Research

Effect of carer education on

functional abilities of patients
with stroke
Witness Mudzi, Aimee Stewart, Eustasius Musenge
Background/Aim: Stroke is a well-documented public health problem in low, middle, and high-income
countries. Post stroke, patients are discharged home quite early and usually need help with activities of
daily living. This help is usually provided by informal carers. The purpose of this study was to establish
the effect of carer education on functional abilities of patients with stroke in a low resource setting
where access to rehabilitation post discharge was limited.
Methods: A randomised controlled trial consisting of two groups (control and experimental) each
with 100 patients and their carers was used. The carers in the control group received individualised
training as was needed to help look after the person with stroke. The patients functional abilities were
measured using the Barthel Index and the Rivermead Mobility Index. Measurements were taken at
discharge, 3, 6 and 12 months post discharge from hospital.
Results: Patients were discharged home with low functional abilities and though they improved
over time, they did not do so to satisfactory levels. Carer education alone did not result in significant
improvements in patients functional abilities.
Implications and conclusion: There is a need to devise new ways of providing rehabilitation to
patients post discharge from hospital e.g. strengthen domiciliary visits. Carers require more support to
enable them to positively influence patient outcomes post stroke.
Key words: n stroke n carer education n functional outcome n mobility
Witness Mudzi is Senior
lecturer, Department
of Physiotherapy,
Faculty of Health
Sciences, University
of the Witwatersrand,
Johannesburg, South
Africa;
Aimee Stewart is
Associate Professor,
Department of
Physiotherapy,
Faculty of Health
Sciences, University
of the Witwatersrand,
Johannesburg, South
Africa and;
Eustasius Musenge
is Biostatician and
Lecturer; Biostatistics
and Epidemiology
Division, School
of Public Health;
Faculty of Health
Sciences, University
of the Witwatersrand,
Johannesburg, South
Africa
Correspondence to:
Dr Witness Mudzi
E-mail: witness.mudzi@
wits.ac.za

380

Functional ability.indd 380

Submitted 13 February 2012, sent back for revisions 4 April 2012; accepted for publication following double-blind peer
review 9 May 2012

troke is a well-documented public

health problem in low, middle, and
high-income countries and it is among
the top ten leading causes of disability
worldwide (Murray and Lopez, 1997; Lopez
et al, 2006). Other than the devastating effects
of human immunodeficiency virus (HIV) and
acquired immunodeficiency syndrome (AIDS),
neurological disability (stroke included)
has been singled out as the most important
healthcare challenge of the next few decades
(Pomeroy and Tallis, 2002; Connor et al, 2004).
The prevalence of stroke survivors needing
help with activities of daily living (ADLs) in
South Africa following a stroke is almost the
same as in high-income countries (Connor et al,
2004). However, the consequences of stroke are
felt hardest in low-income and middle-income
countries because they are the least able to deal
with a health related setback to development
(Abegunde et al, 2007).
Post stroke, survival is the most important
outcome. It is however well documented that
stroke results in high mortality and morbidity.

The mortality and morbidity rates vary from

continent to continent, from region to region
and from country to country (Wolfe et al 2000;
Ali et al 2008). Disability is very common in
patients with stroke (Stephens et al, 2005) and
is responsible for the loss of 38.5% of disability adjusted life years (DALYs) in males and
43.0% in females in South Africa (Norman et
al, 2007). The prevalence of stroke survivors
in rural South Africa is 243 per 100 000 and of
these, 66% needed help with at least one ADL
(Connor et al, 2004). This study did not include
the whole of South Africa but illustrates prevalence levels in one province of South Africa
(Limpopo). It does however give insight into
the magnitude of the problem among the black
population in South Africa.
The prevalence of disabling stroke in subSaharan Africa seems to be the same as that
for high-income countries (Connor et al, 2004;
2007). Thorogood et al (2007) in their conclusion to a cross-sectional study of vascular
risk factors in a rural South African population
agreed with the popularly held view that sub-

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Saharan Africa is following the predicted path

towards an epidemic of vascular disease.
The disability that patients have following
stroke means that they will need help from carers and the help is mostly provided by informal
carers (Dewey et al, 2002). The carer is usually
either a close relative or a spouse and is affected
from the onset by the patients illness. Both
formal and informal carers play an important
role in the support of disabled stroke survivors
at home (Wilkinson et al, 1997). Carer education can improve physcho-social outcomes in
patients post stroke (Kalra et al, 2004). There
are many studies that focus on the effect of
carer training on carer wellbeing but there is a
dearth of literature on the effect of carer training on patient functional outcomes. In poorly
resourced settings, early discharge with home
based rehabilitation continued by the carer is an
attractive option.
With this in mind, the aim of this paper was
to establish the functional abilities of patients
with stroke up to 12 months post stroke. The
specific objectives were to establish the effect of
carer education on both mobility and the ability
to carry out ADL of patients with stroke.

Methodology
A longitudinal randomised controlled trial with
concealed allocation was used for this study.
The study comprised of two groups, a control
and experimental group each with 100 patients
with first time ischaemic stroke and their carers.
Stroke survivors from Chris Hani Baragwanath
Academic Hospital (CHBH) participated in the
study. The hospital caters mainly for the surrounding largely black population of Soweto,
in Johannesburg, South Africa. The allocation
into groups and training of the informal carers
was done with blinding of the researcher. The
second training of carers, which was provided
at the three months follow up depending on
the needs of the carer, was done with blinding
of the researcher. The research assistants were
trained by the researcher on the protocols to be
covered during data collection, that is recruitment of the patients and carers, and training
of the carers. The research assistants were a
qualified physiotherapist and an occupational
therapist.
From a statistical calculation, a sample of 200
patients with stroke and carers (100 per group)
had 80% power to detect a difference in means
of 1.0 assuming that the common standard
deviation was 2.5 using a two-group t-test with
a 0.05 two-sided significance level using the

Barthel Index (BI) as the main outcome measure. However, for the Rivermead Mobility Index
(RMI) this sample size yielded power in excess
of 90%.
To attain the required sample size for the
study, all consecutive patients with first time
ischaemic stroke and their informal carers fitting the inclusion criteria were approached by
either the researcher or the research assistant
for their permission and initial screening for
inclusion into the study until the sample size
was reached. For inclusion into the study, both
the patient and the carer needed to agree to
participate in the study and ethical clearance
was applied for and granted by the University
of the Witwatersrand Human Research Ethics
Committee.
The BI and the RMI were administered to
the patients before discharge. In the event of
the patient having speech problems and not
being able to provide some of the information required for the data collection process,
the carer was asked to provide the information
(Sneeuw et al, 1997).
All the patients and informal carers in the
control and experimental groups received the
standard existing rehabilitation stroke care as
was currently being undertaken at CHBH at
the time of the study. In addition to the standard and existing rehabilitation stroke care, all
the carers in the experimental group received
individualised hands-on training in lifting
and handling techniques, back care, facilitation
of mobility and transfers, continence, assistance with ADLs, and communication. Included
were information on stroke related problems
and their prevention, management/prevention
of pressure sores, continence, positioning, gait
facilitation and sexuality as was indicated by
the condition of the patient they would be looking after post discharge.
This training was given as a 45-minute to
an hour training session just before discharge
home of the patient. The training was specific to
the individual patient needs for which the carer
would be responsible. It involved a practical
component where the carers were expected to
demonstrate the taught exercises. Subsequent
carer training was given at the three months follow up depending on the need of the carer and
the patient. Follow up assessments were done
at three, six and 12 months post discharge. Data
collection was done from 2006 to 2010.
Descriptive statistics were used to analyse
the data for the demographic information and
functional level of patients. The means and
standard deviations of the various data catego-

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Research

Table 1. The frequency distribution of the functional levels of the patients

Time period of
measurement

Total Barthel
Index Score

Control
Experimental
Group n(%) Group n(%)

Total
n(%)

3 Months 11 100(100) 99(99) 199(99.5)

12 0(0) 1(1) 1(0.5)
6 Months 11 61(95.3) 67(89.3) 128(92.1)
12 3(4.7) 8(10.7) 11(7.9)
12 Months 11 45(84.9) 48(72.7) 93(78.2)
12 8(15.1) 18(27.3) 26(21.8)
Patients who scored 12 and above ( 60%) on the BI were considered to be functional while 
those who scored less than 12 (< 60%) were considered to be dependent.

Table 2. The two-sample t-test statistical results of the BI mean difference

in change between the two groups.
Period

Mean
Mean
Mean
Experimental Control difference
Group
Group

St.
Error

95% CI

P value

Baseline 6.2 6.1 0.1 0.3 -0.80.6 0.40

3 Months 9.7 8.7 1 0.4

-1.8(-0.5) 0.01

6 Months 11.3 10.8 0.5 0.4

-1.30.2 0.08

12 Months 13.3 12.6 0.7 0.4

-1.50.1 0.05

Mean difference = mean (experimental group)

ries were calculated as was appropriate for the

demographic variables of the patients and the
carers e.g. for age and the for the RMI and BI
scores. Analysis of variance (ANOVA) was used
to compare changes in patient functional ability
over the study period. The comparisons between
the experimental and control group involving
continuous data were done using the independent t-test at each follow-up time period. The
Figure 1. Mean BI scores over the 12 months period. There was a general increase in
patients BI mean scores over the study period. Overall, the patients in the experimental
group had better BI mean scores than the control group (P=0.001).

Mean change in Barthel Index scores over the study period

16
14

13.3
11.3

Mean change

12
9.7

10
8
6

12.6
10.8

8.7
6.2
6.1

Control group
Experimental group

2
0

382

Functional ability.indd 382

Baseline

3 months
6 months
Time period of measurement

12 months

data obtained from the BI and RMI provided a

degree of functional independence or dependence of the stroke survivor. Where appropriate, change scores were used for data analysis.
The results presented are the ones that were
obtained using intention to treat analysis,
which was the preferred model for data analysis
as recommended by the Consolidated Standards
of Reporting Trials (CONSORT) agreement
(Altman et al 2001). All statistics were calculated using STATA version 11.1. The significance level was set at P0.05.

Results
Demographic details
There were more female patients (56.5%) than
male with more than 78% of the sample having
attained less than or equal to Grade 11 level of
education. There were also more female carers (70%) than males. The majority of the carers (61.5%) were available all the time for
caregiving duties. The mean age of the male
patients was 52.111.4 years while that for the
female patients was 54.111.4 years. For the
carers, the male mean age was 42.815.4 while
that for females was 37.410.8 years.

Patient functional ability as measured

by the Barthel Index
The frequency distribution of the functional levels of the patients of the study sample is shown
in Table 1.
Patients who scored 12 and above (60%) on
the BI were considered to be functional while
those who scored less than 12 (<60%) were
considered to be dependent.
Only one patient was functionally independent at the 3 months follow up period. The
number of functionally independent patients
increased during the study period but only 26
(21.8%) were functionally independent at the 12
months follow-up.
The distribution of the BI mean scores are
shown in Figure 1. There was a general increase
in patients BI mean scores over the study
period. Overall, the patients in the experimental
group had better BI mean scores than the control group (P=0.001).
The two sample t-test statistical results of
the BI mean difference in change between the
groups at the various measurement points are
shown in Table 2. The P-values that are given
are for the one tailed t test.
The differences of the BI mean change
between the two groups measurements were
not statistically significant at baseline and at

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Figure 2. Mean RMI scores over the 12 months period. There was a general increase
in the patients RMI scores over the 12 months but they were still low. Overall, the
experimental group patients had better mean mobility scores than those in the control
group (P=0.001).

Mean change in Rivermead mobility scores

over the study period

16
14
Mean RMI change

six months. The experimental group however

had a better mean score than the control group
at three months (P=0.01) and at 12 months
(P=0.05) at the 0.05 level of significance. The
patient BI scores improved over time but overall
they were still poor. Carer education had the
effect of improving the BI scores by an average
of one and 0.7 at three and 12 months respectively.
The comparison in RMI mean scores between
the two groups are shown in Figure 2.
There was a general increase in the patients
RMI scores over the 12 months but they were
still low. Overall, the experimental group
patients had better mean mobility scores than
those in the control group (P=0.001).
The statistical test results of the mean change
between the groups at the various measurement
points are shown in Table 2.
The differences of the RMI mean change
between the two groups at the four points of
measurement were not statistically significant.

12
10

9.1
8.1

8
5.7

6
4
2
0

8.5
7.5

3.7

5.0
3.3

Baseline

Control group
Experimental group

3 months
6 months
Time period of measurement

12 months

Discussion
The patients in this study sample had very low
mobility levels at discharge from hospital as
indicated by their low RMI scores at the baseline assessment. This is despite the fact that one
of the most important aims of rehabilitation following stroke is to improve patients functional
ability. A major contributor towards the realisation of this important rehabilitation goal is
improved patient mobility (van Peppen et al,
2004; Langhorne et al, 2009). The low scores
that persisted in this cohort of patients signify a
high degree of dependency. The higher the RMI
scores, the higher the mobility of the patient
and the reverse is true (Collen et al, 1990).
The patients who belonged to the experimental group improved their RMI scores by an
average score of 0.7, which was moderately
clinically significant. One can only postulate
that maybe the patients cared for by the trained
carers were exercised a little more than those
who were cared for by untrained carers and
hence the slightly better outcome. This outcome
could also be attributed to increased confidence
with the mobilisation process by the carers.
The poor RMI mobility scores of the patients
also agree with the finding of low BI mobility scores. The lack of clinically significant
changes in the two groups mobility abilities
could be attributed to the low scores they had at
discharge and lack of ongoing outpatient rehabilitation. Though it was not part of this study, it
was noted during the follow up interviews that

the majority (greater than 70%) of the subjects

were not receiving outpatient rehabilitation. As
one patient put it,
I do not have the money to go to the
clinic or the hospital for physiotherapy
sessions; it costs R200 to travel to and
from the hospital by metered taxi as the
normal taxis will not take me with my
wheelchair.

If the patients had gone for rehabilitation after their early discharge from hospital,
they would have benefited. Training and exercise programmes have value in stroke rehabilitation (Ramas et al, 2007). They have been
shown to result in improved patient functional
abilities and quality of life (Kalra et al, 2004;
McNaughton et al, 2005; Aprile et al, 2008).
The finding of patient inability to attend outpatient rehabilitation agrees with Kengne and
Anderson (2006)s statement that,
there is poor access of patients
to rehabilitation services and little
information available on functional
recovery of patients after stroke in subSaharan Africa.

Low physically functioning patients have role

limitations and are very limited in their social
functioning (Naess et al, 2006). The improvements that were noted in mobility and activities

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Research
of daily living ability over the one-year period
were not enough to allow patients to function
independently in the community. The patient
dependency on outside help can be explained by
the poor functional levels that the patients exhibited throughout the study period. A score of 60%
on the BI is the cut off between independence and
more marked dependence, 40% or below indicates
severe dependence while 20% or below reflects
total dependence (Granger et al, 1979; Finch et
al, 2002). The mean BI scores at 12 months for
the patients in this study were 63% and 67% for
the control and experimental groups respectively
and they were 54% and 57% respectively at the
six months follow up period. At six months follow
up, 92% of the patients were dependent according
to the BI scores while 78% were dependent at 12
months. It is quite clear from these figures that the
majority of the patients had dependence scores
for most of the study period. Low BI scores negatively affect patients ability to do activities and
participate in the community (Wee and Lysaght,
2009). The poor BI scores can be attributed to
stroke severity as well as the early discharge from
hospital, which meant that the patients received
little to no rehabilitation before discharge. The
lack of out-patient rehabilitation, physiotherapy
included also meant that patients had to rely solely
on carers and natural recovery for any functional
improvements. This is despite the fact that rehabilitation has been shown to improve not only the
quality of life of the carers, but that of the stroke
survivors as well (Kalra et al, 2004; Patel et al,
2004).
Walking exercises are very physically demanding and as such the carers may not have let the
patients practice enough when at home, resulting in some clinically insignificant differences
between the two groups. Despite the general
increase in mobility among the patients over the
year, they still struggled with higher mobility tasks
such as stair climbing and running, with none of
the participants being able to do the latter. The

Key points
n Carers are integral to survival of stroke survivors
n Patients are discharged with low functional abilities
n Carer education alone does not significantly improve patient functional
ability
n There is need to strengthen outpatient rehabilitation services
n Carers of stroke survivors need more structured support

384

Functional ability.indd 384

fact that the majority of the patients did not attend

outpatient rehabilitation did not help as well. Early
discharge combined with home rehabilitation help
promote motor and functional gains that happen
through natural recovery and rehabilitation to a
greater degree of higher level function and satisfaction with community reintegration (Mayo et al,
2000). This then eventually translates into better
physical health for the patient. The role of outpatient rehabilitation, either at home or at the clinic/
hospital can thus not be overemphasised.
In order to improve the provision of outpatient
rehabilitation to patients post-stroke, the government of South Africa introduced compulsory
community service for all undergraduate students
qualifying in the health sector (physiotherapy and
occupational therapy included) as part of the drive
to strengthen primary health care (Mohamed,
2005). Primary health care is aimed at making the
health care system easily accessible and affordable to people in the communities in which they
reside (Dennil et al, 1995). What is required is
strengthening of the structures that are already in
place. It was obvious from the interactions with
patients that they were not being seen at home if
they were not able to get to the clinic. Despite the
lack of financial resources to enable them to travel
to local health centres, it also showed inadequate
referral to local community rehabilitation personnel or possibly lack of resources to enable them
to see patients outside the clinic where they are
based. The reasons for this require further investigation. These findings agree with Coovadia et
al (2009)s statement that despite South Africas
large economy, it belongs in the category of
poorly resourced countries and that there is still
inequitable distribution of resources especially
between the private and public health sectors.
The improvements in function and mobility
that were noted in both groups over the one-year
period, point largely to natural recovery since
the majority of the patients were not receiving
out-patient rehabilitation. One can only postulate
that if the patients had received rehabilitation for
longer periods, they would have improved not
only much faster but also much more in their functional ability. Physiotherapy has been shown to
be effective in improving patient functional ability in many studies (Hopman and Verner, 2003;
Studenski et al, 2005; Naess et al, 2006). It is clear
from this study that improving patients functional
ability should not be left to the carers alone. Not
only is it physically demanding, but also the clinical expertise required to do so may not be easy
for patients and carers to understand during educational sessions, hence the need for outpatient or
domiciliary rehabilitation.

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Conclusion
Though patient functional ability generally
improves over time, it does not improve to satisfactory levels. Carer training alone does not
result in significant improvements in patient
functional ability. The low levels of carer training intensity could also have contributed towards
this finding. The majority of patients are being
discharged home with very low functional levels
to unprepared carers resulting in them being very
low functioning one-year post-stroke. Community
physiotherapy including domiciliary visits needs
to be strengthened to ensure continuation of rehabilitation post discharge from the hospital. Though
there is no agreement in the literature on the best
method for carer education at the moment, it
would be important to try out the effectiveness of
different methods of carer training and see which
one would best suit our country. IJTR
Funding acknowledgements:
1. University of the Witwatersrand
2. Medical Research Council of South Africa
Declaration of Interest Statement: The authors report no
conflict of interest.

Abegunde DO, Mathers CD, Adam T, Ortegon M, Strong K

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