Evaluation of Emotional Support and Counselling Within an Integrated Low Vision Service

Evaluation of Emotional Support within an Integrated Low Vision Service

Evaluation of Emotional Support and Counselling within an Integrated Low Vision Service

Final Report

August 2010

Authors:

Dr Suzanne Hodge

Dr Wally Barr

Health and Community Care Research Unit

University of Liverpool

ThompsonYatesBuilding

Brownlow Hill

Liverpool L69 3GB

Dr Paul Knox

Directorate of Orthoptics and Vision Science

School of Health Sciences

University of Liverpool

ThompsonYatesBuilding

Brownlow Hill

Liverpool L69 3GB

Evaluation of Emotional Support within an Integrated Low Vision Service

Acknowledgements

We 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.

ESaC Project Team

Susannah Badger

Anita Boguslawski

Louise Bowen

Eleanor Cain

Susan Coulson

Stuart Duncan

Sharon Haffenden

Amanda Hawkins

Pamela Lacy

Martina Leeven

Pritti Mehta

Mary Norowzian

Rebecca Sheehy

Philippa Simkiss

ESaC Research Advisory Group

Yasmene Alavi London School of Hygiene and Tropical Medicine

Peter BowerUniversity of Manchester

Marie DewhurstRoyal Liverpool and Broadgreen University Hospitals Trust

Angela McCullaghPocklington Trust

Helen ProsserUniversity of Salford

Dawn ScottBradbury Fields

Jeanette ScottIndependent service user member

List of abbreviations

AMDAge-related Macular Degeneration

CORE-OMClinical Outcomes in Routine Evaluation – Outcome Measure

DAISY Digital Accessible Information System

ECLOEye Clinic Liaison Officer

ESaCEmotional Support and Counselling

LVSLow Vision Service

MDMacular Disease

NEQNeeds and Expectations questionnaire

PCTPrimary Care Trust

RNIBRoyal National Institute of Blind People

SISight Impaired (registration category previously termed Partially Sighted)

SSISeverely Sight Impaired (registration category previously termed Blind)

Contents

Executive Summary

1Background

1.1Introduction

1.2The case for counselling in low vision services

1.3Description of the ESaC services

2Methods

2.1Aims and objectives of the evaluation

2.2Study design

2.3Issues in setting up the evaluation

3Quantitative findings

3.1Referrals to the ESaC services

3.2The different service user samples

3.3Referral sources

3.4Eye conditions

3.5Other physical health conditions

3.6Characteristics of the Full CORE Sample

3.7Therapeutic input over the duration of the study

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

3.9Summary of quantitative results

4Service users’ needs and expectations of the ESaC services

4.1Introduction

4.2The baseline assessment of needs and expectations

4.3Post-intervention assessment of needs and expectations

4.4Summary

5Findings from the Qualitative Interviews

5.1Introduction

5.2The ESaC way of working

5.3Embedding the ESaC services within low vision services

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

5.5Valued features of the ESaC services

5.6Summary

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

6.1Description of the sample

6.2Impact of visual impairment on daily living

6.3Emotional impact of visual impairment

6.4Impact of visual impairment on relationships

6.5Impact of counselling

6.6Summary

7Discussion and Conclusions

7.1Introduction

7.2Levels of psychological distress in the sample

7.3Differences between the research sites

7.4What service users value about the service

7.5Organisational issues

7.6Limitations of the study

7.7Future research

7.8Conclusions

8References

Evaluation of Emotional Support within an Integrated Low Vision Service

Executive Summary

Background

This 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.

Aims

To explore the impact of emotional support and counselling services provided as part of an integrated low vision pathway;
To provide evidence to support policy makers, commissioners and practitioners for the future development and delivery of low vision services.

Data collection

A 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 data

Basic 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.

CORE-OM

The 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 questionnaires

A 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 users

Semi-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 providers

Semi-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.

Questionnaire with supporting relatives and friends

A 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.
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 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 working

The 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 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 services

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

Emotional support inlow 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 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 services

The 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 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 services