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The quantity of life for people
with chronic aphasia
Chris Code
Universities of Exeter, UK and Sydney, Australia,
and Speakability, London, UK
This study sought to examine the relationships between social activity and
aphasia. Thirty-eight people with chronic aphasia and their closest relative
completed a newly developed Social Network with Aphasia Profile (SNAP) and
relatives completed a Communicative Effectiveness Index (CETI) during the
summer months of the year 2000. The SNAP requires a record to be kept over a
consecutive seven-day period of who the person with aphasia sees (e.g., doctor,
brother), where they see them (e.g., hospital, gym, pub), and why (e.g., to attend
group meeting, shopping). A multiple regression analysis was carried out using
the number of hours people spent out of their home as the independent variable,
and severity of aphasia, age, time since onset and presence of hemiplegia as
dependent variables. This accounted for 30% of the variance and revealed that
severity of aphasia has a particularly negative impact. Age and physical condi-
tion also have a negative impact. However, a rich social network was observed
for some aphasic people. Only one participant was receiving speech–language
therapy of two hours per week. Implications for reducing communication
barriers, raising public awareness and service provision are discussed.
INTRODUCTION
Aphasia following left hemisphere brain damage has well-known conse-
quences for language processing and everyday functional communication
(e.g., Davis, 2000). It also has a range of negative affects on quality of life; the
Correspondence should be sent to Professor Chris Code PhD, School of Psychology,
University of Exeter, Exeter, EX4 4QG, England. Tel: 01363 83432, Fax: 01392 264623,
c.f.s.code@exeter.ac.uk
I am grateful to the aphasic people and their families who provided the information that made
this study possible, and to my colleagues at Speakability who helped to collect data and provided
feedback on the development of the study. This study was completed while I was a Fellow at the
Hanse Institute for Advanced Study, Delmenhorst, Germany.
Ó2003 Psychology Press Ltd
http://www.tandf.co.uk/journals/pp/09602011.html DOI:10.1080/09602010244000255
NEUROPSYCHOLOGICAL REHABILITATION, 2003, 13 (3), 379–390
individual with aphasia is faced with depression, communicative and social
isolation, social and communicative barriers, occupational frustrations and
reduced involvement in everyday living and leisure activities (e.g., Code,
Hemsley, & Herrmann, 1999; Code & Herrmann, in press; Friedland &
McColl, 1987; Herrmann & Wallesch, 1989; Parr, Byng, Gilpin, & Ireland,
1997; Taylor Sarno, 1997). Although an interaction between social isolation
and depression has been found (e.g., Angeleri et al., 1993), we know very little
about how much time aphasic people spend in social and community activities,
where they go, how long they spend there, who they spend time with, and why.
Further, we assume that aphasia should have a significant impact on an
individual’s social networking; qualitative studies using in-depth interviewing
with aphasic stroke survivors (e.g., Parr, 1994; Parr et al., 1997), and
community “service encounter” analysis with traumatically brain-injured
participants with communication disabilities (Togher, Hand, & Code, 1997)
support this. However, there has been little quantitative research.
Research on the relevance of social activity, social networking and social
support to recovery from illnesses such as heart disease, cancer and stroke
provides some clues as to the possible impact of aphasia. Studies of large
samples have shown a weakening of the social network, measured as social
contact, with increasing age and marked gender differences (Due et al., 1999),
negative associations between mental health, subjective well-being and and
social networks (Rennemark & Hagberg, 1999). Associations between
functional outcome and social activity (Angeleri et al., 1993; Seeman, 1996)
and subjective well-being and social support (Wyller, Holmen, Laake, &
Laake, 1998) have been found in stroke survivors.
If we had a better understanding of the social activity of aphasic people, we
would be better able to target socially relevant therapy and raise public and
professional awareness to reduce communication barriers in the community.
Public awareness of aphasia is lower than that for conditions with similar
incidences and prevalences, such as Parkinson’s disease (Elman, Olgar, &
Elman, 2000), with international studies suggesting that between only 1.5%
and 7.6% of randomly interviewed members of the public have even a basic
knowledge of what aphasia is (Code et al., 2001; Simmons Mackie et al., 2002).
Improved understanding of the social and community activity of people with
chronic aphasia could improve the effectiveness of awareness raising and
education by targeting those services and people who come into contact most
with aphasic people.
The aim of this exploratory study was to improve our understanding of
the consequences of aphasia on the social activity of people with aphasia from
a quantitative perspective. It was designed to determine where a sample of
chronically aphasic people spend their time, who they see there, why they see
them and how long they spend with them. The study aimed to examine the
relationships between social and community activity and such factors as
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severity of aphasia, age, gender, months post-onset of stroke, physical
mobility, and socioconomic status.
METHOD
Thirty-eight chronically aphasic people (at least 5 months post-onset) were
drawn from all over England from the membership of Speakability, a national
charity for aphasic people and their families. Each participant and their closest
relative (spouses in most cases) were asked to kept a record of their activities
over a seven-day period between May and July 2000 using the Social Network
of Aphasia Profile (SNAP; Code, 2001). The SNAP asks people to keep a daily
record of who they see, where they see them and why they see them. Diary
methods are widely used to gather information on social activity and individual
perspectives on the quality and significance of activities and interactions
(Bell, L., 1998; Plummer, 1990). However, the success and reliability of the
method depends to a large extent on how long people are asked to keep records
for and the detail and quality of the record that is required. The SNAP attempts
to make it easier to keep a clear record. Participants were asked to choose any
day to begin keeping records, and to keep the record for just the next 7 days. It
consists of seven sheets headed with each of the days of the week, with four
columns entitled Name/Initials/Time (e.g., Mrs J, 8–11am), Place (e.g., church,
shop), Purpose of Contact (e.g., shopping, hairdresser), Relationship (e.g., son,
doctor, nurse). Participants were also asked to provide information on who
completed the SNAP (the aphasic person, their partner, or both), dates of
completion, age, occupation, physical mobility, months post-onset of aphasia,
whether the aphasic person was a car driver, and whether the spouse or carer of
the aphasic person owned a car and drove. The reliability and validity of the
SNAP has not been established.
Partners of the aphasic participants completed the Communicative Effec-
tiveness Index (CETI; Lomas et al., 1978). The CETI is a psychometrically
well-developed, valid, and reliable measure of functional communication that
asks the aphasic person’s closest relative to rate functional communication
status. This means that the aphasic person is not tested directly. The CETI
consists of 16 questions covering such issues as getting attention, communi-
cating without words, communicating emotions, having spontaneous conver-
sations, and describing or discussing something in depth. The partner rates on a
semantic differential between “not at all able” and “as able as before stroke”
and a score can range between 0 and 100% for each question. Information was
requested on who had completed the SNAP. For a SNAP completed by the
aphasic person to be included in the final analysis of the present study, they had
to score above 50% on question 13 of the CETI, Understanding Writing, as an
indication that they had adequate reading comprehension.
QUANTITY OF LIFE IN APHASIA 381
Data from completed SNAPs were subjected to analysis using the search and
coding criteria where, who, why, and how long, which were operationally
identified as necessary factors contributing to an operationalised social activity
index. Data were coded and classified in terms of: places visited (e.g., shops,
community centres, hospitals); reasons for visiting (e.g., to shop, attend
evening classes); who the person with aphasia spent time with (e.g., health care
professional, service provider, family member); and the number of hours spent
in different places and with different people.
Total hours spent out of the home over the 7 days was calculated to
operationally represent an index of social and community activity. This
variable (time spent out of the house engaged in social activity) was used as the
dependent variable in multiple regression analyses and analyses of variance.
The study was concerned particularly to examine which independent variables
(severity of aphasia, age, time since onset of aphasia, socioeconomic status,
gender, and physical mobility) predicted social and community activity.
ANALYSIS AND RESULTS
Table 1 gives details of the demographic profile of the sample. The table shows
that most participants had been aphasic for some time and measured relatively
less severe on the Communicative Effectiveness Index. A wide range of ages
were represented, from 40s to 80s, but the age profile of the sample appears to
be representative of the aphasic population (Davis & Holland, 1981). There
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TABLE 1
Demographic profile of the sample
(N= 38; CETI = Communicative Effectiveness Index)
n Mean SD Range
Gender
male
female
Hemiplegia
Uses wheelchair
Hemiplegic and uses wheelchair
Living alone
Driver
Carer drives/car owner
22
16
14
8
6
5
9
30
Age
Months post-onset
CETI score
Hours out of the house over 7 days
64.6
36.47
52.5
20.08
10.2
29.02
22
11.9
40 – 81
5 –130
21 –100
1.5– 60
were no significant differences between the ages of males and females (t= 0.59;
df = 36; p= .557).
Socioeconomic grouping, based on occupation (OPCS, 1980), was deter-
mined from information provided on occupation (see Figure 1) and showed that
participants were predominantly from socioeconomic group II (n= 20) (e.g.,
“lower” professions including administrators, managers, teachers, healthcare
professionals) and group IIIN (n= 10) (e.g., non-manual, non-professional,
clerical), although other groups were also represented in the sample.
The five continuous variables, Hours Out of the House (Hours Out), Age,
Months Post-Onset (MPO), CETI Score, and Mobility (a combined score for
presence of hemiplegia and whether the aphasic person needed to use a wheel-
chair) were cast into a correlational matrix for preliminary exploration prior to
conducting multiple regression analysis. Hours Out totaled 763 for the sample
(mean = 20.01; SD = 11.99; range = 1.5–60). The variables CETI Score
(r= .492), Age (r= –.386), and Mobility (r= –.320) correlated notably with
Hours Out. Mobility (r= .375) and MPO (r= –.273) correlated highly with
CETI Score.
QUANTITY OF LIFE IN APHASIA 383
0
2
4
6
8
10
12
14
16
18
20
III IIIN IIIM IV V
Figure 1. Respondents (numbers in each group on the x axis) classified into five socioeconomic
groups according to OPCS (1980) criteria. I = Professional (e.g., doctors, lawyers, scientists,
academics, engineers), II = Intermediate (e.g., managers, administrators, school teachers/masters,
nurses, middle-rank civil servants), IIIN = Skilled (or junior) non-manual (e.g., clerical, shop assistant,
secretary), IIIM = Skilled manual (e.g., carpenters, electricians, butchers, cooks, bus drivers),
IV = Partly skilled manual (e.g., agricultural worker, bus conductor, postman), V = Unskilled manual
(e.g., cleaner, labourer, dock worker).
Two multiple regression analyses were conducted on these five variables.
The first used Age, MPO, CETI Score, and Mobility as independent predictor
variables, with Hours Out as the dependent variable. The regression was a
rather poor fit explaining 30% of the variance (r2adj = .302) but overall the
relation was significant, F(4, 33) = 5.0; p= .003. With other variables held
constant, Hours Out was significantly related to CETI Scores ( p= .018) and
Age ( p= .024). MPO and Mobility were not significantly related. A second
multiple regression analysis was conducted using only the significantly related
independent variables CETI Score and Age from the first analysis. The
regression was again a poor fit explaining 30% of the variance (r2adj = .306), but
the relation was more significant overall than in the first regression model,
F(2, 35) = 9.17; p= .0006. With other variables held constant, Hours Out
was significantly related to CETI Scores and Age. Inspection of standard
coefficients (beta weights) showed that CETI Score (Std Coeff. = .446;
t= 3.22; p= .003) was the most significant predictor of Hours Out, compared
to Age (Std Coeff. = –.322; t= –2.33; p= .026).
ANOVAs with post hoc Scheffe tests were computed to examine inter-
actions between Hours Out as the dependent variable and a number of other
categorical variables. The analysis showed that whether or not the aphasic
person was a driver was positively and significantly associated with Hours Out,
F(1, 36) = 9.32; p< .004, and having a hemiplegia negatively affected the
number of Hours Out, F(1, 34) = 3.79; p< .01. Clearly there is a close
relationship between the presence of hemiplegia and driving (there were no
cases in the sample of a respondent who had a hemiplegia and was still driving).
While respondents who belonged to a self-help group spent more time out of
the house, this failed to reach significance, mean difference 6.30 hours; critical
difference 9.00 hours; F(1, 33) = 3.84; p< .058. There were no significant
interactions between Gender and Hours Out, F(1, 36) = 1.45; p= .237.
Figure 2 shows the range of hours spent out of the house by the sample and
suggests that, despite their disabilities and limitations, many people with
chronic aphasia appear to spend notable amounts of time out of the house, and
a few spent more than 40 hours per week out. Figure 3 shows the total hours
spent in the different settings during the week, together with total time the
participants spent with different groups of people in and out of the house. The
sample spent a total of 1,235 hours interacting with a range of people in a range
of settings during the 7-day period, but this varied greatly. Participants spent
most time with friends or neighbours (Fr) and family members (Fam) (other
than their partners) and accessing shops (Shps), restaurants and pubs
(Res/Pubs). Also shown is the amount of time spent in community (Comm)
activities (at the gym or pool, night school classes) and in self-help (SHG) and
social or stroke group (SGrp) meetings. Nearly a quarter of this chronically
aphasic sample (n= 10) spent between half an hour and 7 hours with social
services (SS), either in their own homes or in a Day Centre (with domiciliary
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385
0
2
4
6
8
10
12
010 20 30 40 50 60
Hours Out
Figure 2. Number of hours spent out of the house by 38 chronically aphasic people over a 7-day
period. The horizontal axis shows the number of hours.
0
50
100
150
200
250
300
350
400
450
HCP SS Hosp Clin SLT Fam Fr SHG SGrp Shps Comm Res/Pub
Figure 3. Where aphasic people spend their time, with total hours out of the house for the sample
represented on the x axis (see text for statistics): Key: HCP = health care professional; Fam = family
member, Fr = friend or neighbour, Ser = service, SS = social services, Hosp = hospital,
Clin = community clinic, SHG = self-help group, SGrp = supported group, Shps = shops,
Comm = community activity, Res/Pub = restaurants, cafés, pubs, SLT = speech and language therapy.
nurses and other professionals from social services). The least time in the week
was spent with health care professionals (HCP), in hospitals (Hosp), and
community clinics (Clin). Represented separately, the least time of all was
spent with speech and language therapists (SLT). Thirteen (34%) of the sample
saw a speech and language therapist over the 5 working days, three participants
saw an SLT twice during the week, and just one spent up to 2 hours in speech
and language therapy.
Time both in and out of the house spent in personal, social, and community
activities with family members and friends was calculated and compared to
time spent with health and social services professionals. The places where
and people with whom participants spent their time over the 7 days were split
into “Social” (Fam, Fr, SHG, SGrp, Shps, Comm, Res/Pub) and “Professional”
(HCP, SS, Hosp, Clin, SLT) groups. The sample spent a total of 1005 hours
(81.4%) in social and community activity (mean = 20 hrs) over the 7 days
compared to 230 hours (18.6%) with health care and social services profes-
sionals (mean = 6.7 hrs).
DISCUSSION
Thirty-eight chronically aphasic people spent an average of approximately
20 hours per week out of the house in a variety of social and community engage-
ments over a seven-day period during the summer months of 2000, but this
varied greatly, with a range of 1.5 hours to 60 hours. While a range of variables
had an impact upon the amount of time people with chronic aphasia spend in
social and community activity, multiple regression analysis suggests that
severity of aphasia is the most significant factor. Other related factors
impacting on time spent out in social activity were age and physical and motor
limitations accompanying stroke. However, the multiple regression model
generated from the data acounted for only 30% of the variance.
However, many people with chronic aphasia appear to spend significant
amounts of time with family and friends and visiting a range of community
facilities and retail outlets. The aphasic person’s partner was clearly crucial in
fostering and maintaining social activity, especially if the aphasic person was
not a driver, which clearly has an impact on social mobility.
People with chronic aphasia do not appear to spend a substantial amount of
time with healthcare professionals, in hospitals or in community clinics.
Thirteen participants were in active speech and language therapy, with just one
spending 2 hours in speech and language therapy. This figure supports those
reported by a recent international survey (Katz et al., 2000), confirming that
intensive and continuing therapy, shown to be effective for many chronically
aphasic people (e.g., Mackenzie, 1991; Poeck, Huber, & Wilmes, 1989; Robey,
1998; Wertz, 1995), is not being provided (Katz et al., 2000; Mackenzie et al.,
1993). Nearly a quarter of the sample (n= 10) spent between ½ and 7 hours
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over the 7-day period with the social services, either in their own homes or in a
facility provided by social services. None of the participants was in regular full-
time employment, although a number were involved in unpaid voluntary and
community work.
As noted in the Introduction, public awareness of aphasia is low compared
to other neurological conditions with similar incidence and prevalence rates
(Simmons Mackie et al., 2002), and the extent and quality of services and
support for research is markedly influenced by levels of awareness (Elman et
al., 2000). Targeting public awareness, education and training might profitably
concentrate on those retail outlets and service providers most frequented by
aphasic people. This would help reduce the communication barriers aphasic
people experience. In chronically aphasic people, outside the immediate
family, this is mainly services such as shops, restaurants, and pubs. Although
acutely aphasic people visit hospitals and community health centres and come
into contact with healthcare professionals more often, contact for more chroni-
cally aphasic people is higher with social services and day centre staff, and
these groups could also be profitably targeted with awareness raising and
education programmes. Therapy for chronically aphasic people is sparse (Katz
et al., 2000), and important benefits could be observed for socially oriented
approaches that focus on social interactions in shops, restaurants and other
commercial premises. Increasing mobility and functioning in the home follow-
ing brain damage is an important goal of rehabilitation, and accounts for a
significant amount of the rehabilitation budget. But results of this study indicate
that communicative disability appears to have a more significant effect on the
social networking of stroke survivors. The communicative barriers that aphasic
people experience in the community (Parr et al., 1997) were not examined in this
study, either through direct obervation or through the perceptions of the partici-
pants, but the finding that severity of aphasia is a significant predictor of the
time a person with aphasia will spend out of the house, suggests a link and an
important area for future research. This study confirms the findings of others,
that it is a rare aphasic person who receives significant speech and language
therapy past the acute stage. The profile of social and community networking
for people with acute aphasia would probably be very different, with more time
spent particularly in healthcare facilities with healthcare professionals.
The present study does not tell us how the social activity of aphasic people
compares to non-aphasic stroke survivors or healthy people of a similar age
and socioeconomic mix, but it does support the findings of studies cited in the
Introduction that age and physical mobility are significantly associated with
the amount of time spent out of the house. However, in this study, gender was
not significantly associated with social activity. A number of factors limit the
generalisability of the results of this study. It examined a relatively small
sample representing a predominantly “higher” socioeconomic group and used
mainly self-report methods to collect the data. The reliability and validity of the
QUANTITY OF LIFE IN APHASIA 387
SNAP has not been examined, and no more objective measure was made of
social activity.
While there is a clear relationship between aphasia severity and time
spent out of the house engaged in social activity, results do not tell us how
respondents perceive the quality of the time, or indeed, if they enjoy spending
time with others. A basic assumption of the study is that time spent out of the
house engaged in social and community activities contributes to functional
outcome, subjective well-being and social support, as noted in the Introduction
(Angeleri et al., 1993; Rennemark & Hagberg, 1999; Wyller, Holmen et al.,
1998). However, research clearly shows that people differ widely in the amount
of social activity in their lives, and how they see it contributing to the quality of
their lives (Putnam, 2000), and there is no necessary relationship between the
amount of social activity an individual is engaged in and their subjective
experience of social support (Tracy & Abell, 1994). Some spend large amounts
of time in formal club, church and other community activities, while others
prefer the informal company of a few close friends and family in pubs and
restaurants (Putnam, 2000). Such factors would suggest people from the former
group (what Putnam calls machers) might be expected to be harder hit by
aphasia than the latter group (schmoozers). Future studies could compare the
effects of aphasia on the sense of psychosocial well-being in people who
differed in their social activity premorbidly.
Research could also compare social activity in acute and chronic stages and
make comparisons with non-aphasic stroke survivors and healthy controls. In
this way the impact of the presence of aphasia on social networks and
networking could be more directly assessed. Finally, SNAPs were completed
during the summer months, and sampling at a different season of the year might
produce a different profile of activity.
The main finding of the present study suggests that the severity of com-
municative disability in people with chronic aphasia is the main predictor of
social and community activity and confirms the importance of communicative
skills in the social reintegration of stroke survivors. It provides support for
an extension of the amount of therapy typically offered to chronically aphasic
people. It also confirms the increased utilisation of psychosocially relevant
approaches to speech and language therapy in rehabilitation and reablement.
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