The Use of Accessible Information
in the Healthcare of People with Learning Disabilities
FINAL PROJECT REPORT
July 2015
Dominic Jarrett1, Sharon A McGregor2 and Melody M Terras2
1
NHS Ayrshire & Arran
2
University of the West of Scotland
i
ii
But one can often be in doubt about the effect of a word or a phrase,
and one needs rules that one can rely on when instinct fails. I think the
following rules will cover most cases:
1. Never use a metaphor, simile, or other figure of speech which you
are used to seeing in print.
2. Never use a long word where a short one will do.
3. If it is possible to cut a word out, always cut it out.
4. Never use the passive where you can use the active.
5. Never use a foreign phrase, a scientific word, or a jargon word if
you can think of an everyday English equivalent.
6. Break any of these rules sooner than say anything outright
barbarous.
George Orwell, 1946
(from ‘Politics and the English Language’ Horizon, April 1946, London
http://theorwellprize.co.uk/george-orwell/by-orwell/essays-and-other-works/politicsand-the-english-language/ )
iii
Acknowledgements
The research team would like to thank all members of the Steering Group for their
contribution to the project, namely, Dr. Karen L. Bell, and Lisa Clunie of NHS Ayrshire
and Arran, Morag Ferguson of NHS Education for Scotland, and Jean Butterly of the
Virtual Inclusive Partnership (VIPs). We would also like to thank the organisations
who met with us as part of the background research to this project, specifically, the
VIPs, Sense Scotland, the Scottish Consortium for Learning Disability (SCLD) and the
advocacy group for parents with learning disability at People First Scotland. We are
particularly grateful to the members of the VIPs for their contribution and
improvements to the interview questions. The patience and advice of Evelyn Jackson,
Co-ordinator of the West of Scotland Research Ethics Committee 4 was very much
appreciated in getting the project underway.
We would like to express our appreciation to the NHS Ayrshire and Arran team
leaders who disseminated the questionnaire to their staff members, and to those
members who completed the questionnaire and attended the focus groups. We
would like to give special thanks to all the Community Learning Disability Team staff
who arranged the interviews and supported Clients and Carers during the interviews.
Finally, we would like to express our extreme gratitude to all the Clients and Carers
who gave up their time to share their experiences of information provision.
The research was supported by Programme Funding.
iv
Project Steering Group
Dominic Jarrett
Research and Information Officer, NHS Ayrshire and Arran
[email protected]
01563 826423
Dr. Melody M Terras
Lecturer, University of the West of Scotland
[email protected]
Sharon McGregor
Researcher, University of the West of Scotland
[email protected]
Jean Butterly
Carer & VIP Facilitator
[email protected]
Lisa Malcolm
Speech and Language Therapist, NHS Ayrshire and Arran
[email protected]
Dr. Karen L. Bell
Head of Research and Development, NHS Ayrshire and Arran
[email protected]
Morag Ferguson
Educational Projects Manager (AAC), NHS Education for Scotland
[email protected]
All project materials (questionnaires, interview scripts, etc.) are available from the
Chief Investigator, D Jarrett: please do not hesitate to make contact for access to
these.
v
Executive Summary
The provision of appropriate information, and its comprehension, are key
components of quality health care and the promotion of wellbeing. The present
study explored the role of accessible information (AI) in this among people with a
learning disability, and in relation to other services and client groups, with particular
attention being paid to the use and production of easy read resources.
102 clinicians completed an online questionnaire which examined staff’s views and
experiences regarding AI, including its nature, important aspects, and their
involvement in its production. Respondents came from Learning Disability; Adult
Mental Health; Child and Adolescent Mental Health; and Primary Care services.
Focus groups with 35 staff, and semi-structured interviews with 10 people with
learning disabilities, and 10 carers (5 paid, and 5 unpaid), explored information
seeking behaviour and the use of AI to support inclusion and decision making.
Questionnaire data demonstrated variable use and understanding of AI across
services. Staff within the Learning Disability, CAMHS and Adult Mental Health
Services were significantly more knowledgeable regarding aspects of easy read
material than those in Primary Care, and were more likely to identify easy read
materials as being beneficial to a greater variety of populations (e.g. children, the
elderly, those with addictions or mental health problems).
Interview and focus group data emphasised the need to tailor information to the
needs of the individual, and highlighted the ways in which standard information can
disadvantage those with known or hidden literacy issues. Arguments for the general
relevance of easy read information were off-set against concerns that many would
find the materials ‘child-like’. People with a learning disability spoke positively about
the relevance of scenarios using photographs, the use of simpler language and larger
font. Carers described their key role as communication partners, and the way in
which accessible information was used to frame discussions around health.
Providing information to meet the specific needs of the individual was a prominent
theme for staff, carers and people with learning disabilities. There was evident scope
for the broader promotion of accessible information, as a means of addressing
service-created inequalities, but so too was a need for this to be better informed by
other existing areas of knowledge regarding cognition and design. Evolving this
agenda may benefit from the application of ecological and inclusive perspectives.
vi
Contents
1
2
INTRODUCTION ..................................................................................................... 1
1.1
What is Accessible Information? ....................................................................................... 2
1.2
Easy-read Information .......................................................................................................... 2
1.3
The use of pictures, symbols and photographs to help understanding ............ 4
1.4
The use of support to understand information ........................................................... 6
1.5
The production of accessible information ..................................................................... 8
1.6
The need for and relevance of accessible information ............................................. 9
1.7
The aims of this research project .................................................................................... 11
METHOD ...............................................................................................................12
2.1
Participants ............................................................................................................................. 12
2.2
Questionnaire ........................................................................................................................ 13
2.2.1
Pilot ................................................................................................................................... 13
2.2.2
Questionnaire sampling process ............................................................................ 14
2.3
Focus groups .......................................................................................................................... 14
2.4
Interviews ................................................................................................................................ 15
2.4.1
Interview recruitment.................................................................................................. 15
2.4.2
Interview schedule consultation ............................................................................. 17
2.4.3
Interview materials ....................................................................................................... 17
2.4.4
Interview locations and duration ............................................................................ 19
2.5
3
4
Interview and focus group transcription and coding .............................................. 19
QUESTIONNAIRE RESULTS..................................................................................20
3.1
Section A. Types of accessible information ................................................................. 21
3.2
Section B. Easy-read information.................................................................................... 23
3.3
Section C. The use of easy-read information ............................................................. 29
3.4
Section D. The production of easy-read information.............................................. 35
CLIENT INTERVIEWS: RESULTS ...........................................................................40
4.1
Theme 1: Experiences and preferences of health information ............................ 40
4.2
Theme 2: Involvement in Health Care ........................................................................... 43
4.3
Theme 3: Perceptions of NHS written information .................................................. 46
4.3.1
Appointment Letters: Standard and Easy-Read ................................................ 47
vii
4.3.2
NHS Confidentiality Leaflets: Standard Vs Easy-Read .................................... 49
4.3.3
Learning Disability Service Leaflet.......................................................................... 51
4.3.4
‘Beating the Blues’ Booklet ....................................................................................... 52
4.4
5
Theme 4: Involvement in the production and evaluation of easy-read ........... 54
CARER INTERVIEWS: RESULTS ...........................................................................56
5.1
Theme 1: Carers as facilitators of Clients’ health and wellbeing ......................... 56
5.2
Theme 2: Experiences of NHS services ......................................................................... 61
5.3
Theme 3: Carers’ views and experiences of health information Provision ...... 64
5.4
Theme 4: Easy-read: form and function ....................................................................... 66
5.5
Theme 5: Carer perceptions of examples of NHS written information ............. 69
5.5.1
Appointment Letters; Standard v Easy-read ...................................................... 69
5.5.2
Health Information Scotland Confidentiality leaflet: Standard v Easy-read
............................................................................................................................................ 70
5.5.3
CLDT Information Leaflet .......................................................................................... 71
5.5.4
Beating the Blues ......................................................................................................... 71
5.5.5
Project Information Sheet: Standard Vs Easy-read and standard .............. 72
5.6
6
7
Theme 6: Involvement in evaluation and production of easy-read ................... 72
FOCUS GROUPS: RESULTS ..................................................................................74
6.1
Theme 1: Experiences of current health information provision ......................... 74
6.2
Theme 2: The importance of accessible information resources .......................... 75
6.3
Theme 3: Easy-read: form and function ....................................................................... 76
6.4
Theme 4: Making information accessible: processes and challenges ............... 78
6.5
Theme 5: The role of carers .............................................................................................. 81
6.6
Theme 6: The wider applicability and future of Accessible Information .......... 84
DISCUSSION .........................................................................................................86
7.1
The nature and range of accessible information currently provided ................ 86
7.2
How clients, carers and staff use accessible information....................................... 88
7.3
What clients, carers and staff perceive as the important aspects of accessible
information ............................................................................................................................. 89
7.4
Does existing accessible information meet the needs of clients, carers, and
staff? .......................................................................................................................................... 94
7.5
How staff, clients and carers can be supported in the production and use of
accessible information ........................................................................................................ 96
viii
7.6
Future provision of accessible information .............................................................. 100
7.7
Study Limitations ............................................................................................................... 104
7.8
Next steps ............................................................................................................................ 104
7.9
Importance to NHS and possible implementation ............................................... 105
7.10 Dissemination ..................................................................................................................... 107
8
CONCLUSION ..................................................................................................... 108
9
REFERENCES....................................................................................................... 109
ix
1 INTRODUCTION
In 2013, the Scottish Government launched the Keys to Life, a renewed ten-year
learning disability strategy based on the evaluation of the Same as You (SAY)
(Scottish Government, 2000). One of the main focuses of the new strategy was on
health, with a view to redressing the inequalities still experienced by people with
learning disabilities (Scottish Government, 2013). When compared to the general
population, people with learning disabilities tend to experience poorer health but, as
this is not reflected in higher access rates to primary healthcare (combined with
frequent issues with mainstream services when they do access them), their health
needs are often left unmet (NHS Health Scotland, 2004; Scottish Government, 2012;
Webb & Stanton, 2008).
The health inequalities experienced by people with learning disabilities share, in part,
the same complex origins as those experienced by the general population. A recent
report from the Health and Sport Committee (2015) highlights the general
experience of health inequalities as a significant cause for concern, and attributes
those inequalities to a complex array of causes, including low income, poverty, poor
housing, and low educational attainment.
For people with a learning disability, these causes are further compounded by issues
such as poor access to health screening and services (Gribben & Bell, 2010;
Robertson et al., 2011). Underlying this poor access, and other issues, is a lack of
information which appropriately reflects the communication needs of and empowers
people with learning disabilities, and which impedes their access to the healthcare
services they need (Webb & Stanton, 2009). The Scottish Executive (2000) estimated
that 80% of people with learning disabilities experience some communication
difficulties, and 50% have significant communication problems. As a result, they
often have to rely on family and carers to support them with healthcare, to identify
their health needs and to sometimes make health decisions for them (Ferguson et al.,
2010; Ferguson & Murphy, 2013; Scottish Executive, 2000; Scottish Government,
2013).
The provision of information in an accessible way is a key recommendation of a
number of policies aimed at reducing the health inequalities experienced by people
with learning disabilities (e.g., NHS Health Scotland, 2012; Scottish Government,
2013), as well as reflecting the importance of providing information in a way that
everybody understands. However, although a variety of guidance exists with regard
1
to the production of accessible information (e.g., Rodgers & Namaganda, 2005;
Mencap, 2005; SAIF, 2010), existing research offers minimal insight into how people
with learning disabilities engage with accessible materials, how carers and staff make
use of accessible information when interacting with clients, and the process involved
in producing and implementing accessible information.
1.1 What is Accessible Information?
Accessible information was defined within a position paper from the Royal College of
Speech and Language Therapists in 2010 as follows:
‘A supportive process of making information easier for people with learning disabilities,
that firstly involves simplifying the linguistic message and secondly conveying the
simplified message in different mode(s) of communication, i.e. not just the written word
or spoken message’ (RCSLT, 2010, p26).
Two aspects of this definition are of note: its description of accessible information as
being a process involving the use of a simplified message; and its specific focus on
people with a learning disability. The latter aspect is to be expected given the
purpose of the originating document (a position paper in relation to adults with
learning disabilities), however this arguably limits the potential relevance of
accessible information approaches, and fails to recognise their ongoing use in
relation to other care groups.
In terms of resources, accessible information can be produced in a variety of formats,
including video (Boyden et al., 2009; Dunn et al., 2006), audio (Scott et al., 2001), and
drama (Joronen et al., 2008), a well as mediums such as Braille. However, accessible
information is commonly conceived of as being written information incorporating
clear text and appropriate images (easy read information).
1.2 Easy-read Information
Easy-read has been identified as being a beneficial format for presenting information
to people with learning disabilities (SAIF, 2011: see Figure 1.1 below for an example).
The aim of easy-read information is to provide written information in a way that can
be understood easily, which usually means that information is presented using
2
simple words and pictures, to support the reader’s understanding of the message
that is being conveyed.
Figure 1.1. Example of easy-read resource (Community Learning Disability Team
(CLDT) Information Leaflet)
According to Rogers and Namaganda (2005), easy-read information should be kept
short and focused on key points without the loss of crucial detail. There are a variety
of guidelines available from different organisations advising on how to produce
information in an accessible way (see Table 1.1), and most focus on the production of
easy-read text, and the appropriate use of images. While there is some variance
across the guidelines with regard to the standards they promote, there are a number
of aspects regarding which considerable consistency is evident:

Fonts used should be sans-serif (e.g. Arial as opposed to Times New Roman)

Text should be highlighted by the use of emboldening, as opposed to
underlining or all-caps

The use of jargon should be avoided

Sentences should be short (15-20 words), and contain one idea

Images should be in the left hand margin

Text should be left aligned (to maintain consistent spacing between words)

Numbers should be used instead of words (e.g. ‘2’ instead of ‘two’)
3
Organisation
Easy-read Guidelines Used (as at 2014)
Change
‘How to make information accessible. A guide to
producing easy-read documents’.
Department of Health (DOH)
Making written information easier to understand
for people with learning disabilities (2010).
Enable Scotland
In the process of developing their own but
currently use Mencap (2009) and DOH (2010).
Norah Fry Information for all
287 pages and no contents sheet…it is easy-read
but with no contents sheet it is not the most user
friendly.
Mencap
Make it Clear (2009)
NHS Communications Department
‘Making information easy to read’
& RNIB guidelines
Scottish Accessible Information
Making Information Accessible (2010)
Forum (SAIF)
Scottish Consortium for Learning
Primarily use Mencap guidelines and refer to other
Disability (SCLD)
guidelines for different situations.
Social Care Institute for Excellence
‘How to produce information in an accessible way’
(SCIE)
(2005).
Table 1.1. A sample of organisations that use or produce easy-read guidelines.
In relation to those listed guidelines listed in Table 1.1, some variation is evident. For
example, while the guidelines produced by Mencap (2009), the Department of Health
(2010), and Change (2009) recommend placing images to the left of text, those
produced by the Social Care Institute for Excellence (SCIE, 2005) recommend placing
them to the right of text.
1.3 The use of pictures, symbols and photographs to help understanding
Pictures, symbols, and photographs can help to convey a message quickly and be
effective in assisting with understanding across both language and cultural barriers,
and their appropriate use is frequently encouraged within guidelines for producing
accessible information. However this practice has occurred, to some extent, in the
absence of a supporting evidence base, with existing research indicating mixed
results as to their impact.
4
Jones et al., (2007) conducted a study with 19 adults (average age was 46 years and
10 months) with mild or borderline learning disabilities (IQ levels 50-79), and found
that adding symbols (Widgit Rebus symbols) to text significantly improved
understanding. The findings also suggested that familiarity with the symbols used
may increase the benefits. In contrast, Poncelas and Murphy (2007), using primarily
Makaton symbols, found that the addition of symbols to text did not make any
difference to understanding in their study of 34 adults with learning disabilities.
The two studies differed in significant ways (e.g. different symbol systems were used,
with arguably different levels of transparency1; different approaches were taken to
symbolising (or not) words for which symbols were not available in the chosen
system; Jones et al. asked participants to read materials themselves, while Poncelas
and Murphy read the materials to their participants; and insufficient information is
provided to be sure about the comparability of participants). In relation to the
different symbol systems used, it is relevant to note the work of Strydom et al. (2001),
who found that service users who were consulted on the design of an easy read
medication information leaflet (n=4), expressed a preference for more pictorial
images from the Change picture bank, as opposed to more abstract Symwrite
symbols. Strydom and Hall (2001) subsequently reported that, in a randomized trial
involving 50 participants with either a mild or moderate learning disability, the easyread medication leaflets developed did not have a beneficial impact on the
knowledge scores of participants regarding their content. Indeed, they suggest that
in the short term, such leaflets may confuse people with a mild learning disability:
those with a moderate learning disability may be less affected as a result of their
lower reading ability.
A further perspective is afforded by the work of Hurtado et al. (2013), who examined
the knowledge gains demonstrated by participants with a learning disability
accessing two types of materials (1) text and supporting photographs, or (2)
photographs with the accompanying information being read aloud by a clinician. On
the basis of results for 44 individuals (for whom measures of verbal intelligence were
also recorded), they concluded that leaflets in either form where beneficial to
increasing levels of knowledge. However, the results also suggested that, for
participants with a milder learning disability, the use of images alone (supported by
an audible description) may be preferable to images alongside text. The authors
1
Transparency in this context relates to the extent to which a symbol readily suggests its referent (Detheridge
and Detheridge, 2002)
5
postulate that this counter-intuitive result reflects the combination of text and
images resulting in sensory overload, limiting the availability of cognitive resources
to process the text itself. While the latter authors recognise the existing evidence
base in relation to the benefits of adapting text to meet the needs of people with a
learning disability (e.g. Karreman et al., 2007), they express concern about the
widespread use of both text and images within easy-read materials and recommend
that future research and practice should be informed by the theories and research
that account for an individual’s ability to process and comprehend text.
1.4 The use of support to understand information
Recently research has extended the concept of accessible information away from a
focus on the content of the accessible resource itself, towards a more process
oriented perspective which reflects the definition offered by the RCSLT (2010), and
which explicitly recognises the role of a communication partner (e.g. family member,
carer, Speech and Language Therapist or other healthcare professional) working
alongside the individual, in order to facilitate understanding.
Mander (2013) conducted a qualitative study involving 18 participants (adults with
learning disabilities, staff from a learning disability service, speech and language
therapists, and other NHS and local authority staff) in order to explore the
implementation of accessible information. A mix of interviews, focus groups and
observations (involving 8 further participants, 4 service users and 4 Community
Learning Disability Nurses) were used. Within the study, the process-oriented
perspective was conceptualised as the ‘Triangle of Accessibility’, where the person
with learning disabilities and their communication partner work together with the
accessible resource to make it more meaningful to the person with learning
disabilities. Conceptualising the implementation stage as an interactive process
captures the significant role that carers, family members and professionals play in
making information accessible. In fact, many of the interviewees highlighted the
necessity of supporting any resource with an accompanying discussion.
Work by Willis (2014), and Ferguson et al. (2010) further evidences the importance of
the discussion accompanying an information resource. Willis (2014) conducted
interviews with 12 paid-carers and 3 family-carers of people with learning disabilities,
most of whom reported that the person they were supporting always needed help to
understand information about their health. Knowledge of the person they supported
6
was identified as being key to successfully conveying information in a way which
reflected the individual’s abilities, but also achieved a balance between providing
enough information, and providing so much information that it became anxiety
provoking. Images could be used to support this process, however, the extent to
which these health-focused conversations took place at all was influenced by
whether the carer’s organisation saw health as being their responsibility, as well as by
the knowledge and education of the carer themselves.
In some ways, this links to observations made by Ferguson et al. (2010), who
interviewed clients and carers, and carried out group discussions with Physiotherapy
staff, in relation to attendance (and non-attendance) at Hydrotherapy. Within the
staff discussion, it was suggested that while information was available to clients and
GPs regarding Physiotherapy interventions, no specific information was available for
carers, which would enable them to appropriately inform decision making by the
person they supported regarding engagement with the intervention.
The work of Willis (2014) and Ferguson et al. (2010) highlights the range of issues
which can impact on the efficacy of the communication partner within Mander’s
Triangle of Accessibility. The role of the resource which they and the person with a
learning disability interact with is one which Mander (2013) reframes, in the interests
of drawing further attention to the importance of successful interactions in
promoting understanding. The latter author suggests that more time and effort
should be used to explore how a communication partner can adapt standard
accessible resources rather than ‘continually struggling with the production of the
perfect resource’ (p, 23). However, the proliferation of guidelines in relation to the
production of accessible information, not only for people with a learning disability,
but also others (e.g. those with dementia: The Dementia Engagement and
Empowerment Project, 2013), and the strategic importance attached to accessible
information (Scottish Government, 2011), highlight the important of good resources
as a starting point for that interaction.
Indeed, it is of note that, in another study undertaken as part of the Mander (2013)
research (involving observation of clinicians and service users discussing an
accessible information resource), Mander also reflects on how the resource became a
template for the discussion. As the latter author states, ‘...the nature of discussion
during the implementation of the AI was in part predetermined by the quality and
accuracy of the accessible resource being used’ (Mander, 2013, p285). Arguably, while
7
the process aspect of accessible information is crucial, the importance of starting
with a high quality resource should not be understated.
1.5 The production of accessible information
There are a number of different factors that need to be considered when designing
accessible information. Rodgers and Namaganda (2005) stress the importance of
being clear about the aim of the information being produced (e.g. why it is being
produced, what it is about and who it is for), to consider the best medium for
presenting the information (e.g. leaflets, CDs, audio and internet) and to work with
the people for whom the information is intended. The latter element is one which is
being increasingly recognised by research, with Ward and Townsley (2005),
suggesting four basic principles about working with people learning difficulties to
develop accessible information: (1) involve them at the start, (2) test a draft of the
information, (3) find more practical ways to involve them (e.g., writers,
photographers, presenters) and (4) evaluate the final draft.
When testing the final draft of a piece of accessible information, regardless of the
format, it is important to keep in mind that not every person with a learning disability
has the same level of understanding. Therefore, a document that can be easily
understood by (and is therefore accessible to) one person, may not be easily
understood by (and may therefore be inaccessible to) another due to differing
communication needs. This is particularly relevant with mass-produced easy-read
documents. Working with people with learning disabilities from the outset of the
development of accessible information increases the likelihood of useful and
appropriate information being produced (Ward & Townsley, 2005).
However, writing in an accessible way is not necessarily straightforward. Llewellyn
(2007) shares their experience of writing an accessible report examining the advocacy
role of learning disability nurses. The accessible version of the report was given to a
group of researchers with learning disabilities to critique before it was distributed
more widely. Llewellyn comments that the group provided feedback on
improvements including the changing of wording, layout and images used in the
report, which were found to be confusing (albeit the improved document was not
tested to see whether understanding was increased). Whilst the group of researchers
may have been experienced with handling accessible information (and were
therefore not naïve readers) this emphasises that including people with learning
disabilities in evaluating accessible information can help. This highlights the need for
8
more in-depth research incorporating the whole accessible information process,
rather than just focussing on either the production or implementation.
1.6 The need for and relevance of accessible information
While evidence is still emerging regarding the use of accessible information in
relation to people with a learning disability, it is not solely in relation to that client
group that the issue is of relevance. In promoting the need for information to be
accessible to all, the Scottish Government (2011, p5) notes that a failure to provide
this may lead a person to:

avoid services completely.

miss appointments and therefore health care.

feel and express strong emotions such as anger, frustration, embarrassment or
anxiety.

behave in a way which can present challenges to service providers, e.g., might
only want to see certain staff, or appear inflexible, unpredictable or unreliable.
Given the reliance on written communication within the public sector, it is pertinent
to consider accessibility of information in the context of general literacy. The
Scottish Government’s Literacy Action Plan (2011) noted that (based on 2009 data),
while 25% of the population would benefit from improving their literacy skills, only
3.6% had very limited capabilities.
While these levels compare favourably to others internationally, they do not in
themselves suggest that only the 3.6% may be experiencing issues with information
provided by the public sector. Rutherford et al. (2006) noted the disparity that exists
between the readability of information provided within the NHS (in that study, within
2 sexual health services), and the literacy levels of service users (in that the materials
are pitched at a higher literacy level than a good proportion of service users
demonstrate). Bennett and Gilchrist (2010) undertook a readability analysis of
appointment letters used within a young people’s mental health service, and found
that 8 out of 13 were unlikely to be understood by the client group. Reflecting this,
the appointment letters were re-drafted (e.g. sentences were shortened, alternative
words were used, and the number of passive sentences reduced): feedback (all-be-it
limited) from patients and families indicated that the majority found the revised
versions to be preferable, and more understandable.
9
Protheroe et al (2015) undertook a review of patient information leaflets in a random
sample of 17 general practices across Stoke-on-Trent, using the Flesch Reading Ease
and Felsch Kincaid tests as measures of their readability. Considering the findings in
relation to 2011 data regarding the literacy of the adult English population aged 1665 (2011 Skills for Life Survey), they found that on average, information leaflets within
the general practices surveyed were too complex for 43% of the population. In terms
of the patient empowerment agenda within which Protheroe et al (2015) situate their
work, there is potentially a significant mis-match between aspirations and strategic
commitments in relation to this (Scottish Government, 2010) and the ability of service
users and staff to make use of the information available to support them in realising
it.
Furthermore, Protheroe et al. (2015) also comment on the potential for poorly
designed and inaccessible patient information leaflets to exacerbate existing health
inequalities. The link between low levels of literacy and social deprivation has long
been recognised and remains a significant issue within Scotland today. The Scottish
Government (2011), while describing the general literacy levels of the Scottish
population in broadly positive terms, also describes the link between literacy scores
and socio-economic status, in that those from more deprived areas have been found
to have lower scores. This is reinforced by the results of the most recent Scottish
Survey of Literacy and Numeracy (2014 figures, published 2015).
The possible ramifications of this are manifold, however it is of relevance to note that
within the report of the Health and Sport Committee (Scottish Parliament, 2015),
social deprivation is also linked to higher levels of patients not attending
appointments (DNAs). While it is conjecture to draw a link between this and literacy
levels, it is of note that Bennett and Gilchrist (2010) describe the hoped for benefits
of their redrafted appointment letters as including, ‘improved attendance at
appointments and greater engagement with the service’ (p105). While the
communication needs of many people with a learning disability are cause enough for
examining issues of information accessibility, the fact that people with a learning
disability are heavily over-represented within the more deprived areas of Scotland
(compared to the size of the learning disability population: Scottish Consortium for
Learning Disability, 2014) further underlines the relevance for them and others of
addressing this issue.
10
1.7 The aims of this research project
The momentum behind the implementation of accessible information is
considerable, and growing. However, as the preceding discussion has highlighted,
there remain significant gaps in the evidence base, not least in relation to the use
and the real world experiences of people with learning disabilities, their carers, and
clinicians. As has been suggested here and elsewhere (Protheroe, 2015; Mander,
2013; Bennett and Gilchrist, 2010), the issue of accessible information has relevance
not only for people with learning disabilities. For this reason, extending the evidence
base to encompass experiences within other settings is to be encouraged.
Within the present research, the experience of members of the research team, and
colleagues, suggested the following services as relevant to include:

Learning Disability Service

Adult Mental Health Service

Primary Care (Health Visitors, District Nurses, and Practice Nurses)

Child and Adolescent Mental Health
With this context in mind, the primary aim of this study was to examine how
accessible information materials are produced, used and implemented by NHS
Ayrshire and Arran staff within a variety of healthcare settings, and by people with
learning disabilities and carers.
The five secondary research objectives underpinning this agenda were to:
1. Identify the nature and range of accessible information currently provided.
2. Explore how Clients, Carers and Staff make use of accessible information.
3. Identify what Clients, Carers and Staff perceive as the important aspects of
accessible information.
4. Establish whether existing accessible information meets the needs of Clients,
Carers and Staff.
5. Explore how Staff, Clients and Carers can be supported in the production and
use of accessible information
11
2 METHOD
Prior to conducting the project, members of the research team liaised with a number
of organisations to gain a deeper understanding of accessible information, to help
inform the research process and to raise awareness of the project’s existence. Those
organisations included the Virtual Inclusive Partners (VIPs: an advocacy group for
people with learning disability based in Kilmarnock); People First Scotland (an
advocacy group for parents with learning disability); Sense Scotland; the Scottish
Consortium for Learning Disability (SCLD); and NHS Fife. The value of partnerships
was further reflected in the project steering group, which included clinicians,
researchers, and an unpaid carer.
The research itself was conducted over the three localities of NHS Ayrshire and Arran,
namely, South Ayrshire, East Ayrshire and North Ayrshire. A mixed methods
approach was undertaken, involving questionnaires and focus groups with staff from
a variety of settings within NHS Ayrshire and Arran, in addition to interviews with
people with learning disabilities and carers (both paid and unpaid). To achieve this,
a great deal of partnership working was required with a number of services including
the Learning Disability Service, Primary Care, Adult Community Mental Health and
Child and Adolescent Mental Health.
The project was approved by the West of Scotland Research Ethics Committee 4, and
NHS Ayrshire and Arran Research and Development Management.
2.1 Participants
A combination of random sampling and purposive sampling was used to recruit a
total number of 157 participants:

102 clinicians completed the questionnaire,

35 clinicians participated in focus groups

10 people with a learning disability participated in interviews (5 male, 5
female: 1 male was supported by a family member within the interview)

5 unpaid carers participated in interviews (5 female, however interviewee was
supported by their husband within the interview).

5 paid carers participated in interviews (2 male; 3 female)
12
2.2 Questionnaire
The questionnaire contained 24 questions, which were a mix of open and closed
questions2 grouped into four sections:
a) Types of Accessible Information (Questions 2-4)
b) Easy-Read Information (Questions 5-9)
c) The use of Easy-Read information (Questions 10-16)
d) The production of Easy-Read information (Questions 17-22)
The final 2 questions had a broad focus and asked staff about their access to learning
disability awareness training, and invited them to provide general comments on
easy-read information.
A pre-test of the questionnaire was conducted by the members of the steering group
to refine the content, and ensure that the questions being asked tied in with the aims
and objectives of the study. As a result, the questionnaire was revised several times
with the final revision being issued to the statistician associated with the project for
further review, prior to piloting.
The final version of the questionnaire was transferred on to Survey Monkey and, in
order to improve consistency of the question structure and reduce the propensity for
survey fatigue (Merolli et al., 2014), the question logic facility in Survey Monkey was
utilised, to allow questions to be skipped that were not pertinent to individual
respondents (based on their responses to other questions).
2.2.1 Pilot
Using purposive sampling, 31 Allied Health Professionals (AHP’s) working within the
Learning Disability Service were invited to participate in the online questionnaire
pilot. This consisted of 13 Physiotherapy staff, 11 Occupational Therapy staff and 7
Speech and Language Therapists. Sixteen AHP’s participated but only 12 completed
the questionnaire fully, resulting in a response rate of 52% and a completion rate of
75%. This response rate is higher than the average response rate of 39.6% reported
by Cook et al., (2000) in their meta-analysis of 68 surveys reported in over 49 studies.
2
For copies of the questionnaire and other project materials, please contact D Jarrett (contact details provided
at front of document)
13
General feedback on the questionnaire was positive. Some minor changes were
made to the response options for 2 items as a result of the pilot.
2.2.2 Questionnaire sampling process
Purposive sampling was used to invite clinicians from across a variety of services to
complete the online questionnaire. Dissemination of the questionnaire to clinicians
was via service management (e.g. team leaders and practice managers). Primary care
respondents were drawn from Health Visiting, District Nursing and Practice Nurse
teams. The mental health services sample included Nurses from the Learning
Disability Service (including Nursing Assistants/Support Workers in both community
and Assessment and Treatment settings); Nurses from the Adult Community Mental
Health Teams; and any staff at Band 6 and below from the Child and Adolescent
Mental Health services (CAMHS). The latter category potentially included Nursing
and Occupational Therapy staff, as well as Assistant/Trainee Psychologists. With
regard to Health Visitor teams, the largest such team in each locality was targeted for
dissemination of the questionnaire (59 staff). For District Nursing teams, as these are
smaller than the Health Visitor teams, the largest two District Nursing teams were
targeted (also 59 staff). All Practice Nurse teams attached to GP practices were
invited to participate; in the event, only 4 did so. It was partly in response to this that
the sampling method outlined was used in relation to CAMHS, in order to bring the
number of potential respondents up to a productive level.
2.3 Focus groups
Adult Mental Health and Learning Disability Service staff were invited to participate
in focus groups via the online questionnaire and through their team leaders.
Purposive sampling was used to target primary care staff (practice nurses, health
assistants, health visitors and district nurses) working within two specific GP practices
from each locality - the practice with the most patients known to have a learning
disability and the one with the least, as identified within information held by the
Learning Disability Primary/Acute Liaison Nurses. When a practice could not
participate, the researcher contacted the next practice on the list, i.e., the next
smallest or next largest. CAMHS staff were involved via the researcher approaching
CAMHS team leaders, and at their invitation, identifying 1 team meeting at which the
focus group discussion could be carried out. A total of 35 staff (19 from Learning
14
Disability Service, 5 from Primary Care and 11 from CAMHS) from a variety of
professions participated in five focus.
Two focus groups were held within the East locality, two within the South locality and
1 in a GP practice. The focus groups were semi-structured and explored four main
areas - communication, easy-read information, accessible information and the
broader organisational and legislative context.
2.4 Interviews
Interviews were conducted with 10 clients and 10 carers (5 paid and 5 unpaid) who
were randomly sampled from a list of service users active to the 3 Community
Learning Disability Teams (CLDTs) within Ayrshire. The number of participants
recruited from each locality is shown in table 2.2.
Participant Nos. Recruited
LOCALITY
Clients
Carer
Paid
Unpaid
SOUTH
3
1
2
EAST
3
2
1
NORTH
4
2
2
Table 2.1. The number of participants recruited from each locality.
2.4.1 Interview recruitment
The CLDT Co-ordinator from each locality provided the active caseload number for
their team as of end of July 2014 to the researcher (East Ayrshire=373; North
Ayrshire=310; South Ayrshire=396). Random number generation was used to select
clients and carers for interview: those identified by the team were initially screened
by clinicians familiar with them as to the appropriateness of their potential
involvement. For clients, this included a consideration of their ability to engage in
the interview process.
When arranging interviews, the clinicians familiar with the clients and carers
contacted them about participating, discussed the participant information sheet with
them and, if they were agreeable, arranged an introductory meeting with the
15
researcher. All participants were given the option of being supported at the
interview by someone they knew.
Clients: It was originally intended that the researcher would meet each client twice,
the first time for the Clinician to introduce the researcher to them and then 3 days
later for interview. This was to give Clients time to consider whether they wanted to
proceed with the interview. However, in all cases, the Clinician involved advised that
their Client would like the introductory visit and the interview to be conducted in one
visit. So at each meeting, the researcher discussed the project, went over the
participant information sheet and double-checked firstly, whether the client still
wanted to participate and secondly, when they would like the interview to be
conducted. If Clients still wanted the interview to be conducted that day, and as long
as three days had passed since they had expressed their willingness to the Clinician
about participating, then this was deemed acceptable. One Client asked for the
interview to be conducted on a follow-up visit so another date was arranged to suit
the Client. All 10 clients chose to be supported at the interview (9 clients were
supported by a clinician from the learning disability service, 3 of which were also
supported by a family member; and 1 client was supported by a clinician at the
introductory meeting and then only by their paid carer at the interview).
Paid Carers: Once paid-carers had expressed their interest and willingness to
participate, Clinicians provided the researcher with the paid-carer’s contact
telephone details so an interview date could be arranged (or vice versa in one case).
Four interviews were conducted in the paid carer’s work premises and one interview
was conducted in a paid-carer’s own home. A clinician was not present at any of the
interviews.
Unpaid Carers: A clinician arranged 3 out of the 5 interviews and, for the remaining
2 interviews both unpaid carers telephoned the researcher direct to arrange an
interview date. As both carers were known to the service and did not feel they
needed to be supported, the researcher attended those interviews without the
clinician. The 3 remaining unpaid carers chose to be supported at the interview (2
were supported by a clinician and 1 was introduced by a clinician but supported by
another family member for the interview).
16
2.4.2 Interview schedule consultation
Two interview schedules were prepared (one for carers and one for clients). The
carer involved on the project steering group was asked for feedback on the carer
interview questions. There were no changes required for the carer interview
questions. Members of a citizen advocacy group of people with learning disabilities
assisted in finalising and assessing the appropriateness of the client interview
questions. This involved the researcher attending the advocacy group’s weekly
meeting, which was attended by 15 members and three support staff, and piloting
the interview questions. The researcher read each question aloud and obtained
feedback after each one, which resulted in the addition of 2 new questions and the
alteration of one. The 2 new questions consisted of an opening question to ask
whether they are given information about their health (rather than just assuming this
occurred); and another asking if they had ever wanted to find out information about
their health. Question 2, which explored the different ways people receive
information, was altered to include 2 additional items, i.e., to include group
discussions and presentations.
2.4.3 Interview materials
Both client and carer interviews were semi-structured, and made use of a prepared
set of questions and prompts to guide the discussion. Client interviews covered the
following topics:

How health information is received

Experience of different accessible information formats

Sources of information (and topics received)

Experiences of and views on easy-read samples

Experiences of receiving, making, and going to appointments

Involvement in producing and evaluating easy-read materials

Experiences of seeking health information
Topics covered within the Carer interviews were as follows:

Overall role in relation to supporting the individual

Experience of different accessible information formats

Experiences of and views on easy-read samples

Experiences of supporting the individual to attend appointments

Extent of the supported individual’s experience of easy-read materials
17

Views on the benefits of easy-read materials

Involvement in producing and evaluating easy-read materials

Experiences of seeking health information

Views on services responses to the communications needs of the individual
supported
Examples of written information were used within the interviews to focus discussion,
these being as follows:
Standard appointment letter: this is based around the template produced by the
Patient Management System in use throughout NHS Ayrshire and Arran. The
template uses size 12 Times New Roman font, with single line spacing.
Easy Read appointment letter: The easy-read version of the appointment letter
(used within the Learning Disability Service) is A4 sized, 2 pages long, uses size 16
Arial font with 1.5 line spacing a large font size and incorporates the use of pictures
(to illustrate meaning) and photos (to show the clinician the client would be meeting
and the place they would be attending).
Confidentiality: It’s Your Right (Version 5, produced 2012): The standard version
of the confidentiality resource produced by Health Rights Information Scotland in
2012. It is 8 pages long, has a coloured title and coloured headings throughout the
leaflet, does not have any pictures, and has the main points bulleted.
Keeping Your Health Information Private (Version 5, produced 2012): the easy
read version of the above leaflet. It is 5 pages long, has its title in colour and the rest
of the text is in black on a white background, has simpler words, and contains black
and white pictures positioned to the right of the text.
Learning Disability Service Leaflet: describes the process of involvement with the
Community Learning Disability Teams, and the professions working within them. The
leaflet is an easy-read, A5 sized booklet printed on white paper. It is 8 pages long
and has a coloured title page, the writing on the remaining pages is black. It
contains coloured drawing/clipart type pictures, which are positioned to the left of
the text. It also has shorter sentences and simpler words.
‘Beating the Blues’ booklet: the booklet is about what a person can do when they
are feeling down. It is an A4 glossy booklet printed on card and is 7 pages long. It
18
has a colourful background and uses large photos to tell the story, and speech
bubbles to explain what is being said.
Clients and Carers were asked which version of the appointment letter and
confidentiality leaflet they preferred, and what they liked and disliked about all
documents. Opportunity was also taken to ask 4 carers about the standard and easy
read participant information sheets for the project.
2.4.4 Interview locations and duration
Interviews were conducted in a convenient place for the interviewee. Fourteen
interviews were conducted in the participant’s own home, 5 in their workplace and 1
in a meeting room within their local community hospital. The interviews were
digitally voice-recorded. The overall mean duration for each participant group is
shown in Table 2.2.
Participant
Range
Mean
from
to
Client
14m
54m, 54s
31m, 30s
Unpaid Carer
28m, 4s
94m, 24s
52m, 43s
Paid Carer
26m, 8s
78m, 17s
50m, 24s
Table 2.2. Mean Interview Durations
2.5 Interview and focus group transcription and coding
The interviews and focus groups were transcribed verbatim and thematically
analysed in a manner informed by the Framework Approach. This approach supports
the examination of a priori questions such as preferences and use of accessible
information, as well as the identification of emergent themes (Gale et al., 2013).
19
3 QUESTIONNAIRE RESULTS
In total there were 102 questionnaire respondents, with 34 in Primary Care and 68 in
specialist Mental Health services. Primary care respondents were drawn from Health
Visiting, District Nursing, and Practice Nurse teams; those from mental health
services were drawn from the Learning Disability (LD), Adult Community Mental
Health, and Child and Adolescent Mental Health services. There were 4 respondents
with null returns, two LD nurses, 1 nursing assistant and 1 Health Visitor, which have
been omitted. For the purposes of the overall analysis, respondents have been
grouped into 3 sub-groups:

Learning Disability (LD, n=41: comprising qualified Nurses [26] and Nursing
Assistants [15])

Other Mental Health (OMH, n=27: comprising of 22 staff from Adult Mental
Health, and 8 from Child and Adolescent Mental Health)

Primary Care (PC, n=34: comprising 6 Practice Nurses; 17 members of Health
Visiting Teams; and 11 members of District Nursing Teams)
The above categorisations primarily reflect 2 issues:

It was anticipated that the wide variety of clients seen within Primary Care may
consequently limit the exposure of staff there to accessible resources, which
remain primarily viewed as a resource for people with learning disabilities. In
addition, initial review of the questionnaire returns indicated that the
responses of primary care professionals did differ fairly consistently from
those of the other respondent groups.

Based on experience of and accustomed practice within the Learning Disability
Service, it was anticipated that LDS respondents would be better informed
regarding and more frequently using accessible information than those from
the other services.
The OMH label reflects the fact that at the time of the project’s commencement,
Learning Disability, Child and Adolescent, and Adult Mental Health Services were all
part of the Mental Health Directorate within NHS Ayrshire and Arran. For the
purposes of initial analysis, the LD and OMH sub-groups have on occasion been
combined to allow for a broader comparison between Mental Health Directorate
Services and Primary Care, before a further analysis is undertaken looking at the LD
and OMH sub-groups separately.
20
An additional level of analysis is utilised in some instances, to explore the difference
in responses between qualified and unqualified LD Nursing staff. This reflects the
possibility that training and differential exposure to aspects of service planning and
delivery may impact on staff’s understanding of issues relevant to the project.
The first questionnaire item asked respondents to specify their profession: as this
information is reflected in the categorisations described above, the reporting of
results will commence with Question 2. Results are presented grouped by their
section heading within the questionnaire.
3.1 Section A. Types of accessible information
Q2. Accessible Information comes in many different formats, can you advise
how frequently you have used each of the following in the past 6 months?
Respondents could answer ‘A lot’, ‘Sometimes’, or ‘Not at all’. A numerical measure
of frequency of use for the formats specified was developed by assigning a score to
each of the possible responses, as follows: ‘a lot’ as 2; ‘sometimes’ as 1; ‘not all’ as 0.
Figure 3.1, below illustrates the results of this scoring. Easy-read Information and
Internet Based Resources were by far the most used formats, to a statistically
significant extent (chi-square (4)=198.3, p < 0.0001).
160
140
135
128
120
100
80
60
57
40
21
20
9
0
Easy-read Internet based DVD / Video
information
resources
Audio
Drama
production
Figure 3.1 Frequecy of staff’s use of AI formats in last 6 months.
Primary care was generally comparable to the combined LD and OMH sub-groups in
terms of its frequency of use of the various formats, with the exception of Audio and
21
Drama, both of which were used significantly less frequently by Primary Care (MannWhitney U: audio z=2.22, p=0.026; drama z=2.21, p=0.027). In terms of comparison
between the LD and OMH sub-groups, the LD group used easy-read (Chi-square
(2)=7.10, p=0.029) and DVD (Chi-square (2)=13.23, p=0.001) formats more often
while the OMH group used audio (Chi-square (2)=7.99, p=0.018) and internet (Chisquare (2)=6.72, p=0.035) formats more often, both results being statistically
significant.
Q3. If you have used other formats not listed above, please specify here:
Only 3 comments were provided here. Each specified a different format, these being:
equipment, models; group work; use of photographs, pictures etc.
Q4 sought to explore respondents understanding of the nature of Accessible
Information in general, by asking them to indicate which of 6 statements they
felt described it.
Responses across the Primary Care and the combined LD and OMH sub-groups are
shown in Table 3.1.
Q4. Which of these statements do you feel apply to
accessible information:
LD & OMH Primary
combined care
Total
n
%
n
n
%
%
1. Accessible information is a resource to help make
information easier to understand.
No
7
10% 6
18% 13
13%
Yes
61
90% 28
82% 89
87%
2. Accessible information is about how the resource is
used, not just about the resource itself.
No
24
35% 16
47% 40
39%
Yes
44
65% 18
53% 62
61%
3. Accessible information should not need to be explained Yes
to the service-user.
No
11
16% 9
26% 20
20%
57
84% 25
74% 82
80%
No
23
34% 19
56% 42
41%
Yes
45
66% 15
44% 60
59%
5. Accessible information is less effective than information Yes
designed for the general public.
No
2
3%
9%
5%
66
97% 31
91% 97
95%
6. Accessible information should be tested by its intended No
readers for its effectiveness.
Yes
20
29% 10
29% 30
29%
48
71% 24
71% 72
71%
4. The intended audience of the accessible information
should be involved in the production of it*.
3
5
Table 3.1 Statements applicable to accessible information (* denotes a significant difference)
22
There was no significant difference by group for any statement except for No 4
where the combined LD and OMH sub-groups were significantly more likely to agree
with the involvement of the intended audience (Chi-square (1)=4.55, p=0.033).
However, differences were evident when the LD and OMH sub-groups were
compared. Significantly more respondents from the LD subgroup disagreed with
statement 3 (Accessible information should not need to the explained to the serviceuser: p=0.005, fisher’s exact test) while more of the OMH subgroup agreed with
statements 4 (The intended audience of the accessible information should be
involved in the production of it) and 6 (Accessible information should be tested by its
intended readers for its effectiveness: (chi-square (1) = 4.69 for statement 4, 4.60 for
statement 5; p=0.03 for both). Further analysis indicated that for statements 4 and 6,
it was the responses of Nursing Assistants that were creating the difference: qualified
LD Nurses responded in a similar manner to respondents from the OMH sub-group
(Fishers exact test, p=0.01 for both statements).
In order to derive some measure of respondents overall understanding of accessible
information, statements 1,2,4 & 6 were scored 1 for yes and 0 for No, while the
scoring for the other two statements was reversed. The total score for each
respondent was calculated, a higher score indicating a better understanding. The
mental health group scored significantly higher than the primary care group (t(100) =
2.11, p = 0.038; mean difference 0.57, 95% CI 0.03,1.11). There was no significant
difference between the OMH and LD subgroups. However when the LD group was
analysed at a finer level, significant differences became apparent: qualified LD nurse
and OMH subgroups showed significantly more understanding of accessible
information, scoring higher than the LD assistant and Primary care groups (Kruskal
Wallis, Chi-square (3) = 13.73, p = 0.003).
3.2 Section B. Easy-read information
Q5. What do you understand by the term ‘easy-read’?
Responses to this open question across the 3 main sub-groups highlighted similar
themes, with slight variations in the extent to which some were voiced. Learning
Disability staff (37 responses) most frequently defined easy-read information as
being easy to understand; specific aspects of the simplicity of the language involved
were also highlighted, as was the use of images within materials. Other specific
23
formatting elements included the use of large text and avoiding the use of jargon.
Some respondents defined easy-read information in terms of the audience it was
intended for e.g. ‘"Easy-read" information is accessible information for people with
learning disabilities’; ‘Accessible information is all about making information easier to
understand for people with learning disabilities’. However, a minority of respondents
also commented on the potential relevance of easy-read information for a wider
range of people e.g. ‘Information that is readily understood in a format that is
appropriate to a range of people’. Other facets highlighted by respondents included
brevity, and a focus on delivering key messages.
Similar themes were evident across the OMH sub-group (23 responses), however the
absence of jargon was a more notable theme than within Learning Disability Service
respondents. In terms of formatting, large text was again highlighted as a feature,
and to a lesser extent, a focus on key information, short statements and the absence
of abbreviations. Some respondents also described it in terms of the intended
audience e.g. ‘Information which has been adapted for a particular audience to allow
access which in its normal presentation would not be available to them.’; as with the
Learning Disability Service, there was also some recognition of the relevance of the
format for a wider variety of individuals e.g. ‘Jargon free and understandable to
general public’. Mental Health respondents differed from those in the Learning
Disability Service, in that the use of images was highlighted less frequently; and also,
in that the role of easy-read information as a support to informed decision making
by service users was highlighted (all-be-it infrequently).
For Primary Care staff (25 responses), the information being easy to understand was
a key theme, as was the absence of jargon. Some appeared to recognise the
distinction between reading and understanding e.g. ‘Information in a format easy to
read and understand’. A focus on the provision of key information was also
highlighted, and the use of pictures was suggested as a feature to a greater extent
than across the OMH sub-group. Some respondents suggested that the format was
relevant for a broad population e.g. ‘A resource that is understood in basic terms by all
– standardised’. Good presentation (including the use of colour), brevity, and the use
of simple language were also noted by some as features.
Q6. Which of these do you consider to be aspects of easy-read information?
For this item, a list of 12 aspects of information was presented and respondents were
asked to identify whether each item was as a feature of easy-read information, or
24
not. Of the 12 items, 3 were not generally recognised by any guidelines as being
aspects of easy-read information and a fourth is only advocated by some:

Use of underlining to highlight key points

Use of clinical terminology

Use of all caps (e.g. IMPORTANT) to highlight key points

Use of large pages
All sub-groups demonstrated a high degree of consistency in their responses to this
item. There were no differences between the LD and OMH sub-groups for any
aspect except for the use of symbols where 23/41 (56%) of the LD subgroup selected
it compared with only 4/27 (15%) of the MH subgroup (Chi square (1)=11.59,
p=0.001). However, differences were found between the combined LD and OMH
sub-groups and the primary care group, with the LD/OMH being more likely to
identify font size (Chi square (1)=5.57, p=0.018), symbols (Chi-square (1)=6.58,
p=0.010) and short sentences (Chi square (1)=4.54, p=0.033) as key elements of
easy-read information.
In order to provide some measure of overall knowledge of easy-read information, all
aspects were scored 1 for yes and 0 for No, except for the aspects 3,6 & 12
(underlining; clinical terminology; and use of all caps) where the scoring was
reversed. Aspect 4, the use of large pages, was omitted from the scoring as it is not
universally acknowledged as a key aspect of easy read materials. The total score for
each respondent was calculated, a higher score indicating a better understanding of
key aspects of easy read. Scores could range from 0 to 11. The combined LD and
OMH sub-groups scored significantly higher than the primary care group (t(100) =
2.84, p = 0.005; mean difference 1.35, 95% CI 0.41,2.30). There was no significant
difference between the MH and LD sub-groups, however further analysis again
demonstrated that qualified Nurses within the LD sub-group scored similarly to the
OMH sub-group, while the scores of Nursing Assistants were similar to those of
Primary Care respondents (Kruskal Wallis, Chi square (3)=11.12, p = 0.011).
Having been asked to pick out those features from the list provided which were
aspects of easy-read information, respondents were then asked to identify, and
rank, the 3 which they considered to be most important (Q7). For each
respondent, the aspect selected as first choice was scored as 3, second choice scored
2 and third choice scored 1, those not selected were scored zero. The total score for
each aspect is shown in Figure 3.2 (next page). The four most important aspects are
use of short sentences; large font size; photos; and illustrations.
25
140
120
118
98
100
83
80
71
60
43
40
40
33
32
15
20
12
6
2
0
Use of short Large font
sentences size (e.g. size
14 and
above)
Use of
photos
Use of
Use of a
Use of
Use of all
Use of
Large pages
Use of
illustrations plain font underlining caps (e.g. symbols (e.g. (e.g. A4 or
numbers
(colour or (e.g. Arial as to highlight IMPORTANT) Boardmaker,
larger) (e.g. 1 and 2)
black and opposed to key points
Bliss)
instead of
white)
Times New
the words
Roman)
(one and
two)
Minimising
Use of
the use of
clinical
punctuation terminology
other than
full stops
Figure 3.2. Total score for each aspect, reflecting most important of 3 choices being scored as 3, the least important as 1, and those
not selected as 0.
26
In general, there were no significant differences in the ranking of items, with the
exception of symbol use: the combined LD and OMH subgroups ranked this aspect
of easy read significantly more highly than the Primary Care group (z=3.05, p=0.002).
Further analysis indicates that this difference was attributable to the LD sub-group
rating the use of symbols more highly than either the OMH group (means LD = 0.70,
MH 0.04; z = 3.02, p = 0.003)3.
Q8. Are there any other aspects of easy-read that you feel are important but are
not mentioned in the list above?
A small number of additional aspects were mentioned by respondents, most notably
the use of coloured paper (this being linked to issues for service users with dyslexia).
Q9 asked respondents to indicate which populations from a list provided they
considered easy-read resources to be appropriate for, the options being:

Older people

General population

Children

People with mental health problems

People with addiction issues

People with learning disabilities

None of the above
Staff groups varied in their responses, with significantly more staff from the
combined LD and OMH sub-groups considering easy-read to be suitable for older
people (chi-square (1) = 4.07, p=0.04), children (chi-square (1) = 7.26, p=0.007),
individuals with mental health (chi-square (1) = 6.56, p=0.01), and addiction
problems (chi-square (1) = 7.89, p=0.005) as well as those with learning disabilities
(chi-square (1) = 8.70, p=0.003). In general, staff from the combined mental health
group rated easy read resources as being relevant for a wider range of populations,
than those from the primary care group (t -test, p=0.004, mean diff 1.42 95% CI
0.47,2.36).
No differences were evident in the extent to which Primary care and the combined
LD and OMH sub-groups viewed easy-read information as being relevant for the
3
It should be noted that response totals in relation to this question indicated that some respondents ranked
more than 3 of the options.
27
general population: overall, 55% of respondents thought that it was. However, when
the LD and OMH sub-groups were compared, significantly more of the OMH
subgroup (82%) considered easy-read to be relevant for the general population than
either the LD (44%) or PC (47%) groups (chi-square (2) = 10.55, p = 0.005).
Otherwise, there were no differences between the LD and OMH sub- groups. Further
analysis at the level of LD Nurses and Nursing Assistants generally supported this
picture, with the exception of people with addiction issues: Nursing Assistants were
significant less likely to see easy-read as relevant for them, than either qualified LD
Nurses, or staff in the OMH sub-group (chi-square (1) = 6.6, p=0.01).
For the 3 main sub-groups (LD, OMH, and PC), knowledge of accessible information
(as reflected in correct responses to Q. 6) was significantly correlated with the
number of populations for whom respondents identified easy-read as being relevant
(spearman’s rho=0.5, p<0.01). The mean knowledge score of those who selected all
6 of the population groups listed was significantly higher than the mean for those
who selected none of them (7.34 vs. 3.32, t-test, p<0.01, mean diff [95% CI] 4.02
[3.23, 4.83]). This finding was replicated across all 3 sub-groups (see table 3.2).
Total no of categories selected
Mental Health
(LD and OMH)
Primary care
Total
Mean
Std. Deviation N
0
3.56
1.67
9
6
7.48
1.95
33
Total
6.64
2.49
42
0
3.10
0.32
10
6
6.75
1.67
8
Total
4.72
2.16
18
0
3.32
1.16
19
6
7.34
1.91
41
Total
6.07
2.54
60
Table 3.2 Mean Easy-Read information knowledge scores of staff selecting 0 or 6 population
groups, within main staff categories
Respondents to Question 9 also had the opportunity to indicate other groups for
whom easy read materials would be relevant. Nine comments were made, of which 5
made some reference to it being relevant for everyone (e.g. ‘important not to
stereotype Believe all populations should have easy read, unambiguous, information
written in plain English’). These comments were recoded as referring to the general
28
population, and have been incorporated into the analysis above. Of the remaining 4
comments, 3 mentioned people for whom English was not their first language; and 1
mentioned people with health literacy issues. One of the 4 comments also
mentioned a range of other relevant groups:
‘Ethnic groups where English is not the first language. People with head injury. People
who have had cerebral events. People with specific communication deficits’.
3.3 Section C. The use of easy-read information
Q10. To what extent have you made use of easy-read within your clinical
practice in the last 6months?
Participants could respond ‘A lot’, ‘Sometimes’, or ‘Not at all’. Respondents from the
combined LD and OMH group had used easy read materials more frequently than
Primary care staff (Mann Whitney U, z=2.46, p=0.014). Between the LD and OMH
services, LD respondents were significantly more likely to have used it, (Mann
Whitney U, z=2.55 p=0.011; see Table 3.1.3). The OMH subgroup used easy read to a
similar extent as the Primary Care group but the LD subgroup used it more often
with 36% using easy-read a lot.
Sub-group
Q10. To what extent have you made use
Other
of easy-read within your clinical practice Learning
Mental
Primary
in the last 6months?
Health
care
Total
%
N %
N %
2 8% 17 20%
Disability
N
%
N
A lot
13
36% 2
9%
Sometimes
21
58% 17
74% 15 63% 53 64%
Not at all
2
6%
17% 7 29% 13 16%
4
Table 3.3. The extent staff had made use of Easy-read in the last 6 months.
Q11 asked respondents to identify how they had made use of easy-read
materials, using the following statements:

I provide easy-read materials to service users.
29

I go through easy read materials with the service user.

Once they have read the material, I discuss it with the service user.

I involve carers of service users in discussing easy-read material.
Overall, respondents were more likely to have provided easy-read materials or gone
through them, than to have involved carers or discussed the material afterwards with
the service users (see Figure 3.3).
60
52
50
47
37
40
34
30
20
10
0
I go through easy I provide easy-read I Involve the carers I discuss it with the
read materials
materials
of service users service user once
read
Figure 3.3 How staff made use of easy-read materials
Respondents in the LD and OMH sub-groups were significantly more likely to
respond yes in relation to each of the items listed than those from the PC sub-group.
P values for this are shown below alongside each of the items:

I provide easy-read materials to service users (Chi-square (1) = 5.70, p=0.017)

I go through easy-read materials with the service user (Chi-square (1) = 7.08,
p=0.008)

Once they have read the material, I discuss it with the service user (Chi-square
(1) = 5.65, p=0.017)

I involve carers of service users in discussing easy-read material (Chi-square
(1) = 5.43, p=0.02)
Further analysis identified that within the LD subgroup, qualified staff (and staff in
the OMH sub-group) were significantly more likely to have provided (Chi-square (2)
= 6.91, p=0.031) and gone through (Chi-square (2) = 7.38, p=0.025) easy-read
materials than Nursing Assistants or Primary Care staff. In addition, it was found that
across the 3 sub-groups, those who responded yes to a listed item had a significantly
30
higher mean knowledge score regarding the aspects of easy-read information, as
indicated by correct responses to Q6 (t-test, p<0.01 for all 4 items; means and
standard deviations, and test results are provided in the Table 3.4).
Q11. Which of the following describe
how you have made use of easy read
N Mean
information?
Std.
Deviation
I provide easy-read materials
Yes 47 7.74
1.66
to service users.
No 55 5.42
2.32
I go through easy read materials
Yes 52 7.54
1.87
with the service user.
No 50 5.40
2.30
Once they have read the material,
Yes 34 7.59
1.73
I discuss it with the service user.
No 68 5.94
2.43
I involve carers of service users in
Yes 37 7.73
1.54
discussing easy-read material.
No 65 5.78
2.44
Mean difference and
95% Confidence
Interval
2.32 [1.54,3.11]
2.14 [1.31,2.97]
1.64 [0.82,2.48]
1.95 [1.16,2.73]
Table 3.4. Knowledge scores related to use of easy-read information, for all
respondents
Q12. Have there been any circumstances where you have found the use of easyread information to have been particularly helpful for a service user?
Primary care staff were significantly less likely to respond yes to this item than the
combined LD and OMH sub-groups (Chi-square (1) = 13.60, p=0.001). However,
when the LD sub-group was analysed further, Nursing Assistants were found to be
responding in a similar manner to PC respondents, while qualified Nurses more
closely mirrored those in the OMH group (fishers exact test p=0.006).
Respondents within each of the 3 groups were able to provide positive examples of
the use of easy-read information in response to an open ended question. Learning
Disability Staff (21 comments) frequently highlighted the use of easy-read to assist
the explanation of clinical procedures, either in general or in relation to specific ones
(most frequently cervical screening). Easy read information in relation to specific
conditions such as cancer; depression; parenting; and epilepsy was highlighted, as
well as the use of easy-read information on health promotion topics such as healthy
31
eating and exercise. One respondent reflected an alternative benefit for easy-read
materials: ‘I also encourage staff to look at easy-read versions of large reports.’
Respondents in the OMH group (12 comments) commented on a wide variety of
positive use scenarios, including the provision of information summarising a session;
supporting informed choice, and self management, as well as making general
observations in relation to the use of easy-read materials (‘It is clear concise and a bit
easier to focus on when distressed.’; ‘reported a better understanding of their illness.
Carers also able to understand symptoms’; ‘Self help material that they are able to
practice on their own’).
Primary care staff (8 comments) echoed the responses of those in the Mental Health
group to an extent, in suggesting that it could provide a good means of reinforcing
the topics covered within a consultation (e.g. ‘I use the PIL via patient.co.uk and
usually print of a leaflet to give the patient away at the end of the consultation. This
backs up the info I have given re. diagnosis and management advice’). A number of
respondents also highlighted the successful use of easy-read resources with parents
who either had a learning disability, or were identified as being unable to read (e.g.
‘Young mum with learning difficulties regarding weaning of her child - in picture
format & very large word captions’). Others commented on other client groups with
which they had (presumably) been used successfully, these being non-English
speakers, and older people.
Q13. Are there any circumstances where you feel the use of easy-read
information would be inappropriate?
Generally, a minority of respondents within each sub-group responded ‘Yes’ to this
item (15% overall), there being no significant difference between the 3 main subgroups. However a significant difference was found when the LD sub-group was
analysed further, with Nursing Assistants being significantly more likely than LD
Nurses to answer ‘Yes’ to this item (p<0.05, fishers exact test).
Analysis of open responses to this question indicated that across the 3 main subgroups, there was a recognition that an individual’s cognitive and language abilities
may restrict the relevance of easy-read information. Learning Disability staff and
OMH staff also commented on the possibility that easy-read information could be
perceived as patronising by the service user (e.g. ‘Depending on the ability of the
32
client in terms of reading etc, they can feel offended by the more simple information’);
one respondent in the LD sub-group also commented that it could be construed as
patronising by the staff supporting the service user: ‘Possibly could be patronising if
passed to staff caring for someone with negligible comprehension. They (staff) should
be provided with usual information as they know best how to explain things to their
clients’. The knowledge of the carer with regard to successful communication was
also highlighted by another respondent.
Q14. Are there any topics which you feel easy-read information should be
available on, but isn’t currently?
Overall, only 13 respondents answered ‘Yes’ to this item, however comments were
provided by 14. Topics specified were as shown in Table 3.5:
Learning Disability (n=8)
Mental Health (n=3)
Primary Care (n=3)
 Cholesterol (x2)
 Mental Health,
 Immunisation (x2)
 Impaired glucose levels
(x2)
 Online safety
 Diabetes
including self-help
(x3)
 Bullying
 Parenting, including
weaning (x2)
 General Health
conditions
 Sleep Apnoea
 Epilepsy
 The impact of having a
learning disability
 Should be available on
all topics
Table 3.5. Information Topics Staff felt should be in easy-read but is not currently.
Across Q15 and Q16, respondents were asked to provide one example of a piece of
information (e.g. a health information leaflet) that they would consider a good
example of easy-read information, and one that they would consider a bad example.
Q15. Good example:
Learning Disability Staff (23 comments) frequently highlighted the FAIR resources as
being positive examples, with some also mentioning those produced by Change.
33
Some resources produced by the service itself were also identified as good examples,
these being the appointment letters it uses, and the information leaflet provided by
the Community Learning Disability Teams. One respondent mentioned leaflets
produced in NHS Lothian in their comment. Some of those responding specified
various health promotion topics, however it was unclear from their responses
whether these were topics they had used resources to discuss, or whether they were
topics on which they felt information should be more available.
Nine OMH staff provided examples here, specific examples being provided by 2
(Steps for Stress information booklet and DVD; and a Self Harm booklet in versions
for children, and for parents). Others referred to broad categories of information as
opposed to specific examples (Health information leaflets; online resources; materials
produced by NICE). As with the Learning Disability Service, some respondents
specified their team leaflet as an example.
Ten Primary Care staff provided comments, of whom 2 made reference to the
‘Play@home’ resources; 2 made reference to a hygiene leaflet, however it was
unclear whether the same leaflet was being referred to. Other examples provided
were ‘Tummy troubles’; ‘Getting Your Child Ready for the 27-month Assessment’; and
‘Fun First Foods’. One respondent highlighted ‘some but not all’ foreign language
materials as good examples, while another positively outlined the procedure
followed for recording the provision of information to patients:
‘Within our surgery we use the DSX programme linked to vision. The leaflets are mainly
via patient.co.uk. We print them off within the consultation and this is then recorded
directly into patients notes. I like this system as it shows that the info given in the
consultation has been backed up with written info.’
Q16. Bad example:
13 Learning Disability staff provided comments in response to this question, with the
majority identifying the ‘Keeping Your Health Information Private’ leaflet as a bad
example because of the amount of text within the document, and the images used
lacking a meaningful relation to the text. Another respondent mentioned ‘hospital
procedures’, but did not specify which particular materials were being referenced.
34
Those OMH staff who answered this question (9) mainly commented that they did
not know of any bad examples. The examples which were specified were, ‘Combat
stress leaflets’, ‘Long questionnaires asking about how service users view treatment and
care e.g. My View.’, and ‘SIGN information pertaining to some psychiatric disorders and
their interventions thereof.’
Nine Primary Care staff made comments in relation to this item. Specified resources
were:

‘27 month and 30 month assessments used in Health visiting’

‘talking about...postnatal depression’
Other respondents also noted issues with the patient information leaflets provided
by drug companies. 3 respondents all made general observations regarding a lack of
resources in relation to food choice and cooking at home for children, i.e., weaning,
over-weight children, or school age children; for 2 of these respondents, the issue
was linked to the information needs of parents with a ‘disability’. A further
observation made was in relation to the use of materials in a language other than
English:
‘Ones written in punjabi but in English lettering rather than Punjabi script. There is also
an issue with foreign language ones in that we don’t know exactly what they say, eg
the Edinburgh Postnatal depression score. It comes in different languages, but there is
no English on it.’
3.4 Section D. The production of easy-read information
Q17. Have you ever been involved in the production of easy-read information?
Very few respondents had been involved in the production of easy-read, only 9%
overall. Respondents were asked to identify who the resource was targeted at. Of
the 9 respondents who had been involved in producing easy-read, 6 of them were
aimed at a particular group of people, one to an individual and one to the general
public. One respondent indicated that it had been a ‘leaflet used for all agencies’. An
overall breakdown of the resources developed, and the people involved, is provided
in the Table 3.6. (next page).
35
Respondent Type of
Who was it
category
for?
OMH
information
Who was involved in the production?
A
Produced along with a Support Worker,
Carers leaflet for
particular
used evidence based materials and
eating disorders
group of
changes into own works although
people
referenced where the material came from.
A
LD
Blank
particular
group of
Information given via verbal or on paper
people
Step by Step for
LD
health fitness and
fun
LD
CLDT Team
leaflet
A
particular
Health promotion, Community Learning
group of
Disability Team, Leisure Development
people
Use for the
general
Various health professionals were involved
public
An
LD
social stories
individual
Client, family, support staff, speech and
service
language therapist
user
information in
LD
relation to
cervical screening
A
particular
group of
people
Review of existing materials, focus groups
with key partners, service users, peer
group, carers.
A
LD
Health
particular
information
group of
Blank
people
was initially
PC
involved in HV
service leaflet
A
particular
My position was taken over by a team
group of
leader when they came into post
people
Table 3.6 Staff’s experience of producing accessible information.
36
Q21. If you were ever planning to develop easy-read information, which of the
following resources or support would you seek assistance from, if any?
Respondents could select from a list of 7 possible sources of support:

Internet based resources

Speech and Language Therapy

Health Promotion Team

Service Users

Graphic Designers (Communications Team)

Learning Disability Service

Other
Overall, responses indicated that similar usage would be made of all groups except
for graphic designers who were selected less often (although not significantly so: see
Figure 3.4, below). In terms of the sub-groups, respondents from the combined LD
and OMH sub-groups were more likely than the primary care subgroup to seek
support from service users (Chi-square (1) = 5.81, p=0.016), Speech and Language
Therapy (Chi-square (1) = 8.65, p=0.003), or the LDS (Chi-square (1) = 5.68, p=0.017).
The LD sub-group was more likely than the OMH group to make use of Speech and
Language Therapy and the LDS (Chi-square (1) = 7.15, p=0.007 for both).
70
60
59
53
53
51
50
47
36
40
30
20
10
0
Service users
Learning
Disability
Service
Health
Speech and
Promotion Language
Team
Therapy
Internet
based
resources
Graphic
Designers
Figure 3.4 Who staff would seek assistance from when producing easy-read
information.
37
Q22. Have you ever seen any guidance regarding the development of easy–read
information?
Overall, a minority of respondents had seen guidance on this topic (6%): of these, the
majority were from the combined mental health group.
Q23. Have you participated in any learning disability awareness training?
Overall 39% of respondents had participated in learning disability awareness training.
Ignoring those who responded ‘don’t know’ or ‘not applicable’, there was a
significant difference between groups (chi-square (1) = 10.55, p = 0.001), with
significantly more respondents from the combined mental health group having
attended some training.
Further analysis indicated significant differences between the sub-groups of the
combined mental health group, with 28 of the 34 who had attended training being in
the LD group: 68% of the LD sub-group had attended training compared with only
22% of the OMH sub-group (chi-square (1) = 14.84, p = 0.0001). Of the 40
respondents from all groups who indicated that they had participated in Learning
Disability awareness training, 18 provided additional comments. Most made
reference to the receipt of in-house training, frequently specifying that it was
delivered by the Learning Disability Service itself, via the Acute/Primary Care Liaison
Nurses and others. Given the respondent pool, it is unsurprising that 3 comments
(from Learning Disability Nurses) described their involvement in the delivery of
awareness training. 3 respondents described receiving such training as part of a
degree course. 2 primary care respondents made reference to involvement in
training days some time ago, while another described their ongoing involvement
with their local Learning Disability Acute/Primary Care Liaison Nurse.
Q24. If you have any general comments to make regarding easy-read, please
use the space below:
A limited number of respondents in each sub-group provided comments here.
Respondents commented on the potential benefits for service users, describing such
advantages as increased involvement in their care, however some also described
benefits for staff themselves, either in terms of supporting them to communicate
effectively with clients, or assisting them in getting to grips with complex legislation.
38
Two Learning Disability respondents commented on the role of others in supporting
an individual to understand easy-read materials, one of whom also remarked on the
challenge of developing resources which would meet the needs of all:
“I feel that trying to get information about every subject to suit all cognitive abilities is
very difficult. Usually we would use a variety of resources regarding health information
and assess understanding during education. Often I would leave paid carers to spend
more time with the client going over the information given.”
The lack of profile for easy-read materials and approaches, and the possible
dividends from their promotion, were commented on by one Mental Health
respondent as follows:
“There has been little in the way of publicity or awareness with regards to "Easy-read.”
It would be of value to assist service users and carers involvement in their treatment
and care. It would assist the service users in making informed choices. It would make
the service more person centred. At the end of the day communication is the key.”
39
4 CLIENT INTERVIEWS: RESULTS
Ten Clients were interviewed in their own homes (9 clients were supported by their
clinician, 3 of whom were also supported by a family member, and 1 client was
supported only by their paid carer). The following 4 main themes were identified
from the analysis:
1. Experiences and preferences of health information: The importance of
meeting individual needs
2. Involvement in health care of health and wellbeing, recognition of support
received
3. Perceptions of written health information
4. Involvement in the production and evaluation of health information
4.1 Theme 1: Experiences and preferences of health information
Clients were asked about their experiences and preferences of different information
formats e.g. written, audio and video. It is worth noting that, although clients
sometimes initially responded ‘no’ to having experienced a particular format, during
the course of the interview they provided evidence of having actually received
information in that format. In such cases, these were included in the overall results,
which have been summarised in Table 4.1 (next page). It should also be noted that
whilst easy-read and verbal formats were not specifically listed within the options
presented, they have been included in this table because they were also reported by
Clients during the course of the interview.
As shown in Table 4.1, the format reported the least was audio. The information
format that all clients reported as a medium for conveying health information was
verbal communication. The next most frequently reported format was easy-read,
generally appointment letters. Interestingly one client had received information on
bowel screening in multiple formats i.e., easy-read, DVD and Presentation (as advised
by the Clinician) and was therefore able to judge which format was most helpful, this
being the presentation. As a result of seeing it, they were able to make an informed
choice about participation in the screening process:
“it was easier when they showed you the things how it happened.” (Client 6)
40
Health Information
Total
Formats
Yes No
Verbal
10
0
10
Easy-read
7
3
10
Total Information Topic
Leaflet about the LDS
Appointment Letter – LDS
Appointment Letter – LDS
Leaflet about the LDS
Bowel Screening
Appointment Letter - Respite
Centre
Booklet – ‘Looking after me’
Healthy Foods
DVD/Video
4
6
10
Bowel Screening
First Aid Video
Mental Health
Breast Screening
Groupwork/
4
6
10
Healthy Eating
3
7
10
Bowel Screening
Discussion
Play/Drama
Unknown
Presentation
3
6
9
Stay Happy and Healthy
Bowel Screening
Healthy Eating
Audio
1
9
10
Relaxation
Internet
2
9
10
Unknown
Table 4.1. Health information formats experienced by Clients
One client questioned the value of providing written information alone and
highlighted the importance of information being explained to both them and their
carer:
"Nae point in writing it down cos I would nae understand it anyway!
They’d need to
explain it but. They’d need to explain it to [spouse]. Cos I would nae be able to
understand it!" (Client 9)
41
Another Client’s description of their attendance at a group work session appeared to
indicate that it had not engaged them successfully:
"….. what they discuss I don’t bother [in response to being asked whether they had
received any health info in group work]. I just let them dae what they want. They
discuss it to me but I don’t bother wae anybody." (Client 2)
The responses of interviewees clearly indicate the importance of providing
information in a format that works for the individual. In addition, as well as
information being provided in an appropriate format, the content also needs to be
targeted at the appropriate level of understanding and ability to support
engagement. One Client described their response to a resource they considered
childish:
"I think that *Clinician* was doing a book with me at one time. (...) ‘ Looking after me
[easy-read resource]’, that's it! I felt it was awful childish (...) I just did nae think it was
for me. (...) it had stickers in it and you'd stick them in different places." (Client 9)
In addition to examining experiences of health information provided, the interviews
also explored clients’ health information seeking behaviour. Sources identified for
health information included a support worker, family member, GP and Community
Learning Disability Nurse (CLDN). When sourcing information about their health, 4
Clients identified their Community Learning Disability Nurse (CLDN) as their first
point of contact for help. One Client explained that the reason they would seek
information from their CLDN was due to their CLDN being more knowledgeable:
“Well they probably know what they are talking about. Cos I would nae know what I
was talking about ((laughs)). I have nae a clue!” (Client 6)
The internet is often used as a source of health-related information among the
general population. However, only 3 Clients reported that they had access to the
internet, and only 2 of those reported using it as a source of information. One client
reported using the internet to look up where their health centre was on a map; for
the second Client, it was not possible to ascertain what health information they had
accessed on the internet.
42
4.2 Theme 2: Involvement in Health Care
Six clients reported being actively involved in their own health care. When discussing
experiences of health information provision, clients gave examples that
demonstrated their knowledge of health care advice that they had received. Areas
covered included keeping healthy, understanding the reasons behind treatment,
illness management and the importance of taking medication. One client
commented on the benefits of the treatment received, such as hydrotherapy to help
their joints, while another reflected on advice given and their efforts to manage their
diet and eating habits to deal with health issues. Some clients demonstrated
understanding of their health and commented on the advice they were given, as well
as describing the strategies they used to keep healthy e.g., walking, healthy foods
and knowledge about training and exercise:
“What you should eat and what you shou- but certain things that you shouldn’t eat
when you’re training.” (Client 6)
Clients also demonstrated understanding of the restrictions that their health
imposed. For example, one client discussed the advice they had received from their
doctor about epilepsy:
“I’m no allowed to use cooker and that... because I’ve got epilepsy. I take eh seizure I
could fall into the cooker very easily.” (Client 1)
Clients also demonstrated knowledge and understanding of the medication they
were prescribed and the reasons for its use. For example, one client reflected on the
use of medication to help regulate their moods:
“… that em lithium again. Cos my mood’s been terrible after losing that em, haven’t
they […]? My moods, my moods can go from there [points low] and wheeow, a way up
high.” (Client 6)
As well as the above, some clients spoke about being involved in a range of other
health care activities, including arranging their own health appointments. Clients
reflected on how they managed the appointment process such as adding
appointments to their diary or actively arranging support - with CLDNs frequently
cited as a source of support. For example:
43
”I’m going there on Friday [to dentist]. I made dentist appointment next week. But it
was started last week because there was nobody there to take me I don’t know what’s
happening *CLDN*? [refers to CLDN].” (Client 2).
“I get a letter through. See if I get a letter through from Dr *doctors name*, I phone to
speak to [CLDN] [to arrange support].” (Client 1)
Two clients spoke about how they used the information provided to make health
care decisions: one reflected on opting out of bowel screening:
“But I wouldn’t go through that wee …the wee kind of bit, going to the toilet and
putting the wee kind of, no chance, and sending it away. I still wouldn’t dae it!” (Client
12)
Another client discussed opting out of a weight loss class due to them losing too
much weight:
“Yeah, and now I stopped going [to weight watchers]. In the end up I kinda lost too
much weight.” (Client 10)
Medication was another aspect that some clients were involved in. One client spoke
of a medicine diary and of picking up their medication:
“I carry a diary book with me at all times. I’ll go and pick my [epilepsy medicine], up
every Wednesday. I pick up my [epilepsy medicine]. I’ve got a wee tray. That’s right.
And then my stuff comes in, I’m no allowed to take them.” (Client 1)
Another client also spoke about picking up and administering his own medication,
and also acknowledged understanding of the reasons for his medication:
“I go to the-every six months I go to my ain doctor to-the nurse? Aye cos they send a
letter oot every six months. I was-I get-I took my own tablets and all that. Cos it’s
important to [take his tablets] because see if I don’t take them they’re going to lock me
back up again.” (Client 4)
When discussing their involvement in their healthcare all clients advised that they
received support, sources of which included family members, paid carers, CLDNs and
44
advocates. There were 3 main areas that Clients reported receiving support in
relation to making appointments; dealing with appointment letters; and while
attending appointments.
Seven clients reported receiving support with the health appointment letters they
received, for example:
“I usually get a letter or something like that...I look at it myself then I give it to [family
member], show it to [family member]. Aye. He kinda helps me in a way. To
understand the letter, understand it. Cos sometimes I cannae understand these letters
and that.” (Client 3)
Another client spoke about the size of font preventing them from reading the letter:
“*CLDN* [would help them understand letter]. So see the, see the, sometimes I get
letters through the post. It’s wee letters that you can see. And I said I cannae see that.”
(Client 4)
For one client there was also an element of avoidance as they did not like receiving
letters about their health:
“Usually when a hospital appointment comes in, I go ‘here you go, there you go’ [give it
to spouse]. Cos I just don’t like getting hospital appointments in...And if I don’t
understand them [letters], I get my [spouse] to explain it to me. Yeah, [spouse] helps me
understand things aye.” (Client 9)
Another client spoke about their carer dealing with all aspects of the appointment
letter i.e., the carer reads it, puts the appointment in the diary and arranges support
for the client to attend the appointment:
“It all gets sent oot [how client finds out about appointments]. The-the doctor sends a
letter out to tell me about the meeting. And then the carer takes to dae with it. She
reads it and then she phones up [family member] and tells [family member]. -and then
she phones-then she phones and tells them when the meeting-when the meeting is.
Aye and she [CLDN] usually pits it up in the Calendar. That she’s coming. The
calendar and’ll say there-there’s [CLDN] coming today for you-coming the day for
you.” (Client 5)
45
A few clients also spoke about the support they received from others during the
actual appointment. One client discussed how they were assisted by an advocate
and CLDN nurse:
“[CLDN] comes and gets me and then I hand it over to receptionist [appointment
letter]. Sit down and wait for my advocate. [clinician] sits in with me, so’s my advocate
and myself.” (Client 3)
Another client spoke about being supported by their CLDN and about feeling fearful
of the doctor:
“A community nurse goes with me. Cos I no want to go to the dent-no dentist- no want
to go to the doctor on my own cos-cos I wis all about my mum and dad sometimes. I’m
feart of doctor-doctor, what’s his name? Dr [name]. I don’t like him.” (Client 4)
Another client spoke about being supported by a family member at appointments,
but noted that health staff spoke directly to her, and she would ask if there was
something she could not understand:
“They talk to me [doctors and dentists]. And but my [family member] have to come, to
go with me for that. To help, like if I say if I’m stuck with anything. And answers. And
I try. If it’s easy then I’ll be able to try. And they explain to me and talk to me.” (Client
10)
4.3 Theme 3: Perceptions of NHS written information
In order to explore what aspects of written information clients would prefer, what
they could engage with and what would be meaningful, Clients were shown
examples of NHS written information within the interview. The examples consisted of
2 appointment letters (a standard and easy-read version), 2 leaflets regarding
confidentiality (a standard and easy-read version), a leaflet about the Learning
Disability Service and a booklet entitled ‘Beating the Blues’ about someone feeling
down and how they could help themselves feel better (refer to Appendix 5a to f
respectively). Each client was asked what they thought about each example and
what aspects they liked and did not like.
46
4.3.1 Appointment Letters: Standard and Easy-Read
Half of the clients interviewed advised they preferred the easy-read version of the
appointment letters; 3 preferred the standard version, and 1 client advised both
versions were still too difficult for them to understand. Familiarity of the layout of
the standard letter prompted 2 clients to choose it as a preference because that was
the type of letter they usually received:
“I already get it, that one I think [points to the general appointment letter]. That one
[prefers standard letter]. Because it’s for me and the address” (Client 10), and the other
client, “I think it will be that there [prefers standard letter]. It says ‘the appointment
with [doctors name] is such and such a time’ and then I phone [clinician]. It’s got
[doctors name] name at the top. It says ‘dear [name] you’ve got an appointment with
[doctor] and then I read it.” (Client 1)
The third client that chose the standard version had originally chosen the easy-read
version but then changed their mind:
“This one [points to easy-read but then changes mind]. That yin [then points to the
standard version]. That one [points to standard version]. I like that one [points to
standard version] but I don’t like that one [points to easy-read version]. It’s fine, it’s
awright. I can manage to read it.” (Client 2)
When the client was asked what they liked about the standard appointment letter,
they said it was fine and that they could manage to read it. It should be noted that
this client did not attempt to read the letter and was happy to pass it straight back.
The easy-read appointment letter seemed to elicit more of a response from some
clients than the standard appointment letter, even from one of the clients who
preferred the standard letter:
“Sometimes I don’t go tae-I go tae my drama classes that day on a Thursday [he points
to the example date on the easy-read letter]” (Client 1)
The client recognised the day of the week from seeing it on the letter related it to a
class he attends being on the same day of the week.
47
For some clients there seemed to be one particular aspect about the easy-read
appointment letter that they preferred over the standard letter e.g. the size of the
writing in the easy-read letter was better than the standard letter:
“Nah that’s too wee, I cannae [read it]-the writers too wee [on standard letter]. That
one I can see [points to easy read]” (Client 4), or because it had a photo of the staff
member, “Cos I can understand that one. Well it’s got the picture of the person, of the
person on it [referring to what helps with understanding this letter better].” (Client 3)
One client highlighted a number of aspects they liked about the easy-read
appointment letter, such as, the aesthetics, the photo of the clinician, the clock
displaying the time, and having the day stated:
“I think that maybe that one [prefers easy-read version] because that one’s nicer, with
the pictures. And I like it with the disability-showing the nurses and that and the time
and that. That’s dead easy, I know the time anyway. I would say some of that’s
[standard version] okay and some of this one’s [easy-read version] perfect, a lot more
perfecter. And you know who the learning disability nurse is. That’s helpful telling you
the day, it’s actually a Thursday the twenty-fourth, but if it was just the twenty-fourth
and it never had the Thursday, I would be wondering if was a Monday, Tuesday. I like
the phone [refers to picture of phone and makes a ringing noise]. And that’s quite big
and it’s good actually to see tae.” (Client 6)
There were also aspects about the easy-read appointment letters that clients who
preferred it felt they did not need or want:
“That one! [prefers easy-read version]. Because it’s bigger writing. Em, if you wrote
down the time and the date, I would nae need that! [points to image of the clocks]. I
don’t think I need that, and I don’t think I need that [points to rest of images on page].
Any smaller than that and I would nae be able to read them [referring to size of
words].” (Client 9)
It transpired that this Client had problems with her eyesight and preferred the easyread version for the size of wording and did not feel they needed the pictures.
Similarly, another client who preferred the easy-read version advised of aspects of it
they felt they did not need:
48
“That one [prefers easy-read version]. Nup. Not like it [having photo of person on
letter]. Doesn’t matter [whether there is a photo of the place he would be visiting]. Nup
[whether it is helpful to have the time on the letter]. Need a watch.” (Client 8)
Familiarity seemed to be the main reason the standard appointment letter was
preferred, whereas there were different reasons for the appeal of the easy-read
version, e.g., for one client having the photo of the person helped their
understanding of the letter, for another it was the size of writing due to having
problems with eyesight.
4.3.2 NHS Confidentiality Leaflets: Standard Vs Easy-Read
The majority of the clients interviewed (80%) advised that they preferred the easyread version of the NHS Confidentiality leaflet; 1 client preferred the standard
version, and the preference of the remaining client was not established. The client
who expressed a preference for the standard version did so because it had no
pictures:
“That yin, that one [points to the standard version]. Because I like that one instead of
that one, I like that yin the best. No pictures wae that yin I like that yin the best [points
to standard version].” (Client 2)
Similarly, a client who advised they preferred the easy-read version would also prefer
not to have pictures:
“I think I prefer the big one [refers easy-read because it has bigger writing]. I’ve only
got one eye, I’m blind in that eye. I would nae have pictures on it. As long as it gets to
the point.” (Client 9)
The aspect of written information that was important for this client was larger writing
due to her sight problems, she also wanted information that was pertinent. For
another client there was nothing about the standard version they liked, “Nup! [when
asked if there was anything he liked about the standard version].” For another client,
the aesthetics and wordiness of the standard NHS Confidentiality leaflet were
enough to put them off:
49
“Good grief! Gobblede! [referring to standard NHS Confidentiality leaflet]. Jeez, I get
confused enough as it is thank you very much. Get it away! [laughs]. Just get that out
of my face. I cunnae understand what’s- what it’s really saying. I-I’m being honest. I’m
being absolutely honest” (Client 3). They found the easy-read version more pertinent
and easier to read, “No, I like that. Yip, I think so, yes. It’s short-short and simple. No,
nothing wrong with that one.” (Client 3)
One of the clients that attempted to read the standard version of the NHS
Confidentiality leaflet very quickly advised that they preferred the easy-read version.
The client also advised they would still attempt to read the standard NHS
confidentiality leaflet if it was sent to them but would struggle with some of the
harder words, and would not read it in one sitting:
“Some of them-they words on this like ‘data, under the act’. Aye, you wonder what
they means. You wouldn’t understand. That’s a lot mare clearer [refers to easy-read
version]. There’s a wee bit there, because I like to know anything, if they want to know
my name, address, date of birth, anything like that, I’m good at that way tae...Most of it
aye [understands standard version okay]. I would say aye. Mm-mm, maybe just some
the hard words. Apart from that I-and then I would struggling when I went to the next
page [laughs]. To understand some of these! Oh definitely. I would go through it but
it would take me time. I would definitely go back and maybe, something like that, put
a bit of paper in it [refers to a bookmark]. Cos I’m no a very good reader.” (Client 6)
However, in relation to the easy-read version of the NHS Confidentiality leaflet, a
picture on the front triggered a memory that they shared about a time when he was
in hospital. The client also felt he could read and understand the easy-read version
better:
“When I seen that bit there that remembers me when I was in hospital. The picture.
And they were telling you to take off your clothes and then put you in a wee dress and
that. I remember that. That is a lot easier [refers to easy-read version]. I would
definitely go for that one [refers to the easy-read version]. It’s just actually, it’s showing
you the picture at the same time and it’s mare understanding tae I think. Oh the size is
good [of the words], the size is perfect. I think the pictures is brilliant in them. It’s more
understanding. I could maybe read that a lot better than that one. I reckon that one
there would maybe take me about twenty minutes [referring to the standard version],
but that one would maybe dae maybe eight to ten.” (Client 6)
50
4.3.3 Learning Disability Service Leaflet
In relation to the LDS leaflet, 2 clients advised that they had seen the leaflet before
and only 4 clients provided additional comment about the leaflets. One client did
not find the pictures on the leaflet to be helpful and thought they were not needed
(again the size of words for this Client was important due to her sight problems):
“No really, naw [whether the pictures were helpful]. Yeah, I would say that was right
[points to a section on the leaflet and the interviewer reads it aloud]. ‘Your health
worker will listen and work with you and decide the best way they can help’. …The
words are fine. I don’t like the images. I don’t think they need that.” (Client 9)
However, for another client the pictures allowed them to engage with the leaflet:
“Oh that’s doctors and nurses [points to symbols on leaflet]. OT [occupational therapy]
used to dae that. It’s no *name* is it? Wee *name* used to do that picture painting in
*clinic*. Cos nice pictures in it and all that init. That says music.” (Client 4)
This was also the case for another Client who could read some of the words, would
struggle trying to read it all, but felt that the pictures helped them understand the
content better:
“I like the pictures cos it shows you that [points to picture of envelope] and you send a
letter. That helps a lot. Some of them [words] are alright. Maybe the "community.”
But I know ‘learning disability’ but if I was trying to read that altogether I would
struggle. And then I know it was a doctor, the social worker, aye, teacher. Aw they
kind of-the pictures dae help. I prefer big [words]. No, I’m happy with that. But any
wee-er it’d be toaty. That’s a big hard word [points 'physiotherapist'].” (Client 6)
This client also liked the size of writing but stressed that it could not be any smaller.
However, one client immediately stressed that they could not read, and advised that
if it came through to them they would need support to read it:
“Okay, but I can’t read. Keep it. And get somebody to help to read it through with me”
(Client 10). The client then attempted to read the leaflet and, apart from the longer
words, they got most of it right, “‘Living Independent Safely’ [reads from the leaflet - it
actually read 'Learning Disability Service']. I don’t think I’ll, eh ‘Community living
independent team are made up of people who can find out about your health needs’
51
[reads more from leaflet and it actually says Community Learning Disability teams are
made up of people who can find out about your health needs]. But I can’t read it all”
(Client 10).
This client seemed to lack confidence with their reading ability as they were able to
read quite a bit of the letter.
In the course of the interviews, some clients questioned the relevance of the pictures
chosen. One client referred to the pictures beside the opening and closing times of
the service (both the sun and moon look as if they are in daylight):
“But I thought they might of wanted eh to have a wee bit darker, do you know what I’m
talking about [referring to picture of moon for pm]? Just to show the dark at the same
with the moon.” (Client 6)
Another client was ‘reading’ the leaflet using the symbols and read, “Get married”,
when referring to the symbol for occupation therapist because that was their
interpretation of the symbol.
4.3.4 ‘Beating the Blues’ Booklet
All clients liked this booklet: it elicited more response from clients than all the other
written information examples shown at the interviews. The most surprising response
was from one client who had consistently advised they did not like the
pictures/photos in the previous documents (because the important aspect for them
with the other written documents was the size of writing due to her sight problems).
Yet they seemed to not only relate to the content of this booklet but also liked the
photos, the style of the booklet and the wording:
“[Client reads the whole booklet from cover to cover]. Well I don’t like taking tablets
either. I don’t, I do agree with on that one. It’s tell you there about his bad days. And
what he can do to beat it. I can relate to that book and say ‘yeah’. Aye, that’s quite
awright [style of the book with colour, photos and speech bubbles]. Nothing wrang wae
it! There’s nothing wrang with them [photos]. Yeah I can read it [referring to size of
words]. The colour’s fine. Nothing wrong with it. I liked that [the best points to
‘beating the blues’].” (Client 9)
52
Other clients were also able to relate to the content and the photographs:
“Whoof, this is a good one for me. This is a good one. I definitely have that bit there
[points to speech bubbles]. No, ‘yes I have very bad days’ [reads what’s in speech
bubbles]. I have a lot of very bad days. I can understand. I can see when he’s feeling
down that the carer comes in and asks him ‘what’s wrong?’, know what I mean, ‘can I
help?’. And she’ll try and have a review with him, have a wee talk.” (Client 6)
This Client also added their own interpretation of what was going on from the
pictures by suggesting that the Carer would come in and have a review with them,
demonstrating their use of their own experience of service provision to understand
the content of the photos. Another client related to the content:
"Oh that’s me. I feel down. I feel so down and fed down and all that. You’re right
nobody understands me half the time [laughs]… I understand how he-how he-how
actually how he’s feeling.” (Client 3)
In a very short space of time, the booklet provided the space and context for some
Clients to share a number of factors about their lives, illustrating the power of having
a resource that is pitched at the right level for the person reading it. As well as the
content helping to make the information in the booklet accessible, the photographs
helped some clients to understand the content more:
“Naw, you are better with the photograph. To know. What it’s about. About-about-it
would tell you more. That-that suits me. Aye.” (Client 3)
This appeared to be the case not only for those clients who could read, but for those
who seemed less able to do so. The photos in the booklet allowed Clients to ‘read’
the booklet and provided the opportunity for them to engage with written
information:
“He looks depressed. I think so. And there is somebody there to try and comfort him
there. I see somebody sitting there and going like that [rests head on his hands]. And
then somebody staring into space. See the names underneath that an’ folk being sad
and unhappy and that and folk being happy and that.” (Client 1)
53
Similarly, another Client was able to engage with the book from the pictures alone,
albeit the meaning they took from the pictures was different to what was meant.
Furthermore, the client who lacked confidence with their reading ability conveyed
that they would even try to read a bit of this booklet themselves, adding weight to
the accessible nature of this booklet for a wide range of clients:
“Oh! It’s a book! But I cannae read. It’s very interesting so it is. Yeah, I would have a
look at it. Yeah. And try to understand it more. I would get someone to help me and I
might try myself a wee bit. Just a wee bit. Some words what I know. A wee bit of it. If
I’m not sure I maybe ask someone.” (Client 10)
Another client also liked the colours, but would have preferred drawings rather than
the photographs because they felt they could understand drawings better:
“I think the drawing’s better [than photographs].I think it’s more understanding. I think
it is anyway” (Client 6). “I like the colours! I dae like the colours on that. That
brightens it up tae!” (Client 6).
Although all clients reacted positively to the booklet, one Client felt the speech
bubbles were interfering with the photo and would have preferred them to be below
the picture.
The ‘Beating the Blues’ booklet elicited positive responses from all Clients, facilitated
discussions and prompted some clients to share insights in to their lives and some
clients to recall events from their lives. The photographs also helped clients ‘read’
and engage with the content, albeit support would still be helpful for a few clients to
fully understand and interact with the information.
4.4 Theme 4: Involvement in the production and evaluation of easy-read
Clients were asked whether they had ever helped make easy-read information and
whether they had ever been asked what they thought of existing health information
(refer to Appendix 3, Q6 and 7). The majority of clients advised they had not been
involved in the production of easy-read information (80%) nor had been asked to
evaluate existing health information (90%).
54
One client that had been involved in the production of easy-read information initially
indicated that they were unsure whether they had been involved in producing
information, “I don’t know (...) don’t remember” (Client 4). The client then retrieved a
folder entitled ‘Life Story Book’ that they had prepared with Occupational Therapy.
The story book was about their life and included events that had happened and
places that they had visited. The second client who had also been involved in
producing health information had helped produce 2 documents, one was for people
with learning difficulties and one was about the town they lived in:
“I done something with the college, I remember that. It was a, this was going through
a book and it's for learning difficulties tae. (...) Things like em, when your mum passed
on in your family, how you felt and things like that. And when you would moved into a
new place with mare disabled people, how would you feel. (...)I've done a thing about
*town *. It was all about *town*. How I actually, things happened and things.” (Client
6)
Only 1 client reported being involved in evaluating an easy-read resource, which was
a letter that was issued by the centre they regularly attended and incorporated signs
and symbols. The client’s communication was limited and although they were
supported by a family member within the interview it was not possible to ascertain
what the evaluation entailed.
55
5 CARER INTERVIEWS: RESULTS
As described within the methods section, 10 carers (5 unpaid, 5 paid) were
interviewed. The following 6 main themes were identified:
1. Carers as facilitators of Clients’ health and wellbeing
2. Carers’ experiences of NHS services
3. Experiences of health information provision
4. Easy read information: form and function
5. Perceptions of NHS written information
6. Involvement in the production and evaluation of easy read.
5.1
Theme 1: Carers as facilitators of Clients’ health and wellbeing
Carers acknowledged the variability in the health and communicative abilities of the
people they supported and more importantly how this influenced the extent of the
person’s participation in their own healthcare and the nature and extent of the
support provided. Where a person had complex needs, this was described as limiting
the extent to which they could communicate their health needs, or understand
interventions when they occurred.
Some carers commented on an individual’s lack of engagement with health
information, or engagement which was often superficial or passing. For example:
“as soon as your backs turned they’re [hospital signs and injection signs] in the bin.
She doesn’t want to see them. Och she just doesn’t want to know about it, no.” (Unpaid
Carer 5)
“Oh she liked the pictures, she liked the paper. Briefly [looked at it]! And then I think it
went into the bag.” (Unpaid Carer 3)
The literacy skills of individuals and the implications for the level of support
necessary to engage with health related information were also raised by carers.
Literacy levels were variable, with some individuals being described as unable to
read; for others, although they may be able to recognise words, their comprehension
of their meaning would be limited; it was also noted that individuals would often
focus on single aspects of information that they could recognise (e.g. their name, or a
time), and neglect the other content. One paid carer described someone they
56
supported as having the ability to read e.g. an easy-read confidentiality leaflet, but as
lacking the confidence in themselves to be sure they had understood it:
“we read things to her and we say, ‘well this means such and such’, ‘aye I did think that
but I wasnae sure’. She just lacks really a lot of confidence in herself. Em, but no, I
think she’d be absolutely fine with that [easy-read confidentiality leaflet], yip.” (Paid
Carer 4)
As an accommodation of the perceived needs of the individuals they support, some
carers described themselves as dealing with written information coming into the
house:
“General household stuff, all his bills and things. No we just tend to deal with that ..[]..
I don’t want to overload him with something that’s not going to make an impact on his
day kinda thing.” (Paid Carer 3)
In addition to literacy ability, carers discussed how familiarity with individuals and
environments influenced how people with learning disabilities responded to
healthcare interventions. Some described this in positive ways, noting the
advantages of seeing people who were accustomed to the individual, and their
communication; others noted the challenges which could arise in the absence of
such familiarity:
“Whereas a lot of the guys you find they like the same routine, they like the same
people to deal with it. So if we’ve got that information we try and ask for the same kind
of people but it’s not always [easy].” (Paid Carer 2)
“You know, it’s different if we have a service person who understands them, they speak
in a language that they would understand. But when you go and it’s a stranger or
someone who’s maybe running late and everything needs to be done quickly. Em,
there’s very little, I find, in most of the clinics, very little time given to special needs.
Everything is directed at the carer, you take it on board and you go home and tell
them. And I don’t think that’s right.” (Unpaid Carer 5)
Others reflected that familiarity could have disadvantages, through the creation of
negative associations:
57
“I’ll sit and I’ll say to her that we’re going to see the doctor. You know, but anybody
with white coats or things like that and she will be like frightened. I mean she’s been in
and out the hospital quite a few times all her life.” (Unpaid Carer 2).
Some carers described themselves as taking responsibility for some healthcare
decisions, including deciding to opt out of healthcare screening for the person they
support:
“She gets invited to, to go for different things like smear tests and things like that. But I
always phone up the surgery and ask her to be removed off the list for things like that.
Because I don’t think, I think it would scare the living daylights out of her. No, I don’t
feel it’s appropriate really for her [referring to smear test]. I mean I’ve taken that on
myself. I haven’t discussed it with her.“ (Unpaid Carer 1)
“I mean she should be for breast screening. But she wouldn’t have coped with it. I’ve
been once and don’t want to go back! So things like that we discuss it as a team, and a
support plan meeting and we might even then maybe phone up their community team
and say, ‘ look what do you think, do you think we should be doing this?, we don’t but
we’re no too sure’. And that kind of way. But it’s the staff that do it all. She wouldn’t
understand it [breast screening]. And it’s painful!” (Paid Carer 5)
On other occasions, the decisions made by carers would reflect the necessity for
intervention, despite the objections of the individual:
“so certain things she’ll let you know for definite, ‘I’m no happy. I’m no wanting it’ but
there’s no other option sometimes so we’ve got to go ahead and do it if it’s for her
health and her reasons then we’ve got to.” (Paid Carer 5)
As well as taking responsibility for making some decisions, some unpaid carers
described themselves as filtering out information which they did not think it was
relevant for their family member to be aware of:
“We monitor what we give them we don’t give them too much but what we think they
can cope with.” (Unpaid Carer 5)
“But I mean if we did [get written health information], and I thought it was relevant.
And, yes I would, you know I would you know, ‘do you know what that means.”
(Unpaid Carer 1)
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With regards to the practicalities of attending appointments, carers identified various
roles they fulfil such as monitoring the individual’s health and wellbeing and making
the necessary appointments; ensuring appropriate support is available; determining
the best time to inform the individual about an appointment in order to minimise
stress; discussing appointment letters; and accompanying the person they support to
the appointment to serve as source of support and aftercare.
Carers’ role in supporting attendance at health appointments was variable. One paid
carer described their involvement with an individual who arranged and attended
appointments independently, while other paid and unpaid carers described
themselves as having a more active role in dealing with appointment letters, or
supporting attendance:
“if a letter comes from the doctor addressed to *family member*, she might open it but
she’d just leave it for me to deal with. She doesn’t even-she’d say ‘oh that’s for you to
look at’. You know, she doesn’t even attempt to, do anything herself.” (Unpaid Carer 1)
Where an individual was perceived as having a poor understanding of their own
health needs, carers modified their behaviour to accommodate this. One unpaid
carer described the challenges they faced in reconciling their family member’s
aspirations with their support needs, while another spoke of their role as an
advocate:
“In some ways that’s good [family member doesn't understand she has Downs
Syndrome], but in other ways it’s very complicated because you’ve got to face reality.”
(Unpaid Carer 5)
“I’m her advocate for want of a better word or her carer. Cos she, she wouldn’t
understand first of all what they’re saying [at health appointments].” (Unpaid Carer 3)
The presence of carers at appointments was identified as serving multiple functions,
including providing a source of reassurance to the individual. For example:
“Just keep her at ease. Same with a lot of other guys who maybe don’t like the dentist
and don’t-find it a real struggle…[]…‘right remember you’ve got the dentist, don’t worry
you know what it was like last time. It was great, you’re doing so much better’, just a
wee bit encouragement.” (Paid Carer 2)
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Supporting communication within the appointment was also a key role: both in
terms of helping the individual communicate what is wrong with them, and in
attending to what was said by the clinician seen. Understanding the outcomes of an
appointment was also an essential aspect:
“ …if need be we will attend with them so that information they’re receiving from the
GP or the hospital is getting back to us because of sometimes, you know they don’t
retain that information.” (Paid Carer 1)
Carers also discussed the role they played in informing the person they supported
about their health and emphasised the importance of tailoring information to meet
the needs of the individual. Using simple language, or picking out the key aspects of
information, were two of the ways identified:
“Oh I just explained it in simple terms [speaking about menstrual cycle problems]. No
point in getting complicated about it. You know, just things that she would
understand.“ (Unpaid Carer 1)
“it was booklets and booklets we were given but I also think that some of the
information was that you had to read through it to pick up the main parts to be able to
explain it.” (Paid Carer 2)
Carers reflected on how they frequently sought out information in order to support
an individual. The sources of information accessed by carers were varied, and for
some were broadly described in terms of getting information ‘from the different
people’ (Unpaid Carer 5), or constituting part of a general awareness of what was
happening within their community. More specifically, the Learning Disability Service
was identified as a source of information by a number of interviewees, with team
leaders and community nurses being specifically highlighted. Speech and Language
Therapists, and other specialist clinicians (e.g. a Cardiac Liaison Nurse; an Epilepsy
Nurse) were also highlighted. One paid carer mentioned a local advocacy group as a
good source of information, while an unpaid carer commented on apps they had
used successfully. GPs were also highlighted, by one unpaid carer in particular, who
commented on the longevity of that relationship:
“The GP that has known her from birth has just retired so, got another GP on board
now and they’re, they’re my first port of call, cos they’ve known her from cradle.”
(Unpaid Carer 3)
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The internet was also identified as a key source of information with some using it as
their first port of call for health related information. Both paid and unpaid carers
discussed using it to develop their understanding of medication prescribed to the
person they support, or to understand a health issue they were experiencing. The
internet was also identified as a source of information in relation to appropriate
activities and equipment. Carers also recognised the disadvantages of accessing
information on the internet such as the volume, its potential for raising anxieties, and
concerns about its accuracy. The Easy Info Zone within the NHS Inform website,
which only provides NHS approved information, was shown to the carers interviewed.
Despite none of them being aware of it, the potential benefits were generally
recognised.
Effective sharing of information among the members of the distributed care team
was also identified as a role for carers, either between paid and unpaid carers or
members of a paid care team. Mechanisms for this included completing diaries of
support, weekly planners or medication folders. Carers also described themselves as
acting as a conduit for information to NHS and social care professionals. Within
organisations providing paid care, information could be circulated regarding local
activities and resources. At a more immediate level, one paid carer recognised the
importance of sharing information within a team in order to maintain a consistency
of approach.
5.2 Theme 2: Experiences of NHS services
Carers reflected on their involvement with NHS services and identified both positive
and negative experiences. Interviewees identified a variety of ways in which NHS
services had positively supported the individual(s) they supported. Receiving
reminders about the need for an appointment over the phone as opposed to via
letter, and having access to a specialist practitioner were two ‘systems’ aspects which
were positively highlighted. Other aspects valued were knowledge of the individual
or people with a learning disability in general; communicating directly with the
individual as opposed to speaking to the carer; and being prepared to tailor a service
to the needs of the individual. For example:
“… when we knew it was going into an adults ward, we thought, ‘oh, how’s this going
to work? Somebody’s got to be with him like aw the time’, and they tain it onboard and
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we got a side room and they got me a bed and I stayed like, with him, and *spouse*
came and we done it in like kinda shifts, back and forward.” (Unpaid Carer 4)
“*Son* verbally would be fine, he just needs people to understand that he needs time
to process what you’ve said to him…[]…Now like when he goes to Doctor [Name] the
rheumatologist, she knows that so instead of getting a ten minute appointment, he
gets a twenty minute appointment. So they prepare for his appointment to be slightly
longer because he needs that time. No every clinic would do that.” (Unpaid Carer 5)
Carers spoke about the role they played in supporting an individual both practically
and emotionally and the difficulties they sometimes encountered in having their role
acknowledged. For instance:
“It’s
trying to find out the information because it’s not, sometimes in the hospital they’ll
talk above you. The doctors and nurses will sort of talk above you and say look ‘can
you talk to me and then I’ll explain it to [Client]’ cos [Client] doesn’t understand. I can
relay it to [Client] and say ‘right, [Client] the doctor’s going to stick a needle in your
arm’ or ‘the doctor’s going to listen to your chest’ whereas if they come straight at her
she would absolutely freak! She would really get quite hysterical whereas, she’ll still be
upset, but as long as I’m there and I’m holding her hand and I’m talking her through it,
she’ll stay calm.” (Paid Carer 5)
Just as the actions and attitudes of individual staff were identified as contributing to
positive experiences of NHS services, they were also identified as contributing to
negative ones. Staff failing to communicate effectively with the individual, and
electing to address the carer instead, was experienced by several interviewees:
“nurses have got the wrong attitude because they look at you, they talk to you and they
should be talking to the wee person. And doctors, the same.” (Unpaid Carer 2)
“certainly when he attends appointments, it depends on the individual nurse or doctor
and their own experiences or whatever and how they even interact with them.
Sometimes you’ve got an appointment and they’re awkward or they don’t know how to
interact.” (Paid Carer 3)
For one unpaid carer, this reflected a failure to treat people with a learning disability
in the same way as other people. Clinicians’ limited knowledge of learning disability
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had been experienced as impairing the support provided, as described in a paid
carers’ experience of diagnostic overshadowing4:
“Where some people we’ve had experiences in the past where taking people out to the
hospital where there’s something really wrong and it’s ‘aw, she’s got a learning
disability, she’s fine’. -you know what I mean, like sometimes it can be brushed off.”
(Paid Carer 2)
Carers also discussed experiences of them not being listened to, or not being kept
informed:
” I feel… we’re her main carers, please explain everything to us [referring to hospital
staff]. Cos sometimes we only get snatches of the conversation.” (Paid Carer 5)
Some unpaid carers described instances of staff engaging with them or their family
member in a way which, to their mind, suggested a lack of knowledge of the
individual or the people with a learning disability in general. One instance related to
a doctor looking for consent from the individual themselves for a procedure which
needed to be done, while the parents were clear that it was them who would provide
consent. Another unpaid carer described a scenario which, as well as possibly
reflecting a lack of knowledge, more fundamentally evidenced a lack of respect:
” they didn’t address [family member], they sat facing a wall with their desk that way,
[family member] this way, with me. He didn’t have eye contact with him, he didn’t
speak to him” (Unpaid Carer 5)
Inefficient information provision was also described by some, whether in terms of the
letters provided being in a format inaccessible to the person they support (i.e. not
easy-read), or the length of time it takes for information to get sent out. Other issues
related to broader aspects of service delivery, including: lack of effective
communication between NHS services (e.g. a failure to indicate required epilepsy
medication in correspondence from a hospital to the individual’s GP); failing to
appreciate carers as a source of information, or a means of supporting engagement
with the individual; and reactive services demonstrating a lack of forward planning
and a lack of consideration for the needs of the individual. For example:
4
Diagnostic overshadowing refers to physical or psychological problems being incorrectly attributed to an
individual’s learning disability, or being perceived as of lesser importance due to their disability.
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”. we had to wait for five hours. It’s a long time when one, you’ve got rheumatoid
arthritis in your spine and two, you’re on the autistic spectrum…[]… Now, nothing was
getting done in between that time. That is ridiculous. Without anybody saying the
consultant’s running late or you could go away and stretch your legs and come back at
a specific time.” (Unpaid Carer 5)
The negative experiences of several carers led them to make suggestions as to how
services could be improved. Two carers emphasised ways in which services could
become more accommodating of people with a learning disability, including longer
appointment times; prioritisation within clinics to reduce waiting time; and better
engagement with staff teams to inform them about support needs following
discharge. For one unpaid carer, better communication came down to the need for
improved provision of staff able to sign within hospital settings. Clinicians spending
time with individuals to introduce themselves was also suggested as a possible
improvement, this being couched within a recognition of the busy-ness of acute
environments, and the challenges presented by shift changes. For this same carer,
the need for staff to recognise the benefits of spending some additional time with a
client was tied to the need for, and possible benefits from, staff accessing training
regarding the needs of people with a learning disability. For example:
“I know it’s busy wards and that and I feel I understand her. But just sometimes a wee
bit of time to sit and talk and let them get to know you, like [Client] get to know the
nurse. And of course, staff changes every two or three shifts as well which does nae
help but that is, that’s a fact of life. But em, just- they would come in and say, ‘right
can you tell me what you I can do with [Client], how to explain?’ And, do it, it’s trying
to do it as simplified as possible.” (Paid Carer 5)
5.3 Theme 3: Carers’ views and experiences of health information
Provision
All carers were asked about the extent to which they had been provided with
information in a variety of formats. An overview of responses in relation to this topic
is presented in Table 5.1 (next page). In addition to verbal information, carers most
frequently experienced receiving information in an easy-read format. A number of
paid carers reported access to DVDs through their organisation, on topics such as
dementia or epilepsy. The potential relevance of DVDs came with a caveat in the
64
view of one interviewee, who suggested that for an individual they supported, a DVD
may become a source of anxiety by providing an excessive amount of information.
CARERS
AI
PAID CARER
Format
UNPAID
CARER
Total
Yes
No
Yes
No
DVD/Video
2
3
1
4
10
Audio
0
5
0
5
10
Play/Drama
1
4
0
4
9
Easy-
5
0
2
3
10
4
1
4
1
10
17
49
read
Verbal
OTHER
Groupwork
1
Workshops
1
Total
14
1
13
8
Table 5.1 Experience of different information formats
Another paid carer identified possible benefits for staff in having access to such
materials, in order to familiarise them with, e.g. what happens during an ECG. Carer
experience of plays / drama as a means of conveying information was limited. One
interviewee recounted accompanying a group of individuals to a drama based
workshop on hate-crime, which was found to be extremely successful in engaging
those present, as well as having a lasting impact on them:
“Very helpful [workshop on hate crime], em they went on about it for weeks and weeks.
And one of the guys were like’ are we going again next week to something else?’ So
they really really took it in. Em, and it brought one of the women I was supporting out
their shell, like, answering all the questions, not really needing much support she was
just shouting out and giving all her answers. Which was really nice to see.” (Paid Carer
2)
Most interviewees had experience of receiving appointment letters for the person
they support in a standard, un-adapted format. One unpaid carer commented:
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“you feel well no everybody’s able to like understand that. Ken like there’s a lot more
information on there that’s maybe, it’s no really needed, eh-so like keeping it plain and
simple is easier for somebody.” (Unpaid Carer 4)
5.4 Theme 4: Easy-read: form and function
Easy-read resources were recognised as coming from a variety of sources, and as
bringing with them a variety of functional ebenfits. Carers most commonly reported
receiving easy read materials from the Learning Disability Service. One unpaid carer
remarked on the provision of easy-read materials by a children's hospital, which had
ceased when their family member had moved out of that service, despite the
approach remaining relevant. In the course of describing their experiences of easyread materials, interviewees outlined some of the benefits they saw in them, primarily
in relation to clarity and the reduction of jargon:
“you can’t misread them [easy-read information]. It’s clear, it’s, when you’ve got the
picture of the clock then it tells you the time, so it’s straightforward. Em, if you can
sometimes feel, the normal letters, you’ve gone through a paragraph before you get to
the actual appointment sometimes.” (Paid Carer 3)
“There’s no as much jargon there [benefits of easy-read], it’s got basic, straight to the
point, what they need to know, so it’s less to like you know, take in for her to try to em,
try to understand.” (Paid Carer 4)
In terms of the general status of easy-read as an approach within the NHS, some
interviewees commented on the limited usage. One unpaid carer suggested that this
in part reflected the additional work required in developing easy-read materials, and
the motivation of individual staff to make that investment:
“I think it depends on the individual [referring to NHS staff's knowledge of easy-read].
If the individual’s willing to do the work for it. Because it’s no em, it takes longer than
just saying right, can I get a standard letter written.” (Unpaid Carer 4)
For another interviewee, the limited use reflected the fact that you needed to be
aware of the appropriateness of easy-read materials for an individual:
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“It’s not been put into easy-read [hospital and GP appointment letters]. But then again
I’m no sure whether that’s because they don’t know that the person they are sending
that out to has a learning disability or no, and I’m no sure how they would get that
information.” (Paid Carer 1)
Another interviewee suggested that the increased use of easy-read materials could
perhaps be supported by a flag within an individual’s records, indicating that easyread materials were relevant for that person. In general, carers saw the people they
supported as requiring information either in an easy-read format, or verbally. One
unpaid carer reflected on the potential for easy-read materials to be used to
subsequently support verbal information. A number of interviewees again
highlighted the potential for easy-read materials to support the involvement of the
people they support, with some highlighting the language and use of images as
positive aspects, and others commenting on the visual appeal of such materials.
Carers also described a variety of ways in which they made use of easy-read
materials. Some described using it as a support when explaining information: the
way in which easy-read material highlights key information, and how it helps to
structure a conversation was viewed as a major benefit:
“if you’ve got this big [topic] and you’re like right, where do I start, where do I start
explaining stuff, whereas the easy-read then-the information that the guys need to
know is there and you’re just passing on that information.” (Paid Carer 2)
A number of carers described the way in which easy-read materials facilitated the
involvement of the individual within the conversation, through presenting the
information in a simpler, and more engaging manner. One parent contrasted this
with the challenge of involving their family member in a conversation regarding
guardianship, unsupported by such materials:
“…we didn’t get anything like wee symbols or anything, cos the lawyer would nae do
anything like that. But it’s something that, if there was information out there, it makes
it easier for somebody like the likes of [family member] to understand, then it makes
the parent or carer’s life a bit easier as well.” (Unpaid Carer 4)
Easy-read materials were also described as being useful when recapping the
outcomes of an appointment with an individual. Some unpaid carers described
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incorporating easy-read materials into daily planning activities, noting the use of
visual elements (e.g. a hospital sign) to provide prompts as to activities.
Various benefits of using easy-read materials with individuals were reported. For
some, incorporating visual elements into activity planning had helped with the
establishment of routines. Improved understanding and, consequently, the reduction
of stress were also described:
“But a passport letter I think would maybe help some of them to actually understand
instead of just being given a letter and it says, look it says you’ve to go to the hospital
and blah, blah, blah, and you’re going to get an x-ray and an echo and whatever else
it might be. Because that’s them, they’re stressed like that, ‘hospital!, xray!, echo!,
what’s that?!” (Unpaid Carer 5)
With regard to the kinds of images used within easy-read materials, the key issue for
interviewees appeared to be that they were there. Whether photos were used or
drawings, or colour images as opposed to black and white, there was no overarching
consistency. One unpaid carer reflected on the relevance of photos or illustrations
being linked to the nature of the materials: the same carer remarked on how, within
the ‘Beating the Blues’ resource, the photographs were an effective means of ‘telling
you a story’.
For some, the benefits of easy-read materials supported its implementation on a
broader basis, whether by a greater variety of organisations (e.g., lawyers and social
work), or for a wider variety of client groups. One interviewee described how easyread materials would be of benefit for their elderly mother, as a means of making the
salient information within correspondence (e.g., appointment letters) more evident.
Those who didn’t have English as a first language, or those with low levels of literacy,
were also identified as possibly benefitting:
“… cos it is sad to see that no everybody’s able to read, even kinna like normal, kinna
like no having like a disability. Em to have like some form that everybody can
understand, like a picture form or just easy-read. Kind of, keeping it basic.“ (Unpaid
Carer 4)
The challenges of pursuing a broader implementation were also discussed, to some
extent. One participant identified the issues associated with responding to a broad
variety of information needs within a setting such as a GP surgery. Others
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commented on the way in which such materials could be perceived as child-like, or
recognised that even with easy-read materials, many would not be able to make use
of them at all, or would still require support. That being said, one paid carer
balanced this issue against the potential benefits for others:
“Again even if it was just coming out like that [easy-read] You know, they would still
need some support. But there would be others there that would greatly benefit from
because then it would allow them to be independent, em and go out their own.” (Paid
Carer 1)
5.5 Theme 5: Carer perceptions of examples of NHS written information
A variety of existing NHS written resources were discussed, in order to explore their
responses to them.
5.5.1 Appointment Letters; Standard v Easy-read
Participants were shown an example of the easy-read appointment letters sent out
by the Learning Disability Service, and an example of those produced by the Patient
Management System which generates appointment letters to a standard template. A
variety of benefits were attributed to the easy-read letter. Most commonly, it was
described as being clearer in its meaning, and helpful for engaging with the people
being supported, while the standard letter template was highlighted by some as not
being inclusive of people with a learning disability. Elements such as the font size and
spacing, and the reduced chance of it being misread were highlighted as important
aspects of easy-read. For individuals with limited literacy, the format of the letter
increased the likelihood that there would be some element of it which they could
pick up on: potentially, its relevance to them would be more evident, increasing the
chance of it being acted on. For example,
“…this [standard letter] they would just leave it sitting till the worker came in and that’s
when sometimes things get lost…[]… where this [easy-read letter] looks like straight
away they would know this looks important and they would pass it on.“ (Paid Carer 2)
An additional element of this was introduced by one unpaid carer, who suggested
that for information they would prefer not to share with the family member they
supported, then the standard letter template would be fine. The use of symbols and
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photographs within the easy-read letter were identified as a helpful means of
assisting understanding, and highlighting the relevant information, and providing
visual cues in relation to and the appointment location itself. The use of visual
elements also meant that the appointment letter could serve as a prompt, when
displayed within the home. The easy-read letter was also highlighted for its clear
presentation of the key information:
“You don’t have to read through a couple of paragraphs to get that your appointment
is on such and such a date.“ (Unpaid Carer 3)
The broad support for the easy-read letter did not mean that it was seen as a
universal solution. Some interviewees stated a preference, for themselves, for the
standard letter template; others reiterated the fact that an easy-read letter would still
not engage those with the most complex support needs.
5.5.2 Health Information Scotland Confidentiality leaflet: Standard v Easy-read
Responses in relation to the confidentiality leaflet were less clear-cut than to the
appointment letter. Elements of both were seen as positive: the easy-read leaflet had
useful illustrations and was briefer; while the standard version was more eye-catching
(making use of brighter colours), as well as being better structured in terms of topics,
questions and answers. While the pictures within the easy-read version were
identified as being helpful for understanding, there was also a suggestion that they
were open to misinterpretation.
Both the easy-read and standard versions were seen by some as being too long and
wordy. Some still expressed a preference for the standard version of the leaflet,
however of those who expressed a preference, most preferred the easy-read, for
reasons of clarity and brevity. One unpaid carer highlighted that even with the easyread version, they would adapt the information in a way that was more familiar to
their supported family member. For instance:
“So you don’t need a leaflet to tell you how to do that. Because you’ve been doing it
for the last forty years... And nobody’s ever going to second guess that or have enough
knowledge.” (Unpaid Carer 2)
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5.5.3 CLDT Information Leaflet
There was generally a positive response to this leaflet: features highlighted included
it being inclusive, the use of images to support meaning, the size of text, and the
opportunity it provided for structuring a conversation. As with the other materials, it
was suggested that it was not a universal solution: there would always be some
wouldn’t engage with it. There was also some scope for improvement identified: the
size of symbols was seen to be too small for one individual; and the Nurse and
Psychiatrist images did not reflect people’s experiences of those professions (in that
LD Nurses didn’t wear uniforms, and Psychiatrists didn’t carry stethoscopes).
5.5.4 Beating the Blues
This resource was well received and it was found to be aesthetically appealing and
engaging. The use of photos within the story was commented on positively: one
participant commented on the expressions on the faces which were evident within
them, and which would help to convey the meaning. Some carers were able to think
of individuals for whom the topic would be relevant, some of whom would be able to
identify with the protagonists within the story. An additional positive ascribed to the
resource was that it was made of heavy paper, and would be harder wearing than
other materials.
While the text within the resource was described positively by some as short and to
the point, others noted that it would still require adaptation for the people they
support. While the over-all format was generally responded to very positively, others
highlighted potential issues: for one carer, the amount of information on each page
could still be challenging for some:
“Right I’ve got two opinions here [about Beating the Blues booklet].The first one, it’s
amazing! For a young person who’s not visually impaired or autistic. An autistic child
that would drive them crazy. Because one it’s too bright, it’s too busy and it’s too
cluttered.“ (Unpaid Carer 5)
Another interviewee highlighted the potential for a reader to be become overly
focused on the people within the story, and not see the relevance of the story to
themselves. Cost was also an issue highlighted by some: that it would be an
expensive resource to produce, and disseminate.
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5.5.5 Project Information Sheet: Standard Vs Easy-read and standard
The easy-read information sheet for this project itself was also discussed with a
limited number of the interview participants. Some commented on it being more
visually appealing than the standard version, while others commented on the fact
that it was more inclusive and easier to understand. Generally, the latter point was
made with reference to clients, but one interviewee also highlighted this as a benefit
for themselves:
“For me that’s actually easier [easy-read participant information sheet], because I read
that and went ‘oohhh, right, okay, aye okay’, but this makes more sense. Because it’s
simplified …[]… that [easy-read] just absorbs dead easy, whereas that one [standard] I’d
read it, maybe twice to get everything out of it.” (Paid Carer 5)
5.6 Theme 6: Involvement in evaluation and production of easy-read
A limited number of participants had experience of the production or evaluation of
easy-read materials. Two paid carers were able to speak about ways in which such
resources were being used within their organisations, one in relation to the use of
visual materials to support group sessions on a variety of health topics, as well as
daily planners and the development of easy-read evaluation forms used within their
organisation. The other paid carer described the involvement of their client within an
advocacy group which had generated accessible resources on a variety of topics,
including a photo-based one on making friends. For the former carer, the
involvement of individuals within production took place via draft materials being
circulated to staff, who discussed it with and asked for feedback from the people
they support.
One unpaid carer described generating social stories to describe activities, such as
going on the bus to an NHS resource. Pictures were an element of these stories, and
were also identified as important elements of the resources described by the 2 paid
carers, one of whom described their organisations using familiar elements within
their materials:
“A lot of the symbols, the ticks, the crosses, the smiley faces and what not are what we
try to use as well when we’re sending out information.” (Paid Carer 1)
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The unpaid carer who described their use of social stories generated the pictures
they used themselves from photographs, while one of the paid carers described
sourcing images from the internet. However, the latter participant also described the
intention of their organisation to acquire image software which would support the
use of a consistent set of images across the organisation. There was some
recognition of the time involved in production being a barrier to the development of
easy-read materials.
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6 FOCUS GROUPS: RESULTS
A series of 5 focus groups with a range of healthcare staff were held to help extend
understanding of the questionnaire responses and to further probe staff views and
experiences concerning the provision and use of accessible information.
Six common themes emerged from the discussions:1. Experiences of current health information provision
2. Importance of accessible information
3. Easy-read: form and function
4. Making information accessible: processes and challenges
5. Role of carers
6. Applicability and future of accessible information
6.1 Theme 1: Experiences of current health information provision
Staff discussed a wide range of sources and formats of information that they drew
upon to help convey health-related information such as face-to-face verbal
interactions, easy-read information, DVD, group work, Apps and more general
internet-based resources.
Verbal communication was generally viewed as the preferred way to share healthrelated information, and was often supplemented by additional sources in order to
ensure comprehension. For example, DVDs and the use of pictures:
“I use quite a lot of DVDs for our clients. Some of them don’t understand booklets that
we give them and the information that we pass over so I find it easier to bring them to
base if they don’t have a DV player at home and show them.“ (LDS Participant)
“Sometimes a social story as well. Sort of using real pictures of the actual buildings
and actual people that the individuals are going to encounter are useful.” (LDS
Participant)
Internet sites as a source of information were also considered, and although the
benefits were recognised, concerns were raised about the accuracy of the
information provided and the need to ensure that the appropriate site was used:
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“I wouldn’t say looking on the web is always the best thing to do, I have to say.
Because there’s a whole lot of misinformation or American sites. So, it’s about maybe
looking on the right site and we can all get this in our roots if we are looking for
information ourselves.” (Primary Care Participant)
Current information provision was perceived as rather service-centric, not always
aligned with the literacy needs of the client group and often framed within the
traditional passive patient tradition concerning patient expectations of clinicians. For
example:
“There’s an assumption that everyone attending an NHS appointment is literate, it’s
not just our service, it’s every appointment that’s offered.” (CAMHS Participant)
“But we have some, for example, on the diabetes theme that we do have really good
booklets. Like we would use Diabetes UK, you know, we would use the correct sources
in giving out information. So that’s information for somebody to take away and I’d say
most patients would turn round and say to you, ‘well what do you think?’. You know,
and are willing to accept your judgement or the GP’s judgement and I think that’s
about a trust issue as much as anything else.” (Primary Care Participant)
6.2 Theme 2: The importance of accessible information resources
A number of benefits of accessible information were identified including how it helps
with knowledge and understanding, especially in relation to explaining procedures
and making healthcare choices. For example:
“I think it’s great [easy-read information]. I think it would make our jobs far harder,
em, and it certainly helps to be able to go through the information with people in a-in
a format that they can more easily understand.” (LDS Participant)
“I suppose if you’re providing the information then they’re more able to make an
informed choice. And you can evidence that you’ve kind of, you can say what you’ve
used to come to that decision. So it allows you to kind of be sure that you’re not
influencing somebody.” (LDS Participant)
In general, the increased provision of information in accessible formats was
welcomed by staff, and viewed as necessary to help address a number of practical
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barriers to healthcare. In general staff perceived standard information provided in
less accessible formats as leading to missed appointments and patients being
unprepared for procedures:
“And it’s the same information that’s sent to everybody. There’s no difference, you
know. Our clients get the same information as we would get, so there’s no way them
being able to decipher it if they’ve not got anybody with them. Probably that’s why a
lot of appointments are missed.” (LDS Participant)
“And that’s what happens with a lot of the appointment letters. You get them in, they
[elderly and PLD] can’t understand them so they get put in the bin, missed
appointments, so they get struck off lists. And really, it’s not their fault.” (LDS
Participant)
Concern was also expressed by staff over the emotional aspects of health-related
communications. Health related communications could be a source of anxiety, and
accessible information may ease the emotional and practical difficulties experienced
by some:
“I think from experience of my own I would say that sometimes you get a lot of junk
mail letters in and you only need to take it out the envelope and you don’t even bother
reading it, you just bin it. So for our clients it must be very scary, you know, opening a
letter and thinking this looks like a hospital appointment I’ll just bin it. Whereas, you
know, if it’s explained, if the terminology’s clear and simple they might be interested to
continue reading the letter.“ (LDS Participant)
“I know what you’re saying but for the sake of those people who wouldn’t like it [easyread materials], if it got the people who are intimidated or are unable to read it or are
scared of letters that come in, if it’s something that is far more friendlier.” (CAMHS
Participant)
6.3 Theme 3: Easy-read: form and function
Staff were most familiar with easy-read materials as a source of accessible
information and discussion. Such materials were viewed as appealing to a wide
range of client groups due to their general aesthetic appeal, use of everyday
language rather than medical terms and concise and focused nature:
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“I think elderly or children if you send that out to them ((the participant information
sheet)) whether there was a disability there or not they might not read it. But if there’s
something a bit, you know that’s bright, that’s attractive, there’s pictures there, you’re
getting a grasp of what it actually is before having to read a lot of words round about
it, that’s going to-, that has to be beneficial. The understanding of it.” (CAMHS
Participant)
“I think another thing that helps is using their terminology. Using the words that
they’re used to rather than medical words or words that we’re used to using. If you
know what they use and-and using their terminology it makes it easier for them as well
to understand.” (LDS Participant)
The use of some form of graphic within easy-read material was discussed in depth,
with staff reflecting on how graphics in the form of pictures, images, drawings and
photos were generally beneficial in facilitating engagement and understanding,
thereby improving memory and subsequent recall. For example:
“They may not have the literacy skills as well to understand so the easy-read and
having the pictures there helps support what they’ve been told verbally em, with the
information.” (LDS Participant)
“Sometimes a social story as well. Sort of using real pictures of the actual buildings and
actual people that the individuals are going to encounter are useful.”
Despite their usefulness, staff recognised the complexities of selecting the
appropriate image type for different types of information, and different client groups:
“I think the photograph is useful if they’re going for a scan and you’ve got the
photograph of the hospital equipment. Then it looks like the real thing when they get
there. I think a drawing would maybe confuse the issue. That’s really important. But
when it’s things like, as you say, headphones or em, you know their medication then a
drawing of pills is fine.” (Primary Care Participant)
“So for people with autism especially, I think if they see a picture they expect it to be
pretty much how that picture is. Em, it depends on the service-user really and what
their needs are, and how they interpret things. Because some people are very,
extremely rigid.” (LDS Participant)
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In terms of their use, staff considered how easy-read resources were useful to
structure and support communication about health-related topics. For example:
“I think that some of the Fair leaflets that we’ve used… pictures, information and you
can usually kind of structure what you want to say around they leaflets. So I’ve found
them to be beneficial.” (Primary Care Participant)
“it [easy-read] provides a framework to work from I suppose. I mean sometimes, you
know, having that framework and then going through the things on the leaflet rather
than you just going in and trying to remember everything. It’s good to have a
framework.” (LDS Participant)
Accessible information was also often identified as supporting clients in taking
greater responsibility in monitoring and managing their own health. For example:
“Well I’ve used that as well em, supporting a client who went through a period of
illness and was confused about what meals she was taking medication with so I had to
make up like a picture of a cereal bowl and milk jug for her to leave her medication
beside for to remind her that was breakfast time. Then maybe like a burger for lunch
time, teatime the meal with the plate with the knife and fork and then maybe a snack
at bedtime but they were all different colour coded also. So that her medication had
the same colour as the actual chart and it reminded her this goes with the breakfast
one, this one goes with the lunch so, she was able to maintain that on her own.” (LDS
Participant)
“I’ve found it [easy-read] especially helpful for assessments..... Fluid balance chart, to
make up a kinda pictorial timetable for them to record what they’ve had to
drink….Because they wouldn’t maybe be able to do it with a standard, fluid chart but
it’s just got the pictures of the different drinks across the top. Em, the day so of the
week down the side and then it’s just a case of putting a line in the box when they’ve
had one of those drinks.” (LDS Participant)
6.4 Theme 4: Making information accessible: processes and challenges
The topic of engagement with accessible information was a major focus of
discussion, with staff frequently identifying a range of factors that influenced this,
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including client characteristics (e.g. ability and communication) and the expectations
of clinicians. Staff discussed, in detail, how they would personalise available
information in order to tailor it to the individual’s abilities and promote engagement,
as well as developing individualised materials from scratch where necessary:
“I think if you make it personal. I know most of us, if we’ve got a client that needs, like
a coping plan or a ‘when I’m worrying plan’, we’ll make it from scratch. You know, it
just needs to be one sheet with a couple of pictures and what to do when I’m worried
and put their name on it and make it personal. And then you know they’re going to
understand it because it’s personal to them.” (LDS Participant)
With regards to the skills required to individually tailor information provision, staff
reflected on how this skill developed with experience, and was informed by both
their understanding of the individual and the client group in general. For example:
“I think we do it all the time without even realising it [using AI in day-to-day practice].
We adjust our language and we adjust, I think when you’ve been in the job for a while
you’re just-you’re intuitive. You know straightaway how you pitch something or what
you show someone or, just experience I think.” (LDS Participant)
In order to make information accessible, staff described how they would establish a
baseline of comprehension for each client; choose an appropriate resource; tailor the
information to the clients’ needs; and check understanding. Once a suitable approach
was identified they aimed to maintain consistency. Working through and repeating
information were identified as a key elements of promoting understanding:
“Sometimes you may think the client’s understood it [DVD] and you may have to be
going over it several times. It doesn’t always work bringing them in to base or going to
their home and going through the whole procedure just the once. They’ll say they
understand it and then you can tell at the end of the session that they’re very doubtful
they’ve actually understood most of what they’ve seen and they might need to go over
that several times, before they actually give consent to attending the appointment.”
(LDS Participant)
Staff also recognised the importance of reinforcing the message at home, and
frequently described the role played by carers in supporting understanding of
material. For example:
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“I think we do rely on them [carers] just for that repetition and that consistent message.
That’s where the information, if it’s left with them, you can be kind of, you know that
they are getting accurate information.” (LDS Participant)
“I mean we do leave stuff with carers to go over with clients but then probably we
would go back out and go over it again to make sure the client does understand
exactly what’s involved.” (LDS Participant)
In addition to carers, the importance of inter-disciplinary relationships and
communication was identified as an important factor in providing a cohesive health
experience and ensuring that patients understand and can therefore participate in
the healthcare process. The need to raise awareness of carers was considered:
“That’s [train the trainers pack] going to be rolled out in-for care companies to train
their staff. So they’ve got a better kind of overview...not just on health information but
on the health needs of people with learning disabilities. It covers all sorts of different
things and different specialities that are involved, like speech and language and physio
and psychology, things like that.” (LDS Participant)
“Yesterday I had an experience at the dental clinic where the hygienist was planning to
go out now and attend most of the care companies to teach the actual carers the
appropriate way for dental and oral hygiene. Because they’re finding a lot of the carers
are bringing people along to appointments and their maybe, their knowledge
themselves is maybe not up-to-date. So they’re going to go out to providers now, to
teach the providers the appropriate way to care for oral hygiene.” (LDS Participant)
The importance of integrated working across the service was also recognised:
“we’ve been in the job a long, long time, but we would perhaps choose to support a
client to their practice nurse or to the diabetic nurse or to the GP to facilitate that
communication, to make it more effective.” (LDS Participant)
While recognising the many benefits that can be gained from accessible information
provision, staff also discussed the challenges they perceived to be associated with
this process. Many challenges were practical in nature and reflected constraints
imposed by the existing resources, available technology and time.
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“Not often enough [how often they use easy-read] cos we don’t have time to produce it.
Because it takes time. So many times I think it might have been useful to, but that
planning time is not available....when you sit in front of one of our computers and try
to do something it takes three quarters of an hour...” (CAMHS Participant)
The importance of institutional commitment to providing accessible information was
also noted. For example:
“I went to a thing about, oh, years ago! And I went with like a focus group to make up
pamphlets about a patient coming in to *Learning disability service*. ….And it lasted
about three weeks and then it all fell away! And then the staff were asked, was it
about two years ago? Does anybody want to go to a focus group like that to make
another leaflet? And I said, ‘No me. I’ve already went to one before’ and I says
‘nothing happened to it’. So nobody’s going to put their name forward to go because it
will never get to the end of it and get it finished.” (LDS Participant)
6.5 Theme 5: The role of carers
Staff discussed the important contribution made by carers and the expectations they
had concerning the carer’s role. It was recognised that there was variability in the
extent of carers’ knowledge of those they support, their influence, and and nature
and degree of support provided. However, there was a general consensus regarding
their being an important source of information and support for staff.
“A lot of patients will tell you what they think you want to hear. They will nod and go
along with, ‘yes that’s correct’ and em, it’s not until you’ve maybe got a carer in the
room at the time, you may have all sorts of, you know, faces at the back to say that’s
not what they do, or that’s not what it’s like. So it is, it [carers] is a valuable source of
information.” (Primary Care Participant)
“I think it’s vital [the role carers in conveying health information to staff]. You’ve got to
have that communication. If you’re going to support a patient you need as much as
you can get.“ (LDS Participant)
Good relationships with carers were valued by staff, and sensitivity was often
practiced to help maintain these:
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“I think as a family it’s their lifestyle that’s harder to change, the family’s lifestyle.
Rather than a paid carer, because as you say, you’ve got more influence of a paid carer
cos they’re paid to provide a service. So you can say well the service needs to change
to meet the needs of the clients. But it’s harder to change the family’s way of being, in
terms of healthy eating or exercise or what was on there so.” (LDS Participant)
“I think when you’re sitting with a family, you certainly choose your words. You
wouldn’t dare go into a house and start telling what you should and shouldn’t be
doing. Well I would anyway, I would tread more carefully maybe, than I would with a
staff team cos they’re not emotionally involved. I would think anyway.” (LDS
Participant)
The nature of the carer (paid or unpaid) also influenced staff practices concerning the
use of accessible information resources. For example:
“I think you can be more direct with staff teams once eh, 'this, this is how this’ll impact
on the person’s health'. With families, well you go a bit slower and just, plant a seed.”
(LDS Participant)
“I suppose you gauge it at you know, a parent might feel, ‘don’t you tell me what to do.
I’ll read that in my own time when you go’ or whatever. I mean some parents are
different but eh, I wouldn’t, I don’t know if I’d sit with a parent and go through a leaflet.
I’d maybe leave it with them and, you read that when I go, or whatever....I think when
you’re dealing with families, you don’t know really what goes on in that family. You
know, you see a snapshot and you might be sitting making this mother go through this
leaflet but there might be a lot of bigger issues you know? And you’re sitting going on
about, tooth brushing say or whatever, and they’ve just been verbally or physically
abused that morning. You just have to take it as it comes.” (LDS Participant)
The relationships that staff were able to establish with carers were key to realising the
clear expectations staff had about the role of carers in supporting and reinforcing
health-related messages and associated lifestyle changes. For example:
“I think maybe it’s expectations, you sometimes expect paid carers to perhaps play a
more significant role if you like, if you’re leaving information you’re more hopeful that
paid carers would have more time perhaps and more experience of working with that
person and be able to, kind of do some preparation with them.“ (LDS Participant)
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“Yeah I think the thing with the learning disability if they’ve got a carer one would
maybe give the information leaflet and hope that the carer would go through things
with them when they went home. Rather than just putting them in a drawer or
something like that, so you would expect or you would say to the carer, ‘look can you
go through that leaflet? I’ve gone through it but you know it may be takes a bit-‘, cos
you know we’ve only got half an hour to do everything we’ve got to do and can’t do it
all. Well, maybe forty minutes or whatever but, so you would expect that the carer
would then go through it with the patient or the client when they got home.” (Primary
Care Participant)
However, staff expectations differed depending on the nature of the care package
being provided. For example:
“And some carers as well come in for, likes you’re saying the two visits a day, that are
really not anything to do with their health. It’s just you know, they’re there to make
their meal, maybe personal care, but they wouldn’t support them to health
appointments or anything like that. That would be down to either family or to us.
Where you’ve got others who are on like a twenty-four hour care package, others have
got a large package of care and they would support them. So there is a kinda difference
there.” (LDS Participant)
The influence that carers own lifestyles and expectation can have on the people they
support was also recognised:
“Sometimes lifestyles can be, again going back to the healthy eating that, you know,
maybe they’ve always just bought convenience food and that’s, you know, they would
never think about starting from scratch and getting-cooking meals from scratch. If
you’re trying to introduce and say the benefits and, you know, they’re maybe not really
open to that.” (LDS Participant)
”..If the person is totally dependent on the carers then they are sort of dependent on
their [carer's] lifestyle. What their used to, their circumstances. Finances comes into it
as well, sometimes where they live, em and it can just be the norm for whatever their
pattern of behaviour is.” (LDS Participant)
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6.6 Theme 6: The wider applicability and future of Accessible
Information
The wider applicability of AI was also considered with respect to the general
population and vulnerable groups (e.g. children, the elderly), it being recognised that
there were potential advantages to this:
“Because if you look at it it’s kinda back to front just now, they send all this information
out to everybody as it is and how much of the population can actually understand it.
So whereas they’ve not got-some people haven’t got the ability to decipher it and break
it down into smaller chunks. If you do it the opposite way, you do it in easy-read. That
gives them what they need to know, but if they know more then the people that have
got these skills can go and access that information for-for their own benefit. Rather
than putting too much into it at the one time, to raise anxiety, scare people off em, and
for things just to be kinda dumped in the bin, their letters, because they’re just too
much for them to deal with. Just reversing it a wee bit might make a difference for-not
just for our clients but for a lot of people.” (LDS Participant)
“You are going to kind of umbrella more people if you’re doing it in a more accessible
format in the first instance rather than doing it, the kind of standard format and then
having to change it.” (CAMHS Participant)
However, despite widespread appreciation of the advantages of easy-read format,
staff also expressed concerns about broadening its implementation, especially the
resource implications:
“I don’t think that’s necessary for everyone. I think there are certain groups of patients
that you would decide that I know what I can give you that you would understand. I
think, number one, that would cost a lot of money to reprint everything that you’ve got
into an easy-read situation. I think that would be prohibitively expensive given the cost
of printing, but I think there are certain groups that it would certainly be best to have
that kind of information. But I wouldn’t have thought, personally, I wouldn’t have think
everybody would need that.“ (Primary Care Participant)
“If they’re sending something me that’s no really childish, I’d be quite happy with that.
But if they’re sending me all these pictures and things like that, naw, I would nae be
happy with that.” (LDS Participant)
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Although the benefits of providing information in an accessible format were
recognised, the difficulties inherent in a system designed around general needs were
acknowledged. For instance:
“I think that, in my head, the usefulness of it would be just em, for us to adapt to client
needs rather than clients having to adapt our [service] needs. So if you’re using
something generalised you’re asking everybody to adjust to what you’re giving. But if
you take a step back and adjust things then I think that’s more client friendly in
general.” (CAMHS Participant)
“I think well maybe some could, but I don’t think you’d get one format that fits all. I
think you need all these different formats because everybody’s that different and
everybody’s needs are so different.” (LDS Participant)
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7 DISCUSSION
The responses of participants within the various strands of the project provide a rich
data source with respect to the stated aims. Reconciling these strands into a single
narrative is best achieved with reference to those original aims:
1
To identify the nature and range of accessible information currently provided.
2
To explore how Clients, Carers and Staff make use of accessible information?
3
To find out what Clients, Carers and Staff perceive as the important aspects of
accessible information.
4
To find out whether existing accessible information meets the needs of Clients,
Carers and Staff.
5
To explore how Staff, Clients and Carers can be supported in the production and
use of accessible information
7.1 The nature and range of accessible information currently provided
Although the information formats used by participants tended to be from a limited
range, the topics that resources addressed showed considerable variety. Responses
within the questionnaire clearly indicated that easy-read and internet based
resources were the most commonly used formats by clinicians, followed by DVD.
The differences evident between the responses of LDS staff, and those from other
parts of the mental health directorate were of note, with LDS staff making more use
of easy-read and DVD resources, while others made more use of internet and audio
ones. This is most likely a reflection of the accustomed practice of staff and the
ability of their two client groups, in as much as the implementation of self directed
resources was something that staff from the other mental health services (OMH)
group made explicit reference to.
The responses of one client interviewee clearly indicated that audio materials are
being used by people with a learning disability, however it may be the case that
learning disability services have scope to enhance their use of newer technologies.
That being said, both carers and clinicians clearly highlighted the possible
disadvantages of accessing information on the internet, such as inaccuracy,
information overload, and the potential to raise anxieties.
Alongside the discussion of information resources themselves, the process of making
these accessible was also explored with participants. In this respect, it is of note that
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carers identified verbal communication, mostly in the context of consultations with
health professionals, as a form of accessible information. Both positive and negative
aspects of this process were discussed. Positive aspects were evidenced in those
scenarios where clinicians were seen to be engaging with the individual and not
solely the carer; to be adapting their language and practice to accommodate the
needs of the individual, and to be informed about the needs of the individual, and
people with a learning disability in general. Negative aspects often reflected the
absence of these behaviours, and at times reflected a failure to consider the
communication needs of the individual, or to even afford them a basic level of
respect.
In some ways, recognising the experience of the system of service delivery, and the
practice and culture of staff within this as another type of accessible information, is a
natural extension to the communication triangle described by Mander (2013) in
relation to the use of accessible information resources. The importance of verbal
communication as a key means of giving and receiving information was evident in
the responses of clients, carers, and staff. The experience of some carers clearly
evidences how this process can be transformed from an accessible means of sharing
information, to one which appears to evidence the worst aspects of traditional,
patriarchal clinician/patient relationships. Therefore attention must be given to the
two main aspects of accessibility: 1) the process aspect which entails that staff have
the skills to provide, and are working within a culture which promotes, information
accessibility; and (2) the production aspect of the accessible resource itself.
Questionnaire respondents were able to identify a variety of gaps in the range of
accessible information resources (in their experience), as well as resources which left
room for improvement in terms of their accessibility. Given the previously described
findings of Protheroe (2015) and others, it is again, unsurprising that many were able
to identify resources which did not demonstrate ‘accessibility’. What is of note is that
one of those resources identified with a reasonable degree of consistency was one
intended to be an easy-read resource (Health Rights Information Scotland Leaflet on
Patient Confidentiality). To understand why this might be so, it is of value to
consider the aspects of the ‘standard’ version of this document which some carers
responded positively to, including its use of colour and headings to identify subtopics. Arguably, this evidences the importance of attending not only to ‘easy-read
principles’ when designing an accessible document, but also basic principles of
designing any attractive, engaging document. The two are not, and should not, be
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considered as incompatible, a fact which is perhaps best exemplified by the
overwhelmingly positive response to the Beating the Blues resource.
7.2 How clients, carers and staff use accessible information
Staff responses to the questionnaire, and within focus group discussions,
demonstrated that accessible information was in use across the various services
represented, all-be-it to varying degrees. Significant differences were found between
the frequency of use described by questionnaire respondents from the Learning
Disability Service and the others, with Primary Care respondents using it the least. In
many respects, this is an unsurprising finding, and in line with earlier observations
regarding accessible information (specifically easy-read resources) traditionally being
seen as an issue in relation to people with a learning disability. Such findings are
also consistent with those of Mander (2015) who also found differences in the
understanding of accessible information across different staff groupings. The
discrepancy in use observed between qualified Nursing staff and Nursing Assistants
within the Learning Disability Service is not unexpected. However, it does bring into
focus past review work undertaken within the service (Begbie et al., 2012) which
highlighted the scope for developing the role of Nursing Assistants further, in
recognition of their skills and their opportunity to develop strong relationships with
the individuals they support, informed by a robust and practical understanding of
their needs.
Such an understanding was highlighted as an essential component of pitching
information at the right level for an individual, by carers, staff and clients themselves.
This again reflects the process element of making information accessible. Both staff
and carers emphasised the importance of achieving this understanding and
establishing a baseline of each individual’s information needs, following which
appropriate resources could be identified, then adapted as necessary. Discussion of
the information resource with the individual could then take place, with
understanding hopefully being consolidated through repetition. Carers were
identified by themselves and staff as playing a key role in relation to this process of
repetition and reinforcement.
In line with the findings of Mander (2013), staff and carers described using accessible
information to provide a framework for discussion with the individual. For carers,
easy read materials brought clear dividends in terms of clearly delineating the salient
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points of potentially complex topics. These benefits applied to both individuals who
were being supported, and carers (and staff) themselves, with one carer describing
their benefitting from an accessible discussion of issues regarding the referendum
(and staff being encouraged to access the easy read version of complex reports for
their own benefit).
The role of carers, however, went beyond that of simply passing on information.
They were also acting as:

Information editors: they would adapt information in order to highlight the
most salient aspects to the individual, and reduce the potential for an excess
of information to create anxiety and/or confusion;

Information filters: in terms of what information they felt was relevant to an
individual;

Information conduits: in terms of their role in sharing information with NHS
and social care staff.
Such findings highlight a fundamental aspect of information accessibility: that no
matter how well designed the resource itself, or how skilled and well informed the
communication partner, if the information isn’t made available to the individual
and/or the information is not understood by the individual then it remains
inaccessible.
7.3 What clients, carers and staff perceive as the important aspects of
accessible information
As outlined within the introduction, there is a proliferation of guidelines detailing
what various organisations consider to be characteristics of good easy-read
information. The various characteristics highlighted within them were generally
reflected in the responses of participants, however, rather than talking about
formatting issues such as sentence length and spacing, this was frequently couched
in terms of functionality, with notions of clarity, brevity, and pertinence occurring
across the interviews, focus groups, and questionnaires.
This pragmatic perspective, in terms of the usefulness of easy-read materials, was
also reflected in responses to the use of images within accessible materials. Some
visual elements positively highlighted by clients included photos of staff and
professions within materials from the Learning Disability Service. The use of calendar
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and clock images within those same materials was also appreciated by some. While
the easy-read confidentiality leaflet was preferred by some clients, others would have
liked the images within it to have been removed. Carers also reflected on the
variable responses of those they support to images within documents. Carers
themselves expressed no clear preference for symbols, or drawings, or photographs.
Instead images, in any format, often served as a means to aid the conversation about
the content of a resource. This again demonstrates the functional use of accessible
resources, a finding in keeping with a process perspective on easy read resources
and their use.
Indeed, both clinicians and carers highlighted issues of possible misinterpretation in
relation to both symbols (within the CLDT leaflet) and photographs (with ‘Beating the
Blues’), which were also demonstrated by the participating clients. Clinicians also
drew attention to the rigid expectations in some clients which could be created by
using photographs. Interestingly, particularly for clients, the richest conversation was
evoked by the one resource which made most use of photographs (‘Beating the
Blues’). Whether this is attributable solely to its use of photographs is debatable:
many other aspects of this resource were positively highlighted by participants,
including its colour, its overall design, and its materials. However, the effectiveness
of the photo-story format used within it seems to have been a key aspect of its
appeal, and of great use in leading participants to reflect on their own situation.
Given the nature of the resource, it is of considerable relevance that the images used
lend themselves to a consideration of personal wellbeing. But again, this does not
constitute an across-the-board argument for the use of photographs. Rather, it
demonstrates that when the appropriate image format is used within a document, it
can substantially contribute to its potential efficacy.
Font size was another aspect that was highlighted by participants, with one client in
particular drawing attention to this, on account of their visual impairment.
Questionnaire respondents also viewed font size as a key element of easy-read
materials, it being ranked among the 3 most important elements (short sentences
and the use of photographs being the other 2). The consistency with which the
various aspects of easy-read materials were ranked by questionnaire respondents
was of note: the only significant difference was in relation to the use of symbols, this
being ranked higher by respondents from the LD sub-group, in comparison to those
from other mental health services, or Primary Care.
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Furthermore, this consistency in ranking occurred despite there being significant
differences across the groups in relation to their knowledge of easy-read features
(Question 7), possibly indicating that all respondents shared a basic core concept of
easy-read material. The potential consequences of the variance which was
demonstrated outside of this core understanding are, perhaps, reflected in the
variable nature of documents labelled as being ‘easy-read’, when they are considered
with reference to existing guidelines. Although, as noted within the introduction,
those guidelines themselves can display a degree of variability. Indeed, the evidence
base behind some of the existing recommendations for easy-read materials is
arguably, not as robust as might be desirable (Walmsley, 2013). Often, it seems to
reflect opinion and experience as opposed to experimental investigation or sound
cognitive theorising, and sometimes lacks explicit consideration of factors that
promote understanding of the information provided (Buell, 2015).
Although the influence on comprehension of the presentation format of easy read
material is only beginning to be considered, it is worth noting that a considerable
empirical and theoretical evidence base of relevance already exists in the area of
education, from which considerable benefits can be derived. Psychologically
informed approaches to learning, especially multimedia learning, explicitly recognise
from the outset the limitations imposed by limited information processing abilities,
and therefore aim to design instructional material that is sensitive to such
constraints. The most influential approach is one that considers cognitive load
(Sweller, 1988). Such an approach examines how different aspects of the information
presented is processed and integrated, such as visual and verbal information, while
learning. Evidence indicates that the complexity of the task draws upon our working
memory resources, which can lead to cognitive overload (Sweller & Chandler, 1994).
Such overload is most likely to occur when the processing demands of the task are
greater than the cognitive resources available. Hence, material should be designed in
a way that minimises the cognitive load that a learner may encounter.
Such an approach offers considerable insight into the design of easy read materials
that, by their very nature, advocate the use of both words and images, potentially
creating a complex task for the user involving both recognition and integration.
Such issues are key given the information processing difficulties experienced by
people with learning disabilities. Indeed, recent research suggests that the inclusion
of symbols may actually increase the cognitive load for individuals with a milder
learning disability, impairing their ability to engage with the content (Strydom & Hall,
2001). This is perhaps one example of a highly significant mismatch between the
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well intentioned application of easy-read approaches, and the prevailing
psychological evidence base in relation to image and text processing that needs to
be addressed in future research (Terras et al., 2015).
As was evident in the responses of carers and focus group participants, apps and the
internet are becoming key sources of information for people (albeit, ones which are
not always trusted). Increasingly, particularly as such resources find their way into
environments where safety is a key concern (e.g., cars), considerable attention is
being paid to the way this information is presented, informed by both an awareness
of cognitive processes, and experimental investigation. As one example of this,
Dobres et al. (2014) investigated the legibility of different fonts, their starting point
being a recognition of the brief ‘glance’ interactions that frequently occur with
devices such as mobile phones. Using computer controlled presentation of stimuli,
they assessed reaction times and accuracy of responses to word and pseudo-words.
While a key objective for the work was demonstrating the relevance of the
methodology to the issues in question, they also report that there were differences in
the legibility of the fonts used (a Humanist font and a non-Humanist font) and in
their polarity (white text on a black background, and vice-versa), such that the
Humanist font (Frutiger) was more legible, as was black text on a white background
compared to white text on a black background.
While the work of Dobres et al. (2014) related to a very different context (user
interfaces for in-car systems), it underlines the way in which subtle aspects of design
can impact on their usability. Arguably, this makes it all the more striking that, in
considering those they would seek support from when preparing an easy-read
resources (Question 21.), questionnaire respondents selected Design professionals
(Graphic Designers) least frequently out of the options available. While this
difference was not statistically significant, it is of interest, and can be linked in some
ways to carers responses to the easy-read and standard confidentiality leaflets.
While the easy-read version was generally preferred for its brevity and clarity, some
highlighted the use of colour and topic headings within the standard version as
being very useful, and eye-catching. Possibly, it could be suggested that this
illustrates the way in which easy-read documents can be developed with reference to
a set of criteria which sacrifices those normally employed. Were these alternative
criteria informed by a robust knowledge of relevant guidelines (however they may
have been developed) then this could be seen as legitimate. However, the
infrequency with which questionnaire respondents had seen any such guidelines
(Question 22.), and the variation across service settings with regard to knowledge of
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easy-read (Question 6.), would suggest that, at least within the context of the services
surveyed, this appears not to be the case.
Arguably, the criteria recommended for use in relation to easy read information
share some aspects with those behind good design for the internet. Cleanliness,
simplicity, and legibility are some of those aspects, and the increasing use of touch
based mobile devices is making their application all the more important. Operating
systems are also evolving to better reflect these principles. The ‘metro style’
introduced with Windows 8 continues to shape Microsoft’s current and forthcoming
mobile and desktop operating systems, and is characterised by simplicity of design, a
focus on content, and a reduction in extraneous elements5. In this way, basic aspects
of user interface design in technology are converging with elements of easy read
design, and potentially fostering a mainstream information environment which is
inherently more accessible to those with cognitive impairments or low literacy.
Adaptation of resources to meet the needs of individuals was identified throughout
the various strands of the project as an essential element of making information
accessible. Knowledge and experience are obviously key to doing this successfully,
and the way in which these have informed the production of guidelines in relation to
accessible information is of immense value, and relevance. It remains, however, an
open question as to how these could be further enriched, were more use made of
the existing and developing evidence base in relation to design, and cognitive
processing.
The work of Dobres et al. cited above illustrates the in-depth consideration of design
elements which is essential to the creation of effective technology based user
interfaces. Use of web based resources and apps was clearly evidenced in the
conversations with participants in this project, and it is extremely likely that their use
will become all the more common. This being the case, it behoves all those
interested in good information design to learn from and collaborate with each other,
regardless of professional alignments, in the interests of reducing the potential for
inequality inherent to the proliferation of technology based information.
5
For more information on the Metro design, see
http://social.technet.microsoft.com/wiki/contents/articles/8128.microsoft-metro-design-language.aspx
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7.4 Does existing accessible information meet the needs of clients,
carers, and staff?
A variety of existing accessible resources were either critiqued as part of the project,
or suggested by participants themselves. Interview participants looked at easy-read
resources in relation to the local CLDTs, confidentiality, wellbeing and appointments.
Questionnaire respondents also made reference to some of these, but also others
more specific to their service setting (e.g. SIGN guidelines on some psychiatric
disorders; the 27 and 30 month assessments used in Health Visiting, and some of
their supporting materials). The views of some questionnaire respondents in relation
to the easy-read ‘Keeping Your Health Information Private’ leaflet are of note, in that
they echo some of the comments from interview participants, regarding the utility of
some of the included illustrations, and it being too wordy.
Questionnaire respondents were also able to suggest topics in relation to which
accessible resources would be of use, including Cholesterol, Mental Health,
Immunisation, and Parenting. It is of note that significant resources already exist in
relation to the latter: the fact that it was identified as an area of need possibly reflects
a comment elsewhere within the questionnaire, regarding a lack of profile overall for
easy-read approaches and materials.
The issues of lack of awareness, and variable quality with regard to existing easy-read
resources, perhaps underline a fundamental problem regarding a broad
consideration of resource efficacy: there is no level baseline against which to judge
such issues. Some services are evidently better informed than others in relation to
such resources, and some resources are evidently more engaging than others. In
some respects, this recognition harks backs to Mander’s (2013) observation
regarding the pursuit of the perfect resource, and the importance of the
communication triangle in achieving accessibility.
Indeed, it was very evident from the responses of clinicians and carers that they work
to make resources meet their needs, and those of the people they support. They
filter, adapt, or supplement resources as necessary to engage with someone, and
they return to the resource and conversation repeatedly, in the interests of
embedding change. In addition, they draw in support from others involved with the
individual to reinforce the intended learning.
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The involvement of a communication partner alongside an accessible resource
perhaps sits more naturally with some services than others. Significantly more staff
from the Learning Disability Service disagreed with the statement ‘Accessible
information should not need to be explained to the service user’, than those from
other mental health services. That being said, the responses of qualified Nursing
staff from the LDS and staff from other mental health services did not differ
significantly, with regard to how they make use of easy-read materials (Question 11.).
Both did, however, differ significantly from the responses of Primary Care
participants. Frequency of use of easy-read resources may play some part in this,
although it should be noted that the responses of the Other Mental Health services
group was similar to Primary Care in this regard (Question 10.).
Given that all groups were consistent in disagreeing with the statement ‘Accessible
information is less effective than information designed for the general public’
(Question 4.), and bearing in mind previously identified issues with regard to the
variability in quality and awareness of accessible information, what may have been a
more relevant way of phrasing this aim was to ask whether existing standard
information meets the needs of clients, carers and staff. The work of Protheroe et al.
(2015), Bennett and Gilchrist (2010) and Rutherford et al. (2006) would appear to
suggest not, as would many of the responses from participants here.
Appointment letters were an obvious area for concern among clinicians and, to a
lesser extent, carers. The way in which an easy-read appointment letter makes
obvious the most pertinent information was contrasted with the process of searching
through a standard letter. The capacity of the former for opening a dialogue and
empowering independent action also contrasted with the anxiety and avoidance
which some staff and carers identified as stemming from the receipt of standard
correspondence.
While the above observations parallel the concerns outlined by the Scottish
Government within Principles of Inclusive Communication (2011), another set of
concerns regarding the broad implementation of easy-read approaches were also
expressed. Both carers and staff reflected on the potential for such materials to be
perceived as childish, or patronising. The need to avoid such a result is often
highlighted within guidelines for producing easy-read materials, particularly with
regard to the use of images (e.g. SCIE, 2005; Mencap, 2002; 3SC, 2014). Arguably,
this is not a different issue from many others which require consideration when
producing easy-read resources: it is just another way in which time needs to be spent
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attending to the detail of a resource, informed by the context of its intended
audience. Where that audience is a broad one, encompassing varying levels of
ability, then this activity perhaps needs to be accompanied by an acceptance that
some may well find the resource to be below their abilities, but that this is an
acceptable outcome when considered alongside the opportunity for inclusion it may
afford previously excluded by more complex materials.
7.5 How staff, clients and carers can be supported in the production and
use of accessible information
Across the questionnaires, interviews, and focus groups, few people indicated having
been involved in the production or evaluation of accessible information. For those
who had been, some of this involvement was in relation to resources designed
around the needs of an individual, other work related to resources intended for more
general use, and some reflected standard practice within an organisation with regard
to e.g., collecting feedback from service users.
As noted earlier, the involvement of the intended audience in the production of
information is increasingly being highlighted as a necessary step (Ward and
Townsley, 2005; Chuang et al., 2010). Despite this, the responses of participants
within this project would appear to indicate that where it occurs, it is the exception,
as opposed to the rule, for all that a large proportion of questionnaire respondents
most frequently identified service users as the group they would seek support from
when preparing information. The fact that significantly more of the LD and OMH
groups responded in this way possibly underlines a variable awareness of the
potential of this involvement, but it may also simply reflect the fact that staff within
those services have more cause and opportunity to create information resources,
than those within primary care. Similarly, the low general awareness of guidelines in
relation to the production of easy read may reflect a lack of awareness of their
availability, or a lack of necessity to look for them.
However, promoting awareness of productive approaches to designing accessible
information only addresses some of the relevant issues. As staff (and carers) noted,
other issues are the time involved in producing such resources; the cost; and the lack
of access to relevant utilities. For some participants, a lack of support for past work
on information production had resulted in their being reluctant to be involved in
such activity in the future.
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Some of the above issues perhaps say something about the place of accessible
information within organisational cultures, as well as the extent to which their
production is appropriately prioritised and supported. This is not to say that there is
an absence of many of the resources and skills needed to realise this. Indeed, as staff
within the focus groups realised, there are already substantial skills in relation to the
adaptation of information into more accessible forms within services. Indeed, as was
also noted, many clinicians undertake this on a daily basis, as part of their
interactions with service users.
Looking beyond the application of accessible information approaches with people
with a learning disability is perhaps one way of further legitimising investment in its
production. There is scope for this investment to be substantial: the Beating the
Blues resource discussed with participants required significant funding to support
both its initial design, and its production in a limited print run. It is of note, however,
that it was clearly the most positively received of the resources discussed: indeed,
one carer commented on the durability of the materials used in its production, and
how this could contribute to it being used on a regular basis.
The need to cut expenditure within public sector services has already had some
impact on the production of information within NHS Ayrshire and Arran, most
notably in the restricted availability of colour printing facilities to staff, and the use of
recycled, non-white paper for correspondence. This context, and the additional cost
potentially associated with the broad implementation of easy-read approaches, was
recognised by participants, and led to some querying the possibility of somehow
identifying those who would benefit from such approaches, thus limiting their
implementation. Whilst the restricted use of easy-read approaches would help to
constrain additional expense, it fails to accommodate the fact that not all those who
would benefit from such approaches will be readily identifiable. As Protheroe et al.
(2015) discussed, there may be a significant proportion of the population who are ill
catered for in terms of standard information provision, and who cannot be singled
out by dint of their association with a particular diagnostic category.
Eichler et al. (2009) undertook a systematic review of the economic costs of low
health literacy (HL), described within their study as comprising 3 levels:
1. Basic/functional HL (i.e., sufficient basic reading and writing skills);
2. Interactive HL (i.e., ability to extract health relevant information and derive
meaning from different forms of communication);
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3.
Critical HL (i.e., more advanced skills to critically analyse health relevant
information and to use it for health decisions).
While acknowledging numerous issues with regard to the available evidence base,
Eichler et al. state that, on the basis of the available literature, the economic costs of
low health literacy may be significant. They also state that the additional cost of low
health literacy, compared to a reference group with ‘normal’ health literacy, is in the
range of $143–7,798 per person per year. Additionally, they note evidence of a slight
increase in use of inpatient and emergency room services among the former group.
While the authors describe the evidence base as heterogeneous, and as not
demonstrating the benefits of improving health literacy, they do describe a need for
reform within health care systems, in order to improve communication and decision
making between service users and providers.
A similar sentiment is expressed within the Quality Ambitions described by the
Scottish Government (2010), which include a need for:
Mutually beneficial partnerships between patients, their families and those delivering
healthcare services which respect individual needs and values and which demonstrate
compassion, continuity, clear communication and shared decision-making. (p7)
The experiences of carers described within this project clearly showed that, while
much good practice exists within the NHS and elsewhere in terms of involving
people with learning disabilities and their carers, scope for improvement definitely
remains. Basic elements of good communication appeared to be missing in some
encounters, while others demonstrated a lack of awareness of and consideration for
individual needs. Such experiences in relation to people with a learning disability are
not uncommon, particularly within general hospitals (Mencap, 2012; Scottish
Government, 2013).
However, other care groups are also highlighted as receiving frequently inadequate
care from the NHS and other services, often linked to issues of communication,
including people with mental illness (Thornicroft, 2013), and people with dementia
(Alzheimer’s Society, 2009). The latter report highlights issues of poor
communication (contributing to issues of social isolation within hospitals) and lack of
involvement in decision making, an issue also described in relation to people with
mental illness (Thornicroft and Tansella, 2014). The latter authors recommend that
methods to improve shared decision making should be developed and evaluated by
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mental health staff and service users. Some of the responses from the OMH group
within the questionnaire would appear to indicate that easy-read materials had been
found to be of use in supporting informed decision making by service users, as well
as self management.
Easy-read materials, and accessible information in general, should not be considered
a panacea, of sorts, for many of the ills currently evidenced within the public sector.
What it may provide is, as was described by participants within this project, a
framework upon which to build an informed and inclusive interaction. The question
of how staff and service users be can supported in its use, can perhaps be answered
with: by demonstrating its relevance to prevailing agendas regarding participatory
care and the co-creation of wellbeing.
Findings from the questionnaire would appear to suggest that the extent to which
this relevance will have to be demonstrated varies not only between services, but
also within them. As a broad characterisation, respondents from within the Mental
Health Directorate tended to be more informed about, and generally supportive of,
accessible information approaches than those from primary care and within the
Mental Health group, those from the Learning Disability Service tended to
demonstrate this to a greater extent. As was found by a number of further analyses,
this was not uniformly the case within the Learning Disability Service: in many
instances, Nursing Assistants appeared to be responding to issues in manner more
similar to those in Primary Care, than those qualified staff within their own service.
In presenting the questionnaire findings, it was stated that analysis of Nursing
Assistant responses was pursued on the basis that the extent of their training and
exposure to aspects of service delivery and design may impact on their awareness of
the research topic. There is an element of conjecture in characterising the observed
differences in this way, however, past work undertaken within the Learning Disability
Service has highlighted the potential for further development of Nursing Assistant
roles, as well as a possible under utilisation of their existing skills and the quality of
the relationships they are able to establish with the individuals they support (Begbie
et al., 2012). In the same way as there may be potential in broadening out a
consideration of easy-read information beyond the learning disability population, so
too there will be relevance in supporting staff at all levels to engage with and
support this agenda.
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7.6 Future provision of accessible information
The overarching view of current accessible information provision that can be derived
from this research, is that it is significantly tied to meeting individual needs;
minimally informed by the involvement of service users themselves; of great value
where it aligns with the skills and motivations of the individual; and is variably
promoted and implemented across the services that were engaged with. A further
element, which has some considerable relevance to a discussion of development
opportunities in relation to accessible information, is that of potential, of both
individuals and accessible information itself.
Carers commented on individuals they supported who lacked confidence in relation
to their reading skills, but who could, with support, engage with easy-read materials.
Indeed, one individual with a learning disability interviewed as part of this work
appeared to demonstrate this, in describing an easy-read resource as too complex
for them, but subsequently reading large portions of it correctly. Participants also
reflected on the way in which easy-read materials could perhaps enable some to be
more independent than they were currently. In both scenarios, there is a sense of
accessible information acting as a catalyst to facilitating increasing independence.
This increased independence is something which, perhaps, represents a stage
beyond the interaction described by Mander (2013) as a communication triangle, a
realisation of the potential which maybe nurtured within that triangle, but which is,
perhaps, not sufficiently described within its outline. Indeed, while the
communication triangle describes an essential element of effective care partnerships,
it is essentially a closed loop with limited connections to outcomes, the broader lives
of individuals, and the socio-cultural context within which they thrive, or diminish.
The complex interactions between individuals, systems, and their surrounding
context, are described in one way by Bronfenbrenner (1977). The ecological systems
theory he outlined (see Figure 7.1 below) presents some challenges with regard to
reconciling it with current service landscapes (particularly the integration of health
services, described as a microsystem, and Social services, which are labelled as an
ecosystem). However, in placing interactions between aspects of the Microsystem
and the individual within their own explicit layer (the Mesosystem), an opportunity is
created to consider the quality and characteristics of interactions as elements of the
developmental environment in their own right. Arguably, it is at this level that
accessible information operates.
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Figure 7.1. Bronfenbrenner’s ecological systems model
Considering accessible information within an ecological context creates scope for
distancing it from an explicitly disability-centric discourse, and making it a facet of
the general interactions between individuals and the various environments they
operate within. The benefits of taking an ecological perspective are evidenced within
all three strands of this project. While questionnaire respondents exhibited some
variation in the number of populations they saw as potentially benefitting from easyread approaches, it is of note that overall, 55% saw it as being relevant for the
general population, with respondents from the combined mental health groups
identifying its relevance for a wider range of populations than those from primary
care. Carers saw some relevance in the broader implementation of easy read
approaches, as did staff. One staff participant within the focus groups described the
current situation as being ‘back to front’:
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…they send all this information out to everybody as it is and how much of the
population can actually understand it?
While support for such an implementation was not unanimous, it is of note that
some of the objections were couched in very individualistic terms: some participants
described themselves as not needing such accommodations, or ascribed notions of
discomfort or offense, to other individuals who could receive easy-read materials but
not strictly require them.
The prevailing focus on individualised notions of self is one topic addressed within a
programme of work undertaken by the Public Health Department of Glasgow
University, called After Now. The constraining nature of such an individualised
perspective, and the suspicion which it can engender towards notions of the
common good (stemming from a concern that this will impinge on the individual’s
own interests) manifests itself in what Hanlon and Carlisle (2013, p6-7) describes as
‘the dark side of individualism’:
The dark side of individualism involves a centering on the self which both flattens and
narrows our lives, making them poorer in meaning, less concerned with others or
society, and abnormally self-absorbed. Our individual lives are flattened because the
only horizons of significance that are available to use are our own.
While it may at first glance seem overly dramatic to be aligning issues of accessible
information with descriptions of profound societal malaise, there is a real issue
underlying which is manifested in the prevailing concern about the significance of
social and health inequalities.
The AfterNow project is also of note in proposing a new model of public health,
based around notions of the True, the Good, and the Beautiful (see Figure 7.2).
While the focus of the latter project is on the application of these principles to a new
conceptualisation of public health, which is better suited to respond to the ailments
of the modern age (physical, psychological, cultural and environmental), they have
relevance to a consideration of accessible information.
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Figure 7.2. An integral model of the Future Public Health (adapted from Hanlon,
2013)
As was evidenced in the response of project participants to Beating the Blues, and in
their more general observations about the visually engaging nature of easy-read
resources, aesthetics are a significant concern in the production of effective,
accessible information. The potential relevance of such information to prevailing
issues regarding inequalities within society evidences the ethical dimension: there is,
arguably, a moral imperative to promote (or at least, further explore) the broader
provision of information which is accessible to those most in need within society.
The scientific element is, perhaps, one which requires greater attention to be paid to
it. As was noted previously, there is a proliferation of guidelines regarding the
production of accessible information, however, as the work of Strydom and Hall
(2001) and others suggests, more notice perhaps needs to be taken of well
established theories of cognition, in addition to the expertise and research deployed
in pursuit of effective user interfaces.
There is, perhaps, also relevance in looking at the language used to describe this
agenda as a whole. While ‘accessible information’ has been used throughout this
project as the overarching rubric subsuming easy information and other approaches,
as has been mentioned above, a resource only becomes accessible once it is made
available. Arguably, there is a further element to this, in that accessibility may also
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imply understanding, and as was evident within the discussions with participants,
resources labelled as being accessible can themselves present barriers to
understanding.
Possibly, a more helpful way of describing this field would refer to the promotion of
inclusive information: information which, by design, has the potential to include a
broad spectrum of readers, of varying abilities. Even this alternative may be less than
satisfactory, and the argument as a whole could be dismissed as a spurious semantic
exercise. However, if the potential of better information design as a means of
addressing inequalities is to be realised, there is perhaps a need for not only
resources, but the agenda as a whole, to evolve.
7.7 Study Limitations
When initially seeking ethical approval for this project, it was commented by the
committee that it focused overly on the experience of staff, and had scope for
attending more to the experience of people with learning disabilities, and their
carers. While the sampling frame implemented within the project was relevant to it
being, in effect, an initial exploration, there is no doubt scope for extending it. For
example, while the experiences of adults and children accessing services other than
the Learning Disability Service has been described second hand within the project by
clinicians involved, there is relevance in exploring the information needs of
individuals accessing those services in the same way as was done here for people
accessing the Learning Disability Service.
In the same way, there is perhaps scope for soliciting the views of staff from a
broader range of services (e.g. addictions, and older people’s), but also for seeking
means of expanding the contribution of primary care professionals, whose input was
invaluable, but considerably more limited than had been hoped for.
7.8 Next steps
Practical and theoretical elements of the project present possible routes for further
development. As noted earlier, there is arguably scope for establishing accessible
information (with specific reference to easy-read) within a more robust ecological
and cognitive theoretical framework. While elements of this were initiated within the
preceding discussion, there obviously remains much scope for development. Our
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findings offer insight into these issues and point the way forward for future research.
In particular, the use of existing psychological research concerning the role of
working memory, prior knowledge and inferential ability, could help to build an
evidence base to maximise the understanding of accessible information (Terras et al.,
2015).
At a practical level, it could be suggested that there is potential in looking at the
impact of changing a small system in line with accessible information principles and
approaches, for example, exploring the general use of an easy-read appointment
letter within one or more GP surgeries. Doing so could perhaps be combined with
the more expansive exploration of service user experiences described above as being
one of the limitations of the existing study.
Awareness of the accessible information agenda is obviously variable. While it
remains one which would benefit from being developed in many ways, the moral
element of its promotion (in relation to inequalities) is a powerful motivator. Greater
effort could be made across services to encourage a deeper understanding of what
makes information accessible, using existing guidelines and evidence as a starting
point for a more critical examination of existing information provision.
7.9 Importance to NHS and possible implementation
Addressing health inequalities is very much a current priority for the NHS, and more
importantly, for the Health and Social Care Partnerships it now works within.
Engaging with local communities in the process of creating relevant means of
addressing those inequalities is an essential aspect of this, and information which has
the potential to include as many as possible from within those communities is key to
this engagement. The communications toolkit published by the Scottish
Government (2015) to support integration describes the importance of tailoring key
message to target groups. The findings of this project highlight the potential of
tailoring those messages to be as inclusive as possible from the outset. The same
hold true with regard to the general information resources provided by services
within (and outwith) the partnerships. Examples of well received resources exist (e.g.
Beating the Blues, and other materials developed by the Learning Disability Service),
and can serve as a source of ideas with regard to the creation of new resources, or
the adaptation of existing ones.
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As a necessary step before (or parallel to) attention being paid to the creation of
more accessible information, feedback from participants within the interviews and
group discussions, and via the questionnaire, would appear to indicate that there is a
need to promote a broad awareness of the importance of accessible information, as
well as the resources available locally to support in its production. Staff’s
understanding of what characterises an easy read resource was variable, and there
may also be relevance in establishing a common standard in relation to those
characteristics (for all that this understanding requires to be further informed by
other areas of knowledge and practice, as described earlier). The ongoing work with
regard to promoting Health Literacy (e.g. the work being undertaken at a national
level by NHS Education Scotland and others) provides a supportive context within
which to have these discussions, and one which could be substantially enriched by
the experiences and resources familiar to Learning Disability Services, and others.
An understanding of accessible information, awareness of its potential, and
promotion of appropriate approaches to the production of information are, of
course, only part of a possible response to the issues outlined within this project.
The importance of receiving information verbally was clear in the responses of both
individuals with a learning disability, carers, and staff, and the way in which accessible
information can be used to structure those conversations was frequently described.
Attending to the process element of accessibility, and the communication strategies
which can assist in this, will be essential to realising the possible benefits of
accessible information, and cementing its place within routine practice. As well as
lending itself to the kind of partnership based interactions described by the Scottish
Government within the Quality Outcomes, it may also provide a vehicle for staff to
reflect on their current practices with regard to information provision.
The process perspective on accessible information also creates an opportunity to
highlight the crucial role played by carers, as was described by staff and carers
themselves. While this aspect of the carer role in relation to people with a learning
disability is a well established one, similar roles are no doubt fulfilled (or have the
potential to be fulfilled) by other groups of carers as well. Recognising this could
constitute a legitimate part of promoting the broader applicability of accessible
information resources.
The following specific actions perhaps offer some practical ways forward for services:
106

Promote awareness of the importance of accessible information as an
approach for addressing health inequalities

Promote a shared understanding of the basic components of accessible
information in general, and easy read information in particular

Encourage reflection on the existing ways in which information is used and
provided, and how the use of accessible resources can positively shape these
interactions

Promote awareness of trustworthy sources of accessible information e.g. the
Easy Info Zone within NHS Inform.

Raise awareness of the resources available within the Health and Social Care
Partnerships and the acute sector, in terms of making resources
inclusive/accessible

Promote the relevance of accessible information for the wider population

Raise awareness of and further support carers in their role as information
authors, editors, and conduits
7.10 Dissemination
To date6, the findings of this project have been disseminated within NHS Ayrshire
and Arran by presentation at the NHS Ayrshire and Arran Mental Health Symposium
(Jarrett, D., McGregor, S. A. and Terras, M. M. (2015) Information is Power: Accessible
Information and its Role in Rebalanced Care Partnerships) and the NHS Ayrshire and
Arran Learning Disability Forum (McGregor, S.A., Jarrett, D. & Terras, M.M (2014).
Clients’, Carers’ and Clinicians’ Experiences of Accessible Information).
Externally the research has been presented at the Scottish Mental Health Research
Network Conference (McGregor, S. A., Terras, M. M. and Jarrett D (2014) The use of
accessible information within healthcare settings; insights and ideas from a learning
disability context), and the British Psychological Society Annual Conference (Terras,
M. M., McGregor, S. A. and Jarrett, D. (2015) What Makes Information Accessible
Within Healthcare Settings: Insights From A Learning Disability Context).
6
July, 2015
107
8 CONCLUSION
The provision of appropriate information and its comprehension, are key
components of quality health care and the promotion of wellbeing. However, the
potential of accessible information will only be fully realised when it is fully
understood. Buell (2015) emphasises the importance of understanding accessible
information, especially easy-read information, and highlights the complexity of the
nature of understanding accessible information as a significant issue in its own right.
In doing so Buell highlights that there are “no easy fix solutions to achieving
understanding of information for people who have learning disabilities” (Buell, 2015,
p88).
Such discussion reminds us to move beyond the level of the resource, its formatting,
and even the process of its use, to reflect upon the importance of understanding:
how people conceive it, recognise it, promote and support it. Despite its relative
neglect in the academic literature, participants within the current project clearly
recognised its importance, and worked in a pragmatic and sensitive manner to
facilitate it in the individual’s they supported. On numerous occasions staff and
carers discussed how information was adapted, and resources generated, to help
ensure understanding. Furthermore, the detailed reflections on how resources were
used to frame discussions again demonstrated how understanding was being
promoted.
It is interesting to note the fundamental nature of this drive for understanding in the
use of easy-read materials, and its explicit and implicit recognition by staff, carers
and clients: participants commented on how information would be ignored if it
could not be understood; how they promoted and checked understanding; and how
clients would ask for help to understand information.
In returning the concept of understanding to the fore of discussions regarding
accessible information, the opportunity is created to open up a broader focus, which
transcends narrower issues of process, and resource format. There is a need to
understand peoples’ behaviour concerning the use of accessible information
resources, their motivations and preferences, as well as factors inherent in the
resource itself that promote understanding, but also to consider how these aspects
interact, with each other and within different ecological contexts to support
understanding, and in so doing make accessible information a reality for all rather
than simply an aspiration for many.
108
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