Coping and caring: Support for family caregivers of stroke survivors

Article (PDF Available)inJournal of Clinical Nursing 16(7B):133-43 · August 2007with86 Reads
DOI: 10.1111/j.1365-2702.2006.01711.x · Source: PubMed
Abstract
This study examines the physical and emotional burden experienced by caregivers of stroke survivors, compared with caregivers of patients having neurological diseases. Stroke survivors have residual neurological impairment, which requires long-term support and care. Anxiety, depression and poor physical health are common sequelae among family caregivers of stroke survivors. There is a reasonably consistent association between patients' levels of disability and emotional state and the emotional distress of their caregivers. A convenience sample of 47 families was recruited: of the 47 families, 23 had a member who suffered from stroke and 24 had a member with neurological disease. Two interviews were conducted at three and six months after the occurrence of the index stroke or neurological disease. When the two groups of caregivers were compared for anxiety, depression and physical health status after care giving, the caregivers of stroke patients demonstrated higher levels of anxiety and depression than their counterparts in the neurological disease group (p < 0.001). However, there was no significant difference in physical health status between the two groups. Educational attainment, patient group and physical and cognitive impairment of the patients were the predictors of anxiety and the depressive status of the caregivers, while their age and level of depression contributed significantly to their physical health status. The physical and emotional well-being of two groups of family caregivers in a neurosurgical unit were compared in the caring context. The caregivers of stroke survivors are at a greater risk of developing poor physical and emotional health than the caregivers of patients having neurological diseases. The results illustrated that enhanced discharge planning and nurse follow-up sessions are considered essential in maintaining the well-being of the stroke caregivers and bridging the gap between the hospital and the community.

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ORIGINAL ARTICLE doi: 10.1111/j.1365-2702.2006.01711.x
Coping and caring: support for family caregivers of stroke survivors
Susan KY Chow PhD, RN
Assistant Professor, School of Nursing, The Hong Kong Polytechnic University, Hong Kong, China
Frances KY Wong PhD, RN
Professor, School of Nursing, The Hong Kong Polytechnic University, Hong Kong, China
Christopher YF Poon MBBS, FRCS, FCSHK, FHKAM
Consultant, Department of Neurosurgery, Kwong Wah Hospital, Hong Kong, China
Submitted for publication: 27 December 2005
Accepted for publication: 1 May 2006
Correspondence:
Susan KY Chow
School of Nursing
The Hong Kong Polytechnic University
Hong Kong
China
Telephone: þ852 27666775
E-mail: hssusan@polyu.edu.hk
CHOW SKY, WONG FKY & POON CYF (2007)CHOW SKY, WONG FKY & POON CYF (2007)
Journal of Nursing and Health-
care of Chronic Illness in association with Journal of Clinical Nursing 16, 7b, 133–
143
Coping and caring: support for family caregivers of stroke survivors
Aims and objectives. This study examines the physical and emotional burden
experienced by caregivers of stroke survivors, compared with caregivers of patients
having neurological diseases.
Background. Stroke survivors have residual neurological impairment, which
requires long-term support and care. Anxiety, depression and poor physical health
are common sequelae among family caregivers of stroke survivors. There is a rea-
sonably consistent association between patients’ levels of disability and emotional
state and the emotional distress of their caregivers.
Design. A convenience sample of 47 families was recruited: of the 47 families, 23 had
a member who suffered from stroke and 24 had a member with neurological disease.
Method. Two interviews were conducted at three and six months after the occurrence
of the index stroke or neurological disease.
Results. When the two groups of caregivers were compared for anxiety, depression
and physical health status after care giving, the caregivers of stroke patients demon-
strated higher levels of anxiety and depression than their counterparts in the neuro-
logical disease group (p < 0Æ001). However, there was no significant difference in
physical health status between the two groups. Educational attainment, patient group
and physical and cognitive impairment of the patients were the predictors of anxiety
and the depressive status of the caregivers, while their age and level of depression
contributed significantly to their physical health status.
Conclusion. The physical and emotional well-being of two groups of family caregivers
in a neurosurgical unit were compared in the caring context. The caregivers of stroke
survivors are at a greater risk of developing poor physical and emotional health than
the caregivers of patients having neurological diseases.
Relevance to clinical practice. The results illustrated that enhanced discharge planning
and nurse follow-up sessions are considered essential in maintaining the well-being of
the stroke caregivers and bridging the gap between the hospital and the community.
Key words: advanced practice, carers, chronic illness, discharge planning
Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd 133
Introduction
Stroke is the third leading cause of death in Hong Kong and
causes the most chronic morbidity and disability among its
victims. In Hong Kong, stroke accounted for 9Æ4% of the total
crude death rate in 2004 (Hong Kong Hospital Authority
2005). For most stroke survivors, permanent cognitive and
functional impairment are common sequelae after the acute
phase. Caregivers, most often spouses, daughters or daughters-
in-law, may experience anxiety and depression in assuming the
caregiver role. This study highlights the physical and emo-
tional burden experienced by the stroke caregivers and
suggests the need for discharge planning to meet caregivers’
needs after the patient has been discharged home.
When a family member is affected by a disease that causes
disability, this is considered a critical event in the life of both the
person afflicted with the disease and the family. A population-
based assessment on the burden of stroke on caregivers
concluded that they may experience unacceptably high levels
of burden, leading to isolation and exhaustion (Anderson et al.
1995). In 1999, Bugge et al. revealed that the strain on
caregivers is both complex and multi-layered. Stroke caregivers
were under considerable strain in the early poststroke phase
and the amount of strain increased with time. There was a fairly
consistent association between patients’ level of disability and
emotional state and the emotional distress of their caregivers
(Schulz & Tompkins 1988, Martin et al. 1998, Reimer et al.
1998). Approximately 40% of the stroke caregivers reported
somatic symptoms attributed to stressful, health-related care
tasks (Sit et al. 2004). Health care professionals working in
neurological units should be aware that caring for stroke
victims both increases the prevailing level of stress and
precipitates further stress for the caregivers. Appropriate
support and care should be provided to the caregivers to
enhance better coping with the difficult life situation.
Other than emotional distress, caregivers’ physical health
is an important concern when they are responsible for
providing assistance in the basic activities of daily living for
the stroke survivors. Wright et al.’s study (1999) reported
no significant difference in physical health between those
caring for stroke survivors and those caring for victims of
Alzheimer’s disease, although the stroke caregivers demon-
strated significantly higher levels of depression than the
comparison group. Other researchers found that caregivers
with physical symptoms of ill health were more likely to be
depressed (Tompkins et al. 1988). Beth and Haley (1999)
advised that further research is needed to identify factors
related to caregivers’ physical health systematically and to
determine possible measures to prevent their physical
health from declining.
Most stroke caregiving studies are cross-sectional, paying
little attention to the long term consequences in caregiving. A
structured and systematic follow-up of caregivers’ health is
deemed necessary, as emotional health can be expected to
decline over time in relation to patients’ prolonged recovery
progress (Lore et al. 1999). At the later stages, after stroke,
the percentage of caregivers under considerable strain was
clear and the proportion increased with time (Bugge et al.
1999). Other studies stated that the level of depression
among stroke caregivers did not seem to decrease during
illness trajectories (Kotila et al. 1998, Scholte op Reimer et al.
1998, Tompkins et al. 1988, Han & Haley 1999, Wright
et al. 1999, Palmer & Glass 2003). Teel et al. (2001)
commented that many of the studies do not account for
changes in an individual’s experience to uncover the associ-
ation of caregiving experiences at different time intervals.
Therefore, research is needed to track the longitudinal
changes on the emotional strain of caregivers.
A review of the literature shows that most of the studies
used a non-comparable design to deduct their findings. A
study correlating the psychological well-being of stroke
caregivers with the norm value of the general population
showed that the former have a significantly poorer psycho-
logical well-being than the norm values (Warleby et al. 2000).
Wright et al.’s study (1999) used healthy caregivers and
caregivers of persons having Alzheimer’s disease as the
control groups to make comparisons in evaluating the
emotional and physical health of the spouses of stroke
caregivers. Kim (2001) compared the well-being of daughter
caregivers with that of daughter-in-law caregivers in Korean
families. An exhaustive review of the literature on caregiving
has revealed a notable lack of publications focusing on
evaluating the burden of stoke caregivers with the compar-
ison group. It is recommended that comparisons with results
of studies in other patient groups be made, to help explain
the specific disease–related caregiving burden (Scholte op
Reimer et al. 1998).
Given these findings, this study explores the physical and
emotional health of stroke caregivers in the sociocultural
context of Chinese families in Hong Kong. This study used a
comparative approach with the non-stroke patient group to
explain the specific disease–related caregiving burden. In
contrast to the large number of cross-sectional studies in the
literature, this study enabled the assessment of changes in the
outcome variables in the stroke caregivers across time.
Aim and research questions
The aim of this study is to examine the physical and
emotional health of the stroke family caregivers compared
SKY Chow et al.
134 Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd
with the caregivers of patients with other, non-stroke related
neurological diseases in Hong Kong.
Research questions
1 Do stroke caregivers report poorer physical health than
non-stroke caregivers?
2 Do stroke caregivers report poorer emotional health non-
stroke caregivers?
3 Do patients’ functional and cognitive status relate to
caregivers’ emotional and physical well-being?
4 Can caregivers’ characteristics and patients’ impairments
predict caregivers’ physical and emotional strain over
time?
Research method
Study design
The study was a descriptive, comparative study carried out in
a Hong Kong hospital from March 2003 to April 2004. A
cohort of caregivers of stroke patients and caregivers of
patients with neurological diseases was recruited sequentially
from a general regional hospital. The study only included
informal caregivers (i.e. a spouse, a family member or a
friend) who identified themselves as having primary respon-
sibility for their patients. The caregivers of patients having
neurological diseases comprised the comparison group. In the
neurosurgical unit, the stroke patients were undergoing
prolonged rehabilitation processes while other patients, such
as those recovering from neurosurgical procedures, did not
necessarily need lengthy rehabilitation services. For most of
the stroke survivors, permanent cognitive and functional
impairment are common sequelae after the acute phase. As a
result, stroke caregivers suffer more demanding and stressful
caregiving experiences than non-stroke caregivers. Different
research instruments were used to assess these caregivers in
terms of their physical and emotional health after assuming
caregiving responsibilities. Face-to-face interviews were con-
ducted in the hospital when they returned to hospital for
follow-up at three months (T1) and at six months (T2) after
the occurrence of the index stroke or other neurological
condition. The family caregivers were excluded from the
study if patients were hospitalized three months after stroke.
Study population
The study group consisted of caregivers of individuals who had
(i) with medical evidence of haemorrhagic stroke (including
subarachnoid haemorrhage), (ii) no evidence of co-existing
known malignant or other rapidly progressive medical disease
and (iii) who were in-patients in the hospital’s neurosurgical
unit. The comparison group consisted of caregivers of individ-
uals (i) with medical evidence of neurological diseases such as
glioma, meningioma, pituitary tumour or acoustic neuroma,
patients with head injuries and patients recovering from
neurosurgical procedures and with functional or mobility
impairment and (ii) patients with no evidence of co-existing
known malignancy or other rapidly progressive medical
disease. All the caregivers of these patients who were willing
to participate were recruited sequentially from the department.
The caregivers in the present study were Hong Kong Chinese
residents with no reported history of psychiatric illness,
neurological disease or cognitive impairment.
Assessment of patients
The patients were evaluated using two tests to determine their
disabilities and cognitive status.
The cognitive status of a patient was measured using the
Mini-Mental Status Examination (MMSE). The MMSE is a
widely used scale with good psychometric properties. Signifi-
cant cognitive impairment was defined as a score of 23 or less
(Folstein et al. 1975). The Chinese version of the MMSE is
considered reliable with Cronbach’s alpha coefficient ¼ 0Æ86
and test-retest reliability coefficient ¼ 0Æ78. The canonical
correlation coefficient ¼ 0Æ94 indicated the ability to classify
94Æ9% of the cases in the demented group (Chiu et al. 1994).
Disability in the activities of daily living was measured
using the Barthel Index (BI). The BI is one of the oldest and
most commonly used measures in stroke research and
practice. The short version, the Barthel score of 20, was
used in the study (Collin et al. 1988). Ho and Woo (1994)
suggested that the total score of 20 represents full independ-
ence in the activities of daily living, the scores of 15–19
represent mild functional disability, while scores of 14 or less
represent severe functional disability. The Chinese version of
the scale was validated by Sit 2001 with an inter-rater
reliability coefficient of 0Æ99. The interpretation guidelines
were also revised to become culturally specific to the Chinese
population.
Assessment of caregivers
On the basis of a comprehensive literature review, two
outcome measures were selected.
To assess caregivers’ emotional health, the Hospital
Anxiety and Depression Scale (HADS) was used. The scale
proved to be a useful device for assessing patients’
emotional state as well as for assessing the presence or
Original article Coping and caring
Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd 135
absence of clinically significant degrees of anxiety and
depression. The instrument consists of two subscales; a
higher score indicates a higher level of anxiety and
depression (Zigmond & Snaith 1983). The Chinese version
of HADS was developed by Leung et al. (1992). The
translated version demonstrated good agreement with the
English original, with good to moderate correlations among
the subscales from 0Æ49–0Æ80. Cronbach’s alpha coefficient
for the anxiety and depression subscales was calculated and
found to be 0Æ81 and 0Æ74, respectively, for the Chinese
version, indicating good internal consistency.
Physical health was measured using the short form of the
Multilevel Assessment Inventory (MAI), developed overseas.
The MAI is an eight-item self-reported scale designed to
measure general health status, with a higher score signifying
better physical health. The instrument corresponds signifi-
cantly with other physical health scales (Lawton et al. 1982).
The scale was translated into Chinese by the research team
and was tested in a sample of subjects. The translated version
demonstrated good agreement with the English original, with
good to moderate correlations among the items from 0Æ70–
0Æ86. Reliability was established using the test-retest reliab-
ility method over a period of one week and the reliability
coefficient was 0Æ95, which indicates high repeatability. The
internal consistency was determined by Cronbach’s alpha.
The alpha coefficient was 0Æ83 showing high internal consis-
tency of the scale.
Information on caregivers’ demographic characteristics,
which included age, sex, family income, duration of caregiv-
ing, educational background and relationship with the
patients was collected during interview at T1.
Ethical considerations
The study was approved by the Research Ethics Committees
of the hospital and the university with, which the principal
and the co-investigators are affiliated. The participants were
asked to sign a consent form if they agreed to participate in
the study. They could withdraw from the study any time
during the process.
Data analysis
Data were initially analysed using the Statistical Package
for Social Sciences (SPSS), at a descriptive level. The
Mann–Whitney U-test was used to compare the physical
and emotional status of the two groups of caregivers as
well as the functional and cognitive impairment of the
patients. The Wilcoxon Signed Rank test was used for
individual group comparisons at T1 and T2. Chi-square
tests were used to examine the relationship of the demo-
graphic variables. The Spearman’s rho correlation analysis
was performed to identify factors independently associated
with the emotional and physical status of caregivers prior
to multiple regression analysis in a staged process.
Results
A sample of 47 families was recruited; 23 families had a
member who had suffered a stroke, while 24 families
comprised the comparison group. There were 47 caregivers,
of which 28 were women and 19 were men.
Caregivers’ and patients’ characteristics
The gender, length of caregiving, age, education, family
income, employment and living conditions of the two
groups of caregivers were compared and there were no
significant statistical differences between the two groups
except in terms of family income. The study group families
were less affluent than the comparison group (v
2
¼ 7Æ648,
p < 0Æ05). For caregivers’ relationship with the patients,
approximately half of the caregivers were the spouses who
accounted for 54Æ5% and 54Æ2% for the study and
comparison groups, respectively. Other caregiver relation-
ships included adult children (40Æ9%) for the study group
and parents (16Æ7%) for the comparison group. For the
care recipients, no significant statistical differences were
found in gender and age.
With regard to patients’ disabilities, the mean score from
the MMSE test at T1 was 9Æ09 and 21Æ29 for patients in the
study and comparison groups, respectively. At T2, the scores
were 9Æ23 and 21Æ54, respectively. For the measurement of
functional capacity, the BI scores for the study and compar-
ison groups were 5Æ91 and 15Æ71 at T1 and 7Æ23 and 15Æ83 at
T2, respectively. The Mann–Whitney U-test found significant
differences in the cognitive and functional status between the
two groups of patients at Time 1 and Time 2 (p < 0Æ005).
For individual group comparisons at T1 and T2, the
Wilcoxon Signed Rank test revealed significant differences
in the functional status of the stroke patients over time. The
characteristics of patients and caregivers are shown in
Tables 1–3.
Physical health and the prevalence of anxiety and
depression among caregivers
The Mann–Whitney U-test showed that there was a signifi-
cant difference in the level of anxiety and depression between
the two groups of caregivers. The stroke caregivers had a
SKY Chow et al.
136 Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd
higher level of anxiety and depression than their counterparts
(p < 0Æ001). As to physical health, the two groups showed
no significant difference.
For emotional and physical status at T2, it was found that
stroke caregivers continued to demonstrate a higher level of
anxiety and depression six months after the index stroke, in
comparison with that of the non-stroke caregivers
(p < 0Æ05). Despite the huge differences in the anxiety and
depression levels between the two groups of caregivers, no
significant difference was found in their general physical
health status. There was no significant difference in health
status between the stroke caregivers and the non-stroke
caregivers at both T1 and T2, even though the non-stroke
caregivers had a slightly better physical health score than the
non-stroke caregivers.
For individual group comparisons between T1 and T2, the
Wilcoxon sign ranked test indicated that the stroke caregivers
showed no significant decline in depression and anxiety over
time. Similarly, the caregivers in the comparison group did
not demonstrate less anxiety or depression during the course
of the rehabilitation process. Both groups of caregivers had a
similar level of anxiety and depression in different phases,
regardless of the physical dependency and cognitive defects of
Table 2 Patient characteristics
Variables
Patient with
stroke
Comparison
group
Chi-square
test p-value
Sex
Male (%) 45Æ558Æ30Æ38
Female (%) 54Æ541Æ7
Age
Less than 50 (%) 31Æ841Æ60Æ57
Between 51 and 60 (%) 9Æ116Æ7
Over 61 (%) 59Æ141Æ6
Table 3 Functional and cognitive status of patients
T1 mean Three months (SD) T2 mean Six months (SD) Z p-value
MMSE
Patient with stroke 9Æ09 (10Æ78) 9Æ23 (10Æ93) 0Æ67 0Æ51
Patient without stroke 21Æ29 (9Æ43) 21Æ54 (9Æ77) 0Æ39 0Æ69
U, P-value* 3Æ40 <0Æ001 3Æ01 <0Æ005
Barthel Index
Patient with stroke 5Æ91 (5Æ02) 7Æ23 (5Æ49) 3Æ21 0Æ001
Patient without stroke 15Æ71 (5Æ13) 15Æ83 (5Æ35) 0Æ38 0Æ71
U, P-value* 4Æ61 <0Æ001
4Æ10 <0Æ001
*Mann–Whitney U -test for between group comparisons at each time period.
Wilcoxon sign-ranked test for within group comparisons at each time period.
Table 1 Demographic characteristics of
caregivers (n ¼ 47)
Variable
Caregivers of stroke
patients (n ¼ 23)
Caregivers of comparison
patients (n ¼ 24)
Chi-square
test p-value
Sex
Male (%) 40Æ945Æ80Æ73
Female (%) 59Æ154Æ2
Accommodation
Public housing (%) 40Æ933Æ30Æ23
Private housing (%) 59Æ166Æ7
Age
Less than 50 (%) 59Æ054Æ20Æ45
Between 51 and 60 (%) 27Æ325Æ0
Over 61 (%) 13Æ620Æ8
Education
Primary or below (%) 22Æ729Æ20Æ63
Secondary (%) 68Æ254Æ2
Tertiary (%) 9Æ116Æ7
Monthly family income
$5000–7000 (%) 36Æ44Æ20Æ02
$7000–10 000 (%) 50Æ079Æ2
>10 000 (%) 13Æ616Æ
7
Original article Coping and caring
Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd 137
the patients. There was no significant difference between the
two groups in their level of physical wellness and the
caregivers’ physical health remained stable over time. Table 4
demonstrates the emotional and physical health status of the
two groups of caregivers.
Health status of caregivers before and after caregiving
Regarding caregivers’ physical health status before and after
caregiving, the caregivers were asked to indicate their self-
rated physical health on a four-point Likert scale before they
assumed the role of primary caregiver. The purpose was to
compare this with one of the questions in the MAI on their
health status at T1 and T2. For the stroke caregivers, the
Wilcoxon Sign Rank test showed significant changes in the
physical health status after assuming the role of family
caregivers (p < 0Æ05). The caregivers reported that their
health was worse than one year prior to becoming the
primary caregiver. The result was significant at T1 and T2
comparison (p < 0Æ05). For the non-stroke caregivers,
the results were similar and caregivers reported a signifi-
cant decrease in the physical well being after caregiving
(p < 0Æ05).
Correlations between patients’ functional and cognitive
status and caregivers’ health
Univariate correlations were used to examine the linear
relationships between patients’ functional and cognitive
status and caregivers’ health. The Spearman’s Rho correla-
tion analysis revealed that patients’ BI and MMSE were
negatively correlated to caregivers’ anxiety and depressive
status at T1 and T2. The coefficients varied between 0Æ40 to
0Æ55, indicating moderate negative correlations. There was
no significant correlation between MMSE, BI and caregivers’
physical health at T1. However, there was weak to moderate
negative correlation between MMSE and caregivers’ physical
health at T2. The results of the univariate analysis are shown
in Table 5.
Predictors of caregiver’s emotional and physical
health status
Based on the results of the correlation analysis in Table 5, the
first analysis used caregivers’ depressive status at T1 as the
dependent measure. A series of multiple regression proce-
dures was then performed to examine the contribution
of selected correlating patient and caregiver variables (with
p-value of 0Æ05 or less from the univariate analyses) on
caregivers’ physical and emotional health status at T1 and
T2. Anxiety, depression and physical health scores were used
as dependent variables for the predictions. The predictive
variables including the patient group (stroke and non-stroke),
MMSE and BI scores, patient’s age, caregiver’s age, caregiv-
er’s educational attainment and family income. Caregivers of
patients with and without stroke were coded as 1 and 0,
respectively, and entered into the regression model. Nominal
level or categorical variables were coded using dummy coding
(Munro 2001). ‘1’ indicated that caregivers of stroke patients
belonged to the chosen group. The stepwise regression model
was significant (adjusted R
2
¼ 0Æ38), with caregivers of
stroke patients and caregivers’ education level being the
significant predictors (p < 0Æ05). The second analysis used
T1 caregivers’ anxiety status as the dependent variable. The
regression model was significant (adjusted R
2
¼ 0Æ53) and
caregivers’ physical health status (p < 0Æ001) and BI
(p < 0Æ001) were the significant predictors contributing to
caregiver’s anxiety status.
Table 4 Prevalence of anxiety depression
and physical health among caregivers at
T1 and T2
T1
mean
Three
months (SD)
T2
mean (SD)
Six
months Z p-value
Anxiety (HADS)
Stroke caregivers 7Æ95 (3Æ39) 7Æ86 (2Æ91) 0Æ25 0Æ79
Non-stroke caregivers 4Æ54 (3Æ39) 4Æ83 (3Æ41) 1Æ35 0Æ17
U, p-value* 3Æ50 <0Æ001 3Æ15 <0Æ005
Depression (HADS)
Stroke caregivers 9Æ05 (4Æ76) 8Æ91 (3Æ46) 1Æ96 0Æ85
Non-stroke caregiver 3Æ50 (3Æ49) 3Æ58 (3Æ63) 0Æ51 0Æ61
U, p-value*
3Æ92 <0Æ01 4Æ15 <0Æ001
Physical health (MAI)
Stroke caregivers 23Æ55 (2Æ97) 23Æ36 (2Æ67) 1Æ17 0Æ24
Non-stroke caregivers 24Æ53 (2Æ40) 24Æ46 (2Æ36) 1Æ13 0Æ26
U, p-value* 1Æ11 0Æ27 -1Æ35 0Æ18
*Mann–Whitney U -test for between group comparisons at each time period.
Wilcoxon sign-ranked test for within group comparisons at each time period.
SKY Chow et al.
138 Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd
In the following analysis, the caregivers’ depression and
anxiety status at T2 were used as the dependent variables.
Physical health status, educational attainment and being
caregivers of stroke patients were found to be the signifi-
cant predictors for caregivers’ anxiety status, with the
adjusted R
2
¼ 0Æ47. For depression status, being caregivers
of stroke patients, BI and caregivers’ educational attain-
ment were the independent predictors, with adjusted
R
2
¼ 0Æ50. All the significant predictors in the model had
p < 0Æ05.
With regard to the model on caregivers’ physical health,
the final analysis was derived from the physical health status
of the caregivers at T1 and T2. In both analyses, the
significant predictors were caregivers’ age and depressive
status, with adjusted R
2
¼ 0Æ40 and 0Æ30 at T1 and T2,
respectively. The caregiver’s age and depressive status were
negatively correlated with the physical health status. The
models of regression analysis are shown in Table 6.
Discussion
This study is the first comparative study to highlight the
changes in family caregivers’ emotional and physical health in
sub-acute and non-acute phases of stroke trajectory. The
Table 5 Correlations between patients’ functional and cognitive status and caregivers’ health
T1 (three months) T2 (six months)
Education Income Caregiver’s age BI MMSE Education Income Caregiver’s age BI MMSE
Anxiety 0Æ43 0Æ40 NS 0Æ50 0Æ44 0Æ45 0Æ46 NS 0Æ40 0Æ45
Significant (2-tailed) 0Æ05 0Æ05 0Æ00 0Æ05 0Æ01 0Æ01 0Æ01 0Æ01
Depression 0Æ34 0Æ38 NS 0Æ53 0Æ41 0Æ36 0Æ45 NS 0Æ55 0Æ50
Significant (2-tailed) 0Æ01 0Æ05 0Æ00 0Æ05 0Æ05 0Æ01 0Æ
00 0Æ00
Physical health 0Æ45 0Æ38 0Æ52 NS NS 0Æ40 0Æ38 0Æ44 NS 0Æ40
Significant (2-tailed) 0Æ05 0Æ05 0Æ00 0Æ01 0Æ01 0Æ01 0Æ01
Spearman’s rho correlations show only variables with significant correlation at the 0Æ05 level (2-tailed).
NS indicates non-significant.
Table 6 Regression analyses for physical
and emotional health outcomes at
T1 and T2
Significant predictors
Adjusted
R
2
Regression
parameter (b) t-Statistics p-value Tolerance VIF
T1 (three months)
Depression
Caregivers group 0Æ38 0Æ57 4Æ90 0Æ000 0Æ99 1Æ002
Education level 0Æ33 2Æ81 0Æ007 0Æ99 1Æ002
Anxiety
Physical health 0Æ53 0Æ58 5Æ75 0Æ000 0Æ99 1Æ004
Barthel index 0Æ43 4Æ18 0Æ000 0Æ99 1Æ004
Physical health
Caregiver’s age 0Æ40 0Æ51 4Æ38 0Æ000 0Æ94 1Æ07
Depression status 0Æ33 2Æ86 0Æ007 0Æ94 1
Æ07
T2 (six months)
Depression
Caregivers group 0Æ50 0Æ49 4Æ07 0Æ001 0Æ76 1Æ30
Education level 0Æ34 3Æ21 0Æ003 0Æ98 1Æ02
MMSE 0Æ26 2Æ13 0Æ039 0Æ76 1Æ31
Anxiety
Physical health 0Æ47 0Æ33 2Æ79 0Æ008 0Æ81 1Æ24
Caregivers group 0Æ40 3Æ58 0Æ001 0Æ94 1Æ06
Education level 0Æ34 2Æ86 0Æ007 0Æ84 1Æ19
Physical health
Caregiver’s age 0Æ30 0Æ38 3
Æ03 0Æ004 0Æ93 1Æ08
Depressive status 0Æ35 2Æ77 0Æ008 0Æ93 1Æ08
VIF, variance inflation factor, the higher the VIF value, the more unstable the regression esti-
mation.
Original article Coping and caring
Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd 139
higher level of anxiety and depression experienced by the
stroke caregivers indicates the need for nurses in neurological
units to provide enhanced discharge planning for this group
of patients. The families need assistance in learning how to
maintain their own health whilst dealing with a new and
difficult life situation. This is particularly relevant for older
caregivers and for caregivers who are less educated. A well
designed discharge plan with continuity of care may benefit
both patients and caregivers in the long term caregiving
process.
Emotional and physical health status of stroke caregivers
Our study showed that stroke caregivers experience a higher
level of anxiety and depression than non-stroke caregivers
during the rehabilitation phases. The borderline range of
having an anxiety or depression score of 8–9 is indicative of a
probable mood disorder (Zigmond & Snaith 1983). The
stroke caregivers did not demonstrate many overt feelings of
anxiety but suffered from a borderline depressive disorder
over time. The results indicate that stroke caregivers did not
appear to cope with the unexpected, caregiving role over the
six month investigation period. This finding is consistent with
several studies conducted on caregivers’ experiences, with
their risk of burnout arising from caregiving in the postacute
phase of stroke (Anderson et al. 1995, Kotila et al. 1998,
Scholte op Reimer et al. 1998, Bugge et al. 1999, Han &
Haley 1999, Wright et al. 1999). The result also corroborated
Thompkins et al.’s finding (1988) that depression during the
first phase of stroke predicts depression later on. Caregivers
with greater depressive symptoms soon after beginning to
care for stroke survivors were more likely to be at risk for
future depression.
Our findings showed no significant difference in the
physical health between the two groups of caregivers during
the caretaking phases. Nonetheless, the result indicated that
both groups perceived their health had deteriorated as
compared with a year earlier. Studies in caregivers of patients
with stroke have often suggested that it is predominantly
caregivers with poor physical status that are likely to have
poor emotional health outcomes themselves. However, Clark
et al. (2004) argue that family dysfunction is associated with
a poorer mental health of the caregiver but not with the
caregiver’s physical health. Caregivers within more effectively
functioning family systems are more likely to receive
emotional support and less likely to feel the burden of caring
for the sick family member, irrespective of their own physical
health status. In addition, Draper et al. (1992) found no
significant relationship between caregivers’ self-rated health
and their depression. Most of the caregivers were satisfied
with the current life situation despite the decline in physical
health. The above research suggests that whilst the depressive
status of the caregivers may be attributable to deterioration in
their physical health, inadequate social and family support do
contribute to poor psychosocial health.
Discharge planning for the caregiving families
This study provides future directions for promoting the
health of the stroke caregivers in the long rehabilitation
phases. Having a high level of anxiety and depression
compromises caregivers’ potential and motivation to properly
fulfil their caregiving role, thus affecting the way they cope
with the challenges of caregiving (Bluvol & Ford-Gilboe
2004). Our results illustrated that stroke caregivers experi-
enced significantly higher emotional distress than non-stroke
caregivers at three and six months after the stroke survivor
had been discharged from hospital. The caregivers’ quality of
life is considered an important factor in the performance of
their caregiving responsibilities. Caregiving families should
be given the necessary support to maintain their own physical
health status and to deal with the psychosocial problems
arising from their new caregiving role. Discharge planning
and follow-up are necessary for all families of stroke
survivors in order to identify potential emotional and
physical problems before they leave the hospital and once
they are back at home. Discharge planning includes four
phases, namely: patient assessment, development of a dis-
charge plan, family and patient education and follow-up
evaluation (Mamon et al. 1992). The transitional model of
care developed by Wong et al. (2005) summarized nursing
care elements into four ‘C’s, namely: comprehensive assess-
ment and planning, continuity of care, coordination of care
and interdisciplinary collaboration. The provisions of trans-
itional care to patients, alongside nurse follow-up on family
caregivers, are able to stabilize family health in long-term
rehabilitation. These interventions are able to provide ongo-
ing support to improve families’ capabilities in adjusting to
the unexpected life events and hence reduce the physical and
psychological burden on family caregivers.
Continuity of care
The physical health of caregivers is often neglected by health
care providers. Although the two groups of caregivers did not
differ in the physical health status, they reported poorer
health after taking up the caregiving role. During the follow-
up interviews with family members, the assessment required
the use of skilled nursing techniques and observations rather
than solely relying on research instruments. Some minor
SKY Chow et al.
140 Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd
symptoms, such as headache, general malaise and fatigue
indicate the health status and level of decline in the physical
wellness of the caregivers. Caregiving is a demanding task
and substantial support to alleviate physical fatigue related to
caregiving is an important aspect of nursing practice. Nurses
are required to extend all the support they can to the stroke
patient’s family, as this is an important way of achieving an
optimal level of role performance. Besides working with
caregivers, other interdisciplinary input includes raising
community resources to enable physiotherapy and occupa-
tional therapy services at home. These services help give
greater functional independence to stroke survivors and
subsequently improve caregivers’ physical wellness. The level
of anxiety and depression of caregivers is linked to the health
status of the stroke patients; only when these patients have
fewer residual symptoms, will the levels of anxiety and
depression of caregivers be reduced.
Predictors of physical and emotional well being
of caregivers
To determine the factors contributing to depression in stroke
caregivers, a variety of caregiver and patient factors were
studied as possible predictors. Previous studies demonstrated
that caregivers’ depressive symptoms were significantly rela-
ted to patients’ functional and cognitive impairment status
(Palmer & Glass 2003, Sit et al. 2004, Anu Berg et al. 2005;
Suh et al. 2005). With regard to predictions on social
variables, the studies of Grant et al., offered different
conclusions on stroke caregivers’ education and demographic
characteristics in relation to depression (Grant et al. 2000,
2001, 2004). The most recent study (Grant et al. 2004)
reported that the level of depression in caregivers was
unrelated to their demographic characteristics. There are
inconsistent findings in the literature in predicting the
relationship between emotional status and demographic
characteristics.
The families of stroke survivors taken as a sample in the
study were less affluent than those in the comparison group.
Family income, caregiver’s age, educational attainment and
living environment are factors that can affect caregivers’ level
of anxiety and depression during caregiving. Other than
demographic variables, personality, social support, know-
ledge, activity restriction and family relationship also affect
the psychosocial well-being of caregivers. Given that econo-
mic challenges and limited resources in the community may
affect a caregiver’s quality of life, providing financial support
to the family of the stroke victim survivor could certainly
relieve the immediate burden. However, nurses should be
aware that providing financial assistance to stroke survivors’
families is not the ultimate solution for their long-term
emotional distress. Bluvol and Ford-Gilboe (2004) stated that
clinicians should consider each family and caregiver’s unique
experiences to design interventions that build on their
strengths rather than focus on their weaknesses. In discharge
planning, it is important for nurses to look into the individual
family context and to help resolve family problems, if needed.
The nurse is encouraged to collaborate with a medical social
worker for interdisciplinary input in providing realistic
support for caregivers to help them to adapt to situations
that cannot be changed. An effective health programme
should focus on empowering an individual or family to cope
with the environment and not to remain as a passive recipient
of care services (Ottawa Charter for Health Promotion
1986).
From the regression models, it is interesting to find that
educational attainment of the caregivers contributed signifi-
cantly to their emotional health during caregiving. Other
caregiver variables, including age and depressive status also
affect caregivers’ physical health. In addition, the levels of
patients’ cognitive impairment (MMSE) were attributed to
caregivers’ depression. According to Clark et al. (2004), a
higher educational attainment and the absence of major
health problems in caregivers were associated with better
caregiver physical health. With better education, the ability to
deal with situations reflectively is improved. It also has to be
noted that being better educated has a knock-on effect: higher
income, better standard of living and greater likelihood of
being able to pay for extra help when solving problems. In the
study, caregivers having a higher educational attainment
experienced less depression in both phases and less anxiety at
T2. In the clinical environment, nurses need to identify the
caregivers who have a low educational attainment to be able
to help them improve their problem solving abilities and their
coping mechanisms for unexpected life circumstances. Provi-
ding the usual general information on stroke recovery and
patient care may reduce the anxiety of some clients but may
not be beneficial to all caregivers as a whole. In addition,
family caregivers who are less educated face problems of
accessing informational support (Sit et al. 2004). Discharge
planning with individualized care plans, effective and appro-
priate information transfer, outreach and community nursing
services and telephone follow-ups are able to provide
continuous support to caregivers’ families, especially those
with lower educational attainment. Telephone follow-ups
serve the purpose of evaluating and reinforcing the effective-
ness of health teaching that has been previously given to the
caregivers.
This study also found that caregivers’ age is inversely
related to their physical health status. The older the caregiver,
Original article Coping and caring
Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd 141
the poorer physical health status was reported. Income and
living environment contribute significantly to the physical
health of caregivers. Older caregivers are at a greater risk of
experiencing depression due to boredom, financial problems
and role overload, thus, causing a decline in their physical
wellness. In addition, older people are more vulnerable to
most kinds of chronic diseases, thus, affecting their physical
health. Therefore, it is important for nurses to take into
account a caregiver’s age when planning for discharge
interventions and providing continuity of care for these
elderly caregivers. Predischarge education that includes
information about food nutrition, exercise, personal hygiene
and smoking is critical in maintaining the physical wellness of
elderly caregivers. Regular telephone follow-up sessions
involve discussions with family members about their concerns
and assessment of their level of exhaustion; these will ensure
the continuity of care to the family. The use of telephone-
based intervention could be used as a routine practice to
provide postdischarge intervention in management of psy-
chological well being of the caregivers after hospitalization.
Finally, the patient group is a significant contributor to the
anxiety and depressive status of the caregivers across time.
The findings confirmed that a prolonged recovery process had
a stronger psychological impact on stroke caregivers than on
their counterparts. Nurses working in the neurosurgical units
are advised to exert extra effort in developing a discharge
plan of care for stroke caregivers. An holistic assessment and
discharge plan is able to bridge the gap between the hospital
and the community and it benefits both patients and
caregivers in a changing healthcare delivery system.
Conclusion
This study is limited by its small sample size. The important
findings contribute to the knowledge base about understand-
ing the physical and emotional burden of stroke caregivers as
compared with that of non-stroke caregivers of patients from
a neurosurgical unit. Through examining the predictors of
emotional and physical distress, nurses can gain a better
insight into how to develop an effective discharge plan and
follow-up programme for family caregivers to improve their
health. Further research is required on the effects of the
discharge programme in alleviating the physical and emo-
tional burden of stroke survivors and their caregivers’ needs
to be undertaken.
Acknowledgement
The authors thank Dr. Tony Chan for the statistical advice
on the paper.
Contributions
Study design: SC, CP, FW; data collection and analysis: SC,
CP; manuscript preparation: SC, FW.
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Original article Coping and caring
Ó 2007 The Authors. Journal compilation Ó 2007 Blackwell Publishing Ltd 143
    • "So, it's permissible to infer that in the readmissions of the dependent person, the family caregivers continue to express some needs. We can say that discharge planning involves a complex process of patient assessment, development of an appropriate plan, provision of education to the patient and caregivers, and follow-up and evaluation (Bauer, Fitzgerald, Haesler & Manfrin, 2009; Chenoweth & Luck, 2003; Chow, Wong & Poon, 2007; Shepperd, Parkes, McClaran & Phillips, 2010). We believe that many readmissions can be avoided if nurses assume their fundamental role: to prepare the family caregiver to take care of the dependent person at home. "
    [Show abstract] [Hide abstract] ABSTRACT: Background: Today, an increasing number of family members assume a great responsibility for taking care of a dependent person at home. Nurses must prepare the family caregiver for this transition—to be a caregiver, by providing the best solution for each case. Taking care of a dependent person is not an easy task; it involves cognitive and instrumental skills to perform this role. Aim: We intend to study the types and frequencies of nursing diagnosis related to the family caregiver, documented in the Nursing Information System (NIS) in use, in a District Hospital in Portugal. Method: The data were extracted from the Nursing Information System to a new database, and, after codification, we analyzed the nursing diagnosis related to the family caregiver. ICNP ® (International Classification for Nursing Practice) was used as referential terminology in data analysis. Findings: The analysis shows that more than 40% of patients admitted with nursing diagnosis are related to the family caregiver, even in readmissions cases. These nursing diagnoses are centered on the prevention of patient’s complications, such as pressure ulcer, replacement in self-care activities, i.e., feeding, optimization of the family caregiver role, and in the promotion of the therapeutic regimen management. The major skills that we found in diagnosis related to the family caregiver were associated with knowledge acquisition. Conclusion: We conclude that, in many readmissions cases, family caregivers continue to have many weaknesses, specifically related to their level of knowledge and skills learning. This finding opens a window of opportunity to develop solutions that will help these families take care of a dependent person at home, including web-based solutions that can be a tool to promote the continuity of care.
    Full-text · Article · Mar 2011
    • "These benefits can stem from maintaining a relationship, fulfilling a supportive role and personal growth (Braithwaite, 1996; Farran, 1997; Noonan, Teenstedt, & Rebelsky, 1996). In order to promote the well-being of support people, research has focused on identifying coping strategies that are thought to assist with the adjustment to the daily tasks of caring for a person with a chronic condition (Chow, Wong, & Poon, 2007; Doland & Sims, 1996; King & Semik, 2006; Lazarus & Folkman, 1984; Low, Payne, & Roderick, 1999; Tennstedt, 1999). However, this positioning of linking a support person " s health and wellness solely to the caregiving role ignores the support person " s pre-existing and on-going health conditions, their own health and lifestyle beliefs and behaviours, and the relationship with the person they support. "
    [Show abstract] [Hide abstract] ABSTRACT: Utilising an interpretive descriptive approach, this qualitative study explores and identifies how spouses and partners of stroke survivors sustain their own health and wellness. Recent literature has mainly focused on identifying psychological coping strategies thought to assist in adapting to the caring role. As a consequence, there is limited knowledge regarding the experiences of how spouses and partners attend to their own health and well-being. This study aimed to explore how spouses and partners sustain their own health and wellness while supporting a stroke survivor. Purposive and theoretical sampling strategies were used to guide recruitment. Semi-structured interviews were carried out with seven spouses and partners who were living with, and supporting a stroke survivor. A central theme with three sub-themes became apparent when examining spouses and partners’ experiences. The theme of Meeting Needs connects the three sub-themes, in that spouses’ and partners’ health and wellness appeared to be influenced by and intertwined with attending to the stroke survivors’ needs. The context of Being in a Relationship provided a rationale for prioritising the stroke survivors’ needs and was the first sub-theme. Secondly, Living Both Lives explains how spouses/partners were busy thinking and attending primarily to the stroke survivor’s daily requirements whilst also trying to attend their own needs. The third sub-theme, Uncertain Health encompasses how a spouse’s and partner’s well-being is connected to the stroke survivors’ health and their future concerns about being able to provide care if they themselves become sick. Therefore, these circumstances shaped their ability to attend to their own health and well-being. Whilst attending to the stroke survivor was at the forefront of their minds there were some strategies which spouses/partners utilised to support their own health and well-being. These were: creating time and space for themselves; talking with others; and comparing own lives against others who were seen to be worse or better off, in order to support their own emotional well-being. This study found that the participants struggled to prioritise and attend to their own health and well-being, as most of them was busy primarily attending to the stroke survivor’s needs. Overall, results suggest that exploring what spouses/partners think and do within the relationship could be valuable for health practitioners. Given that it is the intimate nature of being in a relationship that is the foundation for spouses/partners supporting the stroke survivor, it could also be important for services and health professionals to consider the well-being and needs of the couple, not just the stroke survivor.
    Full-text · Article · · Online Journal of Nursing Informatics
  • Article · · Online Journal of Nursing Informatics
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