6%), had mental health difficulties (n=2; 4%), raised one of a number of other concerns with the counsellor (n=2; 4%), had a substantial physical illness (n=1; 2%), were considered to be inappropriate for the ESaC service (n=1; 2%) or had died before further involvement was possible (n=1; 2%).

The basic characteristics of the clients who provided CORE-OM data at each assessment (the Full CORE Sample) were compared with the remaining 63 individuals in the Overall Sample (see Table 6). These comparisons indicated that there were no statistically significant differences in terms of age or gender. We may therefore conclude that the Full CORE Sample is likely to be reasonably representative of the sample of ESaC service users who received the ESaC intervention and consented to provide data to the research study.

Table 6. Comparison of Full CORE Sample and Overall Sample

Variable Full CORE Sample(n=35)

Overall Sample(n=63)

Measure P value

Mean age (years)

58.89 66.29 1.7521 0.084

Gender malefemale

12 (34.3%)23 (65.7%)

21 (33.3%)42 (66.7%)

0.0092 0.924

1 t-test2 chi-square test

3.6.2 DemographyTable 7 shows the demographic characteristics of the Full CORE Sample at the baseline assessment. As the Table illustrates, there was a majority of women at each site, with most clients being aged 50-65 years. Comparison of ages between the two research sites indicated mean values of 56.8 years in Gateshead and 61.1 years in London, a non-significant difference (t=-0.701; p=0.488). Three-quarters of clients considered themselves to be White British and overall nearly 90% were White. Fewer than one in ten clients were employed and nearly half were retired, as expected given the age distribution in the sample. Most (over half) lived alone, though over

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one third were living with family members at the time of the first assessment. In the Overall Sample a total of 24 people (24.5%) received some level of informal care from their family or friends, of whom 6 were in the Full CORE Sample.Table 7. Characteristics of the Full CORE service user sample (n=35) 1

Variable Gateshead

Gateshead

London

London

Whole sample

Whole sample

n % of whole

sample

n % of whole

sample

n % of whole

sampleGenderMale 7 (20.0) 5 (14.3) 12 (34.3)Female 11 (31.4) 12 (34.3) 23 (65.7)Mean age (in years)Male 63 57 61Female 53 63 58Ethnic background (n=34)2

White British 16 (47.1) 9 (26.5) 25 (73.6)White European - 5 (14.7) 5 (14.7)Black British 1 (2.9) - 1 (2.9)Black African - 1 (2.9) 1 (2.9)Asian-Indian - 1 (2.9) 1 (2.9)Asian-Japanese - 1 (2.9) 1 (2.9)EmploymentPaid employment 1 (2.9) 2 (5.7) 3 (8.6)Unemployed 4 (2.9) 7 (20.0) 11 (22.9)Long-term sick 4 (11.4) - 4 (11.4)Retired 8 (22.9) 8 (22.9) 16 (45.8)Student 1 (11.4) - 1 (11.4)Living situation (n=34)2

Alone 8 (23.5) 12 (35.3) 20 (58.8)Spouse/partner 4 (11.8) - 4 (11.8)Spouse/partner & family

1 (2.9) - 1 (2.9)

Parents 2 (5.9) - 2 (5.9)Other family 1 (2.9) 5 (14.7) 6 (17.6)Hospital 1 (2.9) - 1 (2.9)

1 Sample members who provided CORE data at baseline and follow-up2 Full data not available for all sample members

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3.6.3 Mental healthNearly half the sample (17 of 35 people: 48.6%) reported having a history of mental health problems. Most of these individuals (n=15) had experienced depression or some form of bereavement reaction. However, there was a marked difference between the sites, with 41% of Gateshead clients reporting past mental health problems compared with 59% at the London site (though low numbers limited the feasibility of further statistical analysis of these data).

3.6.4 Psychological wellbeingThe results shown in Table 8 indicate that at baseline both men and women in the Full CORE Sample fell within the realm of ‘clinical population’ in all CORE domains except risk. For example, Table 8 indicates that previous research has identified that a mean score of 1.37 is the maximum a sample of males in the ‘non-clinical’ general population is likely to have in the CORE-OM wellbeing domain. In the present study the male sample mean exceeded this, with a mean score of 2.40, so indicating the sample is well within the ‘clinical population’ criteria.

Table 8. Gender differences in CORE-OM baseline scores in the service user sample compared with scores from other studies

Cut-off values from previous studies (non-clinical population)*

Present study

Well-beingMen 1.37 2.40Women 1.77 2.30ProblemsMen 1.44 2.41Women 1.62 2.11FunctioningMen 1.29 1.33Women 1.30 1.31RiskMen 0.43 0.31Women 0.31 0.27

*Cited by CORE System Group (1998)

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There has been considerable discussion about the calculation of cut-off values since these are crucial in ascertaining the nature and severity of psychological distress in a sample and also the outcome of psychological therapies. More recent work than that reporting the values for ‘previous studies’ shown in Table 8 has used the mean value of all 34 items in the CORE-OM and multiplied this by 10, so these amended scores may range from 0 to 40 (Connell et al., 2007). On the basis of an analysis combining data from several previous studies and a total of 10,761 people attending a range of psychological therapy services versus a sample of 535 members of the general population, this research group calculated a cut-off value between the clinical and general populations on the CORE-OM of 9.3 for men and 10.2 for women, rounded off to 10 overall, equivalent to a mean item score of 1.0 (Connell et al., 2007). These values are somewhat lower than the previously reported cut-off scores of 11.9 for men and 12.9 for women (Evans et al., 2002). However, Connell and colleagues (2007) feel their figures reflect more accurately the values needed for comparison with the general population. Relative to these more recent cut-off points, both men and women in the Full CORE Sample of the present study remained well within the clinical population at baseline, with amended mean baseline scores of 16.54 and 15.24 respectively.

In the remainder of this section, the basic mean item values will be used rather than these amended mean scores (which are the mean values multiplied by 10).

3.6.5 Vision levelsVision levels in the two research sites are shown in Figure 1. These were based on visual acuity as recorded in participants’ notes. However, data relating to visual field restrictions were not available so no account was taken of this and the results shown must therefore be considered with some caution.

Vision Levels were coded as follows:1 <6/60 Better Eye – could be registered blind1 6/24-6/60 Better eye – low vision in best eye2 6/24-6/60 Both eyes - low vision3 >6/24 best eye – not registered4 >6/24 both eyes – normal

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Vision Level data were only available for 26 of the 35 people in the sample, but these were equally shared between sites, with 13 people from each. The median Vision Level for Gateshead was 3.00 compared with a median of 2.00 for the London clients, reflecting a poorer level in the latter. However, this difference was not statistically significant (z=-0.798; p=0.425). Figure 1 clearly shows some differences between sites in the distribution of the scores. In Gateshead 46.2% of clients had a relatively better Vision Level meriting a score of 4, whereas in London only 17.7% of clients reached this score or above. Although sample numbers were small, the data suggest that the visual impairment in Gateshead clients may have been somewhat less severe than those in the London site.

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3.7 Therapeutic input over the duration of the study

3.7.1 Emotional Support and CounsellingIn the Overall Sample of 98 people, the majority (64.5%) received counselling rather than emotional support (35.5%). However, there was a difference between the two sites: only 36% of Gateshead clients in the Overall Sample were documented as receiving counselling, the remainder all receiving emotional support, whereas in London 63% received counselling, 25% emotional support and 13% a combination of both. When it came to the Full CORE Sample, however, the proportions here were exactly the same for each research site, with 76.5% receiving counselling and 23.5% emotional support. However, because numbers were small in the group receiving emotional support, no further statistical analysis was conducted on the comparison between those receiving this therapeutic approach rather than counselling. One possible explanation for the difference in the Overall Sample in type of therapy provided at the two sites is the difference in client-reported mental health problems between the two sites, as reported above (41% of Gateshead clients reporting past mental health problems compared with 59% of London clients).

As expected, it was found that clients receiving the lower level of therapeutic input (emotional support) remained in the services for a significantly shorter duration than did those receiving the greater input provided by counselling (mean durations of therapy were, respectively, 6.50 and 13.38 weeks; t=-2.103; p=0.043).

3.7.2 Duration of therapyThe mean duration of therapy, taken nominally as the number of weeks between the T1 and T2 assessments, was 11.46 weeks (SD 8.58) for the Full CORE Sample, though this ranged quite widely (1-46 weeks). Comparisons between the two research sites revealed a statistically significant difference in this variable, with a mean duration of 8.33 weeks in Gateshead compared with 14.76 weeks in London (t=-2.362; p=0.024). However, there was a distinct outlier in the London site who remained actively ‘on the books’ of the service for 46 weeks, which will inevitably have dragged the London mean value upwards somewhat. These outlying data relate to a female participant

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whose counselling was interspersed with a number of breaks because of physical illness. This situation was somewhat unusual and, arguably, a more realistic comparison would exclude her data from the analysis. Re-analysis in the absence of these outlying data indicated a mean duration of therapy of 10.44 weeks (SD 6.21) for the Full CORE Sample, ranging from 1-27 weeks. However, the difference between sites remained significant (Gateshead mean: 8.33 weeks; London mean: 12.81; t=-2.221; p=0.034).

3.7.3 Number of therapy sessionsThe probable number of therapy sessions to be held with each client was agreed with their counsellor in advance, though some flexibility for an increase was built into this arrangement. In the Gateshead site the mean number of sessions agreed was 6.72 compared with 10.47 in London – a significant difference (t=-3.444; p=0.002). This is entirely in keeping with the greater duration of therapy in the London site, as noted above.

3.8 Change in CORE scores between baseline and follow-up assessments

3.8.1 CORE-OM results for both research sites togetherCORE-OM total scores: The mean CORE total scores at T1 & T2 for the Full CORE Sample of 35 participants were 53.34 and 30.83 respectively. This result is statistically significant (t=7.323; p<0.001) and reflects considerable improvement in psychological wellbeing during the course of treatment.

CORE-OM mean item scores: The CORE-OM mean item scores are the CORE-OM total scores for each individual in the sample divided by 34, the number of items in the questionnaire. The mean item score is a statistic that has been frequently used for analysis in previous research using the CORE-OM and it has therefore been adopted as the main statistic in the remaining analyses in this section rather than the CORE-OM total score or the amended mean item score (the mean multiplied by 10). In each of the domains within the CORE-OM questionnaire, mean item scores for this sample of 35 people at the T1 (baseline)

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assessment were found to be as follows: wellbeing 2.34 (SD 0.96), problems/symptoms 2.21 (SD 0.82), functioning 1.31 (SD 0.71) and risk 0.28 (SD 0.46).

Mean values for the sample at both assessment times can be seen in Figure 2. The general trend in the data was towards reduction over time – indicating an improvement in CORE-OM scores in all domains. Statistical analysis confirmed the significance of this change between T1 and T2 (in all cases p<0.01).

In relation to the clinical cut-off values noted in section 3.6.4 above, when the mean scores for the sample at the baseline and follow-up assessments were multiplied by 10 the scores for the Full CORE Sample can be seen to have fallen from 15.69 to 9.07, a change of

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6.62 points. For men and women separately, the equivalent fall in scores was from 16.54 to 8.73 and 15.24 to 9.25 respectively, representing changes of 7.81 and 5.99. In each case the mean score fell from above the clinical population cut-off value of 10 before therapy to a mean score below 10 following therapy. It has been observed that an improvement of 5 or more points in the CORE-OM clinical score represents a reliable improvement and that a clinically significant improvement is a move from above the clinical cut-off to below it (cited in Mullin et al., 2006). By these criteria the improvement in CORE-OM scores for men and women who used the ESaC services was both reliable and clinically significant, as well as being statistically significant. However, these changes can also be analysed at the level of the individual, in terms of the actual numbers of clients reporting reliable and clinically significant improvement. This analysis indicated that 19 members of the Full CORE Sample (54%) made a reliable improvement between T1 and T2; 13 (37%) improved but not to the level of ‘reliable improvement’, and 3 (9%) deteriorated, though each of these scores fell by less than 1 point on the CORE-OM mean item scale.

3.8.2 CORE-OM results for each research siteThe CORE-OM mean item scores in each research site at baseline were 1.54 (SD 0.62) for Gateshead and 1.60 (SD 0.64) for London, a non-significant difference (t=-0.288; p=0.78). At the T2 assessment, though mean values had fallen significantly in each site (p<0.001 in each case), the difference between the sites was again non-significant (Gateshead mean=0.75, SD 0.51; London mean=1.08, SD 0.59; t=-1.790; p=0.083).

In Figure 3 the mean values are shown for each CORE-OM domain in relation to each research site at both the T1 and T2 assessments. As noted above, it is clear from this figure that levels of psychological distress measured by the CORE-OM domain scores were similar for each site at each assessment time. Reductions in the mean scores are evident in each site in all domains by the follow-up assessment, and these changes were statistically significant in all cases except for the very small reduction in risk for Gateshead. Overall, these results indicate significant improvements in sample members’ psychological wellbeing during treatment at each site offering the ESaC service.

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3.8.3 CORE-OM results for each genderFigure 4 shows the comparative results for male and female respondents in the Full CORE Sample at baseline and follow-up. The mean CORE-OM scores at both assessment times were very similar for both men and women, and within genders each was found to have improved significantly over the course of treatment (men: t=4.452; p=0.001; women: t=5.806; p<0.001).

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3.9 Summary of quantitative resultsIn summary, this section has reported a number of results from an analysis of the data provided by the Full CORE Sample at both the baseline and follow-up assessments. From this we conclude that:

Vision levels in the London site may have been somewhat poorer than the Gateshead site, but in each there was evidence of moderate visual impairment in the sample of service users.

There is strong evidence that prior to commencing therapy in the ESaC service, in each research site service users fell well within the clinical population in terms of the extent and nature of their psychological distress.

Levels of psychological distress in each research site improved significantly during the course of therapy. This result was not only statistically significant but, because of the extent of change and the general move from clinical population to non-clinical population, also reflects clinically significant and reliable improvement.

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4 Service users’ needs and expectations of the ESaC services

4.1 IntroductionAs with the CORE-OM data, we have Needs and Expectations Questionnaire (NEQ) data on a larger number of people at baseline (n=44) than at post-intervention (n=32). The questionnaires were usually administered and filled in by the counsellors, and the answers generally brief. However, although limited in its depth and scope, these ‘before and after’ data provide some useful insights into the kinds of needs that clients of the service have when they first start receiving counselling, how their assessment of those needs changes during the course of their counselling, and their views of what it is that is helpful about the service. The completed questionnaires were coded thematically, identifying common themes for each question and grouping the responses under these themes.

4.2 The baseline assessment of needs and expectations

The baseline questionnaire asks three main questions: what the individual’s main problems are; what changes in their life they want to happen; and what help they want from the service.

4.2.1 Main issuesPerhaps unsurprisingly, visual impairment itself is the most frequently mentioned issue (mentioned by 19 respondents). Comments include: ‘Loss issues regarding sight’, ‘Fear of deterioration of my eyesight’, ‘can’t accept eyes the way they are’, ‘seeing visions [due to Charles Bonnet syndrome] that upset me’ and ‘I would rather die than be blind’.

The next most commonly mentioned issue (12 respondents) is depression or low mood, often explicitly linked to visual impairment by the respondents e.g. ‘Depression because of constraints current eyesight imposes’, ‘feel sad and depressed all the time because I cannot accept my sight loss’, ‘always feeling frustrated and low because day is harder to get through with sight problems’. In some cases the depression is not explicitly linked to visual impairment – ‘feeling low and depressed, especially over the past year’. Although the data from these questionnaires is far too

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basic to interpret in much depth, it is clear from the clinical information collected for the Overall Sample that some of those referred to the service have pre-existing mental health problems that may be unrelated to their visual impairment.

Related to the feelings of depression, another commonly mentioned issue is anxiety: ‘anxiety symptoms – in unfamiliar places as well as at home’, I feel uncomfortable and very anxious about going out’, ‘worrying all the time that I’m not going to be ok and that I’m going to be left on my own’. These comments seem to link to another issue, that of isolation: ‘being on my own – I can’t handle it’, ‘feel like I have had to cope on my own with difficult problems’, ‘worrying all the time that I’m not going to be ok and that I’m going to be left on my own’. However, the reverse of this issue is the fear of dependency: ‘being dependent’, ‘fear of loss of independence’, ‘worried about becoming a burden on my relatives’.

For several participants, wanting someone to talk to and unburden themselves to is an important issue: ‘I feel I need someone to talk to. I don’t like burdening my friends with my problems’, ‘I would like someone to listen to me. I bottle things up’, ‘feeling not cared for/listened to’. A common theme here seems to be that people feel that they have not been able to talk about their problems to anyone else.

Other issues that come up are boredom and frustration: ‘get bored’, ‘coping with frustrations’, ‘always feeling frustrated and low because day is harder to get through with sight problems’.

Several participants mention relationship worries as a main issue: ‘difficult relationship with son’, ‘family relationships, and relationship to community as a whole – sight loss makes these issues even more difficult’, ‘anger/irritability in dealing with people’. As these quotes suggest, visual impairment may for some people be an additional factor that adds to existing relationship problems. Three participants highlight the way in which the feelings of loss associated with bereavement add to the feelings associated with visual impairment: ‘loss issues regarding sight, bereavement’, ‘not quite sunk in yet as regards my eyes, it has brought up my main problem of losing my daughter. It should have been me not her’ and ‘progressive loss of sight – coping with emotional impact…bereavement – loss of partner’.

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For some participants one of their main concerns is the impact of visual impairment on work and career plans: ’loss issues…life plans re. career etc’, ‘career goals feel difficult to achieve’, ‘progressive sight loss…impact on communication, work and relationships’, ‘recent diagnosis and don’t want to go back to school’.

Finally, five participants report referral by a rehabilitation worker as one of the main reasons they came to the service. In both sites the rehabilitation workers work within the Low Vision Service alongside the ESaC counsellors. This suggests that the counselling service is being accessed by people who might not actively seek counselling from primary care or other ‘mainstream’ sources, but rather are being brought into the service as a result of its being integrated within a low vision service.

4.2.2 Changes wantedRespondents offer a range of changes that they hope to achieve as a result of using the service. The most frequently mentioned is wanting to gain confidence, which seems to have both a practical and an emotional dimension: ‘more confident’, ‘confidence, social life again, self-esteem’, ‘I’d like to have the confidence to go out and do my shopping by myself’, ‘more confident and more able to manage some of the fears about the future’. Related to this is the wish to be able to cope with practicalities again – ‘be able to do all the little things I can’t do at the moment’, ‘assure self I can go different places by myself’.

The other key area that respondents identify as something they wish to change is the way they cope with feelings: ‘cope better with depressed feelings day-to-day’, ‘don’t want to feel so unhappy all the time’, ‘want to feel less upset and worried’, ‘understand what I can do to cope’. This links also to a sense of wanting to learn to accept their situation: ‘more accepting’, ‘get on with living my life and accept my sight loss if that is possible’, ‘come to terms with loss. Feel stronger, more positive, be able to ‘see’ a future’. These responses very much tie in to the responses to the first question.

Another issue is the desire to feel supported – ‘not feel so unsupported’, ‘feel like somebody cares’, ‘knowing there is somewhere else to gain support’. Again these link in to the feeling of isolation identified in response to question 1. Other issues mentioned include improving relationships, becoming less

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irritable, reducing anxiety symptoms and talking things through. Significantly, several participants state that they don’t know what they want from counselling.

4.2.3 Help wanted from the ESaCBy far the most commonly mentioned expectation that respondents had of their use of the service at baseline was simply being able to talk (mentioned by 73% (n=32) of the 44 participants for whom we have baseline data). Comments include ‘just the talking’, ‘opportunity to offload feelings’, ‘someone to talk and interact with, that’s the main thing’, ‘talking about it and trying to understand it more’, ‘space to talk about all the changes and challenges’, ‘to speak freely’, ‘just talking about things – not something I’ve done before’ and ‘somebody to talk to to help me realise I’m not doing things wrong’.

Linked to this, some participants specifically state that they want to gain understanding: ‘talking about it and trying to understand more’, ‘explore feelings about sight loss and how I cope’, ‘gaining new insight’, ‘speaking out loud is a way of working out internal thoughts’. Others focus more upon wanting to receive support and guidance – ‘support and encouragement’, ‘need someone to talk to and to know how to get support’, ‘some pointers on coping with low feelings’, ‘some support and guidance from someone who understands sight loss’. For some it is specifically the desire for an objective view point that it is important – ‘independent support’, ‘someone who gives you an unbiased opinion’, ‘talking to someone outside of family who has a detached opinion’, ‘I can open up completely without feeling I’m being judged’.

Other themes that emerge are the need for structure – ‘gets me out of the house doing something’; practical help – ‘advice on how to manage or if there are other services that could be helpful’; increased confidence – ‘confidence building’; and the desire to work on relationships – ‘opportunity to think about how my relationships work at the moment’. A few respondents are uncertain about what they want.

4.2.4 SummaryIt is clear, from the baseline questionnaire data, that service users bring with them a range of concerns and problems to the ESaC services, particularly fears about visual impairment and feelings of depression, but also fears about dependency and isolation,

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relationship issues and difficulties coping with bereavement. The main changes that participants report wanting are to gain confidence, to cope better emotionally and to be able to come to terms with their visual impairment. In terms of what participants say they want from the ESaC service, they overwhelmingly identify the need to talk, some more specifically to get support or to gain understanding through talking. Relatively few identify more specific ways in which they want to be helped by the ESaC service in their responses.

4.3 Post-intervention assessment of needs and expectations

The NEQ administered post-intervention is a separate questionnaire that is designed to follow on from the baseline questionnaire. It contains five questions that, except for one, are different to those in the baseline questionnaire.

4.3.1 Help wanted from the ESaC serviceThis is the only question that corresponds directly with the baseline questionnaire, so it is interesting to see how respondents’ views of what help they wanted from the service have changed between baseline and post-intervention. It is noticeable that, whereas responses to this question in the baseline questionnaire are fairly non-specific, in the post-intervention questionnaire respondents seem to have clearer and more specific views of the help that they were looking for from the service. Only 19% (n=6) of the 32 respondents for whom we have post-intervention data specify simply wanting to talk, compared with the 73% who give this as an answer at the baseline assessment.

What comes across most strongly from the post-intervention responses to this question is a noticeably more positive outlook from respondents. These more positive views can be organised around a number of related themes. Firstly, wanting to feel better: ‘wanted to feel better about myself’, ‘to get better’, ‘to get out of my sadness’, ‘to feel less anxious’. Secondly, to gain confidence: ‘feel more confident’, ‘I wanted confidence so I could get out of the house’, I wanted to gain my confidence to cope with others’, ‘to feel less afraid to go out, less isolated’. Thirdly, wanting to cope: ‘assistance in coping with my problems’, ‘help coping with my illness’, ‘cope with what is happening to me and what is going to happen to me because of my eyes’, ‘guidance and help on how to

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cope with being blind’. Fourthly, to make sense: ‘help me make sense of the situation I’m in’, ‘to help make sense of these things that are happening to me’, ‘bit of space to think about issues relating to my sight loss and how I was feeling about that’, ‘to make my ideas/thoughts a bit clearer to myself’, ‘to work out what’s in my mind and work it out to see if it’s ok’. Fifthly, to move on: ‘a bit of help with getting to terms with things’, ‘a bit of help so I can get on with my life’, ‘knowledge about how to support myself and get on with life’.

Several respondents again mention wanting support and reassurance – ‘someone to talk to, explain the problems I was having and seek advice’, ‘reassurance regarding life’, ‘some support and understanding’, ‘emotional support’, ‘some expert support/help’, ‘make sure I was on the right road’. Interestingly, more respondents also express uncertainty about what they wanted or expected from the service than they did at baseline, although instead of being simple responses like ‘not sure’ as they were at baseline, these responses tend to be more detailed retrospective reflections of their lack of awareness of what counselling involved: ‘I wasn’t sure. I hadn’t been to anything like this before’, ‘didn’t know what counselling was like’, ‘not sure what I really thought/needed’, ‘I didn’t know what to expect and felt puzzled but I thought I would give it a try’. These reflections are themselves interesting as they suggest not only that those who have been through counselling show a greater awareness and understanding of what counselling is for (as might be expected), but also because they perhaps indicate a shift forward in respondents’ thinking about their own situation.

4.3.2 Did the service meet needs?The post-intervention questionnaire includes a question about whether respondents felt the service met their needs. Again, responses to this question reflect a more positive outlook and a clearer understanding of how to address some of the specific problems that they have to face. Several people comment on the benefit they gained from talking things through: ‘I felt a lot better talking because I don’t talk to neighbours about what worries us’, ‘talking things through with counsellor, getting things out of my system’, ‘helped me to talk through things I couldn’t talk to anyone else about’, ‘I got what was inside out and had time to think about myself’, ‘talking through things does sometimes make the problem feel better’. Again, what comes across here is not simply talking,

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which is what comes across in the baseline data, but talking through things: there is a sense of catharsis, if not of resolution, through having talked.

Some respondents clearly display an awareness of their own altered thinking as a result of counselling: ‘you helped me to know it is all right to think for myself. I’m not so bothered now by other people’s opinions’, ‘this has helped me a lot. I have realised there is more to life than my illness’, ‘I can see things more clearly now, working them out more ‘sensibly’’, ‘providing unconditional, non-judgemental support but also challenging me to change my thinking as well’.

Another important theme is the value to respondents of the counsellors’ response: ‘counsellor’s kindness, patience, gave right answers’, ‘someone listened to me, gave me a different point of view’, ‘I found someone who listened to me’, ‘found the counsellor helpful, allowed me to express myself without interference, but made helpful comments’, ‘I felt as though someone cared’, ‘you listened which was the most important thing’. What comes through in these comments is the importance of the role of the listener. It is interesting to note the presence of the counsellor that comes across in the post-intervention data but not in the baseline data. This is of course to be expected, as the baseline data is collected in the first session when the client has had little opportunity to start to form a relationship with the counsellor. However, at the risk of over-interpreting the data, it could perhaps also be seen as evidence of a less introspective, more outward-looking attitude of mind.

There is a strong sense from responses to this question of respondents feeling better as a result of counselling: ‘better outlook on life, more positive’, ‘I felt cool and relaxed and confident’, ‘I feel more settled in myself’, ‘I feel more relaxed, rather than worried or tense’, ‘the service has helped a lot’. One respondent refers to the lifting of suicidal thoughts: ‘felt more motivated and didn’t have suicidal thoughts/feelings during my time with the counsellor’. Another respondent specifically identifies the benefit of having their feelings normalised – ‘I was given to understand that most of the things happening to me were normal and human’.

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Several respondents describe having learned to think in terms of making small steps instead of being overwhelmed by the problems they face – ‘a way of making use of reasonable choices’, ‘having small goals that were easy to achieve allowed me to have a sense of making progress’, ‘I’ve learned to calm down, I’m not so desperate to get to the ‘end result’ – accept things as they are more and accept a bit better what I can and can’t do and when I need help’.

Two responses specifically highlight the value of the ESaC service being located within an integrated low vision service: ‘coming through the resource centre – seeing/buying gadgets’ and ‘in combination with other services – many things put together have helped – rehab, resource centre, meeting others who are blind, seeing blind people working etc.’.

The responses to this question, as to others are overwhelmingly positive. However, some respondents report having found the service only helpful within limits, in the context of ongoing problems and support needs: ‘has met need to some extent but problem of not falling into ‘sight category’’ (i.e. is not eligible for registration), ‘my needs to express all this were met, but the problems are ongoing so can never be totally eliminated’, ‘issues are long-standing and feel need for ongoing support’.

4.3.3 Helpful aspects of the serviceThe responses to this question also reflect a more positive outlook than is present in the baseline questionnaire data. Respondents identify a range of helpful aspects of the service. One of the most frequent themes is the positive feelings that respondents had whilst using the service: ‘one day I was talking to you and I felt relieved when I got home. I felt relaxed’, ‘I had moments of feeling happy while I was using the service’, ‘I wish I could have this service on a long term basis, have the atmosphere of the people I talked to’, There were times when I was at my lowest ebb when you [counsellor] came round and I felt much better. Visits were something to look forward to’. Again the theme of being able to talk occurs frequently, as does being listened to: ‘someone listened to me’, ‘being heard, listened to’, ‘feeling of being heard and genuineness’, ‘knowing someone is genuine in their support’. Again, the shift in emphasis from just

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being able to talk at baseline to the importance of being actively listened to at post-intervention seems to be significant.

Another key theme is changed or clearer thinking: ‘putting my problems into perspective, not bitter or angry now’, ‘now looking at things differently, less negative’, ‘I can see my views on things more clearly now. I can analyse my situation where before I couldn’t’, ‘sessions made me reason with myself, think about the future and look forward’, ‘space to think and be observant of own process – understanding why things were happening’. Similarly, respondents report being encouraged to be less self-critical and demanding: ‘counsellor suggested I slow down and not have such high expectations of myself’, ‘thinking that it might be ok to ask for help sometimes and not get everything done immediately’.

4.3.4 Things that could be betterThe post-intervention questionnaire was also designed to probe respondents about features of the service that could be improved. The responses to this question indicate high levels of satisfaction with the service. A significant proportion of respondents stated that they were completely satisfied with the service and that nothing could be improved. After this, the only significant issue that is identified is the wish that a larger number of sessions could be offered, with five respondents expressing this view. This comment tends to reinforce the sense that the services are satisfactorily fulfilling an unmet need in those who are able to access them. Other comments made by individual respondents include wanting more information on other services, the suggestion of offering group sessions, a comment on the difficulty of accessing the centre, and the possibility of offering home visits.

4.3.5 Other commentsThe positive responses to the previous question are again reinforced in the final ‘other comments’ question on the post-intervention questionnaire. Responses to this question are in the main appreciative comments about the services and the counsellors. Two common themes emerge from the responses. One is respondents hoping the service continues: ‘importance of raising awareness about service so other people know it is available’, ‘I hope this service remains as it is a valuable service’, ‘don’t lose this service for visually impaired people’, ‘be more visible and publish’. The other common theme to emerge is the value of the services being embedded within low vision services,

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enabling people to gain access to other services: ‘thank you for referring me on to Talk and Support [RNIB’s telephone peer support]’, ‘helped me access other resources – you felt you were part of a bigger picture’, ‘coming to the service at RNIB was helpful because I got to see everything that was going on elsewhere in RNIB’. A final suggestion, made by two respondents is that a group might be helpful.

4.4 SummaryAs qualitative data the NEQ data is limited, firstly because it takes the form of brief notes, and secondly because those notes have, for the most part, been made by the counsellors themselves. Whilst there is no suggestion that the counsellors have misrepresented the views of the respondents, they are nonetheless (necessarily) acting as mediators in the research process, which must be seen as having some effect on the nature of the data. The fact that the counsellors themselves are being required to note down their own clients’ views of the service that they themselves are providing must be seen as being likely to have some effect on the views that are expressed, or at least on the way in which they are expressed.

Despite these limitations, the NEQ data are of value both in validating the CORE-OM data, and in providing a broad base for supporting the findings from the qualitative interview data to be reported in the next section. In terms of the CORE-OM findings, the NEQ data can be seen to clearly corroborate the two key findings from the CORE: that service user participants in the study represent a clinical population at baseline assessment and that by post-intervention they have shown significant improvement in well-being.

At baseline the two major issues that participants report wanting help with are visual impairment and depression or low mood, with nearly a third of participants explicitly reporting feelings of depression or low mood and others reporting feelings of anxiety. This corroborates the findings from the CORE-OM baseline data, which show that the level of emotional well-being in study participants falls above the clinical cut-off, that is that they represent a clinical population. Participants also report a range of other issues that might be expected from this population, such as fears about dependency and isolation, difficulties coping with

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bereavement and relationship difficulties. Some clearly state that one of the main reasons they came to the counselling service was because they were referred by their rehabilitation worker, suggesting that the service may draw in people with a need for counselling who might not otherwise seek help.

There are some fairly clear changes represented in the data from baseline to post-intervention, which parallel the improvement in CORE scores. Most notably there is evidence that by the time they have completed their course of counselling clients have a more positive attitude and outlook, along with more clarity of understanding about how they can begin to address the problems associated with their visual impairment. This is reflected particularly in what participants say they want from the counselling service. At baseline, participants overwhelmingly report that they simply want to talk. However by post-intervention assessment, when asked to report retrospectively what they wanted from the service, many fewer give just wanting to talk as a response, but instead express much more specific views about what they wanted. These responses also reflect a much more positive outlook, with participants reporting that they wanted to feel better, to gain confidence, to cope with their visual impairment better, to make sense of what is happening to them and to move forwards in their lives.

This same improvement in outlook is reflected in participants’ responses to being asked whether the service met their needs and what they found most helpful about the service. For both questions, being able to talk things through with someone who listens and understands is an important theme, with some respondents clearly reporting awareness of a change in their own thinking and outlook as a result of counselling. Another important theme is the value to participants of the counsellors’ own response to them, with a much greater awareness of the role of the counsellor as listener than in the baseline data. Although this needs to be interpreted with caution, it can perhaps be seen as evidence of a less introspective, more outward-looking attitude of mind.

The final two questions on the post-intervention questionnaire - ‘what could be done better?’ and ‘any other comments’ both elicit overwhelmingly positive responses. The only improvement suggested is for the course of counselling offered to be longer.

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The two themes that emerge from the ‘other comments’ question are the wish for the service to continue and the value of the counselling being embedded within low vision services.

To sum up, although of relatively limited value as qualitative data in its own right, the NEQ data is of significant value in validating and thus strengthening the findings from the CORE-OM data. What they show together is firstly, that clients of the ESaC services display a clear level of clinical need when they first attend for counselling; and secondly, that by the time their counselling ends their emotional well-being has improved significantly. On their own, the findings from the CORE data demonstrate that this improvement has taken place and suggest the likelihood of a link between that improvement and the ESaC intervention. The findings from the NEQ data enable us to go further in the claims that we can make for the ESaC intervention, by indicating some of the changes in thinking and outlook that may account for the improvement in emotional well-being and also by making a stronger causal link between the intervention and that improvement.

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5 Findings from the Qualitative Interviews

5.1 Introduction The aim of the interviews with service users and service providers was to generate a more in-depth picture of the ESaC services by exploring how they are experienced and viewed by those who use them and those who work in or with them. The interviews also provide us with some rich contextual data, exploring aspects of the lived experience of visual impairment and its emotional impact, from the perspective of both people who lose their sight and those whose role it is to work with them. The findings from these interviews are presented in such a way as to allow people’s experiences and views of the ESaC services to be understood in the broader context of the experience of living with a visual impairment. The findings from the service user and service provider interviews are incorporated together to allow the different perspectives and insights to be considered alongside each other.

We start off by looking in a little more detail at the ESaC services, primarily from the perspective of the counsellors themselves: how they work, the model of counselling used and some of the key issues for the services. We then move on to look at the ESaC services from a wider organisational perspective, looking at how the counselling services fit into the integrated low vision services within which they are based, and at the referral process. We then shift our focus to look at the experience of living with visual impairment and at the role played by the ESaC services in helping to address some of the main issues facing people who use the services. Finally we report on the specific ways in which service users have found the ESaC services helpful.

5.2 The ESaC way of working

5.2.1 The model of counsellingNo single model of counselling was adopted when the ESaC pilot project was first conceived. Although the counsellors who have been involved in the project have come from different professional backgrounds there are distinct similarities in the philosophical base from which they work, and thus in the practical focus of their work:

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[I am] really [a humanistic] psychologist, which I think is particularly relevant to this field, unlike other models, and other philosophies because of its focus on, or recognition of anxiety and embodiment in particular, social context, life context, and the kind of limitations of living or the difficulties of living rather than kind of an intra-psychic perspective like maybe psychoanalysis or something. (Counsellor, London (2))

As a humanistic practitioner I have certain beliefs about people. I believe that people have an innate capacity for growth, that they will do their best in whatever circumstances they find themselves (…) I believe that people are their own experts. I can bring my clinical acumen and my experience to their service, but I’m not a superior expert being who is kind of providing them with the answers. Really I work with them for them to get in touch with their own answers and explore what has been getting in the way of those. So it’s much more of a collaborative endeavour, rather than me being the kind of distant expert. (Counsellor, Gateshead)

All three counsellors who have worked in the services describe themselves as working within a humanistic model of counselling, which contrasts with psychoanalytic and behaviourist models which tend to be overly deterministic. The humanistic approach contains a more positive view of human nature at its core, emphasising choices, individual responsibility and the capacity for personal growth (Joseph, 2010). What this approach means in practice for the ESaC model is that it focuses on the capacity of the individual for emotional recovery and growth, relying on the expertise of the counsellors not to provide specialist theoretical insight into their experience but to guide the individual so that they might tap into their own internal psychological resources.

5.2.2 Flexibility and engagementWhat comes across strongly from the interviews with the counsellors is the need for a flexible approach which aims to engage people:

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...my sense of how things have been, it’s about engagement really. Engagement and flexibility (Counsellor, London (1))

This flexibility may involve going further than would normally be expected of a counsellor to engage clients, for instance by following up clients who do not arrive for arranged sessions:

…one client I see said to me instantly you know - we had a phone contact a few times and he kind of DNAd and we had quite an open kind of connection on the phone and discussion and then he turned up the next time, and I asked him what made him come you know as opposed to the last three failed attempts, and he said well, I just felt like I could relate to you. And, from that point onwards that was it… (Counsellor, London (2))

A flexible approach has also been adopted, to varying degree by the different counsellors, to home visits:

I’ve done quite a lot of them (…) it’s part of this engagement, this kind of like if you go round there, people are more likely to kind of engage better than if you don’t. So I’ve got to be doing that, it’s a bit of an issue, it’s kind of one of those issues really, how flexible are you going to be, in order to engage somebody. (…) (Counsellor, London (1))

The general view seems to be that home visits are therapeutically and practically problematic, and that they should only be undertaken when absolutely necessary:

I find home visits very problematic, psychologically speaking, clinically speaking, but also of course they’re like a huge drain on the service. So practically they’re difficult, however of course, you know there’s the reality of someone who really can’t access the service. I have done home visits I’ve done about five or so, but don’t offer them unless I kind of can really hear that someone is not able to make it. (Counsellor, London (2))

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I think apart from the time consideration for me it’s much more useful to see somebody in a neutral space, it’s like a new space for them which is kind of symbolic of that kind of opportunity that they’re opening up for themselves in the counselling. I find home visits harder in terms of maintaining therapeutic boundaries, you know there might be neighbours wandering in to sort of scope me out, and check is this person all right, who’s visiting Flo this afternoon… (Counsellor, Gateshead)

There is also a need for flexibility in the level at which the counsellors work, that is whether they focus on practical, ‘here and now’ problems, or whether they work on more deep-rooted issues that may go beyond the immediate vision-related issues that brought them to the service:

I think it’s very difficult to completely separate off the sight loss issues from how they’ve been in the rest of their lives up to that point, previous challenges that they’ve had in their lives. And, I think that’s, that is very much therapeutically the case working with loss, because I think any loss inevitably resonates with previous losses (…) I don’t think it’s terribly useful to say, you know, no I don’t want to talk about any of that, you know if it’s within kind of the ethical professional remit of the sort of counselling work that I would do within my professional competency then I’ll work with the person as a whole and everything that they’re bringing. It depends what the person wants really, some people want much more kind of here and there work to, as regard coping skills, management strategies, how to deal with their anxiety, but again that can bring up previous issues (…) seeming emotional support in the beginning can progress into much deeper issues and much more kind of sort of, a profound level of working. (Counsellor, Gateshead)

It is clear that the flexible approach needed in this work is quite different to that adopted in generic primary care counselling:

…the contrast to primary care is absolutely enormous. (…) If you take primary care as sort of like the way a

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lot of counselling services kind of work, you have massive demand, enormous waiting lists, and people who sort of turn up kind of, quite keen to work. You have to work quite hard usually to get some counselling, either they can’t get referred, they’ve had to wait a long time, or you know, and the waiting lists are so long that for instance you’d send them, you send everybody an opt in letter, everyone who doesn’t opt in you just say clearly you don’t want counselling then (…) There are some people for whom that model still works, so there’s a few people that come through that it’s like yes I want counselling (…) But, for quite a lot of people, I ended up sort of adapting my approach so now I’d tend to say I’m the counsellor here, this person has suggested you might like someone to talk to at the moment, and sort of take it from there and keep people on the phone a bit longer, sort of try, to sort of give them a sense of what it might be like to talk to me and that sort of thing, so you’re giving somebody an experience of something rather than kind of asking them to engage. (Counsellor, London (1))

This flexibility relates also to the number of sessions the service is able to offer to people:

I offer an initial six sessions and sometimes when people are a little bit tentative about committing and engaging that’s enough, even if I have an idea that more sessions is going to be useful for them, I’ll still offer six or sometimes as well if there’s somebody who I think has real issues with self esteem and entitlement and whether they’re, you know, worthy of having this support, I’ll immediately offer eight or twelve because that’s, you know a supportive thing for them if I feel that they’re in a position to hear that and accept that. But we have worked over twelve, certainly, if there’s the feeling that that is going to be useful, for the client, especially when the service hasn’t been running at full capacity, if - you know my priority has been the client needs, and I aim for it to be a bespoke service if you like, which is, is a very

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nice thing to be able to do compared say to primary care work... (Counsellor, Gateshead)

One of the distinctive features of the ESaC services that distinguish them from generic primary care counselling for the counsellors is being able to understand and work with people at different stages of the ‘sight loss journey’:

...there’s something about the pathway, and where people then get support and I don’t necessarily think it’s particular to sight loss, but I think it’s particular probably more to chronic health, disability, conditions there’s something about recognising that these experiences need support and have a process, which allow people to adjust. And the idea that people can be discharged and then kind of enter the mental health service through their GP is just ridiculous I think especially nowadays when thresholds are as they are and when at that point it would probably usually be too late when there could have been preventative work done really constructively or holding people, and a lot of times kind of normalising the experience you know just validating where somebody is, looking at support systems, and continuing kind of a more of a light touch support throughout the journey, rather than you know wait until someone enters through a mental health service which I think the mental health services, you know a GP wouldn’t necessarily be well placed to attend to these things. (Counsellor, London (2))

As we will go on to see, the need for the ESaC services to be accessible to people at all stages of the visual impairment journey is something that has come to be seen as a particularly important feature of the services. It is a feature that marks them out as distinctively different from generic counselling services offered through primary care. Alongside this is the need for the services to be flexible in the way that they work with clients and in the ways that they seek to engage individuals who might not be immediately inclined to take up counselling, but who might gain significantly from it.

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5.2.3 The dual model of emotional support and counsellingIn setting up the ESaC model as one which provides both counselling and emotional support, the need for flexibility was clearly recognised from the outset. This in itself distinguishes the service from ‘mainstream’ NHS counselling. Clients who access primary care counselling services are likely to have actively sought formal counselling, and will be offered a set (and limited) number of sessions, with therapeutic goals discussed and agreed at the outset. Whilst some of the clients seen in the ESaC services fall into this category, many others do not. The flexible approach of engaging clients who may not be readily inclined to engage with a formal counselling service means that many clients are first of all engaged with at the level of emotional support. This may take place in a screening phone call by the counsellor and go no further than this, or it may involve the client agreeing to attend a number of sessions where the remit is only one of emotional support, not formal counselling. Others may begin by engaging only at the level of emotional support but the intervention may evolve into a more formal counselling contract over a number of sessions. It may also be that an individual who starts off receiving formal counselling may move to having less formal emotional support, perhaps due to circumstances changing:

I have offered telephone emotional support to somebody who initially began seeing me for counselling, became physically ill, and managed to keep the contact over the phone, and found that very useful. (Counsellor, Gateshead)

Although the distinction between the two elements of the ESaC model has been discussed and documented as part of the pilot project, it is difficult to entirely separate emotional support from counselling. For one thing, counselling itself must involve a level of emotional support for it to be successful. There are also likely to be differences between individual counsellors in the way in which the distinction between the two modes of intervention is drawn and operationalised.

It is worth commenting here upon the difference between the two sites in the numbers of emotional support and counselling clients which was reported on in section 3.7.1. Only 36% of clients in Gateshead are documented as receiving counselling, the

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remainder all received emotional support, whereas in London 63% received counselling, 25% emotional support and 13% a combination of both. Although it is possible that these differences could be explained by differences in the levels of pre-existing mental health problems in service users in the two sites, differences in the way the individual counsellors operationalise the dual model of emotional support and counselling may also be a possible factor.

Because of the small number of counsellors involved in this evaluation, it is difficult to make any useful generalisations here about the way in which the dual model has been operationalised across the two ESaC sites. In order to develop further insights into how the dual model is or should be operationalised we suggest that further investigation is needed, ideally across a larger number of sites, with a larger number of counsellors.

5.3 Embedding the ESaC services within low vision services

5.3.1 Emotional support in low vision workThe extent to which emotional support has been, and continues to be, a fundamental part of the job of all those working in low vision services is a theme that comes across very strongly in the service provider interviews. This reflects findings reported elsewhere (Fenwick et al., 2009; McBride, 2005). From the perspective of other low vision service providers, at least, the need for an emotional support and counselling component to be included in an integrated low vision service is clear, and the development of the ESaC services has filled a gap:

…before the service started, in the absence of it, I felt that I was doing you know my own level of, or my own sort of ability to empathise (...) I’d call it reassurance but ultimately it’s emotional support (…) there were times when I felt I’d really succeeded in doing that, and the next day a patient would be in the resource centre in tears, and the reality is that on the day you can really feel that you’re doing something (...) but then they’ve returned to their own world, their own lives, their home environment and actually that boost that they’ve got for the two hours they’ve been here

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has not really been reflected in the frustrations they feel at home… (Optometrist, London)

...part of our job is kind of, even in general practice you have got to try and work out what people want, what people’s needs are, so I think that we are pretty probably all fairly tuned in to making that kind of assessment. I think that the thing that we have kind of decided is that somebody can be perfectly upbeat and seem fine when they’re here in the clinic, but then they may not be so good when they go home… (Optometrist, Gateshead)

These quotes illustrate the way in which emotional support needs present themselves in all low vision work but they also highlight the limits of the emotional support that low vision workers are able to provide. The role of optometrists, rehabilitation workers and social workers is to find practical solutions to the problems that people are faced with as a result of becoming visually impaired. The emotional support that low vision workers are able to provide as part of this process can help the individual to feel better in the short term, as they are helped to find solutions to particular difficulties. This differs from the kind of support that trained counsellors can provide, even at the level of emotional support rather than counselling: the counsellor’s role is not to find solutions but, through the secure base of the counselling relationship, to enable the individual to tap into their own psychological resources to work through their own difficulties. Thus, although the emotional support provided by low vision workers is valuable in its own right, the kind of support provided by the ESaC counsellors is much more therapeutically focused.

Although counselling itself is not solution-focused, the ESaC services clearly have an important role to play in enabling people to make better use of other elements of the integrated low vision services:

…if you’re not in the right frame of mind, if you’re not receptive to people coming in and helping, it’s useless so we have got to get you on an emotional level before we can do the practical rehabilitation. (Social Worker, Gateshead)

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One particular area in which the ESaC counsellors may have a direct impact on the work of other low vision workers is in helping people to prepare themselves to learn to use a white cane, as this rehabilitation worker explains:

Trying to decide when and how to feed into the emotional support service can be difficult. But it can be quite useful because if you’re going to try and do some rehabilitation work with someone you have got to have somebody in the right frame of mind to actually accept that sort of approach. So if you, to put it crudely, if you’re going to start working with someone and saying well, we could do white cane work with you, learning to use a cane, not necessarily is someone ready to accept having the label of having a white cane or something of that nature. So that’s quite a sort of common sort of juggling act to try and find a balance. (Rehabilitation worker, London)

Accepting the use of a device which marks you out as different, and perhaps vulnerable, can be a big psychological challenge, requiring the individual to address not only their own fears and insecurities, but also to face stigmatising social attitudes (Heine & Browning, 2004). This dilemma is illustrated by one individual who explains that she is finally at a stage where she is ready to start learning to use a white cane, having resisted it for many years:

I refused to learn long cane about five years ago, something like that, because I didn’t want to be seen with a long cane. (…) It’s difficult I’m not going to say it’s easy, but I’m going to just not care about what other people think or say, I’m just going to go ahead and learn because that’s going to make my life improve. (GF3)

For this individual, accepting the value of learning to use a white cane represents a major step in coming to terms with her visual impairment, as she sees the challenge of overcoming her fear of stigma and discrimination as being a price worth paying for the increased independence that she hopes using a white cane will bring her.

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One of the London-based counsellors identifies working more closely with rehabilitation workers in supporting individuals to learn to use a white cane as an area in which the ESaC services could be made more effective:

I think there are just things that I thought would make it a stronger service, and in that respect also when a rehab worker is working with a client who is finding it particularly difficult, maybe in cane training or something, that there’s a way for us to feed back a bit more, and you know support the client more holistically. (…) Having said that I think [counsellor G] said that’s something that happens quite naturally in Gateshead differently to here and that might be because they’re all under one roof, whereas we’re not. (Counsellor, London (2))

The counsellor here highlights one important organisational difference between the low vision services in Gateshead in London: in Gateshead the rehabilitation workers are employed by the organisation itself as part of the low vision service, whereas in London they are employed by the two local authorities, and only contracted to work in the low vision service on days when the low vision clinic is operating. Although only one example, work around white cane use is an area in which there is clearly great potential value in a more fully integrated approach to low vision work, involving counsellors working with the service user and also with the other low vision workers. This brings with it certain challenges, particularly to the quite clearly boundaried way in which counsellors work, preserving the confidentiality of the client/counsellor relationship. However, these issues are clearly not insurmountable and have already been negotiated within the working practices of the ESaC services.

5.3.2 The referral processThe interviews with service providers were particularly useful in exploring aspects of the referral process, offering insights into how the process works, and into how low vision service staff have worked collaboratively with the counsellors to promote the ESaC services. The largest proportion of referrals into the ESaC services has come from within the Low Vision Services (66%). As has already been discussed, there is an awareness of the emotional support needs of clients amongst Low Vision staff, and most of

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them make informal assessments of clients’ emotional support needs as part of their work. If they feel that an individual would benefit from the ESaC service they will introduce the idea of the service to them, in order that they can refer them on to it. Some of the service users interviewed report having been referred to the counsellor via other LVS staff. This individual, for example, had come to the ESaC service as a result of attending the LVS for a replacement magnifier:

My sight wasn’t this bad then, and then I lost the magnifying glass and that’s how I went back again [to RNIB LVS], and that’s how I was booked for the counsellor, through questioning and things I was offered the counselling and if I’m interested. And that was the year my husband died, so this was last year… (LF2)

Another individual who reports having received great benefit from the ESaC service, describes how her referral to the service came about opportunistically through contact with the LVS rehabilitation worker:

There was a guy called [xxx] from the Sight Service at Gateshead (…) and he came to do like a visual, I don’t know what the name of the course was, it was a course, it was to make you aware of what kind of equipments are available to help you day to day like microwaves, walking sticks and colour stuff (…) and I was so sad, and I was discussing this with him and I started talking to him, look this is what’s happening to me and he discusses like problems with you, what you’re going through losing sight and things like that and I think he realised then that I needed extra help and then he says ‘Well I’ve got this lady, do you want to talk to her?’. So I said ‘yes’ and he referred me to [counsellor]… (GF3)

In some cases, like the two quoted above, the individual’s need for and openness to the idea of counselling is quite apparent, even though the referral may have come about opportunistically. However, in other cases it is clear that LVS staff are more proactive, often working hard to ensure that they maximise the

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chance that an individual whom they feel will benefit from the service will agree to a referral or initial screening call:

…during the course of this project what I’ve sort of tried to align is an assessment on my own personal feeling of what then that patient’s needs are, and then sort of mention the emotional support service, either early on in the assessment and build on it, or at the end without upsetting that service user, because you know, it’s kind of getting to know how far to push the conversation, so there will be times when it’s very, very obvious that there’s a need, and so you’ll sort of talk about (…) or there will be other times when you know it’s not that obvious but it will emerge slowly, but then at the end it’s strikingly obvious but then you don’t want to push it too far because you don’t want to kind of you know, offset that level really. And there are other times when there’s a real reluctance, to it, if you mention it early on, but then you build it up and by the end you’ve sort of got the acceptance of a phone, of a screening call… (Optometrist, London)

This may involve them in developing strategies that ‘normalise’ the idea of the ESaC service to people who might be resistant to the idea of receiving counselling if it was presented to them directly:

…without trying to con people, obviously we just say to them, what I say to them is, we have a lady here who follows up your appointment, because they get a follow-up from rehab anyway, so I say to them right I’m finished with you now but [rehabilitation worker] or whoever it is is going to come and see you at six weeks to see how you’re getting on with your magnifiers and how you’re coping. And we also have a lady called [counsellor] who just gives you a ring to see how you are in yourself and how you’re getting on personally, not with your magnifiers, are you ok if she gives you a ring in a week or two, and the vast majority of people say yes. In fact they’ve all said yes to me. (Optometrist, Gateshead)

I start off with getting them to half agree with me about the pressures in the first place, and sort of lead

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in to there’s a lady who could talk to you about this, so you know - I don’t know what my spiel might be, it varies with each person but you know I say well you’re looking a bit tense Ida, you know, you don’t seem comfortable with all this, it’s been a lot hasn’t it, have you had some problems with this. It can be difficult to talk to people about it can’t it, again you just, it’s difficult and you don’t want to worry your daughter (…) there’s someone who could talk to you if you like, now she’s a very nice lady who’s based down in RNIB, and all she does is, her job is to sort of talk to people about how they feel about things and the emotional aspect to it, because it has a heck of a lot of impact. And that’s how you spiel it. Not, would you like to see a counsellor. (Rehabilitation worker, London)

There is also evidence from the service user interviews that some people have had the idea of seeing the counsellor introduced to them in an indirect way:

I was having an eye test at the RNIB in the [optometry] department there, because they’ve got their own department and it was the lady, what was she called who did my eyes? I think she and [counsellor] work quite closely with one other anyway being on the same corridor and I think she just knew that [counsellor] was involved with something and asked would I like to participate in it (…) so I think it was just a case of, the timing of my ophthalmology appointment coincided with [counsellor] needing people, because there’s always something that you’re roped in for with the blind agencies. (LF3)

Although this individual knew that she was seeing a counsellor, she seems to suggest that the service was introduced to her not in terms of the possibility of the service helping to address her emotional needs, but in terms of her ‘participation’ (presumably in the evaluation) helping the service.

Although this indirect method of introducing the service to people is one that the counsellors would not normally advocate, there has been recognition of the need to work in this way:

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…in a normal service I’d be saying to people look if you, if you haven’t discussed this quite carefully with the client and they’re quite clear that they want counselling then don’t refer them. Whereas you’re more kind of saying why don’t you just sort of ask them if they’d like someone to talk to, which is different so there might be some confused messages there as well… (Counsellor, London (1))

It should be said that by the time of writing (12 months after the service provider interviews were undertaken) the approach taken in the London service to introducing the counselling service to clients had been adjusted somewhat. Instead of the low vision worker deciding whether to introduce the idea of the counselling service to a client based on their assessment of whether the individual needs referring, the ESaC counsellor now encourages them to introduce the service to every client using a generalised, third person approach in order to normalise the experience of emotional distress associated with visual impairment. This is reported by the London counsellor as being an important change as it avoids the possibility of clients feeling that they ought to agree to see the counsellor simply because their low vision worker has suggested it. This is an aspect of the model that could benefit from further clarification and formalisation if the ESaC service is to be replicated elsewhere.

5.3.3 Screening callsThe screening call system referred to in the previous section was introduced some months into the life of the project as a method of trying to generate more referrals into the services. Where an individual attends a routine low vision service appointment, a member of LVS staff will ask them if they would mind receiving a follow-up phone call. If they give their verbal consent to this, the ESaC counsellor will then phone the individual, with a view to finding out how they are, letting them know about the existence of the counselling service, and, if appropriate, to make an arrangement for further contact. This seems to have been a successful innovation that fits into the low vision service way of working:

…when I check people’s details I ask them if they mind if we, if [counsellor] gives them a call just to see

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how they’re getting on in general and not necessarily about their eye sight, and I’ve not had anyone say no, so far. Everyone’s said yes that’s fine. (…) I guess it’s a more indirect way rather than someone saying to you, do you want counselling. Because I guess there’s still a bit of stigma attached to it with some people. It’s a more gentle approach… (Receptionist, London)

…basically the idea is everybody gets an introductory phone call from [counsellor] more or less, and then you know at least we’ve had some contact even if they don’t feel they need, or don’t agree to further emotional support they’ve had that conversation with [counsellor] and therefore it’s easier for them to pick up the phone and make contact again, with a known person rather than unknown. And I think that’s been working reasonably well. (Optometrist, Gateshead)

This is a system that is also working well for the counsellors:

…I think the thing in this service has been the difficulty in getting referrals and communicating about the service and what it is, and what it isn’t, I think if I’m making the screening call, it just allows me to hear all kinds of things, and attend to them maybe differently than someone else might. (Counsellor, London (2))

…one of the ways that we do do that quite well that seems to be working well is with the routine phone calls, following the low vision appointments. So, how often people are seen in low vision I think it’s typically every 2 years, someone might correct me if I’m wrong there, so that’s a way of keeping tabs on people and seeing how people present in the low vision appointment… (Counsellor, Gateshead)

Although the screening call system seems to have fitted well into the ESaC way of working, and is seen to have been helpful, it has only been responsible for a relatively small proportion of referrals to the service (7%). Despite this, it is a strategy that is nonetheless clearly felt to be worthwhile. Not only does it serve to alert people to the existence of the service who may, in the future,

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feel the need to access it, but the screening call itself allows the counsellors to provide some ‘light touch’ emotional support over the phone. However, once the ESaC services are running at full capacity the screening call system is an element of the counsellors’ work which it might not be possible to prioritise. At the time of reporting, the London counsellor was only undertaking screening calls as time permitted, and consideration was being given to the possibility of a trained volunteer taking on this role in the future.

5.3.4 Developing referral ratesIn planning the ESaC pilot project it was anticipated that there was a high level of unmet need for the service and that a waiting list might be generated. In the event, however, rates of referrals at both sites were slower to develop than anticipated. As well as having a knock-on effect on recruitment of service user participants to the evaluation, it has also meant that those involved in the project, particularly the counsellors, have had to put considerable time and effort into promoting the service and generating referrals. As reported in section 3.1, referral rates to the service over the life of the pilot project have in fact been relatively healthy, although both sites still report ebbs and flows in referrals:

I’ve been pretty near capacity most of the time. This is the first time now where I’m kind of seeing, oh this is a lull because there aren’t any referrals in my in-tray and I suspect because most services would slow now, August was always like that (…) so fine, this is probably going to be a quiet month, but I hope that it picks up again, but I don’t know. (…) So I think there’s just a need to keep up the pace of referral you know. (Counsellor, London (2))

It’s been very kind of mysterious for me, the ebbs and flows in referral numbers, I mean one month there might be 5 or 6 referrals another month none (…) We’re on course for - in terms of the project - a relatively busy month this month, for referrals, maybe it’s simply that there’s a kind of a slow pick up in terms of general awareness from different agencies, that we’re here, the feedback from people maybe who have received the service and found it good, certainly I think that has happened in-house, where people are

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now feeding back into other teams that they’ve received my service and they’ve found it useful or maybe spoken to their peers, so, maybe it’s just part of the development of the project at this stage that it’s kind of become more embedded if you like in the local agencies and services. (Counsellor, Gateshead)

There is clearly an understanding amongst those working in the services that work to develop referrals must be ongoing:

I don’t think we can ever be complacent and think that everybody knows that the service is there, so it’s about making sure that we reinforce the fact that that service is there all the time. (Chief Executive, Gateshead)

…you need to have a good referral base and setting it up takes, I think takes quite a lot of time and continues to take time. The thing is people move around and change jobs, I think as a voluntary service, a voluntary sector service, those are changing all the time so I think this idea that you kind of link in once and that’s it, or you know it’s like, it could be a full time job, in any service to be continually doing the outreach and getting your referrals in. (Counsellor, London (2))

One potential referral source that has been identified as important during the services’ development is GPs. However, very few (2%) referrals come from this source:

We don’t, I haven’t had a single GP referral. (…) GPs I think are notoriously impenetrable, and yet I think in my role I don’t have the capacity to do that piece of work… (Counsellor, London (2))

The availability of generic counselling services through primary care may be a contributory factor:

The GPs would probably be looking at their own counselling services, the generic counselling services, and not seeing any need for anything else. (Chief Executive, Gateshead)

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Referral rates into the ESaC services even from within the Low Vision Services have needed time to develop, particularly in London:

…what I think I’d kind of anticipated or was anticipating at the beginning of the project was that there would be, and what everyone was telling me was, oh there will be loads of referrals, from the rehab workers, and the optoms will just make loads and loads of these referrals, and it’s not really happened. You know they do make referrals, again that has been a relationship that I’ve kind of had to work on quite a lot and keep reminding them that I’m here and trying to sort of think of new and innovative ways of sort of making them aware of what I can do. (Counsellor, London (1))

One reason for the lower than anticipated rates of referral from low vision staff, particularly from optometrists who have only provided 5% of all referrals, is offered by a low vision service optometrist:

…often we’ll provide that level of support on the day, to the point where people will feel really good, within the scale of that 2 hours and so they’ll decline the service, or we’ll feel that they’re quite happy they don’t need the service because we’re quite upbeat and you know, this is just my personal account of it. (...) I often feel am I doing too much of that emotional support myself, so that the numbers are not coming through but the need is there, it’s just that on the day I’m filling in the gap but then I don’t know what the impact is the next day or the third day or the fourth day, but actually they’re not accessing the service. So that’s then on a personal level, that’s where I’m sort of talking about understanding boundaries, and making sure I refer into the service properly it’s been quite interesting for me. (Optometrist, London)

This optometrist clearly feels that they already provide emotional support and perhaps provide an emotional buffer which makes service users less likely to accept an offer of counselling. However, they also seem to be aware of the limits of the emotional

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support that they can offer in their own role. As discussed in section 5.3.1, their work is solution-focused, and once the solution has been found to an immediate problem, the service user may be left with underlying emotional issues that have yet to be addressed.

Another explanation for the much lower rate of referrals from optometrists than from rehabilitation workers might also be the difference in their ways of working. Optometrists usually work with people in the low vision centre, whereas rehabilitation workers are more likely to visit people in their own homes, where they will spend longer working with the individual around practical tasks that might bring emotional issues to the surface.

Another reason that is put forward for low referral rates is the reluctance of people in this client group to use professional counselling services:

I think a lot of people are really anxious but also don’t want to make a fuss. A lot of older people tend to put it down, well I’m being silly it’s just my age, and everyone loses their sight and gets poor sight as they older, so I’m being a silly old woman or whatever it might be, you know. And they just don’t, and they’re not from a generation that’s willing to necessarily express those feelings… (Rehabilitation Worker, London)

…patients who feel that there’s nothing that can be done, in that age group and are very stoic about coping, I don’t need a counsellor. There’s nothing you can do, nothing will change, and anyway I can cope and that age group particularly, in my experience is that, they’re very stoic about, one person actually said to me I’ve survived the war, I can survive this. (Nurse Counsellor, London)

…and their generation you wouldn’t do that sort of thing [counselling] you know. When you think you know, like that man must have been in the war if he was in his 70s and 80s you know, what had he seen. Over the years you’re sort of told to get on with it and what have you, you know. (GF2)

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However, this attitude of ‘soldiering on’ does not necessarily make people immune to depression, underlining the importance of continuing to work in creative and flexible ways to make the ESaC services accessible, particularly to older people:

...there’s a great spirit amongst older people of soldiering on and getting on with things and being strong, lots of kinds of injunctions like that, which I think comes from past experiences, having been through the war, having had to make do, and metabolise a lot of suffering really. I think perhaps sometimes older people think that you know their age related macular degeneration is more of the same and one mustn’t grumble and got to get on and I think that’s the prime breeding ground if you like for depression. (Counsellor, Gateshead)

To sum up, despite the fact that rates of referral to the ESaC services did not develop as quickly or to the levels that were anticipated when the pilot was being set up, over the life of the pilot project referral rates have been reasonably healthy and compare favourably with those seen in RNIB’s Bristol Counselling Project. In order to reach this position, a considerable amount of work has been done to embed the service within the low vision services and within the wider low vision field. Most of this development work has been undertaken by the counsellors themselves. There are various reasons for the slower than anticipated development of referrals. One is that although LVS workers clearly value the introduction of the ESaC services very highly, it has taken time for some of them to adapt their own working practices so that they refer appropriate cases on to the counsellor rather than providing emotional support themselves. Another reason is the fact that the target client group for the service is predominantly older people who may be resistant to the idea of counselling, or to the idea that they might benefit from it.

5.4 The experience of living with visual impairment: understanding the role of the ESaC services

In this section we aim to develop a deeper understanding of the role that the ESaC services have had in the lives of people who have used them. In order to do this we look at the experience of

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living with a visual impairment, locating the role of the ESaC services in the wider context of people’s lives.

5.4.1 The ‘sight loss journey’The loss of sight is often described as a ‘journey’. It has also been described as a transitional process from sight to blindness with various stages at which people experience different emotional impacts (Thurston, 2010). The first stage is that of diagnosis or sudden loss of sight, a key point in the ‘sight loss journey’ at which people have particular emotional support needs, as they experience feelings of shock and loss. It is a reaction which has become part of the work of the ESaC counsellors:

I guess nothing could quite have prepared me for the, I’m thinking about the experience of sitting in the room with somebody who is newly diagnosed and very, very frightened. (Counsellor, Gateshead)

The sense of devastation associated with diagnosis or sudden loss of sight is particularly vividly described by two of the service users interviewed. One individual describes his reaction to losing the sight in his second eye as a result of Macular Disease:

My left eye went first of all and it was still, because I could do everything, I could read, I could see, I could drive, it made very little difference to me and nobody talked to me about macular disease or said your next eye might go, I was totally unprepared (…) and anyway a couple of years later I got up one morning, went and sat on the loo and picked up the Guardian cross word from the day before, and I mean it had gone just overnight. Somehow this eye had gone (…) Couldn’t see, couldn’t read my newspaper. Again you know it was almost tear time, but I don’t cry because I’m a hardy Scot. So anyway, so that was it, devastating. (LM1)

As well as illustrating the emotional support needs of individuals at the point of diagnosis or sudden loss of sight, this example also highlights the often inadequate responses that people currently receive from ophthalmology and other vision services. It contrasts with the experience of the second individual, who was referred to

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the ESaC service at the point of his diagnosis by his ophthalmologist:

She said you could go to bed tonight and you mightn’t be able to see tomorrow. It’s as easy as that. So the look on my face must have been enough, she looked at us for a few minutes and I said can I ask you a question, and she said yes of course. I said am I going to go completely blind? Because my inside was literally churning with the fear of it, it was, honest. She looked at us and waited quite a few seconds before she answered and then she said, I don’t know. Well that wasn’t the answer I was hoping for… (GM1)

Whilst he too experienced similar feelings of shock and devastation, he was fortunate in receiving a helpful response from the professionals involved in his care at the time of diagnosis. He goes on to describe how he was then referred directly to the ECLO whom he saw immediately after his ophthalmology appointment, and from there was referred on to the ESaC service. The same ECLO, interviewed for this study, explained how recognising the emotional impact of diagnosis forms the starting point for her work:

Most people do want to go over their experience again, their eye condition, and their - I suppose it’s talk around the impact of the diagnosis (…) we start at the point of recognition, of how devastating it is, you know to lose vision and what an anxious time that can be…(ECLO, Gateshead)

Other service users interviewed described a more gradual realisation that their sight was failing, with diagnosis not figuring as a key event. However, even these narratives have a turning point in them. In some cases, as for the first service user quoted above, it was the point at which they started to lose the sight in their second eye that they identified as the turning point in their sight loss story:

I got a speck in the eye and the optician, I was getting some new glasses, looked and said oh, I said I’ve got some sort of speck here, so she sort of looked a bit dubious, took off my glasses and starting wiping them like mad you know, and I said it’s not the glasses. And

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it went on from there. Then I saw various people, I saw, I mean sadly I would’ve been all right if the second eye hadn’t gone, that was the biggest blow because you can manage with one eye…(LF1)

Well I’ve got MS and unfortunately it affected my eyes. So I did have partial sight loss in this eye and then I had a second attack so my good eye is really bad now so I’ve just got a little partition where I can see. (GF2)

It was really, really bad, and when I had my third son, it went completely (…) I just fainted, because I was putting a shirt on him and he was only 3 years old and then after that it just went blurred, blurred, blurred and it was really bad. (…) You’re never prepared for that, you’re never, ever prepared for that because you just hope. (…) I’m still not prepared, even though I’ve lost my sight and it’s all like shadows and colours and that, still I’m hoping that something will just trigger it and find a cure for it. It’s terrible. (GF3)

Although not reflected in the stories of service users interviewed for this study, registration can be another turning point at which people are forced to confront what is happening to them, even though they might have been living with poor sight for a long time:

When somebody offers registration that’s really it, that’s like the nail in the coffin type approach for some people, not everybody again but some people will say oh I didn’t know my sight was that bad. And, even though functionally we would look and think well you must have done, it’s appalling, you’ll be aghast that people say I didn’t know my sight was that bad, it’s like I think the adjustment has been where the wording we’re using is frightening to them and it makes it very real. Without those words, and without that certificate they were able to sort of shrug their shoulders and say well you know, they knew it was awful but, it can’t be that bad because no one said it was that bad. (ECLO, Gateshead)

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This quote underlines the importance of acknowledging that different people will react differently to visual impairment and to the various stages in the visual impairment journey, something which is clearly recognised by other service providers working in low vision services:

…there are so many of the patients that I’ve seen here now, across the last sort of 5 years who have been at various steps along that level of acceptance, some of whom have been very stoical, but on closer reflection you actually realise that whilst they’re still being stoical they’re still struggling and emotionally they’re still finding it hard to accept. There are others who express that level of frustration more verbosely, there are others who don’t accept any help, you know and it’s really interesting because the level of sight is not a direct measure of the level of acceptance by any means. (Optometrist, London)

…your state of mind and your personality type probably influence very much, you get the people who are like I’m not going to let this beat me I’m just going to get on with it and I don’t care, I’m going to get out and get on the bus and go places. And other people who’ll just withdraw and let the family take over and do everything for them. And that’s partly your basic personality and partly I suppose emotionally how resilient you are. (Optometrist, Gateshead)

I mean we’re all different, every single person is different and you, I’d sort of say, start off by saying yes if you get two people with macular degeneration and they’ve both had it for three years, then they might have completely different outlooks on life (Rehabilitation worker, Gateshead)

This difference in attitude is reflected in the interviews with service users, often expressed by relating their own situation to that of other people with visual impairment:

I suppose if I lose it completely then I might have a - but even this eye, I’m not going to, it will be just shadows you know, but at least I’ll still see shadows

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and I’ll see light. I just think about these other people that are here [at the low vision centre], with no eyesight and been brought up all their lives with no sight. (GM3)

For five years I was cooped up in the house and I just excluded myself from everybody and I just felt like there’s no way I can do anything and I felt like I was the only person that can’t see anything in the world. But there’s worse, now I realise that there’s worse off people than me. This just happened talking to [counsellor] and going and meeting other people that have got more worse, they’ve got no legs, no arms, and people with no sight so I feel like I’m better off than a lot more people. (GF3)

For these individuals, along with the support received from the ESaC service, encountering other people with visual impairments was clearly important in helping them to come to terms with their own situation.

Amongst service providers, there is also a recognition that people’s needs for support can change over time, as they adjust to their loss of sight, perhaps as other circumstances change:

… there are other things that happen, you know if your circumstances change, if your husband or your wife dies or something, and things happen that alter the dynamics of your life then even with a long standing visual impairment there might be a need for emotional support under a different set of circumstances. (Optometrist, Gateshead)

This clearly has implications for the ESaC services. Although in the initial stages of setting up the service it was thought that the main point of need for the service would be at the point of initial diagnosis and/or the onset of visual impairment, it is clear that some people will have need of the service later on:

… I think I’m beginning to realise that people need it [ESaC] at any point in their sight loss. Their circumstances change as well as their sight changes, you know they could lose a partner or their family

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could move away, there are so many things that could happen that would impact on their lives, that yes, anything really could be the trigger that leads to them seeking that sort of support. (Chief Executive, Gateshead)

And I think in general with sight loss (…) as people negotiate different life circumstances their issues with their condition will always resurface. So, you know whether someone is in a new relationship, a new job, or moving or you know, has bereavement or so on, they’re all kinds of triggers that will prompt people to seek support. (Counsellor, London (2))

However, the need for an early intervention service is also clear. The absence of specialist services like the ESaC services has meant that there are individuals who have been supported by the service who would have benefited more had they been able to access such support at a much earlier stage:

…if you’ve been diagnosed for 6 years there are a lot of people very stuck in this place that nothing can help me (...) once you kind of establish patterns of things like not going out, because you’re frightened, or sort of not trying new ways of doing things, if you do that for 6 years, it’s very hard to break out of… (Counsellor, London (1))

To summarise, there is a need for emotional support for people who develop a visual impairment at all stages as they adapt to life with deteriorating sight and as other events affect their capacity to cope practically and emotionally with their visual impairment. Some of this emotional support might come from other low vision workers, including ophthalmologists, ECLOs and optometrists who are likely to be the ones who see individuals near to or at the time of diagnosis. At this point some people may be in need of more intense emotional support or counselling, whilst others may find that the emotional impact of their diagnosis does not hit home until later on, perhaps after further loss in visual function or when other life events add to their stress burden. Although the ESaC services were set up particularly with early intervention in mind, as the services have evolved it has become clear that there is a need to work with people at all stages of their journey through sight loss.

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5.4.2 Loss of confidence, social withdrawal and isolationMirroring the findings from the Needs and Expectations data as well as findings from previous research, one of the most common themes in the interviews with service users in this study is loss of confidence and with it, increasing social withdrawal and isolation. Some individuals link this to their psychological state:

I don’t feel like great but I feel a lot better than I did. Because like I was just sitting in the house and didn’t go to the school, and I didn’t want to go out, or anything and I just sat in the house and watched the telly all day. (GF1)

…for five years I was cooped up in the house and I just excluded myself from everybody and I just felt like there’s no way, there’s no way I can do anything and I felt like I was the only person that can’t see anything in the world. (GF3)

I sort of grew away from people, sort of became a recluse you know, I still don’t get out often, but before I couldn’t go out and do my own shopping and stuff like that, I couldn’t get out the house at all. (GM3)

In all three cases quoted above the individuals were reflecting back to how they felt before they attended the ESaC service, and in all three cases they directly linked the improvement in how they felt to their experience of counselling.

Others, particularly the older interviewees, don’t report such an improvement in this aspect of their life. One individual describes how he is dependent on technology to keep him in touch with people, and how the recent breakdown of his computer meant that he was completely cut-off from the outside world:

…not being able to use the e-mail, because my computer has broken down, how am I going to keep in touch with all these people that I know? Well I’m not, I’m going to become a recluse… (LM1)

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Another individual explains that he suffers from agoraphobia which, combined with the practical difficulties he faces because of his visual impairment, means that he no longer goes out:

I used to have an active social life and then it stopped. I sit here and I think tonight I’m going to get ready and I’m going to go out for a game of snooker, and it gets to about 6 o’clock, 7 o’clock, 8 o’clock, 9 o’clock and I’m still sitting here and at 10 o’clock it’s too late so I go to bed. That’s the way it works. (GM2)

For others, social withdrawal seems to be reported more simply as a response to the risks of venturing outside the safe, familiar environment of the home with impaired sight, although this may eventually also result in psychological effects as they participate less in activities outside the home:

I haven’t been out for the last 6 weeks actually properly, but I do go of course if there’s something I want to go to. Although, I think I’m less likely to go, in the winter as now, you know the dark evenings are a bit off-putting I have to say… (LF1)

This individual had fallen and broken her wrist during an icy spell, and this had increased her fear of going out. However, she recognised the need to try to regain some of her confidence by getting out again:

I haven’t been out since I did it [broke her wrist], but I’ll be going out tomorrow the first day and I’ll just have to get, it’s been rotten out anyway, but yes I do have to get some confidence back… (LF1)

Another individual explains that when she first lost her sight in one eye she stopped going out for a time. However, she recognised that if she was going to move on with her life she needed to continue getting out. For her one solution was to get a second dog, which motivated her to go out for walks. However, she recognises her limitations, and now avoids going out in social situations to unfamiliar places or with people who do not know her well:

…I don’t really go out unless I’m with people that I really know and areas that I know. (GF2)

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Amongst the younger people with visual impairment interviewed for this study there was generally recognition of the need for them to overcome their inclination to withdraw socially, even if living with visual impairment meant that they had to accept certain restrictions on what they could do. However, for older people, the risk of social withdrawal leading to loneliness and isolation seems to be greater, particularly with loss of sight coming on top of other issues such as health issues or bereavements. This is articulated by service providers:

So you find obviously a lot of people are isolated and lonely and because I mean, it’s not just the fact they’re visually impaired you know it’s maybe tied in with the fact that they’re old, they’re not able to do the things they wanted to do physically anyway and maybe their partner has died… (Rehabilitation worker, Gateshead)

You know living alone, multiple bereavements, everyone I know has died. You know some people just sit there all day, they can’t even watch the telly and you know the only thing they’ve got to look forward to is the carer coming round in the evening. (Counsellor, London (1))

As reported in the first section of this report, loss of confidence, social withdrawal and isolation are all well-recognised and reported features of the experience of visual impairment (Thetford et al., 2008; Verstraten et al., 2005). They are themes that also emerge from the Needs and Expectations data as areas that service users want help in addressing from the ESaC services. Some of those interviewed report an increase in confidence and a decrease in isolation which they link to their contact with the ESaC services. However, older people in the interview sample particularly, although reporting having benefited from the service, are experiencing ongoing difficulties.

5.4.3 Getting aboutAlthough visual impairment does not necessarily lead to social withdrawal and isolation, it does lead to difficulties in getting about for most people. For some, particularly the younger people in the interview sample, the challenge of getting about with limited sight

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was one that they were prepared to take on, although they recognised their limitations and had had to adapt. This might mean asking strangers for help in finding their way, or asking a bus driver to let them know when they have arrived at their bus stop. For others it might mean going out with another person instead of alone:

I can go out by myself, like say if I wanted to go shopping like to the metro centre or something, but like I feel happier if I’m with someone. It’s hard for us like to see bus numbers and just everything. (GF1)

Because I can’t see distances it’s difficult to walk. I don’t go out very much. If I have to out I go with my friends or with my son. (LF4)

Whilst some of those interviewed are able to take a fairly positive attitude to the increased difficulty they face in getting about, for others it adds to the burden of feelings of loss associated with their loss of vision:

And when I go out I just cross at the crossing now, because you have that blurred vision, so I just go to the crossing now, we don’t cross the road, anyhow. It doesn’t stop me. But it’s just so sad… (LF2)

Some people are willing, if not happy to use a white stick or white cane to help them get about:

I’ve been run over twice, because I didn’t see the cars coming. And stuff like that you know, it made me a bit nervous about going out. Now I don’t care I walk in with my white cane and say hey! (GM3)

However, the use of a white stick or white cane is not something that is viewed positively by many of those interviewed who had experience of using them. For some they were simply seen as being of limited use:

I have a white stick which is about as much use as a postage stamp... (GM2)

For others their use is more problematic:

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I hate to use it [white stick], it’s probably very stupid, considering this [broken wrist] it’s probably very stupid, but I just loathe using it. (LF1)

They gave us a white stick which was really horrible and I was like I’m not using that, you know. (GF2)

There is a sense that using a white stick is stigmatising. At best it is a mark of being different and at worst can attract abuse. For one individual, the stigma of using a white stick was compounded by needing to wear anti-glare glasses when he was out:

I feel a bit embarrassed by the fact that I’m having to wear these and I’ve got a white stick (…) I was asked on numerous occasions where my skis were and things like that you know. I took it as a joke but really I wanted to lash out with my stick. (GM1)

The reluctance of many people with visual impairments to use a white stick or cane is something that is also commented upon by service providers, who tend to interpret this reluctance as being due to fear of appearing vulnerable:

I think that one of the reasons people say that they don’t want to carry a white stick is that it makes, it points them out as being vulnerable, I think that’s true here. (Optometrist, Gateshead)

NOTES: People may be in denial about their sight loss or be in fear of being seen to be blind, often manifesting itself in people not wanting to use a white stick. Fear of physical attack on the streets made people reluctant to carry an obvious symbol of their own vulnerability. (Rehab worker, London)

People won’t even necessarily use a symbol cane because it’s a symbol of blindness and makes them feel too vulnerable. I mean people have told stories, service users have told stories of being attacked in the middle of the road because they’ve got a white cane, and people will, somebody has had their white cane pinched from them in the middle of a road when

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they’re walking, using the white cane to get to the other side. (LVS Manager, London)

The views reported here underscore the prevailing feelings of antipathy that exist towards what are regarded as stigmatising symbols of impairment and vulnerability (Ben-Moshe & Powell, 2007), and which only serve to add to the psychological burden that individuals experience in living with visual impairment.

We looked at the role of low vision services in enabling people to learn to use white cane in section 5.3.1. The views reported in this section further highlight the potential for the ESaC counsellors, where appropriate, to work systemically with service users, alongside rehabilitation workers or other LVS colleagues, to enable them to overcome the psychological difficulties associated with some forms of rehabilitation work, such as the use of white cane.

5.4.4 ReadingOne of the most fundamental losses associated with visual impairment is the ability to read. For some of those interviewed, the effects of not being able to read have been profound, as reading and books have been important activities that have contributed to their sense of identity. Two individuals talk about being faced with the dilemma of what to do with their extensive and precious book collections:

I’m trying to get rid of the books. (…) it’s really quite depressing you know. I gave away my collection of Hardy books to a friend (…) I grew up reading, I mean that’s all I did as a child I mean that was my main hobby… (LM1)

I’ll show you my book collection. It would break my heart to get rid of it, but is there any point in keeping 700 books, if you cannot see them? Doesn’t make sense… (GM1)

Both individuals, like others interviewed, had access to equipment such as DAISY players and other talking book machines that enabled them to continue accessing books and other printed material, although as the quotes below illustrate, this did not always match the experience of physically reading a book:

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...the library comes here every so often and brings me talking books, they just came the other day and they’re dreadful. (…) thanks to my optician she’s given me reading glasses, which look quite frightful but the difference they make is unbelievable. They made a wonderful difference. And I can curl up with a book. (GM2)

I prefer reading, listening is nice, but I prefer reading. (…) for me, listening is nice, but I like reading a book, I never forget. (LF4)

The impact of losing the ability to read is of course wide-ranging and does not just affect the ability to read for pleasure, or indeed even just the ability to read books. For one individual it was her impaired capacity to read music that affected her most, as she was a composer and pianist who needed to be able to read music to play from:

Most of all it affects me because I’m a musician and I haven’t yet solved the problem of how to get the music to stand up near enough so I can actually play the piano from it (…) the problem is the reading of new works or of my own for that matter, or for reading when I’m writing… (LF1)

Not being able to read easily also has other practical implications, as people are not able to read post and important documents:

…when they send you some letters sometimes it frustrates you because you can’t read it properly. (LF2)

As well as potentially leading to practical difficulties such as missed appointments or unpaid bills, not being able to read is something that can lead to feelings of dependency as the individual may be forced to ask others to read documents for them.

Enabling people to maximise the use of their remaining vision so that they can read is part of the role of rehabilitation workers in the low vision services. However, as these quotes from rehabilitation workers illustrate, people’s capacity to adapt and learn new ways of reading can be affected by their emotional state:

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Getting people to realise that you know by holding something up there, with a good light they can read it, but this alien concept of just doing something as simple as that is so alien to like an 85 year old that they sometimes can’t handle it you know because they’ve been used to doing this, you know reading down there, and whether it’s feeling self conscious, whether it’s just feeling they’ve failed. Maybe it’s a mixture of all these different feelings. They find it incredibly hard in a lot of cases to do that, so even the simplest things you can get them to rectify the problem, sometimes it’s more complicated by the very, the feelings they have about the situation really. (Rehabilitation worker, Gateshead)

…certainly with macular degeneration, a lot of people develop coping strategies because it’s a progressive, slow, incremental problem, but there are occasions when they’re not quite aware that they can transfer those skills, and so they may find they see someone best by looking at their left ear, but it doesn’t occur to them to look a little off where they’re trying to read in order to see the print clearer. So, yes, and we do come across obviously the emotional impact of these things and from my point of view, I suppose quite commonly you’ll find people who become tearful or a little bit - express an anxiety about what’s going to happen or where they’re at or what they’ve lost. (Rehabilitation worker, London)

The loss of the ability to read is clearly a big emotional blow for many people, particularly those for whom reading had formed a big part of their life. Having to ask others to read for them may also bring up difficult emotional issues. However, for some people, at least, the situation may not be as bad as it seems at first, and with the use of devices such as magnifiers or particular techniques they may be able to maximise the use of their remaining vision to at least enable them to cope with basic practical tasks involving reading. In some cases, however, the individual’s emotional support needs may impact on their capacity to adapt in practical ways to their visual impairment. We can see again, then, how the work of the ESaC counsellors impacts on and intersects with the

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work of other low vision professionals working in the Low Vision Services.

5.4.5 EducationFollowing on from, and related to the impact of visual impairment on reading is its impact on the educational attainment and expectations of those who started to lose their sight at a younger age. It is particularly interesting to compare the experiences of two young women in the interview sample who both started to lose their sight to the same condition whilst they were at school – one is only in her teens and still attends school; the other is now in her thirties. The woman in her thirties describes how she received little help during her schooling to enable her to overcome the barriers created by her visual impairment:

I struggled throughout my school life. I used to go to the front where the teacher’s desk is and while I was sitting, like when the others were doing their work from sitting on the desks I had to go and stand next to the teacher at her desk or his desk and write from the blackboard, like the teacher’s desk used to be near to the blackboard, still I never got any help extra… (GF3)

This contrasts with the experience of the younger woman, who has received considerable support from the school, including home tutoring and technological assistance:

My school has been really good. There’s a woman who comes out from the visual impairment team, she’s been really good, she’s got us like a laptop for school, she’s got us like a viewer thing (…) they’ve spent like thousands of pounds on me, like school has been dead helpful. (GF1)

Despite this practical support, however, her visual impairment has caused her to review her ambition to become a lawyer:

Like it’s just changed like my life. Because like I wanted to do like law, something like really, really high flying and that, but like I can’t really now because it’s just reading… (GF1)

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Similarly, the woman in her thirties also recounts how she had wanted to become a lawyer, but also gave up this ambition:

From the beginning I wanted to do law and law is very very difficult, it’s a lot of reading involved. That’s what I went to college for initially, and then I gave up to do law and I gave up. I did my GCSEs and then I gave up, I thought ‘no I can’t cope anymore’… (GF3)

Interestingly, both women now want to become counsellors, a finding reported in other studies of people who have been through counselling (Lambert, 2007).

5.4.6 Depression and mental health problemsAs we saw in section 3.6.4 there is strong evidence from the data for the complete CORE-OM sample of 35 that they represent a clinical population: that is, at the start of counselling their level of psychological well-being fell well below what would be expected in a healthy population. Furthermore, a third of the Overall Sample of 98 also explicitly report having experienced depression or other mental health problems either currently or in the past, with some having sought professional help. These findings are further corroborated by evidence from the interviews. Although the interviews did not ask directly about depression, some service users do explicitly use the term depression in talking about their own experience:

This is the thing; I find it very difficult to do things. I know it’s all bound up in my, I suppose depression makes you not willing to do things. (LM1)

I’ve got her [counsellor’s] number so if I get worked up again, or get distressed or depressed, because I’m still on anti-depressants, I’m still on them and it’s a very hard thing to cope with, especially sight loss and the things that I’ve been through it doesn’t help. (GF3)

I do get depressed there’s no question about that. (LF1)

A small number of interviewees talk explicitly about experiencing mental health problems which have led them to seek help from mental health services, and one individual reports having made

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suicide attempts in the past. Others report feeling that their mental well-being was so low at the time they went for counselling that they had either had thoughts of ending their lives or just wished they were dead:

I did feel like I wanted to be dead, not to kill myself, but I did feel at times that I’d be better off dead… (GF3)

This place here saved my life really, I’d have been dead if it wasn’t for this place. (…) I was ready to do myself in. (GM3)

I think if I’d been still in the same mood that I was the first time I went to see [counsellor], with them black trees, if I’d been like that, I don’t think I’d have been here now, I think I’d have done something silly or serious. (GM1)

These quotes illustrate quite powerfully the level of mental distress experienced by some of the participants in the study. They also indicate the impact that the ESaC services had on alleviating their distress. The development of emotional distress into depression is something that is reflected on by one of the counsellors:

I think sometimes when issues aren’t dealt with they can become entrenched and I think that’s particularly where we are looking at depression and I think there are very often strong links between anger and depression, that’s been my experience as a counsellor, when anger isn’t dealt with and it’s internalised, that then you know, you can quite often see somebody becoming depressed and that depression lifting when the anger is identified and acknowledged and worked with. (Counsellor, Gateshead)

This link between depression and anger is reflected in the experiences of some of the service users interviewed, such as this individual who expressed a great deal of anger about how he had been treated by society, and in particular related his depression back to a decision to reduce his benefits:

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NOTES: He links his depression back to April 2008 when his Disability Living Allowance was dropped from the medium to the low rate. This meant that he lost his ‘income support’ which in turn meant that he lost benefits such as Council Tax and rent reductions. He is also angry and resentful more generally about life and about how he has been treated by society. (LM2)

Another individual reports anger as one of his main problems, linking it back to traumatic experiences in his past which he was helped to deal with through talking to the counsellor:

I’ve seen a lot of people killed, shot, friends of mine you know. And, I think [counsellor] was worried. She called it post traumatic something (…) and maybe she was a little bit right, but I’m feeling a lot better now. (…) When you start talking you get things out of your head that you’ve had for a while. I had trouble when I divorced, the wife and myself got divorced, it was, she was angry, I was angry and the kids weren’t allowed to visit me and I wasn’t allowed to see my grandchildren, but since [I saw counsellor] I made friends with my wife, we chat, we talk, the kids come up to my house, the grandkids come around (…) things have calmed down a lot. And I feel I’m finding myself a lot calmer as well, I don’t get so angry about things you know. I was getting angry if somebody bumped me in the street, I wanted to give somebody a smack. And, no I feel a lot better now, a lot better. (GM3)

Amongst some of those interviewed there is clearly a significant level of psychological distress. Whilst it is difficult to demonstrate through qualitative interviews whether or not someone’s mental health has improved, the findings reported here do help to illustrate some of the personal stories underlying the changes in the CORE-OM scores evident from baseline to post-intervention assessment. What the last quote also illustrates is the intense and specialised clinical need that on occasion presents itself within the ESaC services. The kind of therapeutic work required to meet this level of need could not be undertaken by low vision workers or even by

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untrained emotional support workers but requires the expertise of trained and experienced counselling professionals.

5.4.7 RelationshipsVisual impairment can have a major impact on the relationships that the individual has with family members and friends. Previous research evidence indicates that family and friends play a key role in meeting the support needs of people with visual impairment (Campbell, 2004; Sawyer & Reader, 2003). There is also evidence that as people experience loss of visual function over time their reliance on informal carers increases (Thetford et al., 2008).

The support needs of carers and close family members certainly emerges from the service provider interviews as a key theme:

… it’s a very difficult thing to come to terms with, your partner or whoever has a visual impairment, and sometimes it can impact even more greatly on the person that’s caring for that individual than the person themselves, the whole dynamics of the relationship might have changed you know, instead of being a spouse you’re now a carer, and that person themselves might not be in the greatest of health. (Rehabilitation worker, Gateshead)

I think it’s never talked enough about, the needs of the carer, because caring is such a heavy job, it really is a heavy load, and in as much as people love the person that they’re with, they didn’t go into it knowing that they were going to end up caring for this person. (LVS Manager, London)

…I can think of a significant number of carers who have needed counselling and the visually impaired person themselves have turned to them and said, or turned to me and said, I think my wife needs to see somebody, you know. And, then that has possibly been like that throughout their relationship as a married couple before the sight loss came along hasn’t it, with other things as well, just that one of them has been the stronger, dominant person, the better coper… (ECLO, Gateshead)

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What comes across in the service user interviews is a rather complex picture of the impact of visual impairment, as well as other issues, on the dynamics of people’s relationships, at least from the perspective of the individual with the visual impairment. One individual describes how her diagnosis coincided with the start of a new relationship, and how she had feared the reaction of her partner:

There’s definitely stigma, because I mean I must admit I felt like that with [partner], because I’d only been seeing him about maybe 4 months and I had to sort of say well, this is it. I was like thinking, you know I’m broken now so he is not even going to be interested, but he was totally different he was like really supportive. So that made all the difference. But it is the stigma. (GF2)

However, although she felt supported by her partner, she has found that her visual impairment has impacted on her caring role as mother of teenage children:

Emotionally it’s quite a, because as I say I was on my own with 3 kids and I was like you know, head of the ship or whatever you call it and I couldn’t do what I want, but I mean the kids have been really good. (GF2)

This experience resonates with that of two other women in the interview sample. One individual lost her sight whilst her two teenage children were still living at home:

Because of my children, because I was responsible for them I didn't want to spoil their lives. I just wanted to give them - as a mother, as a parent, I wanted to give them a good education. (LF4)

I want them to have good careers and they’ll have a good life and have - I don’t want them to think ‘Oh I should be doing this for my mum’. Yes as a mother, they should be helping me I can understand that, but only if they’ve got free time, only if they’re willing to do it because I’m not a burden and they’re doing it, they

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want to do it because they want to do it, that’s fine, but - I want to be independent, you know. (GF3)

In all three cases, these women lost their sight at an age when their children were still dependent on them, and for all three, their primary concern was that their children’s lives should not be adversely affected by their own visual impairment. However, as the last quote suggests particularly, there is also contained within this concern for the welfare of their children a desire on the part of the individual to maintain, or regain, their independence.

Concerns about the impact of visual impairment on relationships with children are also common even when the children are adults and living independently. This individual, who is himself the primary carer for his wife, describes finding it difficult to accept being dependent on his children for support. He also reports being concerned about the impact on his adult children of his diagnosis:

…when it was first diagnosed I think they [family members] were in as much a state of shock as me to think that it was a possibility that I might lose my sight altogether, it’s quite possible. And I think well anybody, any of them would do anything for us with regards - if it was something that I couldn’t do myself because of my sight, they’d be there. (..) I’d rather not ask, you don’t want to put on the people who’ve got, it’s nice to have them come and visit, but not to come and do work. You know what I mean. (GM1)

Similarly, another individual describes minimising the impact of her visual impairment in front of one of her adult daughters because she feels that she needs to protect her, particularly because she feels that her daughter took the recent death of her father very badly:

…you know I just, I don’t make out you know that I’m thinking about it (...) I just say oh, it’s ok the magnifying glass is a great help and that’s it. I don’t need much help. It’s only when the letter is in small print I probably say oh, come and read this to me, that’s all, but otherwise, I manage with my magnifying glass, but then I don’t want to put the fear on her and

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then she took her dad’s death badly so I don’t want to add on to it. (LF2)

For those living in close contact with family members, particularly children, there is a fairly strong common theme to the way in which visual impairment impacts on relationships, which is reluctance on the part of the visually impaired person to take on a dependent role, perhaps due to a fear of reversing or at least disrupting the existing dynamic of the relationship, usually one in which the visually impaired person has themselves been in the caring role. This is coupled with a desire to protect the loved one from the impact of their impairment.

Although the service users quoted above do not explicitly talk about having been helped to address these particular kinds of relationship issues through the ESaC counselling, all of them report having been helped significantly by the counsellor in more general terms. Certainly, the counsellors find themselves working with these issues in their practice:

I think very often sight loss brings up all sorts of issues that play themselves out in close relationships around you know whether it’s a couple or whether it’s mother or daughter or whatever, that play themselves out through dependency, independence, those are the kinds of issues though that I would work with one-to-one, with the person. (Counsellor, Gateshead)

What is clear from the service user interviews is that many of those interviewed brought with them to the counselling experience quite complex relationship issues in which visual impairment itself was just one element. Several of these individuals report the ESaC service helping significantly with these issues. One individual describes quite vividly how his relationships with his extended family, an important element of his life, were contributing to his poor emotional state:

My girlfriend was having problems with her family, and my sisters were around and they were having problems with their kids and their families, and they were bringing it on to me. I was like the counsellor sitting in my house, and everybody was phoning, eventually I told everybody just get lost leave me

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alone, you know that’s what I did I just couldn’t take anymore. (GM3)

He goes on explain how the ESaC service helped to improve his relationships, by learning to attend to his own emotional needs first:

…all I can tell you is that since I’ve seen [counsellor] I’ve bucked up a lot. I’ve really bounced back and everybody is even noticing it. But they think, maybe the thing that has changed a bit is that I’m not accepting everybody putting their problems on me. I’m taking control of my hands sort of thing. If I don’t want to hear it I’m not going to hear it, you know what I mean. People come fighting and want to argue in the house I send them home (…) You know, it’s made me think more about myself. (GM3)

Similarly, another individual who had an extremely troubled relationship with her family describes being helped by the ESaC counsellor to start looking after her own emotional needs:

She started talking to me and talking to me and she calmed me down and made me realise that I’m important myself and I needed somebody to do that, d’you know what I mean? I needed somebody to say that, well not say, because she doesn’t say anything, but she just makes me talk and come to my own conclusion. She gets me to say it. Yes. It just makes me realise that I am important and I’ve got a life as well and I shouldn’t get beat up by my family just because I love them. (GF3)

In this case, the individual’s visual impairment was directly bound up with her relationship difficulties, as her family’s cultural background meant that they stigmatised her because of her impairment, seeing her as being in some way to blame for her situation.

Another individual describes how she used the counselling sessions to talk through particular difficulties she was having in her relationship with her sister at the time:

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what did tend to crop up an awful lot was my sister, because at that time my sister was going through a terrible phase and it was really affecting me, because I do get really affected by her, so quite a lot of those meetings were around things that were going on in my sister’s life, and that had a knock-on effect. (LF3)

For another individual, attending counselling helped her to come to terms with the end of her unhappy marriage:

I always thought my husband would understand me one day but that day never ever comes, so now I think of myself in the future and not with him. Before I wanted to think of myself with him. I thought that I’d make more effort and he would understand me, but that day never comes, so I’m thinking of leaving him. (LF4)

It is clear that the ESaC services have been important in helping some of those interviewed to address some quite difficult relationship issues that have been causing them significant emotional distress. In some cases those relationship issues are directly bound up with the individual’s visual impairment, whilst in other cases only indirectly so. It could be said that these issues could be addressed by any non-specialist counselling service, which may be true for some individuals. However, it is also important to recognise that these issues are compounded by the experience of visual impairment and that for some people, being able to receive counselling from someone whom they know understands that part of their experience has been the key to helping them to address their relationship difficulties.

5.4.8 BereavementAs already reported, the emotional impact of visual impairment can be compounded by other forms of loss, a major one being bereavement, particularly for older people. This is highlighted in the service provider interviews:

If your husband or your wife dies or something and things happen that alter the dynamics of your life then even with a long standing visual impairment there might be a need for emotional support under a

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different set of circumstances. (Optometrist, Gateshead)

I think it’s very difficult to completely separate off the sight loss issues from how they’ve been in the rest of their lives up to that point, previous challenges that they’ve had in their lives. And, I think that is, that is very much therapeutically the case working with loss, because I think any loss inevitably resonates with previous losses. (Counsellor, Gateshead)

I’ve had a number of clients who are experiencing sight loss and bereavement, in conjunction and finding that very difficult. (Counsellor, London (2))

Four of the service users interviewed reported having experienced bereavement in the few years prior to using the ESaC service. Two informants had lost husbands. One individual describes how the experience of bereavement has combined with her visual impairment to cause her to feel a loss of optimism:

I mean I’m a widow actually, my husband died seven years ago now but I’m still trying to get used to it, and so that was a big blow and then oh this started, so yes the two things together do engender a loss of optimism I suppose, I’m not normally a pessimistic person but I am more so now than I used to be. (LF1)

The other widowed participant describes having to cope not only with her own grief but also with that of her adult children:

...inside me nobody knows how I feel, and the children, you know, took it badly so I’ve got that then to cope with as well... (LF2)

She explains how seeing the ESaC counsellor during this period helped her to cope with the combined impacts of the loss of her husband and the loss of her sight:

I saw her for twelve weeks because then this was during my mourning period, I saw her. (…) and then my fear of becoming blind, because you know, just to talk to somebody, and she was really good, really

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good. (...) I was grateful for it, and I looked forward to it. (LF2)

Two other interviewees report having lost adult children in the previous few years, but only one of these directly identifies his reaction to his bereavement as leading to his needing counselling from the ESaC service:

Two years ago, my daughter died (…) my eldest daughter came to tell me that she had died that morning and I said oh right, ok and everything just fell apart. I just didn’t want to do anything, I wanted to sit here feeling as sorry for myself as I possibly could, and do nothing about it. (GM2)

He goes on to explain how the ESaC counsellor helped him to deal with the feelings associated with the loss of his daughter:

At the time I was having a very, very bad turn, it was just after [daughter] died and I was finding it very, very difficult. [Counsellor] was good, she was very good. I appreciate what she did for me. (GM2)

These illustrations highlight the heterogeneity of experience represented in the interview sample, and therefore, presumably, in the larger sample of participants for whom we have other data. The personal circumstances of people’s lives and relationships are complex and varied, and so the way in which the experience of visual impairment is woven into those experiences must also be seen as being complex. For those people who came to the ESaC service with specific issues around bereavement the service has been extremely helpful and is highly valued.

5.4.9 Other physical health problems Most of those in the Overall Sample of 98 reported physical health problems of various kinds. This is reflected in the experiences of service users interviewed, with physical ill health adding further to the stress burden. These physical health problems take various forms, and also differ in the kinds of stresses they create. In one case, a young woman describes how she is in the process of learning new IT skills that will help her to overcome the barriers she faces as a result of her visual impairment and hopefully enable

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her to pursue a career, but that other physical health problems are holding her back:

…what holds me back is my health because I’ve got other problems, I’ve got like hip problems, arthritis problems in my knee and I’ve got a trapped nerve, and when my leg locks I’m in a wheelchair (…) but if everything goes alright I’d like to go and do some education or degree or something like that if I can. (GF3)

Another woman, whose visual impairment is caused by Multiple Sclerosis, had to cope with symptoms such as exhaustion that combined with her visual impairment to create feelings of not being able to cope. In yet another case, an interviewee explains how it was not his visual impairment but having a heart attack that caused him to reach a psychological low point:

I think the biggest thing, my sight loss wasn’t too bad, I was fine until I had the heart attack, it was the heart attack that just put the lid on it. (GM3)

For older people with visual impairments, particularly, their problems can be compounded not only by their own physical ill health but also by that of their partner. For example, one interviewee was acting as the primary carer for his wife who was recovering from a stroke and had limited mobility. He describes how this and finding out that he was likely to lose his sight came on top of his other physical health problems:

So that on top of [wife’s] problem, my problem with my back, I mean I had 2 knee operations, in the last 2 years (…) So you know things have just been horrible for the last couple of years. (GM1)

In this case, the individual’s loss of sight was particularly stressful, as it impacted not only upon him but also upon his capacity to care for his wife.

Those working in the low vision services are clearly aware of co-occurring physical health problems adding to the emotional and physical burden that their clients have to deal with, as this quote illustrates:

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So in a way our primary concern is somebody’s sight, but if age or other conditions are making things difficult you know we can sort that out too. But we don’t just always, if somebody says I’m fine, alarm bells do start to ring and you know they’re, our assessors are very skilled at asking questions several times, but in different ways and in knowing that sometimes an assessment isn’t a half hour, well it isn’t a half hour process. You know sometimes they can be there for an hour, have a cup of tea and it’s as that person is starting to get comfortable then they will say oh and I had a heart attack last year or something you know, something like that. But our assessment team are very skilled. (LVS Manager, Gateshead)

Co-occurring physical health problems can exacerbate stress caused by other issues including visual impairment and can bring a person who has, up to that point, coped emotionally with their situation to the point of needing more intense emotional support than can be provided by rehabilitation workers or other low vision workers.

5.5 Valued features of the ESaC servicesThe service users interviewed were able to identify various ways in which the ESaC services had helped them, and these have been reported on in previous sections. However, there are a number of features of the services which service users identify as being particularly valuable to them. These are as follows.

5.5.1 Talking to an impartial listenerOne of the themes that emerges strongly from the Needs and Expectations data is the idea of being able to talk openly and freely to someone impartial. This also emerges as an important theme in the service user interviews, reinforcing and adding depth to the findings from the Needs and Expectations data.

I think it’s just good talking to someone who’s like impartial like to your situation and you can, because like I think it’s harder to talk to like your friends or your family, because (…) like a counsellor you can just

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say, anything, anything you want and she can’t like say anything about it… (GF1)

No matter what I said, she never commented, oh you shouldn’t have done that (…) You could unburden and she was good for me [counsellor]. She really was. (GM2)

The same individual later goes on to contrast the counsellor’s attitude with that of other people:

Because I’ve talked to people and they’ve said well, I really don’t think, why don’t you pull yourself together. Now come on. (GM2)

The important thing here is that the counselling relationship is non-judgemental, in contrast to relationships with family and friends. It is a view similarly expressed by others:

… she’s somebody who listens, you know she would listen, she would suggest, she’s not laying it on you, you have to do this, you should expect this or, do you follow me, no she lets you speak, you speak and then she will just gently add something if you look at it this way or you look at it that way (LF2)

Listening with maybe sympathy. And not so much criticism. It’s very easy to criticise like my husband. (LF4)

This attitude is described by one of the service providers:

A relative may sort of say oh well don’t worry, it’s not as bad as all that, well for that person it is as bad as all that and much, much worse. I think they need to be allowed time to grieve and adjust to how they feel before you can take them on a new journey. (ECLO, Gateshead)

Other service users emphasise the value of being able to talk things through in a way that they cannot do with other people:

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…you can’t engage with people like that every day, it’s just, you just can’t, that’s just not normal in life, so it was nice to have that release where I could actually speak my mind thoughts instead of just like trying to work them through in my own head… (LF3)

Apart from my sister, and apart from my fiancée there’s someone from Sight Service I can explain things and get things off my chest (…) She helped me a lot, yes. It gets a lot of things off my chest, a lot of things building up. (GM4)

Another reason why being able to unburden to the counsellor is so important for some people is the fact that they do not want to unburden themselves to their close family or friends, either because they do not want to upset them by revealing the extent of their distress or because there are issues that they do not want to share with people close to them:

…it’s really good because sometimes even if you’ve got - say I’ve got my husband, I can’t completely open up and tell him everything, the way I feel, sometimes it’s because I don’t want to hurt him, sometimes because I don’t want to tell him something, sometimes it’s because I just don’t want to put him through it, but there I can just open up and it’s because she’s not related to me, she doesn’t hardly know me, d’you know what I mean by that? She’s neutral and it helps so much, then you just don’t hold back… (GF3)

For other interviewees, however, the barrier to them unburdening to other people related less to their close family than to people in their wider community and social circle, as they wanted to continue to be seen as ‘normal’ to the outside world:

It was useful for me in the sense that at that time, I needed someone. I’ve got loads and loads of people around me but I can’t divulge about my sight, except my immediate family who knew about my sight. I can’t divulge it to anyone… (LF2)

Being able to talk to someone neutral and non-judgemental helps to normalise the client’s experience (Perren et al., 2009). It is an

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important element of the client experience of counselling, and an element that is necessary for personal change to occur (Carey et al., 2007).

5.5.2 The counselling relationshipAnother key theme from the interviews, as from the Needs and Expectations data, was the significance of the personal qualities of the counsellors themselves, and the quality of the counselling relationship:

[counsellor] was great. She really was great and she helped me an awful lot. (…) we used to have great sessions her and I. (GM2)

She’s a very sweet lady that, a very sweet lady. (GM3)

It’s the way she talks and yes she’s brought me out of myself. I’ll never forget her. But I’ll definitely, definitely keep myself from going down. (GF3)

It all depends on who you’re comfortable with, you know. Say yes, find someone like [counsellor] because she’s so calm herself, and she’s good, she’s a lovely calm person, so she puts you at ease. And like she says anything you say is just confidential, it’s not going to be blurted about. You know. (LF2)

The importance to service users of the personal qualities of the counsellors is also recognised by the low vision service providers:

I think we have been very lucky with [counsellor], she’s a lovely person to have round the place. And it’s obvious the clients feel exactly the same. (Chief Executive, Gateshead)

It is also clear that an emphasis on establishing a relationship with the client is very much part of the humanistic model adopted by the ESaC counsellors:

…because I’m a humanistic practitioner so I work very much within the relationship and it’s very important for

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me to make contact with the client. (Counsellor, Gateshead)

Beyond the personal impact that the counsellors made on people, however, is a recognition that these personal qualities are coupled with professionalism and skill that marked out the counselling relationship as different to the kind of support that they may have got from informal relationships:

I really loved [counsellor]. And to be honest with you because she was so, and she’s so professional as well, she’s a really human person, and she how can I say, you know because I’m not used to being around people like [counsellor], and she has that insight and understanding and even if she doesn’t have that insight and understanding she can like work things through, and she will just stay with something until it’s worked through and I just found that so unusual to be around somebody like that… (LF3)

The quality of the relationship between counsellor and client is another important element in the therapeutic process, and is often discussed in the counselling literature in terms of ‘therapeutic alliance’ (Cooper, 2005). Whilst this did not form the focus of this study, it does seem, both from the interview data and from the Needs and Expectations data, that the quality of relationship formed by clients of the ESaC services with the counsellors has been perceived by clients as being high, and as contributing positively to their experience of counselling.

5.5.3 Knowing the ESaC service is thereAnother theme emerging from the service user interviews is the importance of knowing that the ESaC service is there if they need it again:

It’s reassuring to know that that service is there, it’s comforting to know that in a system that’s so, oh it’s harsh. It really is quite harsh, so to know that nestled in there somewhere is [counsellor], somebody like [counsellor] it’s very reassuring to know... (LF3)

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The counsellors evidently encourage people who have been through the service to feel that they can contact them again if need be:

She said you know I’m there if you need us you know, give us a ring anytime (…) I would [go back] but maybe just to sort of like not in a professional sort of, just to sort of like a little chat just to say, thank her for her time. (GF2)

I was meant to phone her and say, I think I phoned her once, I was having a little bit of a problem and I phoned her, but after that I’m fine you know. (…) She says you know if you’ve got any problems phone me again. And I have. (GM3)

It’s a lovely place, if I need to [go back] I would. I would. (LF2)

This positive view of the services also leads to a desire for them to be made more accessible to others who might benefit through better publicity:

Most people don’t know about it. (…) I think if they publicise this more and let people be aware of it, you know (…) Doctors, churches, doctors’ surgery, you know because there are notices in there, that will attract you when you go to the surgery and you pick a leaflet (…) Even I would say, even in supermarkets (…) Because I never knew RNIB, I just thought it was just for blind people only, so I’ve never, you know, I see the adverts and all that but it doesn’t specify that we do this for partially sighted (LF2)

Because it is a good service, and I’d like to think that RNIB have that as like a permanent fixture (…) if the service that [counsellor] provides was made more common knowledge at the preliminary stages of being registered, as like a, almost like a welcome package, when you get registered in your borough, or for people who have lived in those boroughs all their lives and have visual impairment if there’s some way that welcome package can be communicated or you know

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like you have, like you have community letters, like monthly bulletins, or even if on the RNIB website… (LF3)

5.5.4 Accepting and adapting to visual impairmentThe findings from the qualitative interviews demonstrate more explicitly than the findings from the Needs and Expectations data that the ESaC services have an important and valued role in enabling people to come to terms with their visual impairment and with the resulting changes in their lives. Learning to live differently, perhaps within limitations, comes across as being particularly important for younger people in the interview sample. This might mean learning to accept physical limitations, and to adapt their everyday behaviour, particularly where visual impairment is associated with other physical symptoms as in the case of this individual with Multiple Sclerosis:

I’m trying to stay calm. Because that’s what sets it off. I can sort of control it because normally you know when you get up and you’re like dashing for work, like I’ll just go all to pot, so if I sort of take a step back and take a deep breath and just calm down, just say well I can’t, but this is what the lady at the counselling sort of helped us to do. I can still get around but differently. (GF2)

This individual directly credits her work with the counsellor for the adjustment that she has learned to make. For others the adaptation process is more about adjusting their goals and ambitions for the future, as for this young woman who has changed her plan to go to university in another city, so that she can remain living near to her parents:

I think that’s one of the hardest things like accepting it. (…) I fancied going like to Manchester Uni (…) and this kind of has - in a way but I’m not really bothered about that - it’s changed, like I’m quite happy to be here and do it. Because like I can still move out and have like my independence but be close enough so, that’s fine. (GF1)

Although she reports being happy with her decision, there is also clearly ambivalence in the way she talks about it. For her,

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counselling helped her to view the future more positively, even though she is still coming to terms with the altered future she is constructing for herself.

Others in the sample also describe having been helped by the counsellor to come to terms with their deteriorating sight by envisaging new roles for themselves, helping to reconstruct their disrupted sense of identity, or in sociological terms, their ‘disrupted biography’ (Bury, 1982):

How was it helpful with [counsellor]? Because it brought to my attention that there’s a life after even if you do go blind it doesn’t mean it’s the end of the world, she actually filled me in as to how to cope with it. She helped with that way, the things that you could actually do in the voluntary sector, that didn’t mean you were finished with work or whatever... (GM1)

Another way in which interviewees report having been helped to cope better as a result of counselling is by being helped to focus on the present or immediate future:

I’m always concentrated on tomorrow. That’s the important day tomorrow. That’s when it’s going to happen, and you just keep on doing that. (GM2)

[Counsellor] said why are you smiling all the time, I’m always smiling I don’t, but at the moment I feel happy, I’m quite happy. At that time I should have been crying, because I was down, I was really blue, really, really blue you know, and I was ready to, if I drop dead tonight it wouldn’t worry me, now I think about hey what are we going to do, what’s going to happen tomorrow, you know. (GM3)

Another individual talks about being helped by counselling to develop a more positive attitude, part of which is coming to understand that she is not alone in her experience of visual impairment:

It's not only me, many people have eyesight problems as well. But the most important thing is how to be positive. (…) Last year, I was very unhappy and I sat

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here hating myself and it was very negative. I feel I’m - I feel calm nowadays. (LF4)

Similarly, others talk about being helped to a more positive, forward-looking attitude by learning that they are not alone, and that there are sources of support available:

And you know, what she’s trying to do is not to be too afraid, do you follow me, so allay your fears, as such that there are services there you know, it’s not the doom and gloom you think it is, you know, there are helpful people around who are willing to support. (LF2)

For others, it is seeing other people with visual impairment who are coping with their lives, combined with receiving counselling, that has helped to restore their confidence:

I went the following week and met some more people and had another interview with [counsellor] which went very well and as the weeks progressed and I was feeling much more confident in myself that if it did come to the worst and if I could rally the way these people had rallied and the inspiration they’ve given me, I said I really have got nowt to worry about, it’s not the end of the world you know. But I hadn’t said that the first day, as you can understand. (GM1)

Conversely, one individual feels she has gained confidence through seeing the ESaC counsellor, and describes meeting other people with visual impairment whom she feels are not coping and would benefit from counselling:

…these ladies who’ve got macular disease, they’re just, one lady wouldn’t - something about her sister moving and she said oh I couldn’t, I can’t get on the bus, and we were like saying well why doesn’t your husband put your on the bus and your sister can meet you off the bus, you know and she wouldn’t go out to go to her sister’s anymore because she had lost her sight you know, so it’s about confidence as well and that’s what, as I say like, that’s what I think people

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need counselling to talk them through it you know. (GF2)

As we have seen, the impacts of visual impairment are wide-ranging – depression, anxiety, loss of confidence, social withdrawal and isolation being common experiences. The process of coming to terms with visual impairment is thus a multi-dimensional process, requiring the individual to adapt both emotionally and practically. The ESaC services seem to help people to do this in various different ways, according to the individual’s particular experiences and style of thinking.

It is perhaps in relation to coming to terms with visual impairment that the counsellors’ use of a humanistic model of counselling comes most to the fore. Being able to accommodate to the altered sense of self and to the practical changes that living with a visual impairment involves seems to be vital to the process of coming to terms with being visually impaired. This is very much in keeping with the humanistic emphasis on the capacity of the individual for personal growth (Joseph, 2010).

5.6 SummaryThe qualitative interviews enable us to gain a deeper understanding of how the ESaC services work in the context of integrated low vision services, and how they are experienced and perceived by those who use them and those who work in them and with them. They also provide us with a broader understanding of the difficulties facing those who use the services and some assessment of the ways in which the ESaC services are able to help them to address those difficulties.

Although no fixed philosophical model of counselling is specified for the ESaC services, the counsellors who have worked in the service have all worked within a humanistic model of counselling. This model is highly appropriate to the services as it focuses on the individual’s inner capacity for growth and emotional recovery.

One of the key themes to come out of the interviews with the counsellors is the need for the services to be flexible. In this respect the ESaC services are distinctly different to generic counselling available through primary care. Flexibility is needed particularly in relation to how the counsellors, and the services as a

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whole, work to engage clients who might be less committed to the idea of counselling at the outset than clients who attend counselling through primary care. This flexibility has partly been driven by the need to embed the service and to generate referrals. However, there is clearly also a therapeutic need for working flexibly with a client group who have particular emotional needs relating to the experience of visual impairment which mean that they may benefit from different levels of emotional support or counselling at different stages. For this reason the ESaC services were set up to offer both counselling and emotional support. This dual model seems to be one which is working well.

From the interviews with other service providers who work with people in low vision services, it is clear that emotional support has always formed an important element of their own work, and that the ESaC services serve a role which has come to be seen as indispensible by most of those interviewed. Primarily they are valued because they are seen as being able to meet the more intense emotional needs of service users that cannot be satisfactorily met by rehabilitation workers, optometrists and others working in low vision services. They are also valued because there are elements of the work that other low vision service workers do, such as white cane work, that require the service user to be emotionally ready to engage in that work for it to be successful. Some service users may be enabled to feel readier to engage in this kind of work simply having been through counselling. However, it may also be that there is the potential for closer collaboration between the ESaC counsellors and other low vision service staff to work together in supporting service users in particular rehabilitative activities.

The interviews also provide some useful insights into how the process of referral into the ESaC services is working. The majority of referrals into the services have come from within the low vision services that the ESaC counsellors are based in, particularly from rehabilitation workers. Many of these referrals have come about opportunistically, with a worker introducing the idea of seeing the counsellor to a service user who had contacted the low vision service about something unrelated to their emotional support needs. In some cases the service users are open to the idea of counselling, even though they may not have actively sought it. In other cases the individuals are less obviously receptive to the idea of counselling, but the worker identifies a clear emotional support

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need during the course of their work with them. In such cases, the low vision staff employ strategies for introducing the idea of seeing the ESaC counsellor which normalise and downplay what is involved, often avoiding explicitly using the term ‘counsellor’. Another approach adopted by the service has been to use screening calls, in which low vision service staff routinely ask anyone who comes for a low vision appointment if they would be happy if the counsellor telephoned them. This, again, tends to be introduced to people in terms which avoids counselling language in order to maximise the chances of engaging them with the ESaC service, even at the level of a telephone call to find out how they are and to make them aware that someone is there if they need support at any stage. These are further examples of the flexibility necessary for engaging clients who may initially reject the idea of counselling, perhaps because of associated stigma, but who, once engaged at some level by the counsellor, may come to benefit greatly from the service. Again, this is a feature of the services which distinguish them from generic counselling offered through primary care.

When the ESaC pilot project was being established it was thought that the services would be tapping into a large source of unmet need and that referral rates would develop quickly. However, despite the successful deployment of various strategies for bringing service users into the service who might not otherwise have sought counselling, referrals did not come through as quickly as anticipated, and although at the time of reporting the service is running near capacity, there have continued to be ebbs and flows throughout the course of the pilot project. The majority of referrals come from within the low vision services although even referral numbers from these sources have not been as high as expected. Referral numbers from non-LVS sources remain low, with the lack of GP referrals being highlighted as a particular issue. The interview findings suggest a number of possible reasons for lower than anticipated referral rates. One is that low vision workers are continuing to engage in emotional support work that provides a buffer to service users who might have more deep-rooted emotional support needs and who might benefit from formal counselling. Another reason is the reluctance on the part of older people, who form the largest proportion of the service’s potential client group, to accept the idea of counselling.

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The interviews with service users, in particular, provide some useful insights into the difficulties that clients of the ESaC services face in living with a visual impairment. They also explore some of the ways in which the services have helped them to address, or at least cope better with those difficulties. The importance of understanding the different stages of the ‘sight loss journey’ is highlighted, as is the need for the ESaC services to work flexibly with people at different stages of that journey including at the point of diagnosis, sudden loss of sight or at other turning points such as loss of sight in a second eye. People will have different support needs at different stages as their visual function deteriorates or as the circumstances of their lives change. It is clear that the ESaC services have a role to play in supporting people at all stages through this journey. Although the importance of understanding visual impairment in terms of a transitional process is not a new one (Thurston, 2010) these findings do add further evidence to support that interpretation.

Other findings from this study relating to the impacts of visual impairment similarly reinforce previous research. Loss of confidence, social withdrawal and isolation are linked themes in the service user interviews. Several participants described their social withdrawal as a psychological response to their situation, and reported having been helped to become less socially withdrawn and isolated by their experience of counselling through the ESaC services. Younger people, in particular, recognised the importance of overcoming their inclination to become socially withdrawn, although they had come to recognise the need to live within certain limitations, such as going out with other people instead of alone. The risk of social withdrawal leading to loneliness and isolation seems to be greater in older people and some of those interviewed were struggling to cope with such feelings. For some, their social withdrawal was related more to their lack of confidence in their physical capabilities and their fear of venturing out. Related to this, another theme emerging from the service user interviews is the impact of visual impairment on people’s ability to get about. In particular, the use of a white stick or white cane emerged as a problematic issue for several people. Symbols of visual impairment such as these are seen as stigmatising (Ben-Moshe & Powell, 2007), at best marking you out as different and at worst attracting abuse. Consequently service users reported a reluctance to use a white stick or white cane. Another strong theme emerging from the service user interviews is

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the emotional, as well as practical, impact of no longer being able to read easily. For some of those interviewed reading had been an important activity and no longer being able to read not only had practical effects, but also impacted on their sense of identity, engendering a real sense of loss. For others the impacts reported were more practical, but also had emotional implications as they were forced to ask others to read important documents for them. For some individuals there may be more that could be done through the input of rehabilitation workers, to enable them to maximise the use of their remaining vision. As with the use of white cane, this is an area of activity in which the ESaC counsellors might have a valuable role.

The service user interviews illustrate quite powerfully the level of psychological distress experienced by users of the ESaC services, with some individuals explicitly talking about their feelings of depression and, in some cases, quite profound psychological distress. These findings add further weight to those from the CORE data which indicate significant improvements in psychological well-being from baseline to post-intervention assessment, as well as to the qualitative Needs and Expectations findings. What the interview data provide are vivid illustrations of the levels of distress experienced, and of the role of the ESaC services in helping to alleviate that distress.

The service user interviews provide further evidence for the impact of visual impairment on relationships. In particular they highlight the way in which loss of sight can affect the dynamic of relationships between parents and children. For parents of young, dependent children there is a fear of their visual impairment negatively affecting their ability to provide for their children and a desire not to become a burden on them. For parents of grown-up children living independently there is a similar concern not to become a burden on them and to protect them from the emotional impact that their visual impairment may be having on them. There is also clearly a desire on the part of parents not to become dependent on their children. In addition to particular concerns about dependency reported in previous visual impairment research (Thetford et al., 2008), a number of service users interviewed report having been helped with other difficult relationship issues through the ESaC services. A common theme in the way people report having been helped is by coming to understand that they must put their own needs first. Although in some cases the

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individual’s visual impairment was not their main problem, in others their relationship difficulties were intrinsically linked to their visual impairment. In these cases, particularly, receiving counselling from a specialist counsellor was important in enabling them to address their other difficulties.

Another issue which had brought some of the service users interviewed to the counselling service and in which visual impairment was implicated was bereavement. Bereavement is another issue which often impacts negatively on people’s ability to cope with visual impairment as it adds to the burden of loss that people feel. The service user interviews provide further evidence of this, as well as of the role of the ESaC services in helping to address the additional psychological burden that bereavement brings with it. Physical ill health is yet another issue which adds to the stress burden that people with visual impairment experience. This is clearly a big issue for users of the ESaC services, as most of those in the Overall Sample reported other physical health problems as well as their vision-related conditions. The interviews highlight the additional burden that physical ill-health brings, in some cases leading people to need emotional support who have, up until that point, coped emotionally with their situation. Both bereavement and physical ill health are factors which particularly affect older people, often in combination, and which must therefore also be additional considerations in planning services for this client group.

The service user interviews highlight a number of particular aspects of the ESaC services which people found valuable and helpful. The first, reflecting the findings from the Needs and Expectations data, is the value of being able to talk to an impartial listener, someone outside their circle of family and friends who is not going to be judgemental or try to force their own viewpoint on them. People valued being able to unburden to the counsellors in ways that they felt unable to with family members or friends. Following on from this is the importance of the counselling relationship, and the personal qualities of the counsellors. Again, this reflects the fidings from the Needs and Expectations data. It also highlights the value of the humanistic model of counselling adopted by the ESaC counsellors, which places emphasis on the relationship between counsellor and client. Another valued feature of the ESaC services is knowing that it is there for the future, not just for the individual themselves but for others who may also

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benefit from it. Finally, the ESaC services are valued because of the role they have in enabling people to accept and adapt to their visual impairment. For some people this has meant learning to live differently, perhaps adapting their behaviour and plans for the future. For others it has meant learning to envisage new roles for themselves, helping to reconstruct disrupted biographies (Bury, 1982). Some people have been helped just by learning to live in the present or immediate future or by being helped to a more positive attitude by learning that they do not have to cope with their visual impairment on their own. The key theme in all this seems to be that the ESaC services help people to adapt emotionally in different ways according to their particular experiences and style of thinking. This, again, highlights the value of the humanistic model of counselling, with its emphasis on the individual’s capacity for personal growth.

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6 The ‘carer’ perspective: Findings from the supporting relatives and friends questionnaire

The findings from the questionnaire completed by supporting relatives and friends of service user participants in the study are of only limited value because of the small sample size. The questionnaire was sent out to 31 individuals and 7 completed questionnaires were returned. Because of the small sample size very little analysis or generalisation has been possible and thus only very tentative claims can be made. However, the small sample also makes it possible to report most of the responses in full.

6.1 Description of the sampleThe age range of the people who completed the questionnaire was 41-73, with a mean age 60. One individual did not provide details of their age. Six of the seven respondents were female. Three of the sample were spouses/partners of and living with the individual with visual impairment. The other four all lived separately from the individual: two were adult children of the individual with visual impairment; two were in a sibling relationship.

6.2 Impact of visual impairment on daily livingOnly one respondent reported no impact of the person’s visual impairment on their ability to carry out daily living tasks. Three respondents reported that the individual’s visual impairment had affected their ability to carry out practical tasks:

He is unable to see if things about the house or himself are not clean and tidy. This distresses him as he is very particular about cleanliness and personal hygiene.

Everyday tasks are becoming more challenging e.g. getting out and about outside the home. She says that her brain has to work harder to remember where items are.

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Because of sight loss unable to use cooker. Need assistance in and out of bath.

Three mention the impact of not being able to read, which includes having to ask for help in reading:

Mum has lost some confidence. She asks for more help in reading things or doing some daily tasks.

She used to sew a lot and read books.

I have to read out words for him. He cannot see the clocks in the house, difficulty reading.

It is worth noting that the loss of the ability to read is reported more than any other task, underlining its fundamental role in people’s lives.

6.3 Emotional impact of visual impairmentAll seven respondents report that the individual has been affected emotionally by their visual impairment. The main kinds of impact reported are loss of confidence and frustration because of not being able to do the things that they were previously able to do:

My husband has lost his confidence and panics in certain situations especially when there are a lot of people around him.

Very much less confident, temper has increased, gets very frustrated much more often and easily.

She occasionally feels frustrated because she can’t see as well.

Gets fed up when unable to do things for herself.

Two responses suggest a more profound emotional impact:

Sometimes he just feels depressed and upset about his situation and this gets him down in doing things for himself sometimes.

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Since my sister’s sudden death he has been very depressed and complained bitterly about his sight. He has Charles Bonnet Syndrome.

6.4 Impact of visual impairment on relationshipsThree respondents report that the individual’s visual impairment has had no impact on their relationships with her/himself and other family members. One respondent reports that the individual now gets angry with family members. The other three all mention the increased dependency or support needs of the individual:

Travelling on trains and thus to visit is challenging. Holidays have been abandoned. We visit the person more than she visits us. Far more support needed.

Slightly more dependency but just as loving.

[He] is always very grateful for anything we do for him, whereas in the past he helped us and other people.

The last two responses, and the final one in particular, resonate with the theme emerging from the service user interviews of the difficulty for people with visual impairment of having to accept a switching of roles, going from being the one who looked after others to being the one who is looked after.

6.5 Impact of counsellingTwo questions asked about the impact of the ESaC service on the individual with visual impairment. Two respondents reported that they were not aware of any impact on the individual of their attendance at the ESaC service. One respondent reports that the individual had improved as a result of a period of in-patient psychiatric care. Four respondents report changes in the individual’s attitude, outlook or behaviour that they link to their use of the ESaC service:

After seeing a counsellor he talked about his feelings more. He never had suicidal thoughts but gets low in mood at times. I think the chat with the counsellor gave my husband a better outlook on life. Also knowing there was someone besides me to chat to if needed was a good support for him.

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He got to accept his situation and continue to think positive about his life. His behaviour has now improved and he is not too stressed about the situation.

Sometimes quite resigned to what was happening, sometimes upset [during counselling]. But on the whole he has improved emotionally. More understanding. He was able to unload his problems which in turn eased his problems.

She was able to get help and support outside the family which she needed at that time and it appeared to give her a bit more confidence. Mum could discuss things that she wouldn’t tell us as she often doesn’t want to worry us children. Mum did mention that she was able to talk about things with the counsellor.

The common themes which come out of these responses are resonant with themes emerging from the other findings presented in this report. One is the value of being able to talk and unburden to someone neutral ‘outside the family’. Another is the development of a more accepting and positive outlook. A third theme is a reduction in stress or low mood. And finally, the last quote reflects the theme of parents with visual impairment wanting to protect their children that emerges from the service user interviews.

The final section of the questionnaire provided a space for other comments. Where this was filled in respondents mostly reinforced their positive views of the ESaC service:

Knowing there was a counsellor to talk to if he needed to was a great help because my husband has lost a lot of his confidence. Knowing there’s help and where to access it is a great comfort.

I think the counselling was a good thing and has improved his outlook on life.

My sister feels that she has benefitted from the counselling. A major benefit has been the confidence

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gained to continue to use public transport and find her way around London because of the weekly sessions at RNIB.

6.6 SummaryAs stated at the beginning of this section, the conclusions that can be drawn from the supporting relatives and friends data are limited because the sample size was so small. However, being able to reproduce many of the responses in full is valuable in providing some insight into the carer perspective. Insofar as we can make any general claims from the data what we can say is that the findings tend to reinforce the findings from the other qualitative data reported on in this evaluation. The main individual impacts of visual impairment reported are frustration and loss of confidence, with loss of the ability to read the most commonly mentioned practical impact. In terms of the effects of visual impairment on relationships, the key theme is increased dependency and need for support, with the issue of dependency resonating particularly with the findings from the service user interviews. The ESaC services themselves are seen as having a number of positive impacts: improved outlook, reduced symptoms and being able to talk. Again, these resonate with the findings from the Needs and Expectations data and the service user interviews. To sum up, then, the supporting relatives and friends data, although limited, serve to reinforce the findings from the other components of this study.

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7 Discussion and Conclusions

7.1 IntroductionThe mixed methods approach adopted for this evaluation has enabled us to assess the ESaC services from different perspectives and along different dimensions, providing a robust evidence base from which to make claims about the effectiveness of the services and from which to further develop these and similar services in the future. The quantitative CORE data have provided us with vital clinical information about clients of the ESaC services, allowing us to make an assessment of the impact of the service on their psychological well-being. Collected in parallel with the CORE data, the qualitative Needs and Expectations data have given us some useful insights into what it is about the ESaC services that people find helpful. The qualitative interviews with service users provide us with a more in-depth understanding of the lives of people who use the ESaC services, the difficulties they are facing and of how the services have helped them to address those difficulties. The interviews with service providers give us an understanding of how the ESaC services work, how they fit into the Low Vision Services of which they are a part, and what some of the key structural issues have been in the development of the services. The data from the questionnaire with Supporting Relatives and Friends, though modest, provide some useful insights into the wider impacts of visual impairment on relationships, and into how the ESaC services are perceived by those who provide informal support to clients of the services. In this final section we identify key themes that have emerged from the evaluation, discussing their implications for the future of the ESaC services and for wider practice where relevant.

7.2 Levels of psychological distress in the sampleThe quantitative analysis focused particularly on the Full CORE Sample of 35 people who provided data at both assessment times. We found that the age and gender distribution within this group appeared to be reasonably representative of those who consented to take part in the study (98 people in total).

Psychological distress in this sample was relatively high, with mean levels reflecting a distinctly clinical population when

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compared with both early and more recently refined clinical cut-off values (Connell et al., 2007; CORE System Group, 1998; Evans et al., 2002). Levels of distress as measured by the CORE-OM were most marked in the domains of wellbeing (feelings about oneself and the future) and problems (depression, anxiety, physical health, trauma) and lowest in the domains of functioning (general day-to-day functioning, close relationships and social relationships) and risk (to self and others). This suggests that therapeutic input for the visually impaired client group may need to focus most specifically on the former areas.

Levels of psychological distress improved to a marked extent by the end of therapy. This improvement was statistically significant, which suggests that if the ESaC services were to be extended and offered to similar individuals as those in our Full CORE Sample, they would also experience the benefits shown by this study. Perhaps equally important however, is the fact that current trends in the literature highlight the importance of reliable and clinically significant change during therapy. In this context reliability refers to the magnitude of change, which raises the question: ‘Is the magnitude sufficient that we can reject alternative explanations that measured change could have happened by chance or error in the evaluation instrument?’ This, the Reliable Change Index (RCI), establishes reliability in observed change (see Mullin et al., 2006). The second requirement is that the score has changed enough by the end of therapy to lie within what we might expect from the general population rather than the clinical population. Together these criteria represent what Mullin and colleagues (2006) refer to as evidence that clients have ‘recovered’ and, as we have seen, both factors were found to be present in this study. We therefore conclude that the improvement found in psychological distress was both reliable and clinically significant. At the level of the individual we found clinical improvement during treatment in 32 (91%) of the 35 participants in the Full CORE Sample. Of these, 19 (54%) could be said to have ‘clinically recovered’, 13 (37%) had improved but not to the level of ‘reliable improvement’, and 3 (9%) had deteriorated, though to a very small extent.

The findings from both the qualitative NEQ data and from the interviews with service users further reinforce the findings from the CORE data. Because the Needs and Expectations data were collected in parallel with the CORE data at baseline and post-intervention assessment points, they offer a useful ‘before and

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after’ qualitative assessment of change in the sample. These data reinforce the finding that there is a high level of psychological distress in the sample at baseline which improves by the time of post-intervention assessment. At baseline there is strong evidence of high levels of depression, low mood and anxiety amongst service users in the sample. By the time of their post-intervention assessment there is evidence that service users have a more positive outlook and greater clarity of understanding about how they might address some of the difficulties they are experiencing. The findings from the service user interviews further reinforce this interpretation; enabling service users to reflect on their experience in their own words and in more depth than was possible in the NEQs. Several of those interviewed reported very low psychological well-being at the time that they started seeing the ESaC counsellor. All the service users interviewed spoke positively about the ESaC services and some explicitly link their use of the service to significant improvements in their lives, particularly in their outlook, confidence and ability to adapt and cope with life with reduced vision. It is reasonable to suggest that these changes in attitude and thinking might at least partly account for the improvements in CORE scores reported.

7.3 Differences between the research sitesConsidering the marked differences in social and geographic make-up, sample mean CORE-OM scores in the two research sites, Gateshead and London, were found to be remarkably similar at both the baseline and follow-up assessments. There were some suggestions that the severity of psychological distress was a little greater in the London sample and this may well account for the longer duration in therapy of the London participants, especially since equal proportions of clients in each site received emotional support and counselling.

7.4 What service users value about the serviceIt is particularly important to identify and acknowledge what it is about the ESaC services that service users themselves find valuable and helpful. Having findings from both the Needs and Expectations data and from the interview data is useful in helping to identify those themes which have most resonance. Some of these also resonate with findings from the Supporting Relatives and Friends data.

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Being able to talk emerges as perhaps the most significant theme from both the baseline and post-intervention Needs and Expectations data and from the interview data. It is also reinforced in the Supporting Relatives and Friends questionnaire data. More specifically, what service users find important is being able to talk to someone who listens, understands and is impartial or neutral to their situation. Service users feel able to talk in ways that they are not able to talk to family or friends, either because they fear upsetting those close to them, or because they simply do not feel able to talk to others in the way that they do to the counsellors. Being able to talk to someone neutral and non-judgemental is an important element of the counselling process, as it helps to normalise the client’s experience (Perren et al., 2009).

Another key theme in the qualitative data is the importance to service users of the counselling relationship. The value placed upon the personal qualities of the counsellors seems to have played a significant part in the counselling experience, both for those interviewed, and perhaps most interestingly, in the post-intervention Needs and Expectations data. In comparison with the baseline questionnaire data, the post-intervention data reflects a much greater awareness of the presence of the counsellor as listener, balanced against the presence of the service user as talker. This can be interpreted as reflecting a less introspective outlook on the part of service users assessed at post-intervention compared with baseline. It can also be seen as being a reflection of the effectiveness of the therapeutic work being undertaken by the ESaC counsellors. An emphasis on establishing a relationship with the client and working within that relationship is very much part of the humanistic model of counselling within which the ESaC counsellors work. More generally, establishing therapeutic alliance is another important element of the therapeutic process (Cooper, 2005).

Perhaps most importantly, the ESaC services are valued by service users in helping them to accept and adapt to life with a visual impairment. This process takes different forms for different people: learning to live within physical limitations, adjusting life and career goals, learning to adjust to a different sense of self, recognising that they are not alone or just learning to focus on the present. This process can usefully be understood sociologically in terms of the reconstruction of a ‘disrupted biography’ associated with chronic illness (Bury, 1982). It involves developing not only

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different attitudes or ways of thinking about the self, but also different strategies which enable the individual ‘to mobilise resources and maximise favourable outcomes’ (Bury, 1991: 462). Again, the value placed by service users on having been enabled to adapt is a reflection of the effectiveness of the ESaC intervention. It is in enabling people to come to terms with living with a visual impairment that the strength and appropriateness of the humanistic model of counselling adopted by the counsellors can most clearly be seen, with its emphasis on the capacity of the individual for personal growth and development (Joseph, 2010). We would suggest, therefore, that consideration be given to formally incorporating the adoption of a humanistic approach into the ESaC model.

7.5 Organisational issues

7.5.1 ReferralsWhen the ESaC pilot project was first being developed it was thought that referrals to the services would develop quickly and that waiting lists might even develop. It became clear during the early months of the pilot and of the evaluation that referral rates were not developing as quickly as anticipated. This led to considerable effort, particularly on the part of the counsellors themselves, into developing the service and devising creative methods of engagement, including the introduction of screening calls to follow-up people who have attended for routine low vision appointments. Analysis of referral statistics at the end of the evaluation shows that referral rates have reached a healthy level, comparing favourably with those reported in the RNIB Bristol Counselling Project (Nicholls, 2005).

The majority of referrals to the ESaC services have come from within the LVSs, particularly from those professionals providing what can be understood as social support (rehabilitation workers, social workers and supporting people workers). Although highly supportive of the introduction of the counselling service, LVS optometrists refer relatively infrequently although they report that providing emotional support is a routine part of their work. It might be that this itself is a reason why they refer relatively infrequently: they feel that they are providing sufficient emotional support themselves. It might also be simply be that it is through contact with LVS staff providing ‘social’ rather than clinical support that

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service users are more naturally referred for counselling. Given that most of those who attend for low vision assessments see both an optometrist and a rehabilitation worker, the low rates of referral from optometrists do not, perhaps, need to be seen as a cause for concern. However, in setting up further ESaC services within low vision services consideration should be given to ensuring that low vision workers are clearly aware of the limits of their own role in providing emotional support to service users.

Opportunistic referrals from LVS staff have been particularly important, and represent one of the distinctive features of the services. From the Needs and Expectations questionnaires it is clear that for a small but significant proportion of service users, the main reason they came to the service was because they were referred by a rehabilitation worker. In some cases LVS staff work quite hard to ‘normalise’ the idea of the counselling service to individuals whom they recognise as having emotional support needs that they feel would benefit from the professional input of the counsellor. This process often involves the deployment of strategies for introducing the opportunity of ‘talking to someone’ to people who may not be immediately open to the idea of seeing a counsellor. In an NHS counselling setting such strategies might, quite rightly, be viewed as somewhat dubious. They would also be seen as unnecessary in circumstances in which waiting lists are prevalent and only individuals who are actively seeking counselling will end up receiving it. However, given that the ESaC services are providing not only formal counselling but also emotional support, the use of such pragmatic strategies seems to be quite in keeping with the ethos and remit of the services. It potentially opens the services up to people who might be initially resistant to the idea of counselling but who might ultimately receive great benefit from it. It should be said that these strategies, including the use of screening calls, have been deployed partly in response to the perceived need to increase referrals. If in the future referral rates and caseloads increase to the point where the services are carrying waiting lists, such strategies may be deemed to be unnecessary. Indeed, at the time of reporting, the London counsellor’s caseload had reached a level at which she was no longer able to prioritise screening calls and consideration was being given to a trained volunteer undertaking these calls in the future. It would seem from the evidence of both the qualitative and quantitative elements of this study, that actively promoting the ESaC services to users of the low vision services has brought

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valuable therapeutic benefits for people who might not otherwise seek counselling and is an approach that should be continued for this reason.

Some anticipated referral sources, notably GPs and hospital eye clinics, remain low providers of referrals. The main source of external referrals to the Gateshead service is the Eye Clinic Liaison Officer at Newcastle RVI. As there is currently no ECLO at Moorfields Eye Hospital, the main specialist eye clinic for users of the London low vision service, this limits the number of potential referrals that might come directly from hospital eye clinics. This is clearly an issue that is outside the control of the ESaC services, but highlights the current disparity across the UK in the employment of ECLOs, who are seen as providing a vital role in signposting and referring people to services, as well as providing emotional support (McBride, 2000; McBride, 2001; Norwell & Hiles, 2005).

Increasing referrals from GPs may also be an area of work that is beyond the scope of the ESaC services as they currently exist, with a single part-time counsellor employed at each site. There are structural factors that are likely to make any significant increase in referrals from GPs difficult to achieve. One is the increased provision of generic counselling services available through primary care resulting from the rolling out of the Department of Health’s Improving Access to Psychological Therapies (IAPT) programme. Another is the difficulty in raising and maintaining the profile of a single specialised counselling service across the hundreds of GP practices in the catchment areas for the two ESaC services. However, work might be undertaken with commissioners (at present through local PCTs) to address this issue. And although in terms of the general population IAPT can be seen as a positive development, it is unlikely that the counsellors employed to work in these services will have the necessary knowledge of low vision issues to make them sensitive to the particular and changing needs of this client group.

The rates of self-referral to the ESaC services are also relatively low. Work has already been undertaken by the counsellors to raise awareness of the service amongst community and voluntary organisations relevant to this client group, but further work to publicise the services amongst non-specialist community

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organisations might be considered in order to increase the accessibility of the service to individuals or groups who might not readily be accessing other services.

7.5.2 FlexibilityOne of the defining features of the ESaC services is flexibility in the way in which the services seek to engage clients and potential clients. There are various aspects to this flexibility of approach, including the avoidance of counselling terminology when introducing the service to people, the use of telephone counselling and home visits, flexibility in the number of counselling sessions offered to people and following up people who do not arrive for sessions. Another essential aspect of this flexibility is offering emotional support as well as counselling. This is particularly important in providing a service which meets the changing emotional support needs of people throughout the sight loss journey. Being able to provide fairly ‘light touch’ emotional support at an early stage may be sufficient to enable some people to cope with the emotional impact of visual impairment and to prevent the development of more entrenched emotional and behavioural problems later on that may need more intensive counselling. Fairly low level emotional support may also be all that some individuals are able or willing to accept, particularly older people who may be resistant to the idea of counselling but more comfortable with the idea of ‘just talking’ to someone. Knowing that the service is there may also increase the likelihood of them accessing the service for more in-depth counselling (or just for further emotional support) if they are in need of it at a later stage.

The services also offer flexibility in terms of the focus of counselling: although they are services for people with vision-related emotional issues, these are not always the only or even the main issues covered in the course of counselling. It is important to the holistic approach adopted by all the counsellors that the broader context of people’s lives is taken into account.

It is their flexibility that makes the ESaC services distinctively different from generic counselling provided through primary care which is marked by its waiting lists, high levels of demand, limited number of sessions offered, and the expectation that clients will ‘opt in’ to counselling and be highly motivated. Perhaps most importantly of all, what generic counselling also cannot offer is the

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specialist knowledge of how visual impairment impacts on people’s lives that is provided by the ESaC services.

There is strong evidence from the service user data that this flexibility has been highly important, particularly in drawing people into the services who might not otherwise have sought counselling but who have gained significant benefit from it. However, as already discussed, there is a question about whether quite so much flexibility would still be able to be offered if the ESaC services were running at full capacity and with waiting lists.

7.5.3 Integration of ESaC into low vision servicesFindings from the interviews with service providers in this study underline the fact that emotional support is a fundamental element of all low vision work (Fenwick et al., 2009; McBride, 2005). The introduction of the ESaC service into the low vision service at the two sites is something that is generally viewed as a very positive and much needed development, by service providers as well as by service users. Having a specialist counsellor to refer individuals who have an immediate counselling need on to is perhaps the most important aspect of this. The nature of the work of low vision services is such that some individuals will be seen at a point at which they are in obvious and immediate emotional distress. Having a counsellor on the same site is extremely valuable, as is the fact that at present the service is running without a significant waiting list, enabling people to be seen quickly. The flexibility of the way in which the counsellors work, e.g. making screening calls and offering emotional support as well as counselling, also helps to increase the accessibility of the service, which not only raises awareness of the service in case of future need, but may also have a useful protective effect for some people.

Another valuable aspect of the integration of the ESaC services into low vision services is the possibility it creates for systemic work with service users around certain areas, particularly white cane use or other rehabilitative activities. There are obvious psycho-social barriers to the use of a white cane which can make learning to use it very challenging. These barriers are in large part due to negative and disabling social attitudes towards impairment and to the white cane as a symbol of impairment (Ben-Moshe & Powell, 2007; Schillmeier, 2008). However, with integrated emotional and practical support some people can be enabled to gain significant benefit from learning to use a white cane in terms

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of improved mobility. Although relatively little such systemic work seems to have been undertaken in the services so far, it is an area of activity that would make the services stronger and more distinctive.

7.6 Limitations of the studyFor the quantitative analysis, the most pressing difficulty was presented by the relatively small size of the Full CORE Sample. However, a sample size calculation early in the design stage of the study had indicated that a minimum of 34 people would allow sufficient power for the statistical analyses envisaged and in the event a sample of 35 was attained. We can therefore be reasonably sure that the essential analyses that have been conducted can be relied upon to have demonstrated significant change where this occurred. However, 35 remains a small number and because only a minority of participants received emotional support rather than full counselling, full statistical analysis comparing the two approaches was not feasible.

The limited sample size also meant that specific elements of the therapy offered at each research site could not be explored. We noted that the duration of therapy and number of planned sessions were both significantly greater in the London site. This may simply reflect the greater need in that area, though further research into this would be especially useful for the future provision of services in an environment of limited financial resources. With a larger sample and more in-depth examination of therapeutic input, it may, for example, be possible to identify more accurately precisely which aspects of counselling are most efficacious with this particular client group.

We must also consider the limitations imposed on the study by the absence of a control group. Having data for a control or comparison group would have been of value in helping to establish a definite causal link between the improvement in functioning observed in clients of the ESaC services and the intervention itself. The study was originally designed to have an ‘intervention group’ consisting of clients who had used the new ESaC services, and a ‘control group’ drawn from the waiting lists for the two services if this was considered feasible. Options other than using the waiting lists as a source of the control group sample were also considered, such as using people with similar sight problems who were

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attending services other than the ESaC services. However, this was dismissed on the grounds that the control group should be as similar as possible to the intervention group in everything but receipt of the intervention, so it was decided that the closest natural comparison group would be those who were on the waiting lists for the ESaC services. As has already been discussed, it was originally anticipated that demand for the services would be such that there would be a waiting list, with clients waiting for three or four weeks before receiving a service, and the plan was to make a baseline CORE assessment at the point at which they entered the waiting list followed up by further assessments at the first and final sessions of their therapy. In the event, the rates of referral to both ESaC services were slower than expected and no waiting list developed. The plan to use a control group therefore had to be dropped.

Despite the absence of a control group, however, the design, as it stands, is a methodologically robust one with which we have been able to establish the likelihood of an association between the intervention and the improvement in clients’ mental health as measured by CORE. Although the CORE data do not demonstrate a causal relationship that is beyond question, combined with the qualitative data they do provide fairly persuasive evidence that it is the ESaC intervention that is the relevant factor in bringing about change. For a definite causal link to be established a randomised controlled trial (RCT) would need to be conducted.

The slower than anticipated rates of recruitment to the services and thus to the evaluation also had an effect on the qualitative component of the study. It meant that the number of service users who might potentially be included in the interview sample was lower than anticipated. It had been hoped that 18 interviews might be conducted in autumn 2009. In the event it had only been possible to recruit and conduct 10 interviews with service users by the end of 2009, with a further four interviews being conducted in spring 2010. This has not impacted negatively on the robustness of the evaluation, as a sufficient level of saturation was achieved with the sample of 14. That is, no new themes were emerging after analysis of the 14 interviews.

The lower and slower than hoped for rate of recruitment of service users to the interview sample also meant that the original plan to collect data from supporting relatives or friends of ESaC service

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users had to be adjusted. In the original study protocol it had been intended to conduct a focus group interview at each site with up to 24 supporting relatives of friends of individuals who had taken part in a qualitative interview. In the event, this method proved to be unfeasible, due to the very small pool of participants to draw from. Instead, the short ‘supporting relatives or friends’ questionnaire was devised and sent out via individuals who had been invited to take part in the qualitative interviews. Whilst this questionnaire has produced some useful insights, methodologically its value is limited because only 7 questionnaires were returned.

In reflecting on the various limitations to the evaluation resulting from the lower than anticipated rates of referral it is worth noting that the rates of referral to the ESaC services in this pilot project have been somewhat higher than those reported in RNIB’s Bristol Counselling Project (Nicholls, 2005). It could be argued that the original plans for the ESaC pilot, and thus for the evaluation, were based on unrealistic rates of usage, leading to the creation of pressures both for the services and for the evaluation which could have been avoided if more realistic expectations of the development of the services had been adopted.

One issue that has been highlighted by the counsellors during the course of the evaluation is the exclusion from the study sample of the small but nonetheless significant number of service users whom they considered it inappropriate to recruit, mainly because the individuals displayed marked cognitive impairment (n=7). The result of this is that a group of service users who were experienced by the counsellors as having some of the most complex and challenging needs have been excluded from the evaluation. Recruitment of such individuals to the evaluation was deemed by the counsellors not to be possible, due to difficulties in obtaining informed consent and/or in administering the questionnaires. It is not clear how the experience of these individuals could have been meaningfully captured in the study. One way might have been only to include them in the qualitative interview sample, although the issue of obtaining informed consent might still have been problematic. For the purposes of this study it must be sufficient to note that this is a small but significant aspect of the work of the ESaC services that should be borne in mind in the development of similar services in the future.

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Another potential limitation of the research is the dual role of the counsellors in relation to the questionnaire data. As reported in the methods section, the counsellors in each site were responsible for collecting both the CORE-OM and the qualitative questionnaire data. Although both questionnaires were designed to be self-completed, in most cases the participants completed the questionnaires with the help of the counsellors i.e. the counsellor read out the questions and filled in the questionnaires with the participant’s responses. As already discussed, although there is no suggestion that the counsellors misrepresented the views of service users, they were mediating the research process, and this must be seen as having had some effect on the nature of the data. The fact that the counsellors themselves were required to write down their own clients’ views of the service that they themselves were providing must be seen as being likely to have had some effect on the views that were expressed, or at least on the way in which they were expressed. Whilst we fully defend the use of this approach in this study, we suggest that for future research with visually impaired people, consideration should be given to the development of the CORE and other questionnaires in more accessible formats that would give the option of self-completion.

7.7 Future researchThis study has indicated that attendance at one of the ESaC services is strongly associated with recovery from marked psychological distress in people with moderate visual impairment. The next step in research terms would be to examine the nature of the causal relationships behind this finding, specifically whether it can be demonstrated that attendance at the service causes measurable improvements in wellbeing. To test this hypothesis a randomized controlled study would be required, with a considerably increased sample size relative to the present study, and a control group who receive at best ‘treatment as usual’ and a matched intervention group who receive the ESaC service.

Another important stage in the development of a strong evidence base for the ESaC model would be to carry out a longitudinal study to investigate whether the improvements in well-being shown in this study are evident several months after contact with the service has ended.

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A number of other issues emerge from this study, particularly from the qualitative findings, as being worthy of further investigation. As mentioned above, one issue which could not be addressed in any depth in this study is the impact of visual impairment on relationships with those who provide care and support to people with visual impairments. There are clearly issues around the ways in which visual impairment impacts upon key caring and support relationships, and these issues are of relevance to emotional support and counselling services working with people with visual impairment. This should form the focus of a separate study.

Another issue which emerges from the qualitative findings as worthy of further investigation is that of white cane use. In particular it would be useful to explore in depth the attitudes of people with visual impairment towards the use of white cane, its perceived benefits as well as barriers to its use, and to consider the implications of these findings for low vision services. Such an investigation would be of particular value in informing the further integration of emotional support and counselling into low vision services. One key element of the ESaC services that would benefit from further research is how the dual model of emotional support and counselling works in practice. As already discussed, the relatively small sample size in this study did not permit comparison of the impact of the two forms of intervention on clinical outcome. A larger study would therefore permit such analysis. However, more detailed qualitative research is also needed that focuses specifically on how the two forms of intervention are used by different counsellors. Findings from such investigations would be of value in further developing and rolling out the ESaC model.

Finally, the use of the NEQ in parallel with the CORE-OM has been a particular strength of this study, helping to both corroborate and shed more light on the CORE results. It is suggested that this combined quantitative and qualitative approach could be usefully replicated in future evaluative research in counselling settings, and potentially even in routine clinical practice.

7.8 ConclusionsThe evaluation has demonstrated that the ESaC services are serving a client group that clearly represents a clinical population.

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It has also shown that by the end of their course of counselling users of the services exhibit a significant reduction in their level of psychological distress to the extent that they can be said to have recovered. This change is statistically significant, which means that it can be confidently claimed that if the services were to be extended and offered to a similar client group similar levels of improvement would be shown. Qualitative findings from the evaluation reinforce the quantitative findings, indicating some of the ways in which service users have received benefit from the ESaC services and which may help to explain the levels of clinical improvement.

The qualitative findings from the evaluation also show what features of the ESaC services are most highly valued by service users. Being able to talk openly to someone who is neutral and professional and the quality of the personal relationship with the counsellor are two of the most important features of the services. A third is the role that the services play in enabling people to come to terms with and adapt to life with a visual impairment. All three of these features are very much in keeping with the humanistic model which the ESaC counsellors work within, and highlight the importance of building a humanistic approach into the ESaC model.

A number of organisational issues emerge from the evaluation as being important to the way in which the ESaC services have developed and continue to develop as part of an integrated low vision service. One is that the rates of referral into the services have been slower to develop than originally anticipated. However, these rates compare favourably with that reported in the Bristol Counselling Project, the main predecessor of the ESaC services. Another issue is that the majority of referrals have come from within the low vision services of which the ESaC services are a part. Although there is still further work that could be done to promote and develop the profile of the services, the fact that the services are running near capacity primarily through internal referrals is testimony to the level of need for emotional support and counselling that exists in low vision services. Opportunistic referrals from low vision service staff are an important feature of the service, drawing people into the services who might otherwise not have sought emotional support or counselling, but who go on to receive great benefit from it. Another feature of the services which has been crucial to engaging people has been their

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flexibility, part of which resides in the dual model of emotional support and counselling that was designed into the services from the outset. It is this flexibility which marks the ESaC services out as distinctively different from counselling available through primary care and which also makes the services particularly suitable for people with visual impairments, whose emotional support needs change over time as their visual function changes and the circumstances of their lives change.

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