authors 1 2 1
TRANSCRIPT
Title: Reading comprehension difficulties in people with aphasia: Investigating personal perception
of reading ability, practice and difficulties.
Authors: Janet Webster1, Julie Morris1, Jenny Malone2 and David Howard1
Affiliation:
1 Speech and Language Sciences, Newcastle University, UK
2 Adult Speech and Language Therapy Department, Newcastle Upon Tyne Hospitals NHS Foundation Trust
Short Title: Reading comprehension in aphasia
Corresponding Author: Janet Webster
Contact Details: Speech and Language Sciences, School of Education, Communication and Language
Sciences, King George VI Building, Newcastle University, Newcastle upon Tyne, NE1 7RU.
Telephone: 0191 208 5235 Fax: 0191 208 6518
Email: [email protected]
Abstract Background: Whilst reading difficulties are a common feature of aphasia, there has been limited
consideration of the impact of these difficulties on how people with aphasia experience reading in
their everyday lives. Previous studies, using semi-structured interviews, have highlighted the need to
consider reading from the perspective of the individual due to the complexity of factors influencing
reading and individual variation in practices and preferences. These studies have contributed to our
understanding of the individual’s perspective but have been restricted to people with less severe
aphasia and some expressive ability. We need tools to facilitate understanding the personal
perspective of people across the severity range that are feasible within a clinical setting.
Aims: The aim of this study was to investigate people with aphasia’s perception of their current
reading ability and activities and feelings about reading using a questionnaire. The validity, reliability
and clinical usefulness and acceptability of the questionnaire were considered.
Methods & Procedures: The questionnaire was developed through an iterative process, involving a
review of literature, integration of findings from an interview study, direct consultation with people
with aphasia, pilot testing and review. The questionnaire comprised of four sections: A) Current
reading B) Thoughts and feelings about reading C) Reading activities and D) Reading strategies. 81
participants completed the questionnaire during a study of reading in people with aphasia. Following
completion of data collection, tester feedback was considered and the psychometric properties of
the questionnaire in relation to aspects of validity and reliability were analysed.
Outcomes & Results: Perception of reading ability, feelings about reading and reading activity varied
considerably across participants, with not all individuals reporting difficulties. There was increased
perceived difficulty as the length of text increased. Participants highlighted that they were unhappy
with their speed of reading. The most common strategies used to support reading were re-reading,
slowing down and reducing distractions. The iterative process resulted in a 29 item questionnaire
which had appropriate face validity, construct validity and test re-test reliability and was clinically
appropriate and feasible.
Conclusions: The study provides additional evidence about the individual variability in reading in
people with aphasia, emphasising the importance of considering personal perception alongside
formal assessments of reading comprehension. The questionnaire provides a practical and reliable
measure of a person’s perception of reading post-stroke and has potential as a patient centred tool,
contributing to goal setting and outcome measurement.
Key words: reading, comprehension, aphasia, personal perception, alexia
Introduction Reading difficulties are a common feature of aphasia but there has been limited consideration of the
impact of these difficulties on how people with aphasia experience reading in their everyday lives.
This study explores personal perception of reading in people with aphasia using a questionnaire. The
rationale for, development of, and psychometric properties of the questionnaire are explored
alongside the results from people with aphasia. The work described here was part of wider study of
reading; this wider study included assessment of reading comprehension and reading aloud at single
word, sentence and paragraph level.
Reading Difficulties in People with Aphasia Reading difficulties are a prominent feature post-stroke, with an estimated prevalence of 68% of
people with aphasia (Brookshire, Wilson, Nadeau, Rothi, & Kendall, 2014) when criteria are based on
oral reading. With broader criteria (including reading comprehension and reported impact on
everyday reading), difficulties may be present in all people with aphasia (Webb & Love, 1983). Post-
stroke, people with aphasia report a decline in their reading ability with a range of difficulties:-
difficulties with decoding (oral reading), difficulties with reading comprehension (affecting single
words, sentences and/or connected text) and reduced reading efficiency or speed (Knollman-Porter,
Wallace, Hux, Brown, & Long, 2015; Webster, Samouelle, & Morris, 2018). Post-stroke, there may
also be co-occurring difficulties with vision (e.g. hemianopia, scanning) (Aleligay, Worrall, & Rose,
2008; Hepworth et al., 2016; Rowe et al., 2011), attention and memory (Aleligay et al., 2008; Lee &
Sohlberg, 2013; Mayer & Murray, 2002) which can impact reading. Reading comprehension is an
everyday activity, with difficulties impacting a range of activities, e.g. reading a book, a newspaper,
a recipe, letters etc. and participation in a wide range of social, leisure and work activities (Knollman-
Porter et al., 2015; Parr, 1995). There is also an increasing reliance on technology to perform
traditional literacy tasks , e.g. reading news articles on-line, and people with aphasia may struggle
with technology-based communication due to their reduced ability to understand written messages
(Dietz, Ball, & Griffith, 2011), again impacting social participation. Reading is considered by people
with aphasia as ‘necessary for life’ (Kjellén, Laakso, & Henriksson, 2017, p10). Reading difficulties
have been reported to result in feelings of loss, frustration, disappointment, annoyance (Kjellén et
al., 2017; Webster et al., 2018), with slow and effortful reading. Despite this, individuals are still
motivated to read and want to improve their skills (Kjellén et al., 2017; Webster et al., 2018).
Literacy (reading and writing) enables participation in society and self-efficacy (Kjellén et al., 2017)
and reduced participation in essential and pleasurable activities may result in reduced quality of life
(Parr, 2007).
There is extensive normal variation in reading ability, the importance of reading and reading
preferences. Everyday reading activities cannot be predicted as they vary according to the social
roles that people fulfil, for example, role within family, employment, hobbies and interests (Parr,
1992). In addition, people do not carry out all of the literacy tasks that they are capable of, with
delegation of some tasks to other people (Parr, 1992). Within qualitative interview studies, the same
variation in reading practices and preferences has been identified in people with aphasia (both pre-
and post-stroke). People with aphasia have unique motivations for reading (Kjellén et al., 2017;
Knollman-Porter et al., 2015; Webster et al., 2018), read a unique range and type of materials
(Kjellén et al., 2017; Knollman-Porter et al., 2015; Parr, 1995) and use a unique set of strategies to
aid reading (Kjellén et al., 2017; Lynch, Damico, Abendroth, & Nelson, 2013). Post-stroke, reading
activities may change as a direct consequence of the reading difficulties or due to wider changes in
roles or participation (Parr, 1995, Webster et al., 2018). Individuals may also delegate literacy tasks
(e.g. reading formal letters) to or seek support from other people more frequently than prior to their
stroke (Knollman-Porter et al., 2015; Webster et al., 2018). This underlines the complexity of
assessing an individual’s reading post-stroke and the need to understand reading difficulties from
the perspective of the person with aphasia.
Exploring Perceptions of Reading Previous studies which have considered reading from the perspective of people with aphasia (e.g.
Parr, 1995; Webster et al., 2018) have primarily used semi-structured interviews exploring both pre-
and post-morbid reading. In some studies (e.g. Kjellén et al., 2017; Parr, 1995), reading has been
considered alongside writing to give a comprehensive perspective on literacy. In Lynch et al., (2013),
interviews were accompanied by recording and analysis of oral and silent reading of texts and
observation in a naturalistic setting. Knollman-Porter et al. (2015) asked participants to complete a
written questionnaire which probed materials read, frequency of reading, time spent reading and
strategies which aided reading. This was then reviewed within the context of an interview, with
additional broad questions about post-stroke reading and looking at examples of pre- and post-
aphasia reading materials. The materials were used to promote discussion about reading
behaviours, preferences and experiences and gave the researcher the opportunity to observe
participants reading. In-depth interviews have contributed significantly to our understanding of how
individuals perceive their reading difficulties and the complexity and variety of those difficulties.
However, there are many challenges to carrying out interviews with people with aphasia who often
have co-occurring difficulties with spoken comprehension and production (Luck & Rose, 2007). It is
vital to understand reading from the perspective of people with aphasia across the severity range
and interview studies have often excluded people with more severe language difficulties. Interviews
are also very time consuming and may not be feasible clinically. Within intervention planning, given
the importance of exploring the person’s perspective, we need a clinically acceptable, efficient and
replicable way to consider this and to monitor changes in perception resulting from recovery or
treatment.
Within the literature, there are two specific questionnaires about reading: the questionnaire
(described above) used in the Knollman-Porter et al. (2015) study and the Reading Confidence and
Emotions Questionnaire (RCEQ) described by Cocks and colleagues (Cocks et al., 2010; Cocks,
Pritchard, Cornish, Johnson, & Cruice, 2013). The RCEQ was designed for use with people who have
reading difficulties associated with cognitive impairments resulting from traumatic brain injury
although the authors suggest the questionnaire would also be applicable post-stroke. The RCEQ asks
the person to rate their confidence in reading aloud across a range of different contexts, in different
settings and with different people (comparing pre-morbid and post-morbid reading). People are
then asked to rate emotions they associate with reading e.g. pleasure, frustration, anger, worry etc.
In each case, a ten point rating scale is used. Both questionnaires place high demands on reading
comprehension although people had the option of having assistance from a family member
(Knollman-Porter et al., 2015) or support from the interviewer (Cocks et al., 2010; Cocks et al., 2013).
The structure of the RCEQ is potentially more accessible but it has a heavy focus on reading aloud
and it does not explore specific reading activities.
There are also a number of psychosocial measures that consider the broader impact of aphasia from
the perspective of the individual; examples include the disability questionnaire within the
Comprehensive Aphasia Test (CAT, Swinburn, Porter, & Howard, 2004), the Communication
Outcome after Stroke (COAST) scale (Long, Hesketh, Paszek, Booth, & Bowen, 2008), the Assessment
of Living with Aphasia (ALA, Simmons-Mackie et al., 2014). These measures have generally been
motivated by the International Classification of Disability and Functioning (ICF) framework (World
Health Organisation, 2002) and the need for a client centred and collaborative approach to goal
setting and intervention. The measures are designed to follow aphasia friendly principles (Rose,
Worrall, Hickson, & Hoffmann, 2011), with individuals having the opportunity to respond non-
verbally. The measures also report information about validity and reliability, allowing consideration
of change over time. These tools are valuable in considering the impact of aphasia generally. As with
other aspects of aphasia, it is important to think about reading within the domains of the ICF
framework (i.e. perception of impairment, impact of impairment on activity and participation,
personal factors and potential barriers or facilitators in the environment). However, within the tools
currently available there are a limited number of questions that are relevant to reading and
questions about feelings capture the overall impact of aphasia, rather than specific feelings about
reading.
Summary The nature and impact of reading difficulties is likely to be complex and variable across individual
people with aphasia, with personal preferences and needs interacting with the nature of the
impairment. Assessment of reading comprehension is crucial in characterising reading difficulties.
However, given the interaction of impairment, perception and need, it is vital that this is combined
with an understanding of reading from the perspective of the individual. Questionnaires offer a way
of obtaining information in a consistent and structured way.
Aim
The aim of this study was to investigate people with aphasia’s perception of their current reading
ability and activities and feelings about reading using a questionnaire. This allowed perception to be
considered in a large group of people with aphasia across the severity range. The validity, reliability
and clinical usefulness and acceptability of the questionnaire were considered.
Method
The questionnaire was developed through an iterative process, involving a review of literature,
integration of findings from a previous interview study led by the primary authors, direct
consultation with people with aphasia, pilot testing and review. This process of development is
described in detail as it provides the rationale for the development of the questionnaire, including
the views of people with aphasia and their performance on earlier pilot versions.
Development Phase
The initial version of the questionnaire was developed in line with the following guiding principles:
Reflect current evidence about reading difficulties in people with aphasia
Be aphasia friendly and appropriate to a clinical setting
Be accessible to people with reading difficulties (minimal need for reading)
Be accessible to people with co-occurring auditory comprehension (simple instructions)
Be accessible to people with co-occurring spoken production difficulties (applicable across
the severity continuum with non-verbal responses)
Be informed by the ICF framework (World Health Organisation, 2002), considering reading
from a holistic perspective
In a previous study (described in Webster et al., 2018), ten people with mild to moderate aphasia
had been interviewed about their pre-morbid reading and current (post-morbid) reading. The
interviews, like previous studies (Parr, 1992, 1995), highlighted the complexity of factors influencing
reading and the individual variation in reading ability, the importance and frequency of reading and
reading activities. Post-morbidly, there was a perceived decline in reading ability, with multi-faceted
reading difficulties reported. The themes identified in the interviews were considered alongside the
literature during the design of the questionnaire. The interview study and the literature suggested
that the questionnaire needed to focus on the nature of the reading difficulties (Aleligay et al.,
2008), the impact of difficulties on reading activities (Parr, 1995), how people feel about their
reading (Knollman-Porter et al., 2015; Parr, 1995) and the strategies used to aid reading (Knollman-
Porter et al., 2015; Lynch et al., 2013).
Initial Draft
The initial draft of the questionnaire had three sections. Section A investigated rated ability across
linguistic levels (single word, sentence, paragraph and books) and within particular tasks (e.g.
reading a text message on a phone). There was also a question about speed of reading. Section B
consisted of three sub-sections. An initial set of questions and rating scales asked how people felt
about their reading. Scales used contrastive adjectives, for example, not enjoyable - enjoyable,
effortful – easy, frustrated – not frustrated. A second set of questions asked people to agree or
disagree about particular statements about why their reading had changed. For example, ‘my
reading has changed as I don’t need to read’ (agree/disagree), ‘my reading has changed as I can’t
concentrate’ (agree/disagree). People were then asked to identify from a list of strategies what
helped them to read. Section C looked at a set of reading activities. People were asked to consider
sequentially and select ‘what are you reading well?’, ‘what are you trying to read but finding
difficult?’ and ‘what would you like to read?’ Broad activities e.g. books, instructions, newspapers
were used, with the list compiled from a number of sources (Lapointe & Horner, 1998; Parr, 1992;
Worrall, 1999). A final question asked people how often they were reading.
Consultation with People with Aphasia
This preliminary draft of the questionnaire was reviewed by the Aphasia Research User Group
(ARUG) (see https://www.ncl.ac.uk/ecls/research/speechlanguage/arug/#ourservices). ARUG is a
group whose members all have aphasia and who have attended training to facilitate their
involvement in research consultation. ARUG members reviewed the initial draft with a set of
possible rating scales with varying formats (e.g. numbering, picture support, number of questions
per page). There was interactive discussion with the researchers about i) content and format of each
section ii) format of rating scales and iii) wording and order of individual questions. The following
feedback was provided within the discussion; points to take forward were checked with group
members as the meeting progressed. People in ARUG indicated the sections covered relevant
aspects about reading. They had a preference for 5 point scales, with no numbers and picture
support (faces with different expressions) at extremes. In order to aid comprehension, they
suggested there was a need for minimum change in scales across questions and for questions to
have a similar structure. The participants in ARUG did not like the scales with contrastive adjectives
as they reported they were ‘negative’ and that ‘not’ appearing on different sides of the scale was
confusing (i.e. the contrast that ‘not confident’ may be negative whereas ‘not frustrated’ may be
positive). They also did not like the ‘agree/disagree’ questions and stated these should be phrased in
a similar way to the initial rating scales about reading ability. They reported the sequential nature of
the questions in section C was difficult and that there was a need to have a category for activities
that were not applicable. They also suggested changes to the wording of individual questions and
additional activities that should be included within section C.
Pilot Version Following the consultation, a revised version was produced which took into account the feedback
provided; this was similar to the final version (see below). The revised version of the test was then
piloted with 10 people with aphasia in order to consider acceptability. The group of people with
aphasia consisted of 6 women and 4 men, mean age of 67.7 years (SD =11.88, range 45-83). There
was diversity in terms of years of education, previous occupation, type and severity of aphasia and
reading difficulties. They all had chronic aphasia, with a mean time post-onset of 88.8 months (SD =
36.12, range 27-143 months). Participants were tested in a quiet room in a clinic setting, with the
paper-based questionnaire completed prior to any other assessments. Participants were shown each
question in written form (see example in appendix 1) and the question and prompts for the rating
scales were also read aloud. Testers followed a standard script, with both quantitative ratings and
qualitative comments recorded. Participants were then given the opportunity to comment on the
format. The pilot also offered the opportunity to refine the script used by the testers and to observe
different testers completing the questionnaire to ensure the instructions and prompts could be used
consistently. The pilot participants reported that they could understand the instructions and that
the length of the questionnaire (around 20-30 minutes) was acceptable. Following the pilot, there
were slight changes to the script and the wording of a small number of the follow up questions. This
version was then presented back to ARUG for discussion. ARUG agreed that the changes made were
appropriate and made some minor additional recommendations about wording and overall format
which were then taken forward.
Test Version
These development phases led to a questionnaire with four sections :- i) Section A: Current reading
ii) Section B: Thoughts and feelings about reading iii) Section C: Reading activities and iv) Section D:
Reading strategies. To ensure the questionnaire was accessible to a wide range of people with
aphasia, it was designed to be aphasia friendly, with minimal reliance on reading comprehension and
minimal changes across rating scales. Main questions could be answered non-verbally, avoiding
reliance on verbal output. There were opportunities for people to provide additional qualitative
comments to supplement and explain their responses.
Section A: Current Reading
This section focused on asking the person with aphasia about their current reading ability and
reading difficulties, with themes derived from the interview study (Webster et al., 2018). In this
section, participants were asked to rate current reading abilities using the carrier phrase ‘at the
moment how difficult do you find reading and understanding’ followed by each of the following
items ‘single words | short sentences | paragraphs | a book | a message on a phone | on the
computer‘ and then ‘at the moment, how difficult do you find … reading text out loud |
remembering what you have read | and looking at information on a page’. A five point rating scale
was presented which ranged from impossible to no problem, with visual support at the extremes
(see appendix 1). People were asked to indicate their response on the scale and could select mid
points. If the person indicated the question was not relevant e.g. reading and understanding on the
computer, this was considered not applicable. On the scoring sheet, responses were given
corresponding numbers from impossible (1) to no problem (5), with higher scores consistent with
less reading difficulty. If an individual rated themselves less than three on questions probing
concentration, memory and vision, they were asked whether these difficulties impacted activities
other than reading and whether there had been changes post-stroke.
Section B: Thoughts and Feelings about Reading
This section asked the person with aphasia about how they felt about their reading. The feelings
about reading reflected those reported in the interview study (Webster et al., 2018) and are
consistent with the findings of other qualitative studies (Kjellén et al., 2017; Knollman-Porter et al.,
2015). The section included nine questions, with slight variations in format across questions. The
initial questions used the carrier phrase ‘at the moment, do you find reading’ … followed by
‘enjoyable | easy’. The second set of questions asked ‘do you feel’ …. followed by ‘confident | happy
to try | motivated’. Participants were then asked ‘is reading important to you’ and ‘are you happy
with the speed of your reading?’ A five point rating scale was presented with no and yes at the
extremes and the same visual support as in section A. People were asked to indicate their response
on the scale and could select mid points. A final question asked how frequently the person read
materials like newspapers and books. For this question, the five point scale ranged from never to
everyday. On the scoring sheet, responses were given corresponding numbers from no (never for
frequency question) (1) to yes (everyday for frequency question) (5), with higher scores consistent
with more positive feelings about reading.
Section C: Reading Activities
This section asked the person with aphasia to think about different reading materials and what they
were currently reading. The reading activities probed were derived from activities reported in the
Parr studies (Parr, 1992, 1995), the lists given within Lapointe and Horner (1998) and Worrall (1999)
and those generated by ARUG. People were asked to sort cards representing different reading
materials and place them on a scale with four points: ‘impossible/avoid’, ‘trying to read but difficult’,
‘trying to read and OK’ and ‘no problem’. The cards contained black and white pictures representing
the reading material with accompanying written labels; pictures were drawn specifically for this
study (see examples in appendix 2). Individual activities included reading labels | signs |
menus/shopping lists | adverts/leaflets | instructions | timetables | text messages | reading on a
computer | personal mail | formal letters | newspaper headlines | newspaper articles | magazines
| simpler books | books. People could indicate if the reading activity was not relevant (e.g. that they
never read timetables) and this was coded as not applicable. On the scoring sheet, responses were
given corresponding numbers, impossible/avoid (1), trying but difficult (2), trying and OK (3) and no
problem (4), so higher scores were consistent with a greater range of reading activity and less overall
difficulty.
Section D: Reading Strategies
Section D asked the person to identify strategies they were using to help with their reading. The
person was asked about each strategy in turn, replying ‘yes’ or ‘no’ as to whether that helped them
to read. Strategies probed were: slowing down | focusing on the main words | reading out loud|
having pictures| reducing distractions| tracking the text with finger or ruler| reading a second time|
support from family or friends| technology; these reflected the main strategies identified in the
interview study (Webster et al., 2018) and Lynch et al. (2013). A final question asked about any
other strategies that the individual was using. It was not possible to produce pictures which clearly
represented the strategies and so gestural support was given to aid comprehension of the
written/verbal label if needed. If people indicated they used a strategy, they were asked if this was
something they did prior to the stroke. Section D was not scored. At the end of the questionnaire,
people were asked ‘Is there anything else you want to add about your reading?’
Main Study: Participants 82 people were recruited to the main study. Inclusion criteria included single symptomatic stroke
resulting in aphasia (as confirmed by a speech and language therapist), English as first language, no
reported history of pre-morbid literacy difficulties, no significant visual impairment (reported in case
history or observed during testing) and no significant cognitive impairment e.g. dementia (observed
during cognitive screening). People did not have to report or present with reading difficulties and
varied in the type and severity of their aphasia. There was no upper or lower limit for time post
stroke onset. Participants needed to be able to concentrate for 45- minute assessment sessions.
Details of the 82 participants involved in the main study can be found in table 1; no participants
were excluded following the cognitive screen. Complete questionnaire data was not available for
one participant (a 68 year old man who was 2 years 2 months post-stroke); he was, therefore,
excluded from the analysis of this data.
Insert table 1 about here
Main Study: Method Participants were initially seen for 3-4 sessions in which they completed background language and
other cognitive assessments, a test of reading comprehension (single word, sentence and paragraph)
and reading aloud (single word, sentence and paragraph) and the reading questionnaire. Details
about the format of the reading assessment and the performance of the participants on the reading
comprehension sub-tests can be found in Morris, Webster, Howard, Giles, and Gani (2015). Testing
conditions were as described in the pilot phase.
A sub-group of the participants was then re-tested on the assessment of reading comprehension and
reading aloud and the questionnaire approximately 4 weeks later. 28 participants completed the
questionnaire again during re-testing. Within this group, there were 7 participants who were less
than 6 months post-stroke (2 participants at 2 months, 3 at 3 months, 1 at 5 months and 1 at 6
months post-onset); these were included to see if the questionnaire could also be used reliably with
people in the early stages of recovery.
Results
Perception of Reading Table 2 summarises the profile of the group of people with aphasia across sections A to C of the
questionnaire. Higher scores are indicative of less reading difficulty, more positive feelings about
reading and increased reading activity. To allow consideration of test re-test reliability of the total
score, reading activities that were rated as not applicable were given a score of zero. Most
participants only had one or two activities that they considered not relevant so this did not influence
the overall score significantly. Reflecting the broad inclusion criteria of the study, there was a range
of scores across all three sections. Some participants reported significant difficulties and some
perceived minimal change in their reading.
Insert table 2 about here
Figures 1 to 3 show the distribution of ratings across participants for sections A to C. To allow
comparison across questions, scores at mid points for sections A and B were collapsed (i.e. 1 and 1.5
presented as 1).
Insert figure 1 about here
A range of reported reading difficulties was seen across parameters in section A (see table 2) with
some participants reporting ‘no problem’ (i.e. score of 5) across many parameters. Some individuals
reported that they did not read text messages (around half) or read on the computer (around a
third) and therefore rated these questions as not applicable. Some participants also indicated that
reading aloud was not applicable. Across participants, there was a rated hierarchy of difficulty with
single words and sentences easier than paragraphs and paragraphs easier than books. A large
number of individuals identified difficulties concentrating on reading (concentration) and
remembering what they have read (memory).
Insert figure 2 about here
In section B, the majority of participants highlighted that reading was still important and individuals
were motivated to read and happy to try. Over half of the participants were still reading newspapers
or books each day (frequency question). However, participants were not finding reading as easy as
pre-stroke and were not happy with their speed of reading, often commenting on how slow it was or
how long it took to read. There were mixed feelings about the extent to which reading was
enjoyable and how confident they felt about reading.
Insert figure 3 about here
In section C, focused on reading activities, like section A, there was a range of reported difficulty (see
table 2), with some individuals reporting ‘no problem’ (i.e. score of 4) across the activities. Also like
section A, some individuals identified reading text messages and reading on the computer as not
applicable. There were also some additional reading activities identified as not relevant or applicable
by a small number of individuals:- adverts, instructions, timetables, newspaper articles, magazines,
simple books and books. Across participants, there was a hierarchy of rated difficulty which
appeared to be related to the length of text (signs/labels/newspaper headlines easier than
menus/adverts which in turn were easier than instructions/newspaper articles which were in turn
easier than books). There was, however, also a distinction between personal mail and formal letters
which is likely to reflect familiarity of content or type of language, rather than length.
Figure 4 shows the reading strategies that people identified as helping them to read. Individuals
reported using a range of strategies (average of four, range one to nine) and these had generally
been developed post-stroke. The most common strategies (used by more than half of the
participants) included re-reading, slowing down and reducing distractions. Other frequently used
strategies were support from family and friends, focusing on the main words, having pictures
alongside the text and tracing the text as they read. Less than a quarter of individuals reported using
technology or reading aloud. No participant identified other strategies they were using.
Insert figure 4 about here
Tester Evaluation Following the study, the format of the questionnaire was reviewed by considering both the data and
comments from the testers who used it. This review suggested some modification was needed.
Participants were asked about reading a text message and reading on a computer across two
sections and these activities were often rated as not applicable. Participants’ responses were
consistent across sections. It was, therefore, suggested that these questions should only appear in
section C. The testers also reported issues with two questions. First, the question about the impact
of visual difficulties on reading (phrased as ‘how difficult do you find looking at information on a
page’) was confusing, with more accurate information about the nature and impact of visual
difficulties obtained via case history information. Second, the question about frequency of reading
was reported to be too broad, with the acknowledgement that most people were reading something
each day. These two questions were therefore removed alongside the questions about technology in
section A. The final questionnaire consisted of 29 questions across the three sections and the
psychometric properties of this modified version were considered.
Psychometric Properties The psychometric properties of the questionnaire were considered in relation to certain aspects of
validity and reliability. Validity was considered in terms of face and construct validity. Face validity
refers to whether the questionnaire subjectively measures the aspect of interest. The concepts and
questions within the questionnaire were driven by previous qualitative studies of reading in people
with aphasia. In addition, the people with aphasia in ARUG reported it covered relevant aspects of
reading and had the opportunity to shape questions and include or exclude feelings about reading
and reading activities. In relation to construct validity, there was consideration of whether the
questionnaire measured a single construct and the degree to which it measured perception of
reading. The questionnaire had good internal consistency (Cronbach’s alpha = .932). An exploratory
factor analysis was carried out. All responses had a substantial loading (>.40) suggesting that all
items were relevant and that no question/rating should be excluded. Principal component analysis
using varimax rotation with Kaiser Normalisation resulted in a seven factor solution which accounted
for 72.4% of the variance. The initial factor accounted for 39.6% of the variance, with other factors
varying between 3.8% and 9.1%. The component matrix can be found in appendix 3. In general,
ratings contributed to more than one factor, reflecting the potential overlap and interaction
between perceived reading difficulties, the impact on reading activity and feelings about reading.
There was one factor that related to technology (factor 6) and one factor (factor 4) that primarily
reflected the ratings in section B related to feelings about reading. There were significant positive
correlations between the sections of the questionnaire (Sections A and B, Spearman correlation
rs(79) = 0.543, p=<.001, Sections B and C, Spearman correlation rs(79) = 0.560, p=<.001, Sections A
and C, Spearman correlation rs(79) = 0.780, p=<.001).
Reliability was considered in relation to internal consistency and test re-test reliability; test re-test
reliability is important to ensure the results are representative of performance and if, in future, the
questionnaire is used to monitor change as a consequence of recovery or treatment. As previously
highlighted, the questionnaire had good internal consistency (Cronbach’s alpha = .932). The items
with the lowest correlations with the other items were those related to reading and technology.
Figure 5 shows the relationship between the total scores for sections A to C during the initial
assessment and at re-test for the 28 participants. There was a significant positive correlation
(Spearman correlation, rs(26) = 0.927, p= <0.001) indicating a high degree of test re-test reliability.
Positive, significant correlations were also found for each section (section A, Spearman correlation,
rs(26) = 0.839, p<0.001, section B, Spearman correlation, rs(26)= 0.858, p<0.001 and section C,
Spearman correlation, rs(26) = 0.846, p<0.001). For the seven participants who were early post-onset
(6 months or less), the same significant positive correlation was seen between test and re-test total
scores (Spearman correlation, rs(5) = 0.857, p= 0.014) suggesting that the questionnaire was also
reliable for these participants.
Insert figure 5 about here
In relation to clinical usefulness and acceptability, the questionnaire was an appropriate way of
obtaining information about the person’s perspective on their reading and was feasible within a
clinical setting, taking around 20 minutes to complete. People with varying types and severity of
aphasia were able to complete the measure.
Discussion This study aimed to add to our understanding of people with aphasia’s perspective on their reading
by developing a clinically useful, valid and reliable tool. A questionnaire was developed that could be
used to explore the person with aphasia’s perspective on their current reading ability, feelings about
reading, reading activities and strategies used to support reading; these are aspects relevant to
explore within the ICF. This section will discuss the results and will then evaluate the questionnaire
and consider how it might be used clinically.
Reading difficulties in people with aphasia Within this study, not all individuals with aphasia reported difficulties with reading. This may reflect
the broad inclusion criteria of the study but also implies that (at least from the individual’s
perspective), reading difficulties are not always present in people with aphasia. There was individual
variation in the difficulties people reported understanding single words, sentences, paragraphs and
books, but with increasing perceived difficulty as the length of text increased. As in previous studies,
many participants highlighted that they were unhappy with the speed of their reading and
emphasised the potential role of concentration and memory on reading ability (Knollman-Porter et
al., 2015 & Webster et al., 2018). As in previous studies, the exact nature of these difficulties and
what the person is rating as ‘memory’ is not entirely transparent. Within section C, some activities
were not relevant or applicable for some individuals, emphasising the individual nature of reading
activities that has been highlighted in previous studies (Kjellén et al., 2017; Knollman-Porter et al.,
2015; Parr, 1995). The activities related to the use of technology were frequently rated as not
applicable suggesting that within this group, there were many individuals not using mobile phones
or computers. This could be due to their age, with older adults and retired people using technology
less (Czaja & Lee, 2007; Dutton & Blank, 2011; Dutton, Blank, & Groselj, 2013). It could also reflect
the complexities of using technology and the compounding influence of stroke and aphasia (Menger,
Morris, & Salis, 2016, 2019). For those who were reading on the computer, additional information
would be needed as to what they were reading on the computer and the comparative difficulty of
these tasks e.g. reading email, reading websites. As in other studies (e.g. Lynch et al., 2013; Webster
et al., 2018), there was also variation in the reading strategies used but again only a small number of
individuals reported using technology to support reading. Overall, the results in this large group are
consistent with the findings of the in-depth interview studies carried out with small groups of
individuals (Parr, 1995, Lynch et al., 2013, Knollman-Porter et al., 2015 & Webster et al., 2018). In
contrast to the interview studies, the questionnaire focused only on present reading rather than a
comparison of pre- and post-morbid reading. Although it is necessary to have some understanding of
pre-morbid reading, an understanding of current reading activity and preferences was considered to
be the prerequisite for goal setting and any subsequent monitoring of change.
Evaluation and potential clinical value of questionnaire The questionnaire was an appropriate way of obtaining information about the person’s perspective
of their reading, providing a useful addition to assessments of reading comprehension and reading
aloud. It was feasible to complete with a wide range of people with aphasia; people understood the
questions and were able to respond using the rating scales. The results from the ratings allowed
areas of perceived strength and areas of concern to be identified; some participants were able to
provide additional qualitative comments to elaborate a rating or in response to the follow up
questions.
The questionnaire had good face and construct validity, suggesting it was an appropriate measure of
an individual’s perception of their reading post-stroke. Concurrent validity was not investigated as
there was not another measure of self-perception of reading comprehension with which it could be
compared. The questionnaire had good internal consistency and test re-test reliability allowing it to
be used confidently as an assessment tool. Further investigation is necessary to analyse its sensitivity
to change.
The final version of the questionnaire (sections A to C) will be included in the Comprehensive
Assessment of Reading in Aphasia (CARA, Morris, Webster, Howard & Garraffa, in preparation). If
reading is important for an individual, the results of the questionnaire can be considered alongside
the results of the assessments of reading ability to determine goals that are functional and relevant.
In section A, rated perceptions of comprehension difficulty (words, sentence, paragraphs and books)
can be compared with the results of any formal assessment at these levels; differences in perception
and accuracy on testing may reflect insight/awareness of difficulties and/or the relative importance
of reading. Section A also provides insight into potential contributing factors e.g. concentration,
memory which may warrant consideration when planning additional assessment and/or
intervention. Section B provides insight into how the person feels about their reading difficulty.
Section C highlights potential foci for intervention; reading activities that the person reports they are
‘trying to read but difficult’ could be an appropriate starting point, with further discussion of exact
materials e.g. what newspaper the person reads. As highlighted above, it may also be useful to ask
people to rate each activity in terms of frequency. The questionnaire may also be used to monitor
the outcome of reading intervention. With a sole focus on reading, it may be more sensitive to
changes in reading than measures which consider the overall impact of aphasia. It could also capture
changes in one aspect of reading, for example, an intervention may make minimal change in reading
ability (if concentrating on compensatory strategies) but may impact on feelings about reading
and/or reading activities.
We need to consider perception of ability and preference alongside linguistic ability. Given the
inherent variation in reading ability and preference in the general population, this is particularly vital
when we consider reading. In-depth interview studies have provided us with insights into how
people with aphasia view their reading. The questionnaire provides a practical and reliable measure
of a person’s perception of their reading post-stroke and has potential as a patient centred tool,
contributing to goal setting, and outcome measurement in clinical practice.
Acknowledgments The authors would like to thank the members of ARUG who shaped the direction of the project,
Maria Garraffa and Lois McCluskey for their assistance with data collection, all of the participants for
contributing their time and the individuals and organisations who assisted with recruitment to the
study.
Declaration of Interest The authors declared no conflict of interest. This work was funded by a grant from the Stroke
Association (TSA 2011/03).
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Appendix 1
A.1. At the moment, how difficult do you find…
reading and understanding single words
impossible no problem |______________________________|_____________________________|____________________________|______________________________|
Appendix 2: Examples of Pictures Used in Section C: Reading activities
Formal letters
Newspaper articles
Appendix 3: Results of Factor Analysis Rotated Component Matrixa
Component
1 2 3 4 5 6 7
A1words .458 .652
A2sentences .585 .550
A3paragraphs .392 .627 .317
A4books .631 .434 .373
A7readingaloud .829
A8concentratio
n .837
A9memory .810
B1enjoyment .574 .511
B2effort .651 .303 .373 .335
B3confidence .384 .510 .357 .328
B4anxiety .354 .333 .450
B5motivation .830
B6importance .893
B7speed .571 .431
C1labels .776
C2signs .795
C3menus .776
C4adverts .713
C5instructions .311 .596 .442
C6timetable .483 .528
C7texts .857
C8computer .819
C9mail .753
C10formalletter .384 .421 .523
C11headline .752 .335
C12newspaper .568 .497
C13magazines .446 .604
C14simplebook .724
C15books .332 .664 .324
Extraction Method: Principal Component Analysis.
Rotation Method: Varimax with Kaiser Normalization.a
a. Rotation converged in 7 iterations.
Tables Table 1: Details of people with aphasia involved in the wider study of reading
Age Mean 65.9 years
SD=12.2
Range 33-87 years
Gender 48 male 34 female
Education Mean 11.8 years
SD=2.2
18 educated to degree level
Time post-onset Mean 47.8 months
SD=60.8
Range 2-252 months
Table 2: Total scores for sections A to C of questionnaire
Total Score * Mean
(SD)
Range
Section A: Current reading /50 31.7
(9.0)
13-49
Section B: Thoughts and feelings
about reading /40
29.9
(7.4)
14-40
Section C: Reading activities /60 41.4
(11.7)
15-60
Total Score /150 102.9
(24.9)
45-146.5
Notes: * For the purpose of calculating the total score, activities that were rated as not applicable
were scored as zero.
Legends for Figures
Figure 1: Section A: Current reading - distribution of ratings across participants
Figure 2: Section B: Thoughts and feelings about reading - distribution of ratings across participants
Figure 3: Section C: Reading activities - distribution of ratings across participants
Figure 4: Section D: Reading strategies
Figure 5: Relationship between total scores at initial assessment and re-test
Figures
Figure 1
Figure 2
Figure 3
Figure 4
0 10 20 30 40 50 60 70 80 90 100
Technology
Reading out loud
Tracking the text with finger
Having pictures
Focusing on main words
Support from friends or family
Reducing distractions
Slowing down
Reading a second time
% of Participants Reporting Use
Stra
tegy
Figure 5: