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PSYCHOSOCIAL PROBLEMS, QUALITY OF LIFE AND CAREGIVER BURDEN
AMONG STROKE CAREGIVERS IN INDIA
Rinu Susan Raju M.A. M.Phil.
Parmdeep Kaur M.Sc B.Ed PGDCA
Jeyaraj D Pandian MD DM FRACP
Stroke Unit, Department of Neurology, Christian Medical College, Ludhiana, Punjab 141008,
India
Address for Communication
Dr Jeyaraj D Pandian MD DM FRACP
Professor and Head of Neurology
Head of Research, Betty Cowan Research and Innovation Centre
Christian Medical College, Ludhiana
Punjab, India- 141008
E mail: jeyarajpandian@hotmail.com
Phone: 91 9915784750
Fax: 91-161-2220850
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Acknowledgements and Conflict of Interest
We are thankful to Dr Clarence Samuel MD, Assistant Professor, Department of Community and
Preventive Medicine, Christian Medical College, Ludhiana for his statistical advice and Dr
Yashpal Singh, Professor and Head, Department of Neurology for giving us his support to
conduct this project.
There are no conflicts of interest
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PSYCHOSOCIAL PROBLEMS, QUALITY OF LIFE AND CAREGIVER BURDEN
AMONG STROKE CAREGIVERS IN INDIA
Key words: Psychosocial, stroke, quality of life, care giver stress, developing countries
Cover title: Psychosocial issues among stroke caregivers in India
Abstract: 250
Text: 2374
Number of references: 35
Number of Tables: 4
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Abstract
Background: Caring for stroke patients is demanding with caregivers experiencing considerable
burden for several years after the initial event. However, scant information is available from
developing countries. Aim: To study the quality of life (QoL), caregiver strain, anxiety and
depression experienced by stroke caregivers and their relationship with stroke characteristics.
Methods: Prospective hospital based study. Patients were interviewed after ≥1 month post-
stroke. WHOQoL-BREF was used to assess QoL. Anxiety and Depression was recorded using
Hospital Anxiety Depression Scale (HADS) and caregiver burden was evaluated using Modified
Caregiver Strain Index (MCSI). Statistical analyses was done using SPSS version 16.0.Results:
152 caregivers participated (women, 104 (68.4%); mean age 40.5±13.8 years [range 17 to 78]).
Mean duration of follow up was 18.9±26.7 months (range 1 to 147). The care givers had high
scores in the all the domains of QoL. Anxiety was seen in 72 (47%) caregivers and 66 (43%) had
depression. Caregiver strain influenced anxiety in the multivariate logistic regression analysis
(OR 0.23, CI 0.09-0.53, p=0.001). Ischemic stroke (OR 0.21, CI 0.08-0.57, p=0.002) and
psychological domain (OR 5.21, CI 1.88-14.45, p=0.001) were the predictors of depression.
Anxiety was the predictor of caregiver strain (OR 0.20, CI 0.08-0.47, p<0.0001). Conclusion:
Despite a good QoL there was a high prevalence of anxiety and depression with very high levels
of caregiver strain in our cohort. Caregivers particularly women need to be educated about
coping strategies regarding anxiety, depression and caregiver strain.
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Introduction
Stroke is a common disabling disease requiring the involvement of family caregivers’ for
patients’ successful rehabilitation.1
However, caring for stroke patients can be a stressful task
with caregivers reporting a considerable burden for several years after the initial
event.2,3
Enduring the patient's changes in the levels of ability and behavior can be very stressful,
thus exposing the caregiver to the risk of depression and physical vulnerability, especially if they
do not receive support from other family members, friends or society.4-10
Many encounter a
variety of problems including financial difficulties, social isolation, lack of information, and poor
physical and mental health.4-10
While a plethora of studies on caregivers and stroke patients have been done in developed
countries, but scant data is available from developing countries despite stroke being one of the
most common causes of disability and handicap in these nations. In India, family plays an active
role in taking care of a stroke patient. Hence the psychosocial problems among Indian stroke
caregivers could be different from other developed countries.The objective of this study was to
study the quality of life (QoL), caregiver strain, anxiety and depression experienced by stroke
caregivers, and to study the relationship between the above mentioned variables and stroke
characteristics.
Materials and methods
Study site
This study was conducted in the Stroke and Neurology Clinics of Christian Medical College and
Hospital (CMCH), Ludhiana, Punjab, India. CMCH is an 800-bed private sector teaching
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hospital catering not only to the medical needs of the people of Punjab, but also to patients from
neighboring states.11
Study subjects
We interviewed caregivers’ of stroke survivors, who had completed ≥1 month follow-up.
Caregivers were defined as “the person most closely involved in maintaining a person's ability to
live independently at home” [as defined by Oxford Handicap Scale].12
They were also living
with the patients and responsible for their daily care. Patients were asked to identify their
principal informal caregiver. However, in the absence of a primary caregiver, alternate informal
caregivers were considered. Caregivers’ with a history of psychiatric co-morbidity were
excluded.
Demographic details like age, gender, marital status, educational qualification, occupation, and
nature of relationship with patient, type of family and medical history were collected. The stroke
details like type of stroke, severity of stroke (National Institute of Health Stroke Scale-NIHSS),13
Oxfordshire stroke classification14
and functional outcome (modified Rankin scale, mRs)15
were
also compiled from stroke survivors by RR who was not involved in the management of patients.
Both JDP and RR were certified for NIHSS and mRs administration. Outcome was classified as
good (mRs 0-2) and bad (mRs 3-6). Joint family was defined as (extended family/ complex
family) multiple generations in a family living in a single house.16
Instruments
The following tools were used to interview the patients:
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WHO QOL – BREF17,18
The WHOQoL BREF is a 26 itemed self administered questionnaire in which the items
are rated on a 5 point scale. The domains which the QoL assesses are the physical,
psychological, social relationships, and environment domains. Translated version of the
questionnaire in the local language (Hindi) was used .19
The WHO QoL Hindi version is
a valid and reliable tool with a Cronbach alpha coefficient of 0.81. 19 Translation and
back translation of the questionnaire in Punjabi was also done. The four domain scores
are scaled in a positive direction, with a score range of 0-100, and with higher scores
denoting higher QoL. Raw domain scores need to be transformed to a 0-100 scale for
ease of comparison with other data sets. This transformation converts the lowest
possible score to 0 and the highest possible score to 100. Scores between these values
represent the percentage of the total possible score achieved.9, 10
Hospital Anxiety and Depression Scale 20
The Hospital Anxiety and Depression Scale (HAD Scale) includes two subscales, one for
depression and the other for anxiety, each comprising seven items relating to symptoms. Each
item is scored (0 to 3) according to severity, with a maximum possible score of 21 on each
subscale. The original validation study suggested that a score of 0-7 would indicate no case (no
anxiety or depression), 8-10 as borderline case and 11+ as case (presence of anxiety and/or
depression). Translated version of the questionnaire in the local language (Hindi) was used.
Permission was obtained to use the Punjabi version of the questionnaire.21 The Punjabi version is
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reliable and a valid measure of anxiety and depression. The Cronbach alpha coefficients revealed
high levels of internal consistency for the Punjabi version (0.86 for anxiety and 0.85 for
depression).21
Modified Caregiver Strain Index22
The Modified Caregiver Strain Index (MCSI) is a tool that can be used to screen for caregiver
strain with long term caregivers. It is a 13-question tool that measures strain related to care
provision. There is at least one item for each of the following major domains: employment,
financial, Physical, Social, and Time. This instrument can be used to assess individuals of any
age who have assumed the role of caregiver for an older adult. The Modified Caregiver Strain
Index is a version of the Caregiver Strain Index developed in 1983. The tool was modified and
developed in 2003. Scoring is 2 points for each ‘yes’, and 1 point for each ‘sometimes’ response.
The higher the score, the higher the level of caregiver strain. Translation and back translation of
the questionnaire in the local languages was done.
The study protocol was approved by the institutional ethics committee. All participants provided
informed consent. The questions were read to the illiterate caregivers by RR and the responses
were noted down. The questions were self administered for all the other caregivers.
Statistics
Statistical analyses were performed using SPSS Statistics version 16.0 (SPSS Inc.,
Chicago, III). The statistical measures used were frequencies, descriptive statistics,
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Pearson correlation and logistic regression analysis. Univariate analysis was done by
using Pearson correlation coefficient. Multivariate logistic regression analysis was done
using stepwise forward method to find out the predictors of WHOQoL, HADS and
MCSI. The variables of interest were WHOQoL (physical, psychological, social and
environmental domains), HADS (anxiety and depression), and MCSI. The variables that
were controlled include age, gender, type of family, income, duration of follow-up, type
of stroke and outcome (mRs). For the logistic regression analysis we used the median
values of continuous variables to divide into 2 groups in WHOQoL (physical,
psychological, social and environmental domains) and MCSI. For HADS, no case (no
anxiety or depression) was considered as one group and borderline cases and cases
(presence of anxiety and/or depression) were considered as another. In the WHOQoL
psychological domain, variables of interests like anxiety and depression were not
included in the model. A p value of <0.005 was taken for statistical significance after
using Bonferroni method for multiple comparisons.
Results
152 patients were interviewed over a period of 14 months from November 1st 2008 to February
1st
2010. We had approached 192 patients for the study. Forty patients were excluded (refused
consent). There were no significant differences between patients (n=152) studied and who were
excluded (n=40). Mean age (study cohort 59.1±13 years vs. excluded patients 60.8±19 years,
p=0.47) and gender (study cohort; men 100 (65.8%) vs. excluded patients 30 (75%), p=0.23).
The stroke outcome was also similar in both the groups (study cohort mRs 0-2, n=72 (47.4%) vs.
excluded patients mRs 0-2 n=21 (52.5%), p=0.56).
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Demography
The demographic details of the stroke survivors and their caregivers are given in Table 1. The
mean age for survivors was 59.1 ± 13.0 years (range 19 to 88 years) and 100 (65.8%) survivors
were men. The mean age for caregivers was 40.5 ± 13.8 (range 17 to 78) with 104 (68.4%)
caregivers being women. Caregivers were mostly wives (n= 54, 35.5%), followed by sons (n=
37, 24.3%), daughters in law (n=28, 18.4%), daughter (n=15, 9.9%), husband (n=7, 4.6%), sister
in law (n=4, 2.6%), brother (n=2, 1.3%), sister (n=1, 0.7%) , son in law (n=1, 0.7%), disciple
(n=1, 0.7%), grandson (n=1, 0.7%) and nephew (n=1, 0.7%). Majority of the patients lived in a
joint family (n=100, 65.8%).
Stroke characteristics
The stroke characteristics are given in Table 2. One hundred and thirteen patients (74.3%) had an
ischemic stroke. The mean duration of follow up was 18.9±26.7 months (range 1 to 147).
Coronary artery disease 36 (23.7%), hypertension 17 (11.2%), alcohol (current use) 14 (9.2%)
and diabetes mellitus 8 (5.3%) were the common risk factors among the caregivers. Seventy two
patients (47.4%) had good outcome.
WHO QoL
The mean transformed scores for the domains were: physical 57.6±13.5 (median-57, range 18 to
89), psychological 62.9±14.7 (median- 63, range 29 to 100), social 72.6±19.4 (median-75, range
0 to 100) and environmental 62.8±17.9 (median-63, range 19 to 100). Table 3 shows various
significant factors associated with WHOQoL. In the univariate analysis, presence of depression
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and caregiver burden was negatively associated with QoL in all the domains (physical,
psychological, social and environmental) i.e. patients with depression and caregiver burden were
more likely to have impaired QoL. Anxiety correlated negatively with social and environmental
domains of WHOQoL (Table 3). Other factors such as age, gender, education, occupation,
family type and type of stroke were not significant in the univariate analysis.
Hospital Anxiety and Depression Scale
Of the 152 patients, 72 (47%) had anxiety and 66 (43%) had depression. Thirty one (20%)
patients had mild anxiety, 29 (19%) moderate and 12 (8%) severe anxiety and 80 (53%) had no
anxiety. On the other hand, 34 (22%) had mild depression, 26 (17%) moderate depression, 6
(4%) had severe depression and 86 (57%) had no depression. Table 3 shows various significant
factors associated with HADS. Patient’s occupation and social domain of WHOQoL were
inversely associated with anxiety, whereas depression and caregiver strain positively correlated
with anxiety (Table 3). All domains of WHOQoL and caregiver gender were negatively
associated with depression. Presence of anxiety and caregiver burden positively correlated with
depression.
MCSI
Over 129 (85%) had caregiver strain in the present study. The mean score for MCSI was
12.6±6.77. Table 3 shows various significant factors associated with MCSI. Social domain
negatively correlated with caregiver strain. Anxiety and depression were found to be positively
associated with caregiver burden.
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Predictors of QoL, HADS and MCSI – Multivariate Logistic Regression Analysis
Multivariate logistic regression analysis (Table 4) showed depression as the predictor of QoL in
physical, social and environmental domains. Other demographic factors and stroke
characteristics were not significant.
Caregiver strain was found to be the predictor for anxiety (Table 4) in multivariate logistic
regression. Ischemic stroke and psychological domain were the predictors for depression. The
other variables were not significant.
In multivariate logistic regression analysis, (Table 4) only anxiety was the predictor of caregiver
strain. Caregiver age, gender, educational qualification, family and type of stroke were not found
to be significant.
Discussion
We explored the QoL, caregiver strain, anxiety and depression experienced by caregivers of
stroke survivors in Northwest India. Despite the overall good QoL, anxiety (47%) and depression
(43%) were quite prevalent among the caregivers. Majority of our cohort (85%) had caregiver
strain. Caregiver strain predicted anxiety, whereas ischemic stroke and psychological domain of
WHOQoL were the predictors of depression in the multivariate logistic regression analysis. Only
presence of anxiety was associated with caregiver strain in the multivariate logistic regression
analysis.
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Caregivers’ in our study were found to have high scores on all four domains of WHOQoL,
particularly the social domain. This is in contrast with studies from Nigeria, 23 Netherlands, 24 and
Sweden,25
where low scores were observed in caregivers’ for all the domains of QoL. The better
QoL among our caregivers’ could be attributed to the joint family system observed here in India.
Most of our caregivers belonged to joint family (66%). This helped them in sharing
responsibilities of caregiving by taking turns in looking after the needs of the patient, thereby
getting some time to spend on their own and in doing so relieving the amount of stress
experienced by them.
The presence of anxiety and depression among our caregivers were high as compared to other
studies from Newcastle2, London
26and Germany
27where anxiety and emotional distress were
prevalent, affecting about one-third at 3 to 5 years. A plausible explanation for this could be that
the majority of caregivers were spouses and women, belonging to a younger age group. Prior
studies from Netherlands28
and Germany29
found that female caregivers reported more anxiety
and depressive symptoms than did their men counterparts or caregivers belonging to any other
group.30, 31
The frequency of anxiety (47%) and depression (43%) was lower in our cohort as
compared to the Kolkata study from India (anxiety and depression 76%). 32 There were more
number of people who were working (42.4%) and who lived in a joint family (65.8%) in our
cohort as compared to the Kolkata study.32
The greater family support received by the caregivers
in our study would have influenced the difference in the prevalence of anxiety and depression.
We found that the caregivers in our study experienced high caregiver strain, a finding that is
supported by observations from Scotland 9 and United States of America. 33 As per studies from
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Scotland,9
Australia,34
and Norway,35
caring for disabled people is associated with a high risk of
disrupting caregivers’ work and leisure, family life and QoL. The Kolkata study showed a
significant financial and psychological stress among the caregivers.32
They had used a different
tool- Burden Assessment Schedule [BAS] to evaluate the care giver burden.
There are limitations in this study. Caregiver anxiety, depression and strain were assessed at
different periods after stroke for each caregiver. As a result, the longitudinal differences in the
same person could not be assessed. Secondly, this was not a community based study and the
findings of this study could be generalized to an urban North Indian population. Despite the
limitations this study offers new information regarding the psychosocial problems, QoL, and care
giver strain using standardized tools from Asia.
Conclusions
Our caregivers’ experienced better QoL. The QoL was less impaired because of the joint family
system since women share responsibilities of caring within the family. Despite a better QoL
there was a high prevalence of anxiety and depression with very high levels of caregiver strain in
our cohort. Caregivers particularly women need to be educated about coping strategies regarding
anxiety, depression and caregiver strain.
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References
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FINNSTROKE study. Stroke. 1998; 29: 368-72.
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11. Pandian, J D, Kalra G, Jaison A, Deepak S S, Shamsher S, Padala S, et al. Factors
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20. Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr
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22. Thornton M, Travis SS. Analysis of the reliability of the modified caregiver strain index.
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24. Visser-Meily A, Post M, Schepers V, Lindeman E. Spouses' quality of life 1 year after
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30. Jeng-Ru L, Hills GA, Kaplan S, Johnson PM. Burden among caregivers of stroke patients
in Taiwan. Top Geriatr Rehabil 1998; 14: 74-83.
31. Cantor MH. Strain among caregivers: A study of experience in the United States.
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32. Das S, Hazra A, Ray BK, Ghosal M, Banerjee TK, Roy T, et al. Burden among stroke
caregivers. Results of a community- based study from Kolkata. Stroke. 2010; 41:2965-
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33. Periard ME, Ames DB. Lifestyle changes and coping patterns among caregivers of stroke
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34. Anderson CS, Linto J, Stewart-Wynne EG. A population based assessment of the impact
and burden of caregiving for long-term stroke survivors. Stroke 1995;26: 843-49.
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Table shows demographic characteristics of stroke patients and care givers
†Lower <10 000 Indian Rupees (Rs) per
month; Upper, > Rs. 10 000 per month.
Variables Stroke Patients
n(%)
Caregiver
n (%)
Age
≤ 60 years
> 60 years
83 (54.6)
69 (45.4)
139 (91.4)
13 (8.6)
Gender
Male
Female
100 (65.8)
52 (34.2)
48 (31.6)
104 (68.4)
Education
No schooling
Schooling
22 (14.5)
130 (85.5)
11 (7.2)
141 (92.8)
OccupationEmployed
Unemployed
61 (40.7)
89 (59.3)
64 (42.4)
87 (57.6)†IncomeLower
Upper
75 (49.3)
77 (50.7)
75 (49.3)
77 (50.7)
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Table 2 shows stroke characteristics of the patients (n=152)
n %Type of Stroke
Ischemic
Hemorrhage
113
39
74.3
25.7*Oxfordshire classification
TACS
PACSLACS
POCS
23
7234
23
15.1
47.422.4
15.1
¶mRs
Good outcome 72 47.4Poor outcome 80 52.6
*TACS, total anterior circulation stroke; PACS, partial anterior circulation stroke;
LACS, lacunar syndrome; POCS, posterior circulation syndrome. ¶
– modified Rankin scale.
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Table 3 shows factors predicting WHOQoL, HADS and MCSI in univariate analysis
Variable r¶p value
WHOQOL
Physical domain AnxietyDepression
MCSI
-0.19-0.46
-0.27
0.02
<0.0001
0.001
Psychological domain Anxiety
Depression
MCSI
-0.20
-0.55
-0.31
0.01
<0.0001
<0.0001
Social domain Anxiety
Depression
MCSI
-0.29
-0.47
-0.34
<0.0001
<0.0001
<0.0001
Environmental domain Anxiety
Depression
MCSI
-0.32
-0.51
-0.40
<0.0001
<0.0001
<0.0001
HADS
Anxiety Patient age
Patient occupation
Caregiver gender
Caregiver occupation
Physical domainPsychologicaldomain
Social domain
Depression
MCSI
-0.19
-0.22
-0.16
0.16
-0.19-0.20
-0.29
0.56
0.42
0.02
0.0050.05
0.05
0.020.01
<0.0001
<0.0001<0.0001
Depression Caregiver gender
Type of stroke
Physical domain
Psychological domain
Social domain
Environmental domain
Anxiety
MCSI
-0.23
0.22
-0.46
-0.56
-0.47
-0.51
0.56
0.43
0.0050.006
<0.0001
<0.0001
<0.0001
<0.0001
<0.0001
<0.0001 MCSI Type of stroke
Social domain
Anxiety
Depression
0.22
-0.34
0.42
0.43
0.006
<0.0001
<0.0001
<0.0001
r-Pearson’s correlation coefficient. ¶
p<0.005 significant.
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Table 4 shows factors predicting WHOQoL, HADS and MCSI in multivariate logistic
regression analysis
Variables§Adjusted Odd’s
Ratio
95% CI*p value
WHOQOL
Physical domain Depression 3.11 1.42-6.84 0.005
¶Psychological
domain
MCSI 2.22 1.08-4.54 0.03
Social Domain Depression 4.29 1.90-9.68 <0.0001Environmental domain Depression 5.26 2.21-12.49 <0.0001
HADS
Anxiety Caregiver age
MCSI
10.50
0.23
1.47-74.88
0.09-0.53
0.02
0.001
Depression Caregiver
gender
Type of stroke
Psychological
domain
2.59
0.21
5.21
0.98-6.86
0.08-0.57
1.88-14.45
0.05
0.002
0.001
MCSI Social domainAnxiety
0.290.20
0.11-0.810.08-0.47
0.02<0.0001
¶Anxiety and depression were not included in the model.
§Variables adjusted include, age, gender, income,
education, family type, stroke type, duration of follow-up and outcome (mRs).*p<0.005 significant.
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