An exploration of eye care users’ experiences for solutions to

improve public and patients’ access to eye health care services

A dissertation submitted in partial fulfilment
of the requirements for the degree of
Master of Public Health

at
School of Health and Related Research
By
Dedipya Immadisetty
September 2017
Supervisors: Jennifer Read & Surinder Bangar
Module HAR679: 45 credits

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 Declaration
[Dissertation Module: HAR679]
Project title: An exploration of eye care service users’ perceptions for solutions to
improve public access to eye health care services

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 Abstract
Background:
A preliminary literature review indicated that over six million older adults over the age of 65 suffer from
complete or partial blindness in the United Kingdom. Most eye conditions are preventable, but the
public are not aware of age-related eye conditions, benefits of regular eye tests; and some older adults
are not able to access early treatments. Additionally, eye care service users across the country faced
barriers before and after diagnosis; and recommendations for policy and practice were studied from
various qualitative research studies to understand the local Sheffield context.
Methods:
The aim of the research project was to find out solutions and recommendations from eye care service
users to improve existing eye health services. Two focus groups were conducted with the visually
impaired clients who were over the age of 65 years at Sheffield Royal Society for the Blind. The
research study explored their experiences faced before and after their diagnosis, and their solutions to
improve public access to eye care and support services. Thematic analysis was carried out on collected
data.

Findings:
The themes found within the data before diagnosis were ‘information’, ‘communication’, and ‘public
awareness of eye health’. Themes after diagnosis were ‘referral process from GPs to eye care
specialists’, and ‘adaption to life change’. Lastly, there were policy level and change/improvement
suggestions from clients’ perspectives. At policy level, it includes ‘share & educate about update
information of eye health and assistive technology to public and patients’. In terms of changes or
improvements, ‘eye care and support services should be easily accessible for public and patients’.

Discussion:
There were similarities in eye care service users’ perspectives in the current research as well as in the
literature review. Recommendations for future research were as follows: firstly, a participatory research
should be conducted that will involve eye care professionals and volunteer organisations to investigate
their interactions with patients and the public. Secondly, this research project provided first hand
evidence that implied a need of further improvement in the current eye care and support services. Lastly,
important stakeholders and authorities should take charge of promoting and advocating early prevention
interventions.

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 Acknowledgement
First, I would like to thank the Department of School of Health and Related Research at The University
of Sheffield for giving me permission to conduct primary research by providing ethical approval.
Secondly, I am grateful for having wonderful supervisors, Jennifer Read and Surinder Bangar for
encouraging and supporting me during my dissertation project. I could not have asked for better
supervisors than them as they have given me their valuable time for monthly meetings to provide
feedback and to discuss my progress. Last but not least, I thank The Sheffield Royal Society for the
Blind from the bottom of my heart for giving me this opportunity to not only to develop my public
health skills, but also for valuing my idea that could potentially make a positive impact in the
community. Additionally, I thank the SRSB clients who have participated in the focus group discussions
which would have been incomplete without their insightful perspectives, stories, experiences, opinions,
and suggestions. Eye care service users’ perspectives mattered and echoed their thoughts, feelings, and
emotions when they experienced challenges before and after diagnosis. I am thankful for their
cooperation and for agreeing to take part in the study.

Above all, I thank my Mom, Dad, Sister, and close friends for constantly encouraging me to do the best
in my career as well as supporting me during hard times throughout my dissertation project. In addition,
I thank my sweet lord, Krishna who is The Supreme Personality of Godhead for giving me strength and
ability to pursue my Master’s degree in Public Health in England. Importantly, I am grateful to the
International Society for Krishna Consciousness (ISKCON) devotees in Sheffield who appreciated my
dissertation project, and they always encouraged me to serve humanity with love and compassion. I
would not have successfully completed my dissertation without emotional support from all these people
who are dear to me in my life.

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 Table of Contents
Abstract .............................................................................................................................. 3
Acknowledgement............................................................................................................... 4
Chapter One: Introduction ............................................................................................... 7
1.1 Background .......................................................................................................... 7
1.2 Study setting ......................................................................................................... 9
1.3 Visual simulation of eye conditions ..................................................................... 9
1.4 Justification for the study ................................................................................... 10
1.5 Focus of the research.......................................................................................... 10
1.6 Research objectives ............................................................................................ 10
Chapter Two: Literature Review .................................................................................... 11
2.1 Introduction to the literature review .................................................................. 11
2.2 Literature review methods ................................................................................. 11
2.3 Literature review findings .................................................................................. 13
2.4 Key themes ........................................................................................................ 15
2.5 Limitations/gaps in the literature ....................................................................... 16
2.6 Summary ............................................................................................................ 16
Chapter Three: Methodology .......................................................................................... 17
3.1 Research design .................................................................................................. 17
3.2 Target population ............................................................................................... 17
3.3 Sampling ............................................................................................................ 18
3.4 Sample size......................................................................................................... 18
3.5 Recruitment strategy .......................................................................................... 18
3.6 Informed consent................................................................................................ 19
3.7 Data collection ................................................................................................... 19
3.8 Ethical approval ................................................................................................. 20
3.9 Analysis .............................................................................................................. 20
3.10 Validity ............................................................................................................. 20
3.11 Reflexivity ....................................................................................................... 20
Chapter Four: Findings ................................................................................................... 21
4.1 Participant characteristics .................................................................................. 21
4.2 Focus group findings .......................................................................................... 22
4.2.1 Barriers before diagnosis ............................................................................... 23
4.2.2 Barriers after diagnosis ................................................................................... 24
4.2.3 Solutions/Suggestions ..................................................................................... 28
4.3 Summary findings .............................................................................................. 30

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Chapter Five: Discussion ................................................................................................. 31
5.1 Introduction to research objectives .................................................................... 31
5.2 How to improve public access to eye care services? ......................................... 31
5.3 How to improve patients’ access to support services? ...................................... 33
5.4 Strengths of the research .................................................................................... 35
5.5 Limitations of the research ................................................................................. 35
5.6 Recommendations for future research ............................................................... 35
Chapter Six: Conclusion ................................................................................................. 36
References.......................................................................................................................... 37
Appendices
1. Ethical Approval letter ............................................................................................ 40
2. Information sheet ..................................................................................................... 41
3. Consent form ........................................................................................................... 43
4. Focus group topic guide ........................................................................................... 45
5. Search Strategy for literature review ....................................................................... 46
6. Literature review articles ........................................................................................ 46
7. Risk assessment .................................................................................................................................. 48
8. Thematic coding ................................................................................................................................. 51

List of Tables
Table 2.1 CASP& AACODS checklist ............................................................................. 14
Table 4.1 Participant characteristics ................................................................................... 21
Table 5.2 What led people to different services before diagnosis? ................................... 32
Table 5.3 What types of services used by patients after diagnosis? ................................ 33
List of Figures
Figure 2.1 Prisma Diagram ................................................................................................ 13
Figure 4.1 Barriers before diagnosis ................................................................................. 22
Figure 4.2 Barriers after diagnosis .................................................................................... 24
Figure 4.3 Solutions/Suggestions from clients .................................................................. 28

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 CHAPTER 1
INTRODUCTION

This chapter describes the background and rationale for the project. Also, the research
focus and aims are established along with a brief description of the study setting and visual
simulation of eye conditions.

1. 1 Background
Why is sight loss considered as a public health issue? Recent research identified that currently more than
six million people in the United Kingdom are living with uncorrected refractive error and sight-
threatening conditions, and approximately two million people have complete or partial sight loss
(Simkiss et al. 2016; Royal National Institute for the Blind 2012; Horner 2013). During the past ten
years, interventions were designed to educate older people about eye health, but most of them did not
attend routine eye-examinations, and diabetic screenings for early prevention due to a variety of factors
such as burden of cost, symptom led demand, unaware of age-related eye conditions before diagnosis
(Dickey et al. 2012; Muller et al. 2006). Even after diagnosis, most patients were not able to understand
the cause of various eye conditions, and experienced difficulties in communicating with their GPs,
opticians, and eye care specialists, and lacked support from the hospital (Douglas et al. 2010b).

This preliminary background study provided sufficient information to the researcher to understand the
inequalities among the older population to access and utilise different eye care services in Sheffield. In a
recent health needs assessment, public health researchers identified that 30% of Sheffield’s population
who were at a high risk of developing age-related eye conditions were aged 65 years and over, this
evidence suggested that 50% of sight loss in the UK was due to preventable and treatable causes (Horner
2013). Certain common eye conditions such as Age Related Macular Degeneration (ARMD), Retinitis
Pigmentosa (RP), Glaucoma, Diabetic Retinopathy, Nystagmus (wobbly eye syndrome), cataracts, sight
loss due to stroke, and Charles Bonnet Syndrome have been shown to be due to age related eye
conditions that could be prevented or reduced early diagnosis (Royal National Institute for the Blind).

1.2 Study Setting

Sheffield Royal Society for the Blind (SRSB) is centrally located near the city centre, and the
organisation provides support for anyone with partial or complete sight loss. SRSB provides their clients
with a variety of support services that include a reading club, gardening club, telephone services,
Sheffield talking news, games and activities daily, and many more. The researcher for this project was
on a placement a few months prior conducting focus groups discussions with clients who attend SRSB
on Tuesdays.

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1.3 Visual simulation of eye conditions
This section describes visual simulation of some age-related eye conditions that might affect a person’s
sight. In Sheffield, the majority of the clients who use Sheffield Royal Society for the Blind (SRSB)
services are diagnosed with one or multiple age-related eye onditions. These eye conditions mentioned
below are common in older population as their central part (macular) of the retina is damaged resulting
in sight loss. The central part of the retina in the eye is used to see fine details for reading, writing,
driving, recognising faces, and colors is either partially or completely affected due to ageing (Royal
National Institute for the Blind 2012).

a). 20/20 Vision (Sheffield Royal Society for the Blind 2017)

b). Age Related Macular Degeneration (Sheffield Royal Society for the Blind 2017)

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c). Retinitis Pigmentosa (Sheffield Royal Society for the Blind 2017)

d). Glaucoma (Sheffield Royal Society for the Blind 2017)

e) Diabetic Retinopathy (Sheffield Royal Society for the Blind 2017)

f). Cataracts (Milauskas Eye Institute 2015)

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1.4 Justification for the current study
The current study is needed to identify solutions to improve public and patients’ access to eye care and
support services. This dissertation project hopes to let policy makers, stakeholders, Sheffield City
Council, the University of Sheffield, and Sheffield Royal Society for the Blind know about the findings
for further research in this topic, and to improve services for visually impaired people in Sheffield.

1.5 Focus of the research

The aims and objectives of this research are developed after reviewing the literature and identifying gaps
in the eye care services in Sheffield. The research focuses on the underlying meaning behind eye care
service users’ experiences before and after diagnosis to discover new recommendations for policy and
practice.

1.6 Research Objectives

1. To understand barriers faced by eye care service users before diagnosis to improve public access
to eye health care services.
2. To understand barriers faced by eye care service users after diagnosis to improve patients’ access
to support services.
3. To discover what eye care services did or did not benefit the users for new solutions to resolve
the challenges faced by patients and public.

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 CHAPTER 2
LITERATURE REVIEW

A literature review was done in a systematic way to explore eye care service users’ perspectives,
use of assistive technology by visually impaired, challenges faced, and interventions developed
across the United Kingdom. Search strategies used were described, and the finalised journals
were thoroughly checked using CASP (Critical Appraisal Skills Programme) and AACODS
(Authority Accuracy Coverage Objectives Date Significance) checklists followed by key themes
from the literature review.

2.1 Introduction to the literature review

The current dissertation project aimed to explore the needs of older adults with sight loss in a local
Sheffield context. The researcher conducted a literature review to understand the challenges, coping
mechanisms, and experiences of older people diagnosed with different eye conditions that caused sight
loss across the United Kingdom. Some of the highlighted topics that were considered by the researchers
across the UK were knowledge of eye diseases, experiences during eye examinations, and reasons for
not having an eye test, challenges faced before and after diagnosis (Douglas et al. 2010; Adult UK eye
health and sight loss pathway 2012).

2.2 Literature review methods

The researcher used SPICE (Setting, Population, Intervention, Comparator, Evaluation) framework
when conducting literature review (Booth, 2003). For this qualitative study, SPICE framework was used
because the researcher was particularly interested in visually impaired individuals only living in United
Kingdom. Also, this framework helped the researcher to study perspectives among older adults with
sight loss across the country. In addition, all kinds of interventions that were targeted to visually
impaired helped the researcher to understand quality of the care provided from various qualitative
research studies done across United Kingdom. Next, the framework had comparison component to
identify studies that focused on adults who were not aware or used eye care services. This helped the
researcher to understand why this population were not able to use the services. Lastly, the researcher
could evaluate the interventions found in the literature review by using qualitative check list tools. The
researcher used certain phrases when using SPICE strategy:

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Setting- United Kingdom
Population & perspective- Older adults above 65 years with sight loss
Intervention- Education awareness, cost-effective eye care services, other current effective
interventions.
Comparator- Older adults who are not aware of available services
Evaluation- Evaluating the interventions on how well they performed
● Accessibility
● Quality
● Improvement

Aims of the literature review

The aim of the literature review is to understand the gaps in eye care services across UK, and the
inclusion and exclusion criteria are stated below to narrow the search.
Inclusion Criteria:
● Primary research relating to eye care services
● Older population over the age of 65 years
● Research done in United Kingdom
● English language only
● Published and grey literature
● 2007 onwards.
Exclusion Criteria:
● Any research not relating to eye care services
● Population age under 65 years old
● Not English language
● Pre- 2007
● non-UK studies
The inclusion criteria only focused on primary research related to eye services because the researcher
was trying to understand service user perspectives among older people with sight loss, and any literature
other than eye health would be irrelevant. Secondly, literature was narrowed down to only in United
Kingdom to assess the difficulty of accessibility to eye care services among visually impaired people.
The researcher was then able to gather information on problems or challenges faced among older adults.
This helped the researcher to conduct focus group discussions at a blind organisation in Sheffield,
England to identify solutions or ideas from service users’ experiences to improve access to eye care
services.

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Additionally, all the published and grey literature was filtered to English only because of academic
credibility and to publish for further research. The published and grey sources were part of the criteria to
retrieve all the information nationally and locally on eye health promotion, policies on improving access
to eye care for older adults, and other relevant information on eye health interventions. Finally, this
research focused on what interventions have been done in the last 10 years, and the most up to date
information on whether eye health interventions have benefited visually impaired people in any way
2.3 Literature review findings
The Prisma diagram below gives a detailed account of a few relevant studies identified around the topic
area. The researcher had to exclude articles after reading abstracts, full articles, and after using critical
appraisal checklists. Finalised articles were carefully critically evaluated before use for this research.
The researcher obtained a total of 86 articles from all the databases listed below and other grey literature,
but out of those only 15 articles were used in this literature because of their credibility.

CASP (Critical Appraisal Skills Programme) checklist for qualitative literature

The researcher used a CASP checklist on the journals that were based on qualitative methods to ensure that the
research was accurate and valid. The 10 questions were designed to help the researcher to check whether the
qualitative methods and research designs were used appropriately; and whether the ethical issues were considered;
whether the data analysis sufficiently rigorous; and other relevant aspects of the research credibility was studied
using Critical Appraisal Skills Programme (2017). This checklist guided the researcher to check the quality of the
research journal.
AACODS (Authority Accuracy Coverage Objectivity Date Significance) checklist for grey
literature. Grey (unpublished) articles, reports, and studies used specialist knowledge
working in the related field. This critical appraisal was used for grey literature to examine
thoroughly and carefully critique its trustworthiness, relevance, and value in a specific
context (Burls 2009). These articles were useful for the current research to gather
information about the current situation in UK regarding interventions developed for eye
care service users.

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Figure 2.1 Prisma Diagram
Prisma Diagram
Total studies from all
the databases = 86
Total Excluded citations = 71 Total Included citations = 15
Title = 22
Abstract level = 21
Full journals = 11
Did not meet CASP
criteria= 17
Table 2.1. CASP & AACODS checklist
Paper Number & Methods & Aims of the research
Journal Name
1.The Journal of the Method: Surveys, structured
college of telephone interviews
optometrists Aim: To explore visually impaired
experiences of their daily activities.
2. Journal of Public Method: Focus groups
Health Aim: To find about the risk of
avoidable sight loss among older
adults in deprived communities.
3. The journal of the Method: Focus groups
college of Aim: To investigate the reasons for
Optometrists. people not attending regular eye
check-ups even if they are given for
free.
4.British Medical Method: Focus groups
Journal Aim: To explore experiences
among patients diagnosed with
glaucoma.
5. Journal of Public Method: Focus groups
Health. Aim: To explore factors that
affected public access to primary
care optometry services.
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Articles from databases:
PubMed Central,
Ebscohost, Ovid Medline
& Embase = 5
Grey Literature studies:
Thomas Pocklington Trust= 8
Social Care = 2
Quality check
This article was a sufficiently robust
and reliable source for this research.
Overall, the paper provided relevant
information in depth in relation to the
aims of the current research. The study
used sufficient reliable and credible
sources to provide evidence on the
current topic.
This recent study did fit into the scope
of the research to understand eye care
service users’ perceptions on utilizing
services for regular eye check-ups in
broader context.
This study provided sufficient
evidence that was relevant to current
research topic due to its validity and
credibility.
This study was quite useful in
understanding the clinical aspect of
eye care services, and its relevance to
the current research topic regarding
service users’ recommendations for
policy and practice.
 6-7 Royal National Aim: This pathway was
Institute for the Blind significantly useful to understand
the clinical support given to people
with sight loss.
8-15. Research Methods: Focus groups, surveys,
published by the interviews.
Thomas Pocklington Aim: To investigate eye care users’
Trust experiences on whether current
services are working or not, and
further recommendations from
clients.
These reports were reliable and
credible sources gathered from
different databases.
Thomas Pocklington Trust collected
findings and represented all the reports
from various institutions, and clearly
stated ethical approval from each
university. These selected papers
added relevant information to the
current context.

(Appendix 6 includes the title, author, and date of each article identified)
2.4 Key Themes from the literature
a). Barriers

The findings of previous studies (Biddyr & Jones 2014; Shickle & Griffin 2014; Glen et al. 2014;
Leamon et al. 2014; Nazroo et al. 2015) indicated main challenges among people with sight loss as
follows:

a). Issues with regards to access various eye care services

b). Mistrust, and conflict of interest between the clinicians and patients
c). Unawareness of the benefits of an eye test
d). Burden of cost to access sight tests
e) Insufficient time with doctors
f). No follow-up care, no proper explanation of results after eye examination, and problems with
scheduling appointments, and inadequate support from the hospital.

b). Public awareness & life change after diagnosis

In these following studies (Leamon et al. 2014; Hodge & Eccles 2014, Nazroo & Zimdars 2010; Rowe
2014; Peace et al. 2016; Cooper 2013; Cattan & Giuntoli 2010; Stow 2015; Douglas et al. 2010), the
findings indicated as follows:
a). The public lacked knowledge about eye disease symptoms that could occur after treatment.
b). Insufficient credible information shared to the public.
c). loneliness, isolation, housing and living arrangements, assistive technology, coping at home, getting
out and about, living independently, lack of support from organisations, and lack of professional
awareness
In recently conducted research, patients felt that many clinicians treated them as an ‘eye’ rather than a
person, with those staff members who took a more individualistic and empathic approach viewed
favourably (Glen et al. 2014; Cooper 2013; Biddyr & Jones 2014; Shickle & Griffin 2014). This showed
that relationships between eye care professionals and patients lacked significantly. Participants had
concerns with eye clinic support services, and were dissatisfied regards to communication with their
doctors. This evidence showed that older adults generally received no help right after diagnosis from the
hospital. There seemed a lack of organisation structure, an improper flow of support, insufficient
information given to patients, and no proper follow-up care at the eye clinics. The researcher’s interest

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was upon general experiences of clients before and after diagnosis, challenges faced, possible
recommendations to inform policy makers, and potentially change pathways in eye clinics for a better
support system to the public. Evidence indicated that people perceived issues and barriers for successful
follow-up care with their doctors; on the other hand doctors had difficulties in explaining eye test results
to the patient (Glen et al. 2014)

c). Recommendations for policy and practice

The evidence gathered from the literature (Shickle & Griffin 2014; Hodge & Eccles 2014; Nazroo &
Zimdars 2010; Rowe 2014; Peace et al. 2016; Cooper 2013; Cattan & Giuntoli 2010; Stow 2015) clearly
showed that health research is needed to explore, investigate, and compare experiences of older people
with and without sight loss to execute appropriate interventions for the public. The key suggestions for
good practice are as follows:
a). flexible appointment systems
b). provision of updated information post discharge
c). open communication between stroke and eye teams
d). access to different forms of support and building relationships
e). liaison between ophthalmic and statutory services
f). raising awareness of sight loss amongst GPs and opticians
h). promoting support groups, ensuring practical and emotional support in sheltered and care homes,
i). training medical and volunteer sector staff to promote eye health in simple language
j). sharing of information to ensure good communication between organisations and institutions

2.5 Limitations/gaps in the literature

After carefully reviewing the literature, there seemed limited research on barriers before and after
diagnosis among eye care service users in main databases compared to grey literature. This current
research would add more value and meaning to existing studies about eye care users’ experiences. The
literature review indicated that previous research only focused on challenges faced among eye care
service users after diagnosis not specifically prior to diagnosis. Therefore, this research will explore eye
care service users’ perspectives before diagnosis. In addition, the research study will investigate what
eye care services were or not useful from eye care users’ perspectives for new solutions.

2.6 Summary
The researcher conducted a preliminary literature review to examine and study the increase in risk of
developing preventable eye conditions among the older population in the United Kingdom. Only some
of the journals and reports from databases and grey literature were sufficient, robust, and reliable sources
to understand barriers faced among older people with sight loss. This literature review was an overview
of the barriers faced among eye care service users and recommendations for policy and practice targeted
after diagnosis. This current research will further explore barriers before diagnosis for solutions to
improve public access to eye health care services. In addition, the research will focus on barriers after
diagnosis to improve patients’ access to support services.

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 CHAPTER 3
METHODOLOGY
This chapter addresses research design, study setting, target population, details of
the sampling criteria, recruitment strategy, and data collection process. The
researcher discusses the validity and concept of reflexivity in this section.

3.1 Research Design

This dissertation project aimed to explore and study challenges faced amongst eye care service users at
Sheffield Royal Society for the Blind. The researcher used qualitative methods to explore clients’ views
on how to improve existing eye care services for the public. If a researcher is concerned with ‘exploring
people’s life-histories or everyday behaviour, then qualitative methods may be favoured’ (Silvermen
2014, p9). In the United Kingdom, little qualitative research in this field has been published by academic
journals. Most of the research is published as grey literature. The purpose of using qualitative research
method was to understand eye care users’ feedback, opinions, experiences, and interactions with their
clinicians.

3.2 Target Population

The target population for this project was clients who used SRSB services, specifically those clients who
came to the activities centre on Tuesdays due to convenience for the researcher as well as to the clients.
Starting age for the population was 65 years and older because the literature showed that sight loss in
certain eye conditions occurred due to ageing. Perceptions from this specific age group were considered
beneficial to understand their view on eye health before and after they were diagnosed with the eye
condition. The researcher investigated challenges that older adults with sight loss face in terms of
accessing available services at the time of their diagnosis. This helped to understand public awareness on
the knowledge of eye health, and clients’ perceptions on support given at eye services. Participants with
vision disability were needed for this project to provide opinions, feedback, and recommendations to
inform policy makers to design interventions that would benefit the public in the future. Their
participation in the study helped the researcher to achieve objectives that were set up for this research.
Inclusion criteria for the study:
• Clients above 65 years old
• Clients who have not attended regular eye check-ups before their diagnosis of eye condition.
• Any ethnic background
Exclusion criteria
• Clients below the age of 65 years old

3.3 Sampling
For the purposes of the dissertation project and time limit, the researcher could only conduct two focus
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groups. The clients who attended activities centre on Tuesdays were about 20-25 in number. The
researcher could not contact all the clients who used SRSB services, which could be around 3000 clients
in total, due to time constraints and the small scale of the project. In this qualitative study, focus groups
were conducted to understand the clients’ perspectives, their interactions with each other; and to explore
unique experiences from the diversified group. Participants in the study were selected based on common
and diverse characteristics based on the research topic (Leung & Ratnapalan 2009). In this case, focus
groups had one common factor which was clients who were above 65 years old and had partial or
complete sight loss. The selection criteria diversified based on range of eye conditions, range of age
groups, different ethnic backgrounds, and possibility of mixed gender in the focus groups.

A purposive sampling technique was used in this study to identify and to select a group of individuals
who could relate experiences around the topic area, and were specifically knowledgeable about the eye
care services in Sheffield. This technique was suitable for this qualitative study because these selected
information-rich cases could understand the topic better as they were all visually impaired (Patton 2002).
Also, purposive sampling allowed the researcher to understand different interpretations of the research
topic; and the selection of cases with maximum range of variation provided diverse variations of
opinions, attitudes, and experiences of clients (Palinkas et al. 2015). Therefore, the researcher selected
participants for the study by using a sampling frame to identify older adults with different eye
conditions, different age ranges, and equal number of gender in each focus group.
3.4 Sample Size
The sample size for both focus groups were 11 participants in total. The first focus group had 5 females,
and second one had 5 females and 1 male.

3.5 Recruitment Strategy

The recruitment of participants for the study took place on May 17, 2017. Before the population could
be sampled, the researcher talked to each client personally about the research to identify interested
clients. Then, out of those interested clients, the researcher enquired the client’s age and whether he or
she attended for a regular eye check up to make sure those clients fit into the inclusion criteria of the
study. Those who successfully fit into the criteria was further asked specific questions related to the
sampling criteria to select the clients for the focus groups. Responses were recorded for the researcher to
allocate the clients with equal variation of age, eye conditions, and equal number of males and females
in each focus group. However, due to lack of interest among males, both focus groups had majority
females except one male in the second focus group.

Finally, the researcher then anonymised clients’ names by identifying them with allocated numbers. The
finalised 11 participants were contacted on the following Tuesday regarding to the information about the
dates of the focus group discussions. For the convenience of the clients, both focus groups were held at

18
one of the meeting rooms at Sheffield Royal Society for the Blind on two separate Tuesdays before
lunch time around 11:00 am to 12:00pm.

3.6 Informed consent

Clients were provided information sheets in big print before attending the focus groups. Before
conducting each focus group, clients were asked to sign the big printed consent forms to participate in
the research. The researcher had to read word to word and help each client to put initials and sign the
consent forms. The clients were aware that their responses would be kept confidential, and their
information would be only used by the researcher to analyse data for the project. The form included
information about focus group being recorded, that data collected could be used for future research, and
that they were free to withdraw from the research project at any time.

In public health research, all consent from the participants must be explicit rather than implied, and it
should be specific rather than generic (Neill 2004). Explicit in the sense that participants must be fully
aware of their role in research, and how their participation could benefit them; and explicit consent could
rely on signatures and formal statements. This informed, explicit, and specific type of consent is most
considered in public health research for ethical reasons. This way the researcher and the participants had
no miscommunication or misunderstanding as the participants were informed with all the information
about the research, data confidentiality, and other aspects before the research was conducted. Informed
consent allowed participants to clarify all doubts with the researcher before they signed the consent
forms. (See appendix)

3.7 Data collection

Two focus groups were carried out at one of the meeting rooms at Sheffield Royal Society for the Blind
according to client convenience for the clients. A topic guide was used by the researcher, and semi-
structured and open-ended questions were chosen to explore clients’ perspectives. The focus group
discussions were advantageous as participants were more likely to discuss and interact with other
members who contributed diversified views about the topic. This method allowed the researcher to look
‘beyond the facts and numbers that might be obtained via survey methodology’ (Leung & Ratnapalan
2009). Focus groups were audio recorded and a journal was kept to note any key information of the
clients. For ethical reasons, the audio files and transcripts were destroyed after submitting the
dissertation project. The topic guide for focus groups were designed with some ice breaker questions to
ease the atmosphere in the group, and then followed by a few open-ended questions relating to the topic.
Finally, participants could share their thoughts, opinions, and feedback to add on to the discussion. This
allowed the researcher to be reflexive, listen actively, open-minded, and empathetic when participants
shared their experiences and interacted with each other. (See appendix 3 for topic guide)

19
3.8 Ethics Approval
This project was ethically approved by The University of Sheffield with permission from the School of
Health and Related Research, with the supervisors for the research project being Jennifer Read and
Surinder Bangar. Participants in this research project included older clients who use Sheffield Royal
Society for the blind services. (See appendix 1 for ethical approval letter).
3.9 Analysis

For this qualitative research study, thematic analysis was undertaken by the researcher. The analysis
occurred through a process of encoding qualitative information; themes were generated inductively to
interpret data at the latent level (Boyatzis 1998). The researcher identified themes and subthemes to
understand the underlying phenomenon around the topic area, and generated from the raw data. Themes
emerged from similar patterns and frequency of occurrence of certain factors from both focus groups
(Komori). The researcher adapted from previous design techniques to process thematic codes by
checking code validity, and themes were finally identified (Komori).

3.10 Validity

When applied to qualitative research, interpretive validity differs from quantitative work to report
findings particularly from participants’ viewpoints, thoughts, intentions, feelings, and experiences
accurately (Johnson 1997). There is a possibility of research bias occurring if the researcher tends to use
selective recording of information and personal views that can affect how data is interpreted (Johnson
1997). The researcher ensured to interpret data by reflecting and studying participants’ views, and
avoided personal opinions when analysing data.

3.11 Reflexivity

A Guide to Qualitative Interviewing defines reflexivity as the process of examining both oneself as
researcher and the researcher’s relationship with the participants (Hsiung 2010). The researcher must be
aware of “conceptual baggage”, one’s assumptions, and preconceptions, and how research decisions are
undergone, particularly, the selection and wording of questions (Hsiung 2010). The researcher reflected
upon their own conduct while analysing codes and themes to minimise any bias in the study. However,
the researcher knew the clients personally due to placement at SRSB for few months prior conducting
the focus group discussions. Limitations for this study was that the researcher bias might have occurred.
However, this was minimised by accepting views without any preconceptions and judgements about
clients; and allowing participants to converse with one another with prompts being brief as possible.

20
 CHAPTER 4
FINDINGS
This chapter provides clients’ views and opinions on existing eye care services. Importantly,
this section describes barriers before and after diagnosis, and solutions for policy and practice
from eye care service users’ perspectives. This section also reports additional findings of
what services worked along with the barriers and suggestions for improvements in the eye
care services they used in Sheffield.

4.1 Participant characteristics

All the participants were sampled based on age range and variety of eye conditions. Background
information was collected on participants to provide context for the data. A summary of this information
is displayed in the table 4.1. Among Eleven participants, ten were female and one was male. Most males
were not interested to take part in the study; so, the focus groups had more females than males instead of
equal gender mix. There was no equal number of males in the study because there were less males in
total who came to the activities centre on Tuesdays compared to number of females. All the participants
were above the age of 65 years old, and the study was open to any ethnicity to minimise selection bias in
the research.

Table 4.1- Participant Characteristics

Participant Gender (M/F) Eye Condition Age

1 F Glaucoma & Cataracts 86

2 F Stroke 96
3 F Macular Degeneration 82
4 F Charles Bonnet, & Macular 87
Degeneration
5 F Glaucoma & Cataracts 90
6 F Stroke, Charles Bonnet & Macular 65
Degeneration
7 F Cataracts 76
8 M Macular Degeneration & Stroke 80
9 F Glaucoma 88
10 F Glaucoma 89
11 F Stroke 65

21
4.2 Focus group findings

4.2.1. Barriers before diagnosis

Key Themes: 1. Information PATIENT COULD NOT

1. Information No information given about MAKE AN INFORMED
2. Communication multiple eye conditions that CHOICE FOR THE
could occur after treatment. TREATMENT.
3. Public Awareness of Eye Health

2. Communication
Doctors could not explain about
the eye conditions and treatment
clearly to the patient.
3. Public Awareness
Public & patients are not updated with
scientific research about eye conditions.
Public is not informed about the symptoms
before getting stroke or other symptoms of
eye conditions that could lead to sight loss.

• Lack of information provided

Even after going to the opticians, optometry services, or the GP the patient was not given enough
information about cause of certain symptoms of age-related eye conditions. In some cases, the
patient was immediately sent to the hospital for treatment without any explanation. The patient was
not informed about what eye tests, X-rays, or other procedures were being done by the doctor. For
example, when the patient was referred to the ophthalmologist for a cataract surgery, he or she was
asked for consent or decision on specific treatment without proper explanation from the eye
specialist. The patient did not know what cataracts means, and was not given any information about
surgical procedures prior to cataract operation. In the following two incidences showed that patients
were not updated on new treatments.

“After the cataract operation, I was told to put eye drops in regularly, but I could not see or put
eye drops in my eyes. I can’t have anybody to put drops in my eyes. So, you have to struggle not
being able to see” (Participant 3).
“Well, there is a new method where my doctor started me, I started to put ointment 4 times a day
for 3 days. When you have had the injections, she puts the ointments, you don’t have to touch
anything. They don’t give anything to bring home with you now. It is a lot easier” (Participant
4).

22
 • Communication between eye care professionals and patients
The participants described their symptoms after the cataract operation such as seeing spots, imaginary
bricks, bugs, and people. When they contacted their optician, they were told as follows: ‘you are not
losing it you know, it comes with Charles Bonnet’ (participant 4). According to the participants, doctors
did not use proficient, clear, and simple language when communicating to the patient. Messages given to
the patient were unclear: ‘I could see something back of your eye’ (Participant 3), which indicated that
patient could not comprehend what was told by the doctor. In this quote below, the participant used the
word ‘defect’ which showed that the patient was not given proper explanation of her eye condition by
the optician. From participants’ perspectives, the doctor’s communication to his or her patient was
vague, unprofessional, and unclear. Participants agreed with each other that eye care professionals
lacked communication and listening skills. It appeared that eye care professionals showed lack of
interest to explain test results instead addressed the patient as an eye or sight rather than a whole person.

“I went to optician to get new glasses and she saw a defect in both eyes so she sent me to the
hospital. When I got there, they took so many X-rays. Eventually they said, he says there is
nothing wrong with your sight, it is your age”. (Participant 7).

“They took all these photographs all the time for about 18 months, and suddenly I went to see a
junior doctor. She said that there is nothing else we can do. She didn’t say where to be, and it
was end of that care” (participant 3).

• Public awareness about the symptoms of eye condition

Sudden sight loss had adversely impacted on the individual’s life. Most participants were curious,
anxious, and afraid of losing their sight. They enquired about the cause of physical symptoms such as
stroke, and tried to understand biological explanation of their eye condition. When there was a symptom
led demand, the individual was taken to the emergency eye clinic to receive treatment. However, the
participants did not know why they suffered a stroke or lost vision suddenly. From participants’ views, it
seemed that they were not directed to a reliable and a credible source for update information about
symptoms of different eye conditions.

“When I went to bed and when I woke up, my left eye had gone; I had no vision and couldn’t see
anything at all. After a month, it happened to my right eye, but there were no symptoms at all”
(Participant 6)
“Same, I don’t know. It was one morning when I woke up I couldn’t see anything through this
eye” (Participant 8)
“It happened when I was in front of the computer” (Participant 11)

23
4.2.2 Barriers after diagnosis
1. Referral System from Opticians or GPs to eye care specialists

1. Longer
appointments to
see the specialist
for treatment

3. Patients were
2. No follow-
not given support
up care after
after discharge
discharge
from the hospital

• Step1: Longer appointments to see the eye care specialist for treatment
Participant expressed frustration, bereavement, hopelessness, and were tired of getting treatment
after a while. Also, one of the participants compared the eye care specialist with the Queen, and the
doctor directly dismissed the patient by saying ‘I got nothing to do with my expertise’, go home.
From participants’ views, they felt that as patients they had wasted time in hoping to get the right
treatment. Importantly, clients felt that doctors often looked down on patients, and did not talk to the
them with respect.
“You can’t just go directly to the hospital. You must go through your doctor. Because, I couldn’t
believe when the appointment came to go to the hospital. It was a Saturday afternoon, and it was
this clinician, and all I got was oh well, it is nothing to do with my expertise, go home. Sorry!
Well I should not have been sent there. You see, the doctor has said that she had nothing to do in
my eyes. In fact, to see her is like to get an invitation to see the Queen quicker” (Participant 5).

Secondly, the participants also implied that it was a challenge to go to the hospital. There were a
series of challenges faced by the patient to get an appointment at the hospital immediately. Patients
had to remind their opticians to schedule appointments, and when eventually succeeding, they had to
wait 6-8 weeks to see the eye care specialist; with no guarantee of proper treatment even after getting
an appointment.

“One night I went to bed and next morning my eyes have gone dark from the top half way. By
the time I went to the hospital, my eyes went dark from bottom up. So, I reminded them and 6
weeks went away, it is all blurred and everything I look at it as coloured spots. That’s how I am
trying to see” (Participant 7).

24
 • Step 2: No follow-up care

Clients in both groups shared incidences which indicated that they expected a follow-up from the
doctors at the hospital after a cataracts surgery and other treatments, but they did not receive any. One of
the participants said, ‘you should be able to go back and check on them, and see if your eyes are getting
worse or better or what’ (Participant 8). Some went back to their GPs or opticians if they noticed any
symptoms, but the participants felt that the doctors from the hospital did not seem to care or check
whether the patient has been alright or not.

Most of the participants expressed the need of going back to the hospital to check their eyes periodically.
From participants’ perspectives, the doctors neglected their patients after treating them with injections or
operations. The individual was on his or her own after diagnosis, and had to enquire through family
about other support services like SRSB available for visually impaired. In most cases, the doctors
directly told their patients that nothing can be done from the hospital. Patients expected support from the
beginning but did not receive any SRSB services until much later after diagnosis.

“Well, my granddaughter found SRSB for me” (Participant 4)

“I went to my doctor, he sent me to the hospital after telling that I could never afford the
injections; and the hospital sent me to SRSB” (Participant 5)

“I came to know about SRSB through a community nurse actually” (Participant 1)

Step 3: No support given after discharge from the hospital

Most of the participants in both groups implied that they could not access support services because they
were unware of it when they were first diagnosed. The optometry services, eye clinics, or the hospital
did not direct the patient for appropriate available support services from the beginning and even after
diagnosis. Most patients found it challenging to enquire about SRSB services through a third person
instead from the eye care professionals. This cycle of longer appointments, no follow-up care, and no
support given after discharging the patient was a continuous process.

25
2.Adaptation to life change after diagnosis

Public Burden of cost to Difficulties with

Emotional
misconceptions of buy assistive crossing roads,
health is
a visually impaired technology and cooking, and other
affected
person for treatment daily activities

Adaption to life change after diagnosis was identified as one of the main barriers. Its subthemes are as
follows: emotional health, public misconceptions, burden of cost, and challenges faced while engaging
in daily activities. These subthemes were all interconnected according to eye care service users.
• Impact on emotional health & public misconceptions
Firstly, most participants talked about their grieving process when they were first diagnosed with an eye
condition. According to clients, sight is taken for granted until something happens. Most of the clients
feared about their identity being changed after diagnosis. Most of them shared instances where they had
a hard time in adapting to change, for example, finding alternative ways to cook and not being able to go
out on their own. Importantly, there was an underlying theme of not wanting to depend on other people.
The participants shared their thoughts, emotions, and feelings by using certain words and phrases
including: anger, frustration, fear, shocked, loneliness, left out, dreadful, terrible, to be able to see better,
worst, rubbish, ‘I can’t see’, ‘I have got no confidence’, and ‘everybody said that trust me’. Also, these
emotions increased when the public had misconceptions about their disability:
“Bear in mind, I have been going to this church for 5 years, so I have gotten from ordinary
walking stick to a different one. This minister in that job for past 27 years didn’t know why I
suddenly started to use a white stick. People do not think, I just couldn’t get over it. People don’t
come to you even though you have got a stick and say may I help. You have got to ask other
people. It is dreadful. I would rather not go out” (Participant 3).

“They don’t recognise this white stick you know. Some ask me what is red for? It is for deaf and
blind” (Participant 7).

“Even if we have crutches and a white stick it is useless. No one notices” (Participant 10).

“Sometimes you get, she doesn’t look like. But what does a blind person look like. Mine is what
is wrong inside not outside” (Participant 6).

In most cases, the participants felt that they were not treated as a person rather people saw them as
‘blind’ due to sight loss. Almost every single participant in both focus groups expressed their frustration
and anger when the outside world could not recognise their disability. Similarly, the participants felt that
their biggest challenge and most difficult experience was when they had to quit their hobbies such as
knitting, bicycling, reading books, and so on due to sight loss. Overall, eye care service users’
experiences indicated that they felt depressed, unnoticed, isolated, and neglected. From participants’
26
perspectives, it appeared that the public including their clinicians, family, and friends did not understand
and give adequate emotional support after diagnosis.
• Challenges faced while engaging in daily activities
Second most challenging for clients was getting treatment; some could not afford injections after
cataracts surgery. Clients expressed fear when they were getting diagnosed because of the expenses for
treatment. They had to give up on improving their vision as they could not afford the treatment.
Participants talked about their families and partners who had provided support since they have lost their
sight. Yet, some were on their own for the most part because their family members would only help
them occasionally. Some took help from their sons or daughters for grocery shopping. However,
participants felt that no one including their family members understood their pain. Some were sharing
instances where their carers showed frustration or tiredness of taking care of them:

“When one of my boys was shopping at the super market. He said, ‘mother, will you remind me
next week not to bring you because it takes me 2 hours long. So, I don’t go for shopping
anymore” (Participant 3).

From participants’ stories and experiences, it appeared that they could not afford to purchase assistive
technology for cooking and managing other personal tasks. Most did not like depending on their children
or friends to go out for shopping, but they had no other choice. Some received a local bus that takes
them to a super market nearby, but they still felt left out from the outside world because they could not
go out for walks, or spend time outside. Importantly, most expressed fear of getting hit or falling while
crossing roads. Most did not take trams or buses because they would not know where to get off, and how
to get to places as there would be no help provided.

“There was one time, I just got off a bus and I thought it was my turn to go, and I put my food
forward and this car came on the wrong side and went so fast. Honestly, if I took another step, I
wouldn’t be able to here now. This kid passed me and didn’t look back. I was completely blind at
that moment, I couldn’t see” (Participant 7).

“I can’t tell the difference between a green and an orange. I can’t see them move (Participant 3).

“I do find cooking difficult at times. I mean you try to fry an egg, and it misses and goes on the
hot plate” (Participant 5).

27
4.2.3 Solutions/Suggestions from eye care service users

Share most updated

information to the
public and patients
Policy level
Educate about
assistive technology
devices
Solutions
Crossing road
systems, shopping, &
Changes & transportation
Improvements Eye care services:
Communication, follow-up
care, & scheduling
appointments

• Policy level: share up to date information about eye health to the public

Most participants mentioned that they were not knowledgeable about causation of certain symptoms
such as stroke and different age-related eye conditions even after going to opticians, GPs, and eye
care specialists. From participants’ views, it indicated that even eye care professionals in the
optometry services, eye clinics, and hospitals did not know how to explain what caused stroke, and
did not share most recently information about eye conditions to their patients. There seemed no
proper way of sharing credible research on eye health, symptoms, available services, and so on;
where patients and public could access via an online portal system or by any other means.
“I think I had a blood vessel burst or high blood pressure, I don’t know. But my daughters helped
me when I first got diagnosed”
(Participant 11).

“I think we need a way to get the information to the public. The doctors said it was stroke and it
could have been prevented if I had taken aspirin, and I had no idea.” (Participant 7).

• Eye care service users should be educated about assistive technology

Also, participants were not aware of available assistive technology to use for their personal tasks from
the beginning. For example, ‘I woke up, my left eye has gone, after a month, it happened to my right eye’
(Participant 6). In this scenario, the patient did not seek help immediately for support after experiencing
sight problems due to lack of awareness. Most participants who had stroke were taken to the emergency
clinic, and they were not educated about assistive technology that could benefit the patient to adapt to
life change.

28
 • Changes and improvements in eye care services

In terms of eye care services, participants had many complaints about long waiting time for a
specialist appointment, lack of communication with the patient, and no follow-up care after
discharge. Most of the participants showed frustration about the services in eye clinics and hospitals.
From participants’ interactions, it indicated that there was a need for improvement in all eye care
services mentioned. As mentioned below, most participants in both focus groups had similar stories
and instances where they mentioned a need for immediate appointments to prevent further sight loss.
Also, as patients they expected advise and information from doctors on what could happen after the
cataract surgery through a follow-up care system.
a). Follow-up needed:
“The doctor told me just to take tablets regularly, and that’s it. After, I got my cataracts done,
they never sent me back to see whether I was okay” (Participant 7).

b). Improve communication between doctor and patient:

“The doctors from the hospital discharged me from the hospital, but told me to come back if I
notice any problems. I could not see properly after a while, so I went back to the A&E eye clinic,
and the doctor said it could come back again due to the fluid in my eyes, but I was not told earlier
when I went for cataracts” (Participant 4).

c). Improvements needed in the referral system to see the eye care specialist sooner:
“Even though you experience sight problems after seeing your optician, you can’t just go to the
hospital directly. You have to go through your doctor, and it takes a very long time to get an
appointment” (Participant 5).

• Changes with regards to practical daily living issues

Apart from eye care services, participants mentioned that going out for grocery shopping was the main
challenge because they were afraid of getting hit or falling while crossing roads. Also, many complained
that there were dustbins on the pavement and cars blocking the pathways near their houses, which
indicated an increased risk of falling and injury for visually impaired.
In the below scenarios, participants mentioned various suggestions which indicated that clients did not
like depending on their children or friends to go shopping, and to avoid falling. Some went by taking
taxis, but mentioned that they were quite expensive. Instead, most participants suggested buses for
people with disabilities to take them to different places more often. Most of them indicated that if there
was a way to go out safely, they could manage their daily tasks by themselves. In these below instances,
eye care service users wanted road and transportation systems to be improved so that they could become
more independent.

29
 a). Change crossing roads & transportation systems:
“If they could put those further down so we could see better to us when we cross roads”
(Participant 7).

“It would be good idea for the lights to be illuminated when it is red, so you will not be able to
cross” (Participant 8).

“There could be talking lights, and that should be that on buses as well, don’t you like we are at
such and such place while dropping off” (Participant 11 & 6).

“I know that there were 5 crossings, and they have not got the twisting button, they need to fix it.
I don’t know about these things”
(Participant 3).

b). Need assistance during grocery shopping

“When I go to any shops or supermarkets, everything seems to be looking the same. I just can’t
see what they are. It would be nice if the staff assisted more” (Participant 1).

4.3 What eye care services benefited the users?

Eye care service users appreciated that they were provided with information about eye conditions after
their diagnosis from the hospital. The doctor provided the information about specific eye conditions by
giving booklets or leaflets to the patient. However, patients had a hard time to understand their eye
conditions due to lack of knowledge about medical terms and scientific language. Also, the patients
benefited when GPs or opticians referred them to the hospital for treatment. However, the patients were
not given appointments in timely manner to see an eye care specialist.

4.4 Summary findings

Inductive analysis of the data results in the emergence of three main themes before diagnosis, two
themes after diagnosis, and four themes for solutions for policy and practice. These themes are presented
in figures 4.1, 4.2, and 4.3. The themes before diagnosis are information, communication, and public
awareness of eye health. Themes after diagnosis are the referral process from GPs to eye care specialists
and adaption to life change. The other two themes after diagnosis included policy level and suggestions
for change/improvement from clients’ perspectives. At policy level, it includes educating society on
update information regarding eye health and assistive technology. In terms of changes or improvements,
eye care and support services should be more easily accessible to patients and the wider public.

30
 CHAPTER 5
DISCUSSION
This chapter discusses interpretations of the findings, strengths of the research, limitations of
the research, and recommendations or further research.

5.1 Introduction of objectives

The aim of this research project was to explore and identify gaps in the services for older adults who
experience sight loss through focus group discussions with SRSB clients. This project gathered opinions
of clinical care, personal stories of adaptions to change, and challenges experienced when eye care users
first encountered sight loss. The researcher conducted two focus group discussions with a total of eleven
participants and discovered main themes and subthemes for before diagnosis, after diagnosis, and
separate solutions/suggestions. This discussion will briefly recap the findings, examine, and reflect upon
the links between the themes and subthemes. The discussion will focus on the interpretations of the
findings in detail. After the findings and literature have been considered, recommendations for further
research will be made. The main themes were as follows:

a). Before diagnosis:

- Information, communication, and public awareness of eye health.
b). After diagnosis:
- Referral system from GPs and opticians to the hospital.
- Adaption to life change
c). Solutions/Suggestions
- Policy level: Share updated information to the public and patients, and educate them about
assistive technology devices.
- Changes for practical daily living issues: road crossings, grocery shopping, & transportation.
- Improvements in the eye care services: communication, follow-up care, & scheduling
appointments.

5.2. How to improve public access to eye care services?

The researcher investigated how eye care users approached various services before and after diagnosis to
discover solutions for public and patients’ access to eye care and support services. The problem
identified was lack of public awareness about the causes or symptoms of various age-related eye
conditions. Most of the older people with sight loss experienced either stroke or sudden vision loss,
which led them use emergency eye clinics. Some people who experienced symptoms of other eye
conditions went to their GPs, opticians, or optometry services to be referred to the eye care specialist.

The findings indicated that public had issues seeing the eye care specialist directly because they had to
be referred from their GP or optician. It appeared from the conversations between the participants that
there was no proper way of scheduling appointments to see the eye care specialist in a timely manner.

31
Due to delayed appointments, people’s sight became worse by the time they got to see the
ophthalmologist at the hospital because it took many weeks to see one. Some found out that they were
not sent to the right specialist for an appropriate treatment after seeing the eye care specialist. In
addition, patients were not provided any support from the hospital early. Some patients ended up
contacting SRSB support services through their family after getting discharged from hospital care.
Table 5.1 What led people to use different eye care services before diagnosis?
Causes/symptoms Were patients Type of services Barriers before diagnosis
that led to sight aware of the used before
loss for all symptoms diagnosis
participants and eye
condition
when first
experienced?
Stroke No a). Limited awareness of eye health
Suddenly lost No Emergency eye and eye disease.
vision after woke clinic and eye care b). Insufficient and lack of credible
up in the morning specialists. information given to public
c). Lack of time with doctors, and
Went to optician to No Optometry services: not understanding the benefits of
get new glasses, or doctors referred the an eye exam.
when experienced patient to the d). No explanation of test results
other symptoms specialist. by eye care professionals
e). No explanation of test results
by eye care professionals

• Solution 1: Public advocacy to share most up to date research on eye health

In the literature, as well as research findings indicated that there is a necessity for early referral to an
ophthalmologist; for instance, if older adults have been already diagnosed with type 2 diabetes and
diabetic retinopathy, they should be referred to see an eye care specialist to prevent further sight loss
(Bosanquet & Mehta 2008). However, in the previous research, no solutions were identified to improve
public awareness about the symptoms of age-related eye conditions. Participants also complained about
not being informed about new treatment methods. This needs to be solved by involving patients in
informed decisions for treatments. The public should be educated on symptoms of certain age-related
eye conditions and most up to date treatment options. In addition, if people are suffering from other
conditions that could lead to sight loss, then they should be referred to eye care specialists from their
GPs early.

32
 • Solution 2: Train eye care professionals on communication, listening, and interpersonal skills

The public accessed the emergency eye clinic in response to deteriorating sight caused by stroke or
sudden loss of vision; and they were not satisfied due to poor interactions with their clinicians.
According to research findings, doctors did not show interest to explain the eye condition at the time of
diagnosis to the patient. Overall, the doctors lacked work ethics; they were impolite to their patients;
they did not consider tests results seriously; and importantly doctors did not treat their patients with
empathy. According to the participants, doctor’s dismissive behaviour could be due to less time
scheduled with each patient. SRSB, optometry services, eye clinics, and hospitals should work together
to solve doctor-patient communication issues. Firstly, eye care professionals need to be trained on
communication skills because the research findings showed that doctors did not explain test results and
treatment procedures clearly. Doctors must use simple and non-scientific language when explaining the
eye condition to the patients. Secondly, eye care professionals need to develop positive relationships
and interpersonal skills to provide quality care.

5.3 How to improve patients’ access to eye care and support services?
The researcher identified similarities with regards to no follow-up care, lack of support, and issues with
practical daily living in the literature and the current findings. However, there is no prior research on
challenges faced by patients to receive support after diagnosis. The research findings indicated that
patients did not receive support early from their opticians, GPs, or eye care specialists. This research
project discovered how eye care service users contacted support for solutions to improve patients’ access
to support services.

Table 5.3 What types of services used by patients after diagnosis?

Type of services used after
diagnosis
- Hospital services: eye care
specialist for cataracts and
for other treatments.
- Optometry services, GPs,
and opticians: If patients
experience symptoms of
other eye conditions after
the treatment.
How did they contact for
support?
a). Eye care specialists from
the hospital sent the patient to
the SRSB support services
after discharge.
b). Family or carers of the
patient tried to contact SRSB
for support.
Barriers after diagnosis
a). No support given from the
hospital.
b). Adjusting to deteriorating
sight:
- Assistive technology
- Coping at home
- Getting out and about
- Living interdependently
- Emotional health
(loneliness, depression)
c). Concerns about cost for
treatment
d). Lack of follow up-care at
the hospitals

33
 • Solution 1: Liaison between eye care and statutory services with voluntary organisation

From the research findings, patients did not go back to the eye care specialist for follow-up after their
treatment. In addition, patients did not receive support from their doctors after diagnosis instead they had
to find out SRSB services through family or carers. This strongly suggests that SRSB needs to
communicate with the eye care specialists and occupational therapists to support people with partial or
complete sight loss. Doctors might not be aware of what support services available to the patients,
therefore, SRSB must work with the eye clinics and hospital to educate about assistive technology tool-
kit. This will encourage eye care professionals to educate their patients about available support services
early.

• Solution 2: Create accessible community-based facilitators to direct people to services

According to the findings, people experience lack of emotional support and had to adapt to change after
diagnosis. Most participants were not satisfied with assistive devices such as magnifiers, which indicated
that these devices need to be checked for quality and improvement. Participants were not aware of
talking news and books, red label stickers to identify objects at home, city wide alarms in case of
emergencies, and heat detectors until much later after diagnosis. There is also limited knowledge of
various assistive technology devices for the visually impaired people. A recent guide was developed for
visually impaired, their families, carers, and partners to inform them about useful assistive, inclusive,
and home technology. However, there was no community outreach attempt of educating and sharing the
assistive technology tool-kit to the public and patients; and those living in deprived areas were not able
to afford, access, and efficiently use the devices for personal tasks (Stow 2015; Percival 2012). SRSB,
City Council, and other important stake holders need to work together to ensure that the public and
patients are informed of available support services.

• Solution 3: Make support services affordable and easily accessible

Most of the participants expressed frustration, loneliness, general inability to cope with daily life, which
showed that they were not able to use or access certain services to ease their pain. Eye care service
users’ emotional health was affected due to various factors, and the main factor being unable to afford
transportation and good quality assistive devices. This led them to become dependent on their family or
carers for cooking and grocery shopping, but majority of them were living alone without any assistance.
In addition, most people with sight loss after diagnosis faced difficulties with regards to crossing roads,
cooking, grocery shopping, transportation, and emotional health. SRSB and City Council should work
up on building transportation system for the visually impaired people. Also, educate public on

34
perspectives of visually impaired people by conducting visual awareness seminars in the universities and
national conferences to avoid public misconceptions.

Strengths of this study

The benefit of conducting focus groups was to see facial expressions, attitudes, behaviours, interactions
between participants, and importantly to understand meaning behind their words. The researcher
identified strong feelings and emotions attached to eye care service users’ opinions and experiences in
the literature as well as in the raw data collected from focus group discussions. Most of the recent
pathways and reports come from Royal National Institute for the Blind, and appears not gaps in sharing
that research between eye care professionals and the public in an efficient way. Firstly, this current
research study explored barriers before diagnosis, which was not found in the literature. Secondly, the
project provided new solutions to improve public to eye care services. Furthermore, this study explored
what services benefited eye care services, and gathered suggestions to improve patients’ access to
support services.

Limitations of this study

Due to the time scale of the project, the researcher focused only a small group of eye care service users.
The researcher did not approach eye care professionals, non-eye care users, and other stakeholders to
discover various perspectives to improve public and patients’ access to eye health services. Firstly, there
was a small sample size due to lack of resources, time, and convenience for the clients. Secondly, the
focus group discussions had less males because they were not interested to take part in the study, and
some males did not attend activities centre regularly compared to females. Finally, research bias might
have occurred because the researcher knew the clients few months prior to the focus group discussions.

5.3 Recommendations for future research

A participatory research must be conducted to involve eye care professionals and volunteer
organisations to investigate their interactions with patients and public. Also, this research project
provided first hand evidence that implied a need of further improvement in the eye care and support
services for public and patients. Additionally, important stakeholders and authorities with the help of eye
care professionals and volunteer organisations should promote and advocate early prevention
interventions. The research findings will be disseminated to SRSB, City Council, and other important
stake holders to improve public and patients’ access to eye health care services. The findings will also be
presented in future national conferences to bring public health awareness on eye care users’ experiences.

35
 CHAPTER 6
CONCLUSION

In conclusion, this dissertation project has achieved its initial objectives. A preliminary literature review
was undertaken before conducting primary research to understand the gaps existing in the current eye
health care services. The researcher achieved the objectives by conducting two focus group discussions
at Sheffield Royal Society for the Blind to understand eye care service users’ perspectives. The
researcher has used purposive sampling to select the participants in the study, and thematic analysis
technique to analyse the collected data.

The findings in the current research provided valuable insights to understand the gaps in the eye care and
support services delivered to the patients and public. This dissertation project investigated barriers
before diagnosis faced by eye care users to improve public access to eye care services, which was not
found in previous studies. Furthermore, this research explored eye care users’ perspectives for
suggestions to improve patients access to support services, which was not found in previous research.
This dissertation project hopes to alert important stakeholders, Sheffield City Council, The University of
Sheffield, and other important authorities to design interventions, appropriate policies, and make
improvements in the current eye health care services for easy access to the patients and public.

36
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Cooper, S., 2013. Research findings AS LIFE GOES ON – A closer look at how support
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and understanding of their eye condition: results from a survey of visually impaired
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Hodge, S. & Eccles, F., 2014. Loneliness , social isolation and sight loss. Available at:
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isolation-1.pdf.

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sight-loss/access-eye-care.

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59.pdf.

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http://dx.doi.org/10.1016/j.puhe.2014.10.010.

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http://designresearchtechniques.com/casestudies/thematic-analysis/ [Accessed July
27, 2017].

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preventable sight loss : a qualitative study in five UK locations. , 36(4), pp.667–673.

Leung, F. & Ratnapalan, S., 2009. Spotlight on focus groups. , 55, pp.218–219.

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Nazroo, J., Whillans, J. & Matthews, K., 2015. Changes in vision in older people. ,
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of life of visually impaired older people. , (32), pp.1–8.

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http://www.srsb.org.uk/Sight-Loss/Causes-of-Sight-Loss/ [Accessed September 8,
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appraisal of grey literature.

39
 Appendices
1.Ethical Approval Letter

Approved: 06/04/2017
Dedipya Immadisetty
Registration number: 160103977
School of Health and Related Research
Programme: Masters of Public Health

Dear Dedipya
PROJECT TITLE: An exploration of eye care service users' perceptions for solutions to improve their
access to eye health care services.

APPLICATION: Reference Number 012841

On behalf of the University ethics reviewers who reviewed your project, I am pleased to inform you that
on 06/04/2017 the above-named project was approved on ethics grounds, on the basis that you will
adhere to the following documentation that you submitted for ethics review:

• University research ethics application form 012841 (dated 30/03/2017).

• Participant information sheet 1029112 version 3 (30/03/2017).
• Participant information sheet 1028652 version 2 (30/03/2017).
• Participant information sheet 1027918 version 1 (18/03/2017).
• Participant consent form 1029111 version 3 (30/03/2017).
• Participant consent form 1029015 version 2 (27/03/2017).
• Participant consent form 1027919 version 1 (18/03/2017).

If during the course of the project you need to deviate significantly from the above-approved
documentation. please inform me since written approval will be required.

Yours sincerely
Ellen Nicolson
Ethics Administrator
School of Health and Related Research

40
2.Information Sheet

Research Project Title: Evaluating and Understanding challenges faced by eye care service users

You are being invited to take part in a research project. Before you decide it is important for you to
understand why the research is being done and what it will involve. Please take time to read the
following information carefully and discuss it with others if you wish. Ask us if there is anything that is
not clear or if you would like more information. Take time to decide whether you wish to take part.
Thank you for reading this.

Background: Recent studies have shown that people over 65 years of age with sight loss are going
undetected due to lack of having regular eye check-ups, do not know about eye conditions, that could
cause further partial or complete sight loss. The research in this area is worth doing to find out problems
among eye care service users to improve health care access in the future. This research project hopes to
find out older adults’ understanding about eye health, and challenges faced by eye care service users
from small group of people in Sheffield. The research project is ethically approved by University of
Sheffield, and the coordinator for the research project is Jennifer Read.

Will I have to take part?

You are chosen to be part of this project because it is important to receive your opinions experiences as a
client from Sheffield Royal Society for the blind. Participants include those who have partial or
complete sight loss

What will happen next?

The researcher will conduct a focus group discussion with you and other clients at Sheffield Royal
Society for the Blind. The participants in this focus group discussion come to the activities center
regularly on Tuesdays and the transportation is provided by the organisation. This discussion group will
take place on a Tuesday at the activities center from 10:30 am to 12:30 pm in a meeting room.
Refreshments and lunch will be provided by the organisation as usual.

The discussion group:

The focus group discussion consists of open ended questions about your level of satisfaction with
services provided to you by this organisation. Secondly, questions will be asked regarding your eye
condition that impacted your living condition. Thirdly, other questions related to your knowledge and
awareness of resources available at the before and after your diagnosis with eye condition.

What will happen to my information?

The interviews will be recorded on audio media to analyse the data later. All the information that we
collect on audio media about you during the research will be kept strictly confidential. You will not be
able to be identified in any reports or publications. This research project is qualitative and the data will
be analysed for my dissertation project.

It is up to you to decide whether you choose to take part or not in the research. If you do decide to take
part, then you will be given this information sheet to keep (and be asked to sign a consent form), and you
can still stop taking part at any time without it affecting any benefits that you are entitled to in any way.
You do not have to give a reason.

41
 Thank You!

Contacts for further information:

Thank you for your participation!
For further information about the research please contact:

Research Coordinator: Jennifer Read

Research Associate and Occupational Therapist.

Researcher: Dedipya Immadisetty

MPH, School of Health and Related Research

Email id: j.read@sheffield.ac.uk

Address: The Innovation Center

University of Sheffield
Portobello, Sheffield S1 4DP United Kingdom.

42
3.Consent form

Title of Research Project: An exploration of eye care service users’ experiences for
solutions to improve access to eye health care services.
Name of Researcher: Dedipya Immadisetty, MPH
Participant Identification Number for this project: Please
initial box

1. I confirm that I have read and understand the information sheet

explaining the above research project and I have had the opportunity
to ask questions about the project.

2. I understand that my participation is voluntary and that I am free to

stop taking part at any time without giving any reason and without
there being any negative consequences.
In addition, should I not wish to answer any particular
question or questions, I am free to decline.
Please contact Dedipya Immadisetty
for any concerns: Email- dimmadisett1@sheffield.ac.uk

3. I understand that my responses will be kept strictly confidential.

4. I give permission for members of the research team to have access to my

anonymized responses.

5. I understand that my name will not be linked with

the research materials, and I will not be identified or identifiable in the
report or reports that result from the research.

6. I agree that focus group will be recorded and I am happy with these needs.

7. I agree for the data collected from me to be used in future research.

8. I agree to take part in the above research project.

________________________ ________________ ____________________

Name of Participant Date Signature
(or legal representative)

43
_________________________ ________________ ____________________
Lead Researcher Date Signature
To be signed and dated in presence of the participant

Copies:

Once this has been signed by all parties the participant should receive a copy of the signed
and dated participant consent form, the letter/pre-written script/information sheet and any
other written information provided to the participants. A copy of the signed and dated consent
form should be placed in the project’s main record (e.g. a site file), which must be kept in a
secure location.

44
4.Focus Group Topic Guide
Objectives:
- Understand barriers faced by eye care service users before and after diagnosis
- Discover possible solutions, ideas, or recommendations to resolve the challenges faced
Concepts/Topics:
● Obstacles encountered by service uses to access resources available.
● Overall understanding of eye health and eye diseases among service users before and after they
were diagnosed with an eye condition.
● Eye care service users’ ideas, suggestions, and perceptions to increase primary prevention such
as: education materials on eye health in local stores, advertising, and any that could increase
service utilization (attending eye exams regularly, seeking help) among non- eye care service
users.

Starting questions:
1. How long have you all been attending this organisation?
2. What support services do you each use at this organisation? In what ways are they or not
benefiting you?
Transition Question- Could I now move on to discuss regarding your experiences and stories as an
eye care service user?
Specific Questions:
3. How did you seek help when you started to experience vision problems? Please share your
stories.
4. What problems or challenges you all faced before and after diagnosed with eye condition?
5. Can each of you could think of one suggestion, idea, or solution to improve eye care services that
would contribute to benefiting the community for early diagnosis?

Closing thoughts
6. Do you have any other thoughts or suggestions you would like to make?

Thank you all for your participation!! I would discuss about what my dissertation project will be,
and how it will be disseminated and shared with SRSB. Also, at the end clients can ask me any
specific questions about the project.

45
5.Search strategy used: Ovid Medline & Embase

6.Literature Review Articles

Title of the article Author & Date

1.Individual’s recollections of their experiences in (Douglas et al. 2010b)

eye clinics and understanding of their eye
condition: results from a survey of visually
impaired people in Britain.

2. Preventing sight loss in older people. A (Biddyr & Jones 2014)

qualitative study exploring barriers to the uptake of
regular sight tests of older people living in socially
deprived communities in South Wales.
3. Why don’t older adults in England go to have (Shickle & Griffin 2014)
their eyes examined?

4. A qualitative investigation into patients’ views (Glen et al. 2014)

on visual field testing for glaucoma monitoring.

46
5. Improving access to Optometry Services for (Leamon et al. 2014)
people at risk of preventable sight loss: A
qualitative study in 5 UK locations

6.Report: Adult UK Eye Health and Sight Loss (Adult UK eye health and sight loss pathway 2012)
Pathway
7.Report: Sight Loss UK 2012: The latest evidence (Royal National Institute for the Blind 2012)
from RNIB

8. Loneliness, social isolation and sight loss (Hodge & Eccles 2014)

9. Social inclusion, social circumstances, and the (Nazroo & Zimdars 2010)
quality of life of visually impaired older people.

10. Vision care for stroke survivors (Rowe 2014)

11. Understanding the lives of Older People with (Peace et al. 2016)
Vision Impairment
12. As Life Goes On- A closer look at how support (Cooper 2013)
services respond to the changing needs of people
with sight loss.

13. The needs of frail older people with sight loss (Cattan & Giuntoli 2010)

14. Changes in vision in older people: causes and (Nazroo et al. 2015)
impact

15. Assistive and Inclusion Home Technology: A (Stow 2015)

guide for people with sight loss.

47
7.Risk Assessment

University of Sheffield School of Health and Related Research (ScHARR)

Module HAR679/6024 Form HAR1
Risk Assessment Form for Dissertation Projects

Any Masters of Public Health (MPH) student completing a dissertation must complete this risk assessment form
in consultation with their academic supervisor before starting their dissertation. The form should be signed by
the student and supervisor. Students are advised to keep an electronic copy (preferably a scanned copy of the
signed form) for future reference and to include a copy of the risk assessment form as an appendix in their final
dissertation. The risk assessment should be revisited if any changes are made to the proposed research or any
circumstances change.

Please complete the requested details and/or mark the answer(s) that apply to your particular dissertation
project.

Q1. Overview of Your Research Project

Your name: Dedipya Immadisetty Your academic supervisor: Jennifer Read
Does your project involve any or all of the following?
• primary data collection (e.g. interviewing, surveying or observation in unfamiliar and/or private
settings);
• a work-based research placement;
• overseas activities;
• working in an unfamiliar environment in general (i.e. a place that is not known to you, where you
have spent little, or no time, previously).
Yes (If Yes, complete the rest of the form)
No (If No, there is no need to complete the rest of the form, just sign the form - Q5 - and seek your
academic supervisor's signature - Q6)
If Yes, please give brief details of your project here (i.e. topic area, details of planned research methods,
details of work-based placement, details of any overseas activities, any unfamiliar environments):
- Project Title: Evaluating and understanding challenges faced by eye care service users.
- Research Aim: To examine challenges faced by eye care service users in getting help and support before
and after they were diagnosed with an eye condition that caused sight loss in Sheffield, England.
- Research Question: What challenges or barriers did elderly with sight loss face in terms of accessing
services before and after their diagnosis with an eye condition?
- Objectives:
1. To investigate the perspectives and personal experiences of SRSB (Sheffield Royal Society for the Blind)
elderly clients on the knowledge they had on eye disease, accessing to information before and after they
were diagnosed with eye conditions that caused sight loss.
2. To integrate and interpret these findings, and to explore their possible implications to inform eye care
services and support for older people with sight loss as well as future research

Methods:
- Semi structured, in-depth one focus group will be conducted to explore the perspectives of elderly in
Sheffield who use Sheffield Royal Society for the Blind (SRSB) services in terms of their understating
regarding eye health before their diagnosis, and their awareness on available services.

48
 Sampling Technique:
- Purposive Sampling.

Intended site(s) for the project (e.g. details of organisational setting, town, country if not to be completed in
the UK):
Data Collection site: Sheffield Royal Society for the blind, an independent charity organisation that provides
support services for clients who have vision disability.
Address: 5 Mappin St, Sheffield S1 4DT
Sheffield, England.
Over which months will the project will be completed? (approximate start and end dates to the nearest
month, e.g. June 2012- August 2012):
After Ethical Approval, approximate dates: April – June

Will you be working on your own?

All of the time Some of the time Never

Q2. Potential security devices

Will you have a personal alarm? Yes No
Will you have a mobile phone? Yes No

Q3. Health
Should we be aware of any medical information concerning your health and fitness, which is relevant to carrying
out the project? Please enter ‘NONE’ if there are no foreseeable health/fitness problems.
- None.

Q4. Potential hazards inherent in project site(s) and/or research methods to be used
Are there any hazards associated with the sites at which you will be conducting your project and/or the
research methods you will use? For example, will you be working on your own in private spaces (e.g.
people’s homes), travelling through potentially unsafe areas to reach your project site, or conducting
interviews in politically volatile or potentially hazardous environments (e.g. around dirty water, at night,
busy urban markets)?
If so, what are these hazards and what arrangements will you make to manage and reduce these?
Please use the space/table below to record identified risks, who might be affected and how you will
manage the risks.
The risk assessment should be revisited if any changes are made to the proposed research or any
circumstances change.

49
SIGNIFICANT
HAZARD
Inconvenient for the client
to attend the focus group.
Client wellbeing
Risk of lone working.
POTENTIAL
COONSEQUENCES OF
HAZARD
Participants may not able to
come to the activities center
due to illness or another
reason but they feel obligated
to attend only because of
focus group.
Participants may express a
need for emotional support.
As a facilitator, I may face
difficulty to organise and act
accordingly if any issues arise
in the focus group
INITIAL RISK RATING EXISTING CONTROL/PROPOSED FINAL RISK RATING
(High/Medium/Low/No risk) CONTROL MEASURES (High/Medium/Low/No
risk)
High risk. - Firstly, transportation is available to Low risk.
Clients to attend activities center at
SRSB. Focus group will be done during
the usual time when clients come to
attend activities center. It will be
convenient for clients in terms of getting
to the focus group.
- Secondly, if a client will not be able to
make it to the session. He or she should
not feel pressured to attend. Clients will
be explained about he or she should not
feel pressured at any time when they are
given information sheet.
Medium risk. - The researcher will make sure that Low Risk.
clients are comfortable and respected
always when interviewing.
- Also, an SRSB staff member will be
present always to accommodate clients’
needs.
High Risk
- There will be a named SRSB staff Low Risk
member who will be liaising with me to
set up, and the staff member will be my
primary contact on site in case of any
issues/concerns which may arise.
- I will constantly be in touch my
supervisors Jennifer Read and Surinder
Bangar and update them about the date
and time of the groups, any changes,
and give contact information of the
SRSB staff member who will assist me
at the focus group.
- If possible, one of my supervisor will be
present during the focus group to
supervise me.
50
Q5. Student declaration
8.Thematic Coding
Codes Related codes
1. Flow of information a). communication between
doctor and the patient
I went to specs service, and
they saw my eyes and asked
what is wrong with me. I
couldn’t answe, my daughter
was with me. I went inside for a
check-up and sat in a room, and
they put these back in my
eye…. They came back about 10
minutes later, and said we need
to take you straight down to
the hospital. They said there is
all blood behind my eye. So she
took me straight down to the
hospital and did all the tests,
and the patient was told that
her one eye has been
completely blind for 30 years,
and she had to go every 6
weeks to get injections into her
Notes
a). The patient was not given
enough information about the
eye condition. She was not
properly diagnosed. The patient
shows fear and anxiety when
the optician told her that she
needs to be taken to the
hospital straight away. Even
after getting to the hospital
after all tests taken, patient had
no idea about what was going
on. She was not informed
about what tests are being
done on her. Also, no guidance
and support given to her about
what is happening in her eye
and she had to suddenly stop
injections due to cost and
because she had been having
them for so many years.
(attitudes of the doctor to the
eye ball. (participant 2; Focus
group1)
b). change of treatment was
not informed to the patient.
(Participant 3 FG1: After the
cataract operation, she was
told put eye drops regularly but
she had a problem as could not
see or put eye drops in her
eyes. 'But you can't have
anybody to put drops in your
eyes. So, you have to struggle
not being able to see'.
Participant 4 FG1: Well there is
this new method where Mr
Bran started me, I started to
put ointment 4 times a day for
3 days. When you have had the
injections, she puts the
ointment, and you don't have
to to touch anything. They
don't give anything to bring
home with you now. 'It is
working with me anyway. It's a
lot easier.
c). use of language to explain to
the patient about the eye
condition was not clear.
Participant 3 FG1: When
sometime ago, when I went to
the Opticians for an eye check-
up, he said 'Oh, I could see
something back of your eye. I
better refer you to the
hospital'. Participant 4 FG1: I
was diagnosied with AMD by
my Optician after I got my
cataracts removed. As time
went by, I first started to notice
spots around my head. After
consulting with the doctor, he
said you are not losing it you
know. He said, it comes with
this Charles Bonnet. Participant
2 FG1: When I have got mine
done, I felt like a broken glass
got inside my eye. It is a
horrible sensation. I have got 3
injections when I first got it
done, but after a while one day
patient). Also, clients shared
their thoughts on how they
recieved treatment at the
hospital. There was a gap in
informing and updating patient
with new method of treatment,
and patients with similar
condition like cataracts were
not given treatment in a
consistent manner. Each had a
different experience after
cataract operation, and when
they were given injections
some received additional help
from the hospital and some did
not.
Clients felt that Opticians as
well as the doctors at the
hospital did not provide them
with sufficient information
about their diagnosis. The
patient noticed many changes
after the cataract operation like
seeing spots, imaginary bricks,
bugs, etc symptoms of Charles
Bonnet, but they were not told
by the Optician about what
other eye conditions that could
occur due to sever loss of
vision. Also, doctors did not use
proficient language to explain
about the condition. Messages
given to the patient was
unclear: I could see something
behind your eye, this did not
provide any meaningful
information to the patient.
Also, prior to the cataract
operation, patient was not
informed about what are the
possibilities for it being
successful or unsuccessful. In
another scenerio, client
expressed a feeling of
frustration as she was given a
letter from the Optician to see
a specialist in the hospital. She
tried to explain to the doctor
that she wanted to get cataract
operation done in the right eye,
1
 they didn't give me any. They so that she will have one good
said that we don't do it now eye as her left eye became
because they have had so many completely blind. However,
who put it by themselves and doctors did not respond to her
got infected. Participant 7 and she reminded them but it
(Focus group 2): When I went was no use as they did not
to Optician to get new glasses seem to care in her perspective.
and she saw a defect in both
eyes so she sent me to the
hospital. When I got there, they
took me into this room and
took so many X-rays. Eventually
they said, 'oh, it is your age, he
says there is nothing wrong
with your sights it is your age'.
That night I went to bed and
next morning my eyes have
gone dark from the top half
way... By the time I went to the
hospital, my eys went dark
from bottom up. So I reminded
them 6 weeks went away so
now it is all blurred and
everything I look at it as
coloured spots. Thats how I am
trying to see.

2. No follow up care a). Patient does not receive any
care from the hospital after
treatment is provided.
Participant 3 FG1: I went to see
a junior doctor, she said that
there is nothing else we can do.
We will send somebody to see
you. We chatted with this Peter
from SRSB to get to know
something from here. She
didn't say where to be, and it
was end of that care. But I have
not a heard a word from the
hospital since then. They are
just not interested anymore.
Participant 8 FG2: I have to go
every year. They say looking
after sight what you have got
because this eye doesn't work. I
can't even tell if the eye lids are
closed or not. They said that
they are looking after me but
they don't. They don't do
Clients in both groups agreed
with each other on this
particular point regarding lack
of follow-up care at the
hospital. They lost hope in
receiving information and
support from the hospital.
Paritcipant 7 FG2: Yeah just
basic things. They didn't say do
this or do that. Just take tablets
regularly and that's it. After I
got my cataracts done, they
never sent me back to see
whether I was okay. If you have
cataracts or something like that
you should have follow-up once
a year. You should be able to go
back and check on them and
see if your eyes are getting
worse or better or what.

2
 anything, they take
photographs and x-rays like
that.
3. Burden of cost for the a). Not affordable for injections
after cataracts operation.
treatment after Participant 5 FG1: Well, I went
diagnosis to see Mr Chant, at that time
he said I had to get these
cataracts and I wanted to get it
done so I paid for them. Then
he wanted to give me injections
and then he said you will never
be able to afford them. These
injections cost 1000 pounds
each. Participant 3 FG1: So
that's why you only get a few.
4. Adaptation to change a). Role identity changes for the
patient and for the carer.
Participant 4 FG 1: There were
these things what you don’t see
and what you could see before
you know. Like if you drop
things on floor, you can't see.
There is a big change in your
life; you have got to accept it
and adapt to do these things
you know what I mean. I
bought some trousers this
weekend, and I just wanted to
adjust you know. I tried to put
the thread into that needle and
I can't. Participant 5 FG1: The
biggest thing for me was that I
couldn't drive anymore. I do
find cooking difficult at times, I
mean you try to fry an egg and
it misses and goes on the hot
plate. Participant 3 FG1: One
of the worst things is that I
have found out I can't go out on
Clients expressed fear when
they were getting diagnosed
because of the expenses for
treatment. They had to give up
on able to see a bit better due
to the cost for getting
injections. Fear of getting
diagnosed.. 'Gradually, my right
eye has been deteriorating as
well. So they told me I have
another good eye, you will
never go blind. But the way my
right eye is deteriorating it will
not be long. It may be couple of
years I might be blind. Totally
blind. Actually they have not
properly diagnosed me, I had to
see a specialist at the
Hallamshire, I was frightened
that they may suggest
something and I could't take so
decided not- Particpant 7 FG1.
Clients feared the change after
losing sight. Majority of them
started to accept their life
change after grieving process
when they were diagnosed.
Most of them could not adapt
to change like alternative ways
to cook, cannot go out and
importantly did not want to
depend on people. Some
recieved family or partner
support as carer support to
help with various tasks.
However, the fact that clients
had to quit their hobbies like
knitting, bicycling, reading
books, and so on due to sight
loss was their biggest challenge
and was considered the most
difficult experience.
Participant 6- FG2: You are left
out a lot. You know what I
mean. Well not like that, you
know like photos. I don't look at
3

5. No proper guidance towards
support services for the patient
from beginning
6. Lack of awareness about age
related eye conditions
my own. Participant 1 FG1: The
reading got worst out of all. It's
terrible. Participant 6 FG2:
b). Acceptance
c). Self-motivation
d). Self-learning to adjust
e). Affects one's emotional
health: loneliness, left out,
grief, sadness, frustration, and
fear of falling.
a). Patient was not directed in a
proper way to SRSB from
hospital.
b). They were not referred to
SRSB until they were diagnosed
with more than one eye
condition. When doctors gave
up on treatment, then they told
their patients about services
available at SRSB.
a). No prior knowledge of
getting AMD due to age, No
current information about
research shared to the public
about age related eye
conditions. Participant 3- See,
you just think that your are
eyes are getting worse because
you are getting older. You don't
realise that it is something that
is causing it.
b). Symptom led to the Optician
(sudden spots, blurred vision).
c). Some clients did not have
any symptoms before getting a
stroke that caused sight loss
photos because I can't see
them. I cannot see two
grandchildren, you know what I
mean. Participant 7- You look
in the morning, and you think
you want to impress someone
and you can't see anything.
Participant 5- I went to Mr
Chan who did my cataracts,
then he said I need injections
but he said you will never be
able to afford them. Then he
sent down to the hospital, and
from there they sent me to
here. Participant 1- Actually, it
was the community nurse, you
know they go around to look
and to see if you are okay. They
sent me here.
Patients were not informed
what support services are
available at SRSB to make
better choices earlier to adapt
to change.
Participant 5- It’s when they
find it for your when you go for
an eye test. I didn’t know that I
have got this macular
degeneration. I just knew that I
couldn't see good as I used to
be. I think they are important
people who do the eye test
because they set the ball rolling
for you to get treatment.
Participant 2- I just went down
on a Christmas day and as I
went to the table and got up
found something in my eye.
They took me straight to the
hospital, and they said that
they think there is stroke down
on this side, and that they may
make completely blind.
4

7.Difficulty to get an
appointment at the eye clinic or
at the hospital.
a). Cannot go directly to the
hospital, they have to go
through one's GP or referral
through Optician. Participant 5-
I couldn't believe it when it the
appointment came to go to the
hospital. It was a Saturday
afternoon, and it was this
Misses Pepper and all I got was
'oh well I got nothing to do with
my expertise go home'. Sorry!
Well I should not have been
sent there. But you see, the
doctor has said she has not
Most clients did not have
symptoms that led to sight loss
such as stroke. Participant 6- I
had an open when I went to
bed at night and when I woke
up, my left eye has gone; I had
no vision and couldn’t see
anything at all. It just
happened. After a month, it
happened to my right eye. So,
in the left eye I have got
nothing just lines and a few
shadows in my right eye.
Participant 11- It happend
when I was infront of my
computer. Participant 7- I
think you are same as me, you
probably had a blood vessel
burst. They just told me that it
was a stroke you know and
they said it could have
prevented if I have been taken
aspirin. So, if I had been taking
Aspirin, that wouldn't have
happened. Participant 6- No,
they said it was high blood
pressure. Participant 8- Same. I
don't know. It was one morning
when I woke up I couldn't see
anything through this eye, and
the other eye was a bit clear.
Not really clear a tall, but
gradually, I have never lost
vision in this life time but not
very good.
Clients expressed frustration
and were annoyed about the
fact that even after getting an
appointment and seeing the
doctor, some were not satisfied
due to the way doctor
communicated or talked to
them.
Most clients were discharged
by the hospital without being
informed about what could
happen with their eyes and
information about other age
5

8. No proper way of treating
the patient by the doctor at the
hospital
have had anything to do in my
eyes. In fact, to see her is like to
get an invitation to see the
queen quicker.
b). Unless it is emergency, one
has to go to the A&E eye clinic.
Participant 4- I have been going
up for now 8 years and they
have discharged and said I was
okay. Then they said if I had any
problems, I could come back.
Then I started not seeing
properly as I used to. I went
back to the A&E eye clinic and
they gave me an appointment
and hospital number and all
that. But then I said that I am
having problems again with my
eyes. The doctor said it could
come back again due to fluid at
the back of my eyes.
c). Still no treatment provided
at the A&E, patients had to take
an appointment
a). No positive relationship
between the doctor and the
patient
b). Patient was not comforted
before cataract operation.
Participant 3-When they told
me that it is up to you which
one you want to get it done.
She said that 'I can't decide for
you, you have got to decide for
yourself, and then I said oh well
in that case then I will have my
good eye done. She looked at
me and said but why, so I said
well, it's common sense to me.
She said, 'yes if it doesn't go
right you will have your other
eye done will you'. So, I said if I
have my bad eye done, and
then if I had the experience
that I did have I wouldn't have
related conditions that could
occur. Some agreed to each
other about how they were not
aware of why they were seeing
spots, moving objects, blurred
vision, sight being deterioated
after getting injections and
treatment.
Most clients felt terrible and
had a difficult experience
getting their cataracts done.
From patient's perspective, he
or she was not properly
comforted or given information
about the procedure of the
cataracts operation. The
patient was not provided
Clinician's explanation on what
is best before giving options to
choose. In this scenerio, client
felt shocked and surprised
when they told her to decide
which eye would need
cataracts operation. How can
the patient know what is best
for if she has no idea what's
happening to her eye. Doctor
did not show no interest in
explaining the details of
cataracts operation procedure,
6

9.Need of carer support after
diagnosis
10. Transportation issues
done for this one at all. So, I
ended up having my right done
first, then came the problem
because I can't see or put drops
in my eys.
c).No informed consent
provided to the patient to
choose the right treatment.
a). Some clients did not have
family to support them or help
them with taking medications.
b). No consistency of treating
patients across the area (some
patients were informed about
new treatment options
available while others were not
a). Cannot drive
b)Cannot cross roads, cannot
go to the movies, or go for
walks due to issues with
crossing roads. Participant 4- I
don't cross the road if there
isn't a sign or the one in the
and did not inform her about
the condition. Doctors did not
talk in a positive manner,
seemed to dismiss patients'
views
Participant 7- I don't have any
help. You know, I am pushing it
now really I got to consider.
Espescially, this morning when I
am taking my tablets, I am
making mistakes by putting
them in wrong places, and that
got me to the hospital long
back.
Participant 3- After my
cataracts operation, I couldn't
see or put drops in my eyes.
But you can't have anybody to
put drops in your eyes. There
are no nurses who come out
and do them. Participant 4-
well, they started this new
method after injections, she
puts the ointment and you
don't have to touch anything.
You know it is hard when you
can't see. It is a marvellous
method now, it is working with
me anyway. It is a a lot easier.
Here two clients who had the
same eye condition, but each of
them were provided different
methods of treatment. One was
updated on new method of
treatment and other one was
not from the hospital.
Clients did not like depending
on their children or friends to
go out for shopping, they had
no other choice. Some received
a local bus that takes them to
Morrisons near by, but they still
felt left out from outside world
7

11. Clients' were affected
emotionally after diagnosis
middle and get half way. My
brother said, 'find a place Joyce
where you can go half way and
then stand and then you can
go'. More often I would move
when someone else moves, and
I would cross with them.
Participant 7- Once, I just got
off the bus and I saw the traffic
and it stopped on the other
side of the road. I thought it
was my turn to go, and I put on
the foot forward and this car
came on the wrong side and
went so fast. Honestly, if I took
another step, I wouldn't be
here now. You know this kid
passed me and didn't look back.
I could imagine all the drivers
and those who stood there
were like probably thinking that
was it. I was completely blind at
that moment, I couldn't see.
Participant 3- Somebody once
came from the council, and I
was saying about not being able
to see this green to cross the
road. Then they said you only
have to feel underneath you
know where you push the
button and accordingly the man
changes when you twist this
thing. Well, I have gone to
Sainsbury in the corner which
got crossing in the middle.
There was just hole not got the
twisting button. I don't know
what happened. I didn't know
about these things until
recently. I immidiately went to
try it.
a). Clients view doctors had lost
interest in them after
treatment given at the hospital
b). Fear of falling or getting hit
when crossing roads
c). Self-motivation was needed
because they could not go out
for walks, or spend time
outside because of fear of
getting hit or falling down while
crossing roads. Most did not
take trams or buses for years
because the would not know
where to get off and how to get
to places as there would be no
help provided. Most of them
are afraid of seeking help from
general public to help them to
cross roads. Participant 7- It
would be nice if they would
take different places outside
the country side for a bit just
like certain things like that. You
see these disabled buses for
children they are all over place.
They need for blind you know
and take them out. Transport
to theatres and things like that.
Although, we probably just
listening instead of seeing.
Visually impaired were given
false hope regarding crossing
roads. No proper way of
communication between the
council and the public. People
with sight loss were not
properly informed through
Sheffield news about big
changes that could benefit
them.
8
 d). No carers support for some
people with sight loss

e). Clients expressed that their

family and friends do not spend
time with them

f). To be able to see better

g). Pain and grief due to sight

loss
h). Mistrust
i). Some do not get help with
grocery shopping

12. Barriers or challenges a). Struggle with cooking when

there is no family support

b). Cannot work, had to retire

c). Painful after cataract surgery

as it was not successful. Clients
had blurred vision still after
operation

13. Use of Assistive technology a). Magnifiers are not good

quality, it is of no use to clients

b). Red labelled stickers to

identify objects at home

c). City wide alarm, if one falls

or in case of emergency
d). Sheffield talking news and
books
e). Not affordable for everyone
with sight loss to use assitive
technology

14. Public perceptions towards
visually impaired
a). People are not aware that a
visually impaired person has a
stick. Participant 3- Bear in
mind, I have been going to this
church for 5 years so I have
gotten from ordinary walking
stick to a different one. He
came and I sat down and he
said, 'in matter of interest, why
do you use a white stick? I was
Majority of the clients
expressed frustration, anger,
surprised, annoyed, and mixed
emotions regarding the fact the
public do not understand
people with sight loss.

9
like pardon and I thought isn't it
pretty obvious a man like this. I
just couldn't get over him.
Peope do not think, I think he
just simply thought I have got a
white stick because it looked
alright. I just couldn't over it.
Participant 10- Even if we have
crutches and a white stick it is
useless. No one notices. If we
are walking around,no body
sees. Participant 7- I think we
should have a badge to tell
people that we can't see. They
think all blind people do not
wear glasses. Participant 6-
Sometimes you get, she don't
look like. But what does a blind
person look like? Mine is what
is wrong inside not outside.
b). public sometimes are
reluctant to help.
c). Visually impaired usually
face difficulties while grocery
shopping as no staff or anyone
are willing to help them

10