ORIGINAL PAPER

Caregiver burden, time spent caring and health statusin the first 12 months following stroke

L. TOOTH1, K. MCKENNA2, A. BARNETT1, C. PRESCOTT2, & S. MURPHY2

1School of Population Health, and 2Division of Occupational Therapy, University of Queensland,

Queensland, Australia

(Received 2 September 2004; accepted 5 February 2005)

AbstractObjective: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation;to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes.Methods: Patients and carers prospectively interviewed 6 (n¼ 71) and 12 (n¼ 57) months after discharge. Relationshipsof carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression.Results: Carers showed considerable burden at 6 and 12 months. Carers spent 4.6 and 3.6 hours per day assisting patientswith daily activities at 6 and 12 months, respectively. Improved patient motor and cognitive function were associated withreductions of up to 20 minutes per day in time spent in daily activities. Better patient mental health and cognitive functionwere associated with better carer mental health.Conclusions: Potentially modifiable factors such as these may be able to be targeted by caregiver training, support andeducation programmes and outpatient therapy for patients.

Keywords: Caregiver, burden, stroke, time

Introduction

Stroke is one of the most prevalent causes of ongoing

disability and handicap in Australia, UK and the

USA, affecting more than a million people per year

in these countries [1]. While some stroke survivors

recover with little residual disability, the majority

have persistent functional deficits and require the

assistance of formal and informal care services to

remain living in the community [2].

In the USA, the cost savings by informal

caregiving for stroke patients in 1999, based on

number of hours of care provided, was upwards of

six billion dollars [3]. While informal caregivers

may provide cost savings of this magnitude, the

personal cost to the carer is substantial.

Being a caregiver has been linked to increased mor-

tality [4], cardiovascular and psychiatric morbidity

[5–7] and poorer life satisfaction [7]. Informal care-

givers of people with stroke may experience signifi-

cant depression and anxiety and long-term burden.

Burden involves not only the objective tasks (e.g.

physical assistance) and time involved in caring, but

also how the carer subjectively appraises the care he

or she provides, in terms of feelings, attitudes and

perceptions [8–10].

When stroke occurs, caregivers may be abruptly

placed in a caregiving role. As well as dealing

emotionally with the sudden onset of a disruptive

life event, carers are often required to provide

immediate assistance with basic activities of daily

living and to take on unfamiliar roles and responsi-

bilities [11]. The resulting impact on their lives can

be dramatic. Carers experience stress as early as

1-month post stroke [12, 13], with burden, anxiety

and depression common throughout the first 12

months [14–17]. Poor health status, quality of life,

depression and burden in caregivers can extend for

many years post-stroke [16–22].

There has been some disagreement as to what fac-

tors predict higher caregiver burden. In some studies

Correspondence: Leigh Tooth, PhD, School of Population Health, University of Queensland, Queensland 4072, Australia. Tel: þ61 7 3346 4669.

Fax: þ61 7 3365 5540. E-mail: l.tooth@sph.uq.edu.au

ISSN 0269–9052 print/ISSN 1362–301X online # 2005 Taylor & Francis

DOI: 10.1080/02699050500110785

Brain Injury, November 2005; 19(12): 963–974

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[12, 13, 18, 23, 24], but not all [15, 19, 25], greater

functional dependence (stroke severity) in the stroke

survivors has been linked to higher caregiver burden.

Other factors linked with burden are disruption to

family and marital life [26], time constraints [11,

27, 28], reduced social support [15], poorer care-

giver mood [15, 17, 18, 23] and health status [13].

Associations between burden and caregivers’ demo-

graphic characteristics (such as age, gender, their

relationship to the stroke survivor) have been more

inconsistently found.

One objective estimate of caring which is not

routinely measured is the actual time spent caring.

An average number of care hours per day ranging

from 5–9, from 6 months to 5 years post-stroke,

has been cited [13, 25, 29]. In one of the few studies

to examine time spent caring as an outcome,

Granger et al. [30] found caregivers spent 47

minutes per day helping the person with stroke

(n¼ 21) perform personal care activities, at an

average of 6.7 months post-discharge. Granger et al.

quantified the increased minutes of care required if

the person’s functional dependence, as measured

by the Functional Independence Measure [31]

decreased by a set amount. However, the influence

of other covariates was not controlled for in the

analyses, thus limiting its usefulness. In Granger

et al.’s study, like others [32, 33], the breakdown of

time spent caring by task was not reported.

Understanding the way in which time spent caring

is distributed over various tasks is a potentially

useful way of measuring rehabilitation success,

targeting rehabilitation, providing carer support or

assisting with estimations of care provision.

Furthermore, understanding the experience of

burden by a caregiver of a stroke survivor and the

profile of a burdened caregiver are important if

health care professionals are to intervene to decrease

the incidence and extent of burden.

This study, therefore, aimed to quantify time spent

caring, perceived burden and health status in carers

of stroke patients 6–12 months after discharge from

hospital. It also aimed to identify the sociodemo-

graphic and clinical characteristics of patients

and carers which are associated with these three

outcomes.

Methods

Participants

Participants were the primary unpaid caregivers

of patients discharged after inpatient rehabilita-

tion for stroke at a metropolitan hospital in

Brisbane, Australia, from October 1999–June 2002.

The patients, who were being recruited for another

study, were eligible for participation in that study if

they were discharged to the community and had

sufficient language and cognitive abilities to consent

and participate in the interview process. Patients who

were discharged to care facilities such as nursing

homes or hostels and those with behavioural or

psychiatric comorbidity were excluded. Patients who

consented were asked if they had a primary caregiver,

defined as an unpaid family member or friend who

was ‘closely involved in maintaining [the patient’s]

ability to live independently at home’ ([14], p. 844).

Caregivers were invited to participate if they had

an English proficiency level sufficient to participate

in the interview and assessments.

Procedure

Ethical approval to conduct this study was obtained

from relevant hospital and university committees.

Prior to rehabilitation discharge, all potential parti-

cipants were provided with an information sheet

about the study. Those who met the entry criteria

and agreed to participate provided written consent.

Where consenting participants had a carer, the carer

was then invited to participate and consented in

writing. Patients and carers were contacted 6 and

12 months after discharge to arrange an interview

in their homes. Two research assistants conducted

the interviews, which lasted between 1–2 hours. Both

patient and caregiver participated in scoring

the assessment of the patient’s functional status.

The two interviewers then separated to administer

the separate patient and carer questionnaires. This

process minimized interview time and ensured

confidentiality of caregiver responses.

Measures

Caregiver sociodemographics were age, gender,

marital status, employment status, their relationship

to the patient, if they lived with the patient, if they

had a major health complaint and the number and

quality of personal supports they received (Table I).

The number of personal supports was summed out

of a possible five (spouse or partner, family or

relatives, friends, groups, other). The quality of these

personal supports, measured by asking caregivers

to rate the usefulness of each support in helping them

to care, was scored on a 5-point scale (0 ¼ not at all

useful, through to 4 ¼ extremely useful). These were

summed and the average calculated. The caring

experience was measured by asking how long they

had cared for the patient, if they had other caregiving

roles (e.g. children) and if the care they provided to

the patient was just for the stroke or for another

concurrent illness (e.g. cancer). Caregiver burden

was measured using two assessments. The 13-item

Caregiver Strain Index (CSI) [34] measures

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common stressors experienced by a caregiver. Items

are scored yes (¼1) or no (¼0) and are summed,

with higher scores indicating more burden. CSI

scores of greater than six have been used as a

indicator of considerable strain [13]. The CSI

principally measures objective burden. The 24-item

Caregiver Burden Inventory (CBI) [35] measures

five dimensions of burden: time (5 items), social

(5 items), emotional (5 items), physical (4 items) and

developmental (5 items). Each item is scored from

0–4. Items are summed to give total scores for each

dimension, with higher scores indicating more

burden. The CBI measures both objective and

subjective burden. Also recorded was time spent

caring in minutes per day on basic activities of daily

living (BADL) (eating, grooming, bathing, dressing,

toileting and mobility), instrumental activities of

daily living (IADL) (telephone calls, leisure, reading,

medication management, money management,

transportation) and household (travel, shopping,

preparing meals, laundry, light housework and

home maintenance) tasks. Caregivers were asked to

estimate this time for an average week. Carer health

status was assessed using the Medical Outcomes

Study 36-item Short Form Health Survey (SF-36)

version 1 [36]. The SF-36 incorporates eight sub-

scales, which can be converted into two component

scores: a physical component summary score

(PCS—comprising the SF-36 sub-scales of physical

functioning, physical role limitations, bodily pain

and general health) and mental component summary

score (MCS—comprising vitality, social functioning,

emotional role limitations, mental health) [36].

Standardized PCS and MCS scores have a mean of

50 and standard deviation of 10. Norms, based on

the 1995 Australian Census, have been developed for

the Australian population [37].

Patient variables were age, gender, whether this

was their first stroke, type and side of stroke, whether

they received outpatient therapy and community

services (meals on wheels, home help, home nursing,

respite, other), their motor and cognitive functional

status and SF-36 scores (Table II). Patients’ func-

tional status was measured using the Functional

Independence Measure (FIM) [31], an assessment

of the severity of patient disability that quantifies

the patient’s need for assistance using a 7-level

scale (1 ¼ total dependence and 7 ¼ complete inde-

pendence). The FIM measures cognitive (5-items,

comprising communication and social cognition)

and motor (13-items, comprising self-care, sphincter

management, mobility (transfers) and locomotion)

function. The FIM has excellent reliability and

validity [31, 38]. Patient health status was assessed

using the SF-36.

Data analysis

Univariate comparisons of consenting and non-

consenting patients and attrition in carers were

conducted using Mann–Whitney U-tests for non-

Gaussian data and independent group t-tests for

Table I. Caregivers’ sociodemographic, caring and support

characteristics.

Age, M (SD) 60.4 (14.9)

Gender, n (%)

Female 51 (72)

Male 20 (28)

Relationship, n (%)

Spouse/partner 50 (70)

Relative/friend 21 (30)

Living with patient, n (%) 66 (93)

Median (quartiles) length of carer role (months) 6 (6–6)

�6 months 57 (80)

>6 months 14 (20)

Have a major health complaint, n (%) 37 (52)

Marital status, n (%)

Married/defacto 56 (79)

Not married 15 (21)

Employment status, n (%)

Employed/student 26 (37)

Not working/home duties 45 (63)

Other caring roles, n (%) 22 (31)

Caring also for another problem, n (%) 41 (58)

Mean (SD) number of supports 1.5 (1.0)

Mean (SD) quality of supports 2.8 (1.2)

Mean quality of supports: collated for each caregiver whereusefulness was rated as: 0¼ not at all, 1 ¼ slightly, 2 ¼moderately,3¼ very or 4¼ extremely; Caring also for another problem: Patienthad more than one condition that the carer provided care for.

Table II. Patient demographic and clinical characteristics.

n (%)

Age, M (SD) 68.5 (12.8)

Gender

Male 43 (61)

Female 28 (39)

First stroke

Yes 51 (72)

No/not clear from history 20 (28)

Side of stroke

Right CVA 28 (39)

Left CVA 41 (58)

Bilateral 2 (3)

Type of stroke

Lacunar syndrome 11 (15)

Total anterior circulatory syndrome 6 (9)

Partial anterior circulatory syndrome 32 (45)

Posterior syndrome 16 (23)

Sub-arachnoid haemorrhage/other 6 (8)

Receive outpatient therapy on discharge 51 (79)

Receive community services on discharge 17 (24)

Functional status (FIM) on discharge

Motor FIM score, M (SD) 78.6 (79)

Cognitive FIM score, M (SD) 30.6 (5.0)

SF-36 Health status, M (SD)

Physical health (PCS) 36.8 (11.2)

Mental health (MCS) 50.5 (11.8)

Caregiver burden, time spent caring and health status 965

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Gaussian data. Descriptive statistics (means and stan-

dard deviations (SD); medians and quartiles) were

used to present patient and carer demographic and

clinical characteristics. Change in time spent caring,

burden and health status were analysed using

Wilcoxon’s signed-ranks tests for non-Gaussian data

and paired t-tests with 95% confidence intervals for

Gaussian data. The carers’ mental and physical health

results were compared to age-adjusted Australian

norms [37].

For the multi-variate analyses, the outcomes were:

time spent caring (minutes per day) in BADL and

IADL, CSI, the CBI dimension scores (time,

social, emotional, physical and developmental) and

the SF-36 PCS and MCS. Time spent on household

tasks was omitted as an outcome as it was impossible

to separate the time carers spent on household tasks

for themselves, other family members and care reci-

pients. Linear Gaussian regression was used for out-

comes that were Gaussian (CSI, CBI developmental

and time burden and the SF-36 MCS and PCS) and

linear Poisson regression was used for the others

(CBI emotional, social and physical burden, BADL

and IADL). Using the regression models, one

looked for associations between the outcomes and

the socioeconomic and demographic variables in

two stages. The first stage only used variables that

are potentially modifiable (either through rehabilita-

tion or service provision). These variables included

the number of and quality of supports, motor and

cognitive FIM scores and employment. The optimal

model from this set of variables was selected using

Mallow’s criteria. The residuals from this optimal

model were then tested against non-modifiable

variables, including gender, age, side of stroke and

other illnesses. Non-modifiable variables that

showed an association to the residuals were then

added to the model. A final (adjusted) model and

residual check were then made. Carer predictor vari-

ables were number and quality of personal supports,

employment status and other caregiving roles.

Patient predictor variables were receipt of outpatient

therapy or community services, motor and cognitive

functional status and PCS and MCS. Estimates for

cognitive FIM and motor FIM scores are shown

for a 5- and 13-unit increase, respectively; these

represent an improvement of one overall level of

independence. Estimates for SF-36 PCS and MCS

reflect a 5-unit increase. Where linear regression

was used adjusted R2 values are also presented.

Results

Participant consent and loss to follow-up

Between October 1999–June 2002, 160 stroke

patients, admitted to a Brisbane metropolitan

hospital, were eligible for inclusion in a study

assessing community integration; ineligible patients

(n¼ 81) were those discharged into nursing care,

who died or who had communication difficulties.

The details of the patient and carer recruitment,

consent rates and follow-up are in Figure 1. Of the

eligible patients, 68% consented. These patients

were invited to participate in a study assessing

caregiving burden. Of these patients, 82% had a

carer, of whom 80% consented to participate. The

demographic and clinical characteristics of the

patients and carers and the time spent caring,

health status and burden in carers are presented

in Tables I–III.

Univariate comparisons of sociodemographic or

clinical characteristics between consenting

(n¼ 109) and non-consenting (n¼ 51) patients

found no significant differences. The sociodemo-

graphic or clinical characteristics of patients with

(n¼ 71) and without (n¼ 38) a consenting carer

were also compared; patients with a carer had

poorer overall functional status (F(1,107)¼ 4.29,

p < 0.05) and were more likely to be married (81%)

compared to those without a carer (43%, Fishers

Exact Test �2(2)¼ 16.7, p < 0.001, 2-sided). No

sociodemographic data were available on the 18

non-consenting carers to allow comparisons with

those who consented.

At the 12-month assessment, 14 carers had

withdrawn from the study. Carers who withdrew

had higher emotional burden scores compared to

those who stayed in the study (Mann–Whitney

U-test, Z¼�2.38, p < 0.05, 2-sided). Also, those

who withdrew had more physical burden

(Mann–Whitney U-test, Z¼�1.88, p¼ 0.06,

2-sided). There were no differences on any socio-

demographic variables between those who withdrew

and those who did not.

Overview of time spent caring, burden and healthstatus and change from 6 to 12 months

Time spent caring in individual BADL, IADL and

housework tasks at 6 and 12 months is shown in

Table III as minutes per day. Not all carers reported

spending time helping the patients with BADL and

IADL tasks. At 6 and 12 months, 39% of carers did

not help their care recipient with BADL tasks.

Similarly, 17% of carers at 6 months did not help

with IADL tasks, with this dropping to 7% at 12

months. At 6 months, carers who did help with

BADL, IADL and housework tasks spent a median

(quartiles) 279 (166–409) minutes per day (or 4.6

hours per day (quartiles 2.7–6.7)) assisting the

patients; at 12 months they spent a median

(quartiles) 224 (133–352) minutes per day (or 3.6

hours per day (quartiles 2.0–5.8)). This difference in

total time was significant (Wilcoxon’s Signed-ranks

966 L. Tooth et al.

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test Z¼�2.05, p < 0.05). For BADL and IADL,

carers spent the most time assisting patients to

mobilize (30% and 37% of total time spent on

BADL at 6 and 12 months) and travel (39% and

45% of total time spent on IADL at 6 and 12

months). Over two-thirds of the total time was spent

on household tasks. Preparing meals accounted for

the largest proportion of household tasks at both

6 and 12 months (34% and 37%, respectively).

Using a cut-off point of greater than six for the CSI

[13], 44% and 42% of carers had considerable

burden at 6 and 12 months, respectively. In contrast,

at 6 and 12 months, only 6% and 3% of carers indi-

cated no burden (score of 0). CSI scores showed no

change over the 6-month period (95% CI of the

difference, �0.56, 1.0). The individual CSI item

reported most often, by more than 60% of carers at

both time points, was ‘changes to life plans because

of caring’. The CSI items, ‘confining nature of

caregiving’, ‘emotional adjustments’, ‘upsetting

patient behaviour’ and ‘upset at the change in the

patient’ were reported by greater than 50% of

carers at both time points. Developmental burden

was the only CBI dimension to show a statis-

tically significant change, indicating greater burden,

between 6–12 months (Wilcoxon’s signed-ranks

test, Z¼�2.52, p < 0.05) (Table III).

At 6 and 12 months, carers’ physical and mental

health status scores (PCS and MCS) were less than

age-adjusted normative scores for Australian

people. Carer PCS (95% CI of the difference,

�1.3, 1.5) and MCS (95% CI of the difference,

�1.7, 3.5) showed no change from 6 to 12 months

(see Table III).

Variables associated with time spent caring,burden and health status

The estimates in Tables IV–VII reflect the change

(and 95% CI) in outcome scores for a unit change in

the statistically significant variables. The exceptions

are: motor FIM scores, where the estimates reflect a

13-unit change; cognitive FIM scores, where they

represent a 5-unit change; and SF-36 MCS and PCS

scores, where they represent a 5-unit change. For

example, in Tables IV and V, total CSI score at

12 months decreased by 1.9 points (95% CI: �2.9,

�1.0) if the patient improved their motor function

by 13 units on the FIM.

Eligible for studyn=160

Consentn=109

Non-consentn=51

ReasonsNot interested n=38Communication difficultiesIll health

n=7n=4

Plans to move n=2

Carerconsented to

6-month interview

n=71

Patient hadcarern=89

Carerparticipatedin 12 month

follow-upn=57

Carer dropout (n=14)ReasonsWithdrewNo longer caringUncontactable

n=8n=2n=2

Patient moved to nursing home n=2

Figure 1. Recruitment, participant flow and follow-up of patients and their caregivers.

Caregiver burden, time spent caring and health status 967

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Poorer mental health was associated with worse

(higher) scores on the CSI and the CBI dimensions

of emotional, developmental, physical and social

burden. Better motor function was associated with

decreased time spent caring. At 6 months, a

13-unit increase in the patient’s motor FIM

score meant that carers spent an average of 17 and

20 minutes less per day assisting with BADL and

IADL tasks, respectively. This was a 24% reduction

in time spent on BADL (from a mean 71 minutes per

day) and a 36% reduction in time spent on IADL

tasks (from a mean 55 minutes per day). At 12

months, if patients had improved motor function,

carers spent 6 minutes less on BADL (8% reduc-

tion). Improved patient cognitive function (5-unit

increase in cognitive FIM score) meant that carers

spent 15 minutes less per day on IADL tasks (33%

reduction).

Sociodemographic and carer support variables

were also associated with time spent caring

and burden. Carers with a higher number and quality

of personal supports spent 16–25 minutes more per

day assisting with IADL. Better quality of supports

was associated with an increase of 17 minutes per

day in the time spent on BADL. Higher physical

burden was also found in carers with more personal

supports. Those who cared for more than one

person spent 10 minutes less per day assisting the

stroke care recipient with BADL tasks, but had

a higher time burden as measured by the CBI.

Better carer mental health status was associated

with better patient mental health status and cognitive

function. Better carer physical status was associated

with employment and patients receiving ongoing

therapy.

Discussion

This study has shown considerable time spent caring

and burden and poorer health status in carers 6 and

Table III. Caregivers’ burden, health status and time spent caring at 6 and 12 months.

6 months 12 months

Caregiver Strain Index, M (SD) 5.6 (3.2) 5.7 (3.7)

Caregiver Burden Inventory, M (IQR)

Emotional 0 (0–3) 0 (0–2)

Social 1.0 (0–5) 1.0 (0–5)

Developmental 4.0 (2–10) 5.0 (2–12)

Physical 2.0 (0–7) 3.0 (0–6)

Time 5.5 (3–11) 6.0 (3–11)

SF-36 Health status, M (SD)

Physical health (PCS) 47.9 (10.6) 47.2 (9.4)

Mental health (MCS) 48.7 (10.1) 47.8 (10.9)

Number (%) of carers spending time helping with

BADL 43 (61%) 35 (61%)

IADL 59 (83%) 52 (91%)

Housework 69 (97%) 56 (98%)

Of those spending time caring, actual time spent, median (quartiles)

BADL total 40 (12–110) 35 (10–93)

Eating 0 (0–5) 0 (0–5)

Grooming 0 (0–5) 0 (0–5)

Bathing 5 (0–15) 5 (0–15)

Dressing 10 (2–22) 5 (0–15)

Toileting 0 (0–0) 0 (0–0)

Walking 0 (0–30) 0 (0–30)

Stairs 0 (0–1) 0 (0–2)

Transfers 0 (0–10) 0 (0–5)

IADL total 42 (23–76) 24 (13–62)

Phoning 0 (0–1) 0 (0–2)

Reading 0 (0–3) 0 (0–2)

Leisure 0 (0–16) 0 (0–10)

Medications 5 (0–10) 1 (0–10)

Finances 6 (2–16) 4 (0–10)

Travel 15 (1–34) 8 (0–25)

Housework total 209 (131–284) 159 (90–249)

Shopping 17 (10–26) 13 (9–26)

Preparing meals 75 (45–114) 60 (30–98)

Laundry 25 (13–43) 17 (9–30)

Light housework 42 (25–90) 35 (18–60)

Heavy housework 15 (0–30) 4 (0–24)

968 L. Tooth et al.

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Table IV. Changes in carer score outcomes at 6 and 12 months (95% confidence interval): Caregiver Strain Index (CSI) and Caregiver Burden Inventory (CBI) dimensions.*

Covariate

Caregiver strain index CBI emotional burden CBI physical burden

6 months (n¼ 63) 12 months (n¼ 55) 6 months (n¼ 63) 12 months (n¼ 55) 6 months (n¼ 67) 12 months (n¼ 53)

Number of supports – – – – 1.1 (0.2, 2.3) –

Quality of support 0.6 (0.1, 1.1) – – – – –

FIM motor scorea – �1.9 (�2.9, �1.0) – – – –

FIM cognitive scoreb – – – – – �0.5 (�0.8, �0.2)

Carer employed 2.4 (1.1, 3.8) 4.0 (2.2, 5.8) – – – –

Patient mental healthc�0.5 (�0.7, �0.2) �0.7 (�1.0, �0.4) �0.3 (�0.4, �0.1) �0.4 (�0.6, �0.2) �0.3 (�0.5, �0.0) –

Adjusted R2 (%) 47.0 62.7 NA NA NA NA

*Variables chosen using Mallow’s criterion and adjusted for carer gender and age, patient gender and age, type and side of stroke, whether it was the patient’s first stroke, patient co-morbidity,carer relationship to the patient, if the carer had an illness and if the patient had another illness the carer also cared for. Empty cells mean covariate was not in final model for this outcome.aFor a 13-unit increase in FIM motor score. bFor a 5-unit increase in FIM cognitive score. cFor a 5-unit increase in SF-36 mental component summary score. N/A as analyzed using Poisson regression.

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Table V. Changes in carer burden outcomes at 6 and 12 months (95% confidence interval): Caregiver Burden Inventory (CBI) dimensions.*

Covariate

CBI time burden CBI developmental burden CBI social burden

6 months (n¼67) 12 months (n¼ 55) 6 months (n¼67) 12 months (n¼ 55) 6 months (n¼67) 12 months (n¼ 54)

FIM motor scorea�2.0 (�3.3, �0.6) �2.8 (�4.3, �1.2) – – – �0.7 (�1.0, �0.3)

FIM cognitive scoreb – – – �2.0 (�3.5, �0.5) – �0.5 (�0.8, �0.1)

Patient physical healthc – �1.0 (�1.6, �4.8) – – – –

Patient mental healthc – – �1.1 (�1.6, �0.6) �0.7 (�1.2, �0.1) �0.2 (�0.3, �0.1) –

Services received 3.1 (0.6, 5.6) 2.7 (4.9, 0.6) – – – –

Carer has other care roles 2.2 (0.1, 4.3) – – – – –

Adjusted R2 (%) 39.2 56.0 22.0 23.5 NA NA

*Variables chosen using Mallow’s criterion and adjusted for carer gender and age, patient gender and age, type and side of stroke, whether it was the patient’s first stroke, patient co-morbidity, carerrelationship to the patient, if the carer had an illness and if the patient had another illness the carer also cared for. Empty cells mean covariate was not in final model for this outcome.aFor a 13-unit increase in FIM motor score. bFor a 5-unit increase in FIM cognitive score. cFor a 5-unit increase in SF-36 physical component summary score or SF-36 mental component summaryscore. N/A as analysed using Poisson regression.

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12 months after patients are discharged. It has also

shown that these outcomes remained fairly constant

over this 6-month period and identified a number of

characteristics associated with these outcomes.

Through early identification of factors that may

relate to caregiver distress and burden, intervention

strategies can be used more effectively to help

caregivers maintain their caring role while reducing

some of the more negative effects.

At 6 months, carers reported spending 4.6 hours

per day assisting their care recipient, with this redu-

cing to 3.6 hours 6 months later. Previous research

on stroke has reported caregivers spending 6–8

hours caring, 6 months post-discharge [13, 25].

Hermans et al. [29] showed carers were still spend-

ing 5 hours per day caring 3 years after stroke.

None of these studies identified what tasks the time

was spent on. Granger et al. [30] reported 21

stroke caregivers spending a mean 47 minutes per

day helping with BADL, but did not break down

the tasks individually.

In this study, the carers’ main tasks appeared

to change over time. This was most evident for

IADL. Compared to 6 months, at 12 months

carers spent proportionately more time helping the

patients with travel and leisure activities and less

time assisting with management of medications

and finances. This may reflect continued patient

improvement in motor and cognitive functional

ability. Alternatively it may reflect a re-adjustment

of patient or carer priorities in terms of what they

spend time on.

This study also examined which sociodemographic

and clinical characteristics in patients and carers

were associated with time spent caring. These ana-

lyses focused on characteristics that are potentially

modifiable either through rehabilitation or service

provision; the rationale being that the results

could better inform clinical practice. Non-modifiable

factors such as age, gender and type of stroke were

used to adjust the analyses where necessary.

Patient functional status was the most consistent

variable associated with time spent caring. The

results suggest that if patients can improve one

level of independence on the motor or cognitive

FIM, carers would effectively spend between

24–36% less time caring 6 months after discharge

and 8% less time 12 months after discharge.

Improved patient cognitive function was also

associated with a 33% reduction in time spent on

IADL. This result is consistent with that of Zinn

et al. [39], who documented poorer IADL function-

ing in patients with cognitive impairment. Granger

et al. [30] found a decrease in helping with BADL

tasks of 31 minutes per day when stroke patients

increased their motor FIM score by 13-points

Table VI. Changes in time spent caring in BADL and IADL (in minutes per day) by carers at 6 and 12 months (95% confidence interval).*

Covariate

BADL IADL

6 months (n¼ 66) 12 months (n¼54) 6 months (n¼ 70) 12 months (n¼52)

Number of supports – – 25 (7, 47) –

Quality of support 17 (1, 40) – – 16 (1, 37)

FIM motor scorea�17 (�20, �13) �7 (�8, �4) �20 (�28, �9) –

FIM cognitive scoreb – – �15 (�26, �2) –

Carer has other care roles – �10 (�12, �3) – –

*Variables chosen using Mallow’s criterion and adjusted for carer gender and age, patient gender and age, type and side of stroke, whether itwas the patient’s first stroke, patient co-morbidity, carer relationship to the patient, if the carer had an illness and if the patient had anotherillness the carer also cared for. Empty cells mean covariate was not in final model for this outcome.aFor a 13-unit increase in FIM motor score. bFor a 5-unit increase in FIM cognitive score.

Table VII. Changes in carer SF-36 physical and mental component summary scores at 6 and12 months (95% confidence interval).*

Covariate

SF-36 component summary scores

MCS 6 months (n¼66) MCS 12 months (n¼51) PCS 6 months (n¼ 65) PCS 12 months (n¼51)

FIM cognitive scorea 4.4 (1.0, 7.8)

Carer employed 8.8 (4.6, 12.9) 10.7 (6.3, 15.1)

Patient mental healthb 1.6 (0.6, 2.7)

Receive ongoing therapy 4.6 (0.3, 8.9)

Adjusted R2 (%) 18.5 20.0 45.6 41.5

*Variables chosen using Mallow’s criterion and adjusted for carer gender and age, patient gender and age, type and side of stroke, whether itwas the patient’s first stroke, patient co-morbidity, carer relationship to the patient, if the carer had an illness and if the patient had anotherillness the carer also cared for. Empty cells mean covariate was not in final model for this outcome.aFor a 5-unit increase in FIM cognitive score. bMental health by SF-36 mental health component summary score.

Caregiver burden, time spent caring and health status 971

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(similar to one level of independence as used in this

study). The patients in Granger et al.’s [30] study

were similar to those in this study in terms of age

and marital status, although more were male and

they had generally poorer functional status. No

other studies are comparable with this one as they

either included a mixture of rehabilitation patients

[33, 40], patients younger than 65 years [33] or

patients living in institutional care facilities [33].

That a sizeable proportion of carers were burdened

at 6 months [13, 40] and the burden levels remained

constant over time [13, 21] is consistent with other

research. The particular CSI items identified by

more than half the caregivers, ‘changes to life plans

because of caring’, the ‘confining nature of care-

giving’, ‘upsetting patient behaviour’ and ‘upset at

the change in the patient’, have also been the most

frequently reported burden items in other studies

using the CSI [13, 22, 23]. While levels of burden

remained relatively constant over the 6-month

period, carers did record increased developmental

burden. This dimension of the CBI reflects carers

feeling they are missing out, as compared to their

peers; or feeling that things should be different at

this stage of their lives [35]. Others [18] have identi-

fied this aspect to also be of most concern to carers

of stroke patients.

Poorer patient mental health was the strongest

variable associated with increased carer burden,

showing a consistent effect across the CSI and

CBI, a finding supported by Jones et al. [12]. The

relationship between patient motor function and

burden was less consistent; the most substantial asso-

ciation was reduced CBI time burden with better

patient motor function. Time burden was also sub-

stantially higher if carers had other caring roles or if

the patient received a service. The relationship

between service provision and carer burden remains

unclear, with some researchers [8], but not all [13],

finding a similar link. Yates et al. [41] postulated

that services may not reduce burden because they

may not be a substitute to the care provided by the

carer but instead serve as a supplement to it.

Interestingly, being employed was associated with

higher burden but only on the CSI. It is possible

this reflects the demands that employment places

on a carer’s time, although employment was not

associated with time burden on the CBI. Physical

burden was higher in carers who had a higher

number of personal supports. Carers who rated the

quality of the support they received more highly

also recorded higher burden on the CSI. This is in

contrast to results by Blake and Lincoln [23] and

Van den Heuval [20] who showed higher strain

if carers were less satisfied with social support. This

may reflect the different tools used to measure

burden and social support.

Carers’ physical and mental health was consis-

tently lower than age-adjusted population norms at

the two time points. Forty-two per cent and 50%

of carers scored at least 1 SD below the norm on

the PCS, at the 6 and 12 month assessments, respec-

tively. Similarly, 48% had MCS scores more than 1

SD below the norm at the 6-month assessment and

46% had MCS scores more than 1 SD below the

norm at the 12-month assessment. Carers’ mental

and physical health status were primarily associated

with patient characteristics. Similarly to Van den

Heuval [20], better carer MCS was found when

patients had better cognitive function. Better MCS

and PCS in carers were associated with better patient

mental health. Being employed was the only other

variable to be associated with better carer PCS,

which may reflect the physical ability needed to

hold some jobs.

The effect of improved patient functional indepen-

dence and mental health on carer burden and

health status has implications for service delivery.

A recent systematic review documented outpatient

rehabilitation, provided by qualified physiotherapists,

occupational therapists and other multi-disciplinary

therapy staff, to have a modest effect on improving

patient functional independence and reducing

deterioration [42]. Carer training programmes may

also contribute to reduced burden. Training carers

in basic nursing and manual handling skills as

well as facilitation of ADLs have been linked to

patients achieving functional independence sooner

after stroke discharge [44]. Adoption of these types

of programmes may also reduce carer burden and

improve patient quality of life, anxiety and

depression [43]. Other carer programmes, including

the provision of education and emotional support,

or instruction in problem solving have also been

linked with improved carer health status and quality

of life [44, 45]. Pierce et al. [46] reported on the

delivery of information, support and practical

advice to a small number of caregivers via the

Internet, describing their willingness and ability to

use and benefit from this medium. Others sought

to determine the effect of a computer-mediated auto-

mated interactive voice response system on stress in

caregivers of people with Alzheimer’s Disease [47].

Compared to the control group, caregivers in the

treatment group who were wives or who had lower

mastery or feelings of control in their caregiving

role at baseline had significantly reduced bother,

depression and anxiety scores after 18 months. As

noted by these authors, these media may partic-

ularly suit caregivers whose preference is not for

face-to-face interactions with health professionals or

for specific groups of caregivers, as demonstrated

in their study.

972 L. Tooth et al.

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Limitations

There are a number of limitations to this study. The

sample size was small, although every consecutive

eligible patient was invited to participate.

There are some concerns about generalizability

to other stroke populations. While there were no

univariate differences between patients who con-

sented and did not, one was not able to compare

the carers if they did not consent. Patients requiring

a carer are necessarily more dependent than those

who do not and this needs to be taken into account

when considering generalizability. The 14 carers

who dropped out were more emotionally and physi-

cally burdened and, therefore, the result estimates for

these outcomes may be biased toward a healthier

population.

Lastly, this study did not measure problem

behaviours in patients and had no pre-stroke

measure of caregiver burden, time spent caring and

mental and physical health.

Conclusion

This study has shown considerable burden and time

spent caring and poorer health status in carers in the

12 months after stroke patients are discharged from

inpatient rehabilitation. There are a number of

potentially modifiable factors that are associated

with these outcomes; these include patient functional

status and mental health and the number and quality

of the personal supports that caregivers have. The

adoption of caregiver training, support and educa-

tion programmes, as well as outpatient therapy for

patients, may be able to impact on these factors and

improve the experience of caring for carers of stroke

patients.

Acknowledgements

L. Tooth was supported by a National Health and

Medical Research Council of Australia Public Health

Training Fellowship (# 997032) and a Capacity

Building Grant (# 252834). A. Barnett was sup-

ported by a National Health and Medical Research

Council of Australia Capacity Building Grant

(# 252834). The authors also wish to acknowledge

the following clinical collaborators: P. Varghese,

P. Aitken, J. Griffin, L. Caldwell, M. Smith,

C. Chen, K. Griffin, C. Ingram, C. Brown,

T. Hoffmann and C. Zemljic and the Occupational

Therapy staff at the Princess Alexandra Hospital.

Support is also acknowledged from A. Dobson,

C. Bain, Z. Clavarino, J. Najman, A. Lopez,

P. Schluter, G. Williams, J. Van Der Pols,

A. Mamun and R. Ware from the Longitudinal

Studies Unit at the School of Population Health,

University of Queensland (url:http://hisdu.sph.uq.

edu.au/lsu/); and A. Green and D. Purdie from the

Queensland Institute of Medical Research.

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