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DOI 10.1007/s00520-013-2077-z

ORIGINAL ARTICLE

Modifiable factors associated with caregiver burden


among family caregivers of terminally ill Korean
cancer patients
Seok-Joon Yoon & Jong-Sung Kim & Jin-Gyu Jung &
Sung-Soo Kim & Samyong Kim

Received: 1 July 2013 / Accepted: 25 November 2013


# Springer-Verlag Berlin Heidelberg 2014

Abstract Results Longer time spent providing care per day, fewer
Purpose Higher caregiver burden is associated with poor weekly visits from other family members, poor family func-
quality of life among family caregivers. However, in Korea, tioning, and low self-esteem were considered as modifiable
very few studies have examined factors associated with care- factors associated with caregiver burden. Low monthly in-
giver burden. The present study investigated factors associat- come and the spouse being the family caregiver were non-
ed with caregiver burden among family caregivers of termi- modifiable factors.
nally ill Korean cancer patients, particularly modifiable factors Conclusions Our study has practical significance in that it
as a potential target of intervention strategies. identifies modifiable factors that can be used to devise inter-
Methods A cross-sectional study using self-administered vention strategies. Developing and applying such intervention
questionnaires was performed. Sixty-four family caregivers strategies for alleviating the factors associated with high care-
of terminally ill cancer patients who were admitted to the giver burden could be important for improving the quality of
hospice-palliative care unit of a university hospital in South life of both patients and their families.
Korea were included. To identify caregiver burden, the
Caregiver Reaction Assessment scale (CRA) was used in this Keywords Caregivers . Quality of life . Cancer . Palliative
study. Time spent in providing care per day, number of visits care
per week from other family members, family functioning, and
a positive subscale, self-esteem, of the CRA were deemed as
modifiable factors. Other sociodemographic, caregiving char- Introduction
acteristics of the subjects were non-modifiable factors.
The World Health Organization (WHO) has defined the pur-
pose of palliative care as improving the quality of life (QOL)
S.<J. Yoon : J.<S. Kim : J.<G. Jung : S.<S. Kim
of both patients and their families [1]. The WHO suggests that
Department of Family Medicine, Research Institute for Medical
Sciences, Chungnam National University School of Medicine, in order to improve the QOL of terminally ill patients, im-
Daejeon, South Korea proving the QOL of patients' families is crucial.
Taking care of a terminally ill family member places sig-
S. Kim
Department of Internal Medicine, Cancer Research Institute,
nificant physical (e.g., coronary heart diseases) and mental
Chungnam National University School of Medicine, Daejeon, South (e.g., depression) burdens on the caregiver(s), which, in turn,
Korea leads to decreased QOL within the family [25]. Financial
burden is one of the most important predictors of depression
S.<J. Yoon : J.<S. Kim : J.<G. Jung : S.<S. Kim
and has the strongest relationship with poor QOL [6, 7]. Many
Department of Family Medicine, Chungnam National University
Hospital, 282 Munhwa-roJung-gu Daejeon, South Korea studies have examined factors related to caregiver burden
among family members of cancer patients, and the following
S. Kim (*) factors related to high caregiver burden were found: young
Division of Hemato-Oncology, Department of Internal Medicine,
age of the caregiver [8, 9], limitations imposed on daily
Chungnam National University Hospital, 282 Munhwa-roJung-gu
Daejeon, South Korea activities [8], caregiver depression [10, 11], lack of other
e-mail: frkim@cnu.ac.kr family members to share caregiving [9], poor relationships
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with other family members [12], lack of communication be- 68 family caregivers agreed to participate, with 64 family
tween caregivers and patients [13], unmet psychosocial needs caregivers forming our final sample (4 caregivers were ex-
among patients [11, 14], poor financial status [9, 15], and cluded because of missing data).
being a female caregiver [9].
In Korea, like China or Japan, taking care of ill family
members is a duty prescribed by filial piety from Confucian Research methods
culture. A literature review noted that Korean caregivers re-
ported filial obligation, while Caucasian caregivers reported Family caregivers filled out self-administered questionnaires
filial affection as a major caregiving motivation [16]. Koreans on the day the patients were admitted to the aforementioned
usually sought help from other family members, while hospice-palliative care unit. Age, sex, educational status, mar-
Caucasian Americans used formal support from government ital status, religion, and monthly income were assessed as
or other social services [16]. Thus, the factors related to sociodemographic variables. Relationship with the patient,
caregiver burden among Korean caregivers may be different job loss due to caregiving, diagnosis of any diseases after
from those of Western caregivers. However, few studies have the onset of caregiving, self-reported overall health status,
examined these factors among family caregivers of terminally time spent in providing care per day, care duration, number
ill Korean cancer patients [9, 1719]. We argue that the of visits per week from other family members, number of
previous studies have some limitations. The previous studies activities of daily living (ADLs) in which patients need help,
did not include detailed data associated with caregiving such and family functioning were assessed as variables associated
as duration and type of care or directly measure caregiver with caregiving. These variables were adopted from other
burden. studies [814, 1719]. Self-reported overall health status
Developing and applying intervention strategies to reduce was examined using one item from the Korean version of
caregiver burden could be important as well as finding the the Short Form-36 [23]. The number of ADLs in which the
factors related to caregiver burden. A meta-analysis conducted patients need help was determined using seven items from the
to determine the effect of interventions offered to family Korean Activities of Daily Living scale [24]. Family function-
caregivers of cancer patients showed that these interventions ing was assessed using the family adaptation, partnership,
significantly reduced caregiver burden and increased their growth, affection, and resolve (APGAR) score [25].
self-efficacy [20]. But a high number of sessions and duration Data on age, sex, performance status, and primary sites of
of interventions could limit their practical applicability in a the patients' cancer were obtained by reviewing medical re-
palliative care setting, especially in Korea because of late cords. Patients' performance status was determined using the
referral to palliative care. It is reported that family meeting Eastern Cooperative Oncology Group performance status
as a single session therapy could be an alternative and was (ECOG PS) [26]. An ECOG PS score of 1 or 2 was defined
useful and effective in the palliative care setting [21, 22]. as good performance status, while scores of 3 or 4 were
Modifiable factors associated with caregiver burden could be defined as poor performance status.
important topics for discussion in the family meetings to To identify caregiver burden, the Caregiver Reaction
reduce caregiver burden in palliative care settings in Korea. Assessment (CRA) was used in the present study. The CRA
The objective of the present study was to identify factors is a self-administered questionnaire that consists of 24 items,
associated with high caregiver burden among family care- developed by Given et al. in 1992 [27]. It contains five
givers of terminally ill Korean cancer patients. We placed a subscales: four subscales assess negative aspects of caregiv-
special emphasis on modifiable factors related to caregiver ing, and one subscale assesses the positive aspects of caregiv-
burden as a potential target of intervention strategies. ing. The advantage of the CRA is that it enables the investi-
gation of various aspects of caregiving by using a single
questionnaire [28]. Seventeen items comprise the four nega-
Subjects tive subscalesdisrupted schedules, lack of family support,
health problems, and financial problems. The positive sub-
Subjects were family caregivers of terminally ill cancer pa- scale comprises seven items assessing care-derived self-
tients who were admitted to the hospice-palliative care unit of esteem. Each item was rated on a 5-point Likert scale (from
Chungnam National University Hospital in South Korea from strongly disagree to strongly agree); thus, scores on each
April 2012 through September 2012. Family caregivers who subscale ranged from 0.0 to 5.0 points. A total score is not
were providing informal care to patients were included in the recommended to identify caregiver burden; we used scores for
study if they were aged 18 years or older, assessed to be each subscale instead [27]. Higher scores on the four negative
mentally and physically capable of filling out questionnaires subscales and lower scores on the positive subscale indicate
as determined by subjective observation of medical staff higher burden. In the present study, we used the Korean
members, and agreed to fill out the questionnaires. A total of version of the CRA (CRA-K); the CRA was translated in a
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previous study and the reliability and validity of the translated status. The patients' most prevalent primary cancer site was
version were confirmed [29]. Psychometric properties (QOL, the stomach (21.9 %; Table 1).
anxiety, depression, social support) were confirmed in the
previous studies [29, 30]. Cronbach's alphas for each subscale
of the CRA-K, disrupted schedules, lack of family support, Table 1 General characteristics of family caregivers and patients (N =64)
health problems, financial problems, and self-esteem were
Variables MeanSD or N (%)
0.75, 0.80, 0.73, 0.71, and 0.52, respectively [29]. In our
study, Cronbach's alphas were 0.695, 0.853, 0.817, 0.824, Age (years) 47.9113.43
and 0.625, respectively. Sex (male) 21 (32.8)
Time spent in providing care per day, number of visits per Relationship with patientsa (spouses) 23 (35.9)
week from other family members, family functioning, and a Education (12 years) 35 (54.7)
positive subscale, self-esteem, of the CRA were deemed as Marital status (married) 49 (76.6)
modifiable factors in the opinion of the clinicians. Religion (yes) 37 (57.8)
Monthly income (KRW) (2,000,000) 32 (50.0)
Job loss due to caregiving (yes) 24 (37.5)
Statistical analysis Diagnosis of disease after the onset of 8 (12.5)
caregiving (yes)
Self-reported overall health status
Relationships between the sociodemographic variables of
Very poor 5 (7.8)
family caregivers, variables associated with caregiving, pa-
Poor 9 (14.1)
tients' variables, and caregiver burden were analyzed using
As usual 25 (39.1)
independent samples t tests, one-way ANOVAs, and
Good 21 (32.8)
Pearson's correlations at the univariate level. After that, we
Very good 4 (6.3)
extracted variables associated with caregiver burden (four
Care time (h/day)b 14.939.18
negative subscales of the CRA). We conducted four multiple
Care duration (months)c 13.8019.90
regression models to determine the factors associated with
Number of visits from other family members 3.802.52
caregiver burden. Significant variables (p <0.05) obtained
(number/week)
from the univariate analyses were used in each regression Number of ADLs in which patients need help 4.172.61
model. We conducted a stepwise method of multiple regres- Family functioningd (good) 38 (59.4)
sion analysis to remove unrelated factors. All statistical anal- Age of patients (years) 64.6312.02
yses were performed using SPSS version 13.0 for Windows Sex of patients (male) 31 (48.4)
(SPSS, Inc., Chicago, IL, USA). We set the statistical signif- Performance status of patientse (poor) 45 (70.3)
icance level of univariate analyses at p <0.05. We used Patients' primary cancer sites
Bonferroni correction to the four multiple regression analyses Stomach 14 (21.9)
and set the statistical significance level at p < 0.0125. Colon/rectum 12 (18.8)
Descriptive statistics of our variables were expressed as Lung 7 (10.9)
meanstandard deviation.
Hepatobiliary 7 (10.9)
Pancreas 4 (6.3)
Breast 3 (4.7)
Results Genitourinary 9 (14.1)
Brain 3 (4.7)
General characteristics of family caregivers and patients Others 5 (7.8)

KRW 2,000,000 is approximately equivalent to USD 1,900


On average, family caregivers were 47.9113.43 years old,
ADL activities of daily living
and patients were 64.6312.02 years old. Twenty-one of the a
family caregivers (32.8 %) and 31 of the patients (48.4 %) Non-spousal caregivers were children, parents, and daughters-in-law of
the patients
were male. Twenty-three of the family caregivers were b
Care time means time spent providing care per day
spouses (35.9 %). Thirty-two of the family caregivers c
Care duration means duration providing care since diagnosis
(50.0 %) had a monthly income of KRW 2,000,000 (approx- d
Evaluated by family APGAR (adaptation, partnership, growth, affec-
imately equivalent to USD 1,900) or less. Average time spent tion, resolve) score
providing care per day was 14.939.18 h. The number of e
Eastern Cooperative Oncology Group performance status score of 1 or 2
visits per week from other family members was 3.802.52. was defined as good performance status, while scores of 3 or 4 were
Forty-five of the patients (70.3 %) had a poor performance defined as poor performance status
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Univariate analyses of relationships day, and a greater number of ADLs in which patients need
between sociodemographic, caregiving characteristics help. Factors associated with higher burden of lack of family
of family caregivers and caregiver burden support were low monthly income, longer care duration,
fewer visits from other family members, moderate or poor
Factors related with higher burden of disrupted schedules family functioning, and low self-esteem. Factors related to
were being an unmarried caregiver, low monthly income, job more health problems were old age, the spouse being the
loss due to caregiving, longer time spent in providing care per caregiver, low monthly income, longer time spent providing

Table 2 Univariate analyses of


relationships between Variables MeanSD or correlation coefficients
sociodemographic, caregiving
characteristics of family care- DS LF HP FP
givers and caregiver burden
Age 0.002 0.044 0.286 0.159
Sex
Male 3.420.80 2.261.06 2.640.74 2.920.89
Female 3.620.74 2.100.85 3.030.87 2.991.04
Relationship with patients
Others 3.460.83 1.990.91 2.680.77 2.700.90
Spouses 3.730.61 2.430.87 3.290.85 3.450.97
Education
12 years 3.690.67 2.310.74 3.080.79 3.300.96
>12 years 3.390.85 1.951.07 2.690.87 2.570.90
Marital status
Married 3.420.72 2.090.75 2.910.86 2.960.99
Unmarried 3.990.78 2.361.33 2.880.84 3.001.02
Religion
Yes 3.650.74 2.140.89 3.060.95 3.120.99
No 3.430.79 2.160.97 2.690.63 2.770.97
Monthly income (KRW)
2,000,000 3.840.62 2.380.81 3.270.85 3.510.94
>2,000,000 3.280.80 1.930.97 2.540.68 2.430.71
Job loss due to caregiving
Yes 4.030.65 2.400.99 3.090.93 3.220.87
No 3.280.69 2.000.85 2.790.79 2.821.03
Diagnosis of disease after the onset of caregiving
Yes 4.000.88 2.531.04 3.661.22 3.131.10
No 3.490.73 2.100.89 2.790.73 2.950.98
KRW 2,000,000 is approximately Self-reported overall health status
equivalent to USD 1,900 Very poor 3.440.93 2.120.86 2.751.51 2.531.07
DS disrupted schedule, LF lack Poor 3.780.87 2.600.95 3.441.24 3.260.86
of family support, HP health As usual 3.620.58 2.220.71 3.050.63 3.280.94b
problem, FP financial problem,
SE self-esteem, ADL activities of Good 3.330.85 1.881.04 2.600.54 2.790.95
daily living Very good 3.950.93 2.151.33 2.560.94 1.830.79b

p <0.05 obtained by indepen- Care time 0.525 0.169 0.389 0.443


dent samples t tests or Pearson's Care duration 0.150 0.291 0.237 0.258
correlation analyses
Number of visits from other family members 0.186 0.455 0.081 0.231
a
Evaluated by family APGAR Number of ADLs in which patients need help 0.282 0.061 0.207 0.002
(adaptation, partnership, growth,
affection, resolve) score Family functioninga
b
There was a statistical signifi- Poor, moderate 3.780.76 2.620.96 3.080.83 3.420.88
cant difference between two cate- Good 3.410.74 1.830.74 2.780.85 2.660.95
gories by post-hoc test of one- Self-esteem 0.224 0.451 0.362 0.268
way ANOVA
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care per day, and low self-esteem. The spouse being the family members (R 2 change = 0.207), low self-esteem
caregiver, low educational status, low monthly income, usu- (R 2 change=0.167), and poor family functioning (R 2
al self-reported overall health status, longer time spent pro- change=0.075) were factors related with higher burden of
viding care per day, longer care duration, moderate or poor lack of family support. Factors associated with more health
family functioning, and low self-esteem were factors associ- problems were low monthly income (R 2 change=0.187), low
ated with more financial problems (Table 2). self-esteem (R 2 change=0.086), and longer time spent in
providing care per day (R 2 change=0.082). Low monthly
Univariate analyses of relationships between characteristics income (R 2 change=0.304), poor family functioning (R 2
of patients and caregiver burden change=0.063), and the spouse being the caregiver (R 2
change=0.043) were related with more financial problems
Among patients' characteristics, poor performance status was (Table 4).
related with higher burden of disrupted schedule, and male
patients were associated with more health problems of care-
giving (Table 3). Discussion

Multivariate analyses of relationships between multiple The present study identified modifiable factors associated
variables and caregiver burden with caregiver burden among family caregivers of terminally
ill Korean cancer patients; the findings have practical signif-
Factors associated with higher burden of disrupted icance as they may be helpful in tailoring intervention strate-
schedule were longer time spent in providing care per gies to suit the needs of the patients and their caregivers. Our
day (R 2 change=0.276) and poor performance status of results suggest the followings as possible intervention strate-
the patients (R 2 change=0.103). Fewer visits from other gies for lessening caregiver burden: decreasing time spent in
providing care per day, encouraging other family members to
visit, enhancing family functioning (e.g., resolving conflicts
Table 3 Univariate analyses of relationships between characteristics of and encouraging communication among family members),
patients and caregiver burden and increasing self-esteem.
Variables MeanSD or correlation coefficients The aforementioned family meeting would be an interven-
tion to decrease caregiver burden. A study investigated the effect
DS LF HP FP of the family meeting in the palliative care setting and noted that
symptom management, discharge planning, and update on the
Age 0.148 0.054 0.013 0.115
patient's medical condition were key topics discussed [22]. Most
Sex
(90 %) family caregivers reported that the meeting was benefi-
Male 3.580.74 2.120.79 3.120.81 3.091.12
cial because of its informative perspective, while 40 % noted
Female 3.530.80 2.181.03 2.700.84 2.860.85
that the family-focused (e.g., talking about feelings/concerns)
Performance statusa aspect was beneficial [22]. According to our results, discussing
Poor 3.720.69 2.250.97 3.020.79 2.960.95 the factors related to caregiver burden and solutions to them
Good 3.160.81 1.920.74 2.630.93 3.001.11 (e.g., sharing time spent in providing care per day and more
Primary cancer sites visits from other family members) in the family meeting would
Stomach 3.360.90 2.210.73 3.000.69 3.001.05 be helpful in lessening caregiver burden. Further studies on
Colon/rectum 3.670.64 2.250.97 3.100.88 3.701.13 family meeting are needed for the palliative care settings in
Lung 3.690.81 2.000.95 2.711.08 2.810.66 Korea in order to identify the efficacy of such intervention.
Hepatobiliary 3.310.88 2.061.39 2.541.02 2.760.81 In the present study, longer time spent in providing care per
Pancreas 3.350.75 2.600.59 3.250.79 2.751.26 day was the most important factor associated with higher
Breast 3.270.57 2.471.29 3.000.90 2.700.92 burden of disrupted schedules and was associated with more
Genitourinary 3.930.75 2.110.97 2.911.01 3.110.51 health problems. Taking care of patients all day long hinders
Brain 3.470.70 1.800.72 2.920.52 3.110.51 the caregivers from accessing their personal resources avail-
Others 3.720.78 1.800.91 2.550.69 2.330.62 able for coping with stress (e.g., hobbies, relationships with
friends). This finding is consistent with that of a previous
DS disrupted schedule, LF lack of family support, HP health problem,
FP financial problem, SE self-esteem study [8] where limitations in daily activities were related to
a
Eastern Cooperative Oncology Group performance status score of 1 or 2
caregiver burden. Other studies [18, 19] showing that longer
was defined as good performance status, while scores of 3 or 4 were time spent in providing care per day is associated with depres-
defined as poor performance status sion and lower QOL are also consistent with our results. When

p <0.05 obtained by independent samples t tests the main caregiver's burden is deemed heavy as judged by
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Table 4 Multivariate analyses of relationships between multiple variables and caregiver burden

Variables DS LF HP FP

R 2 change R 2 change R 2 change R 2 change

Caregivers' characteristics
Age 0 0
Spousea 0 0 0.483 0.043
More educated 0 0
Unmarried 0 0
Higher monthly income 0 0 0 0 0.269 0.187 0.733 0.304
Job loss 0 0
Self-reported health status 0 0
Care time 0.043 0.276 0.034 0.082 0 0
Care duration 0 0 0 0
More visits of other families 0.131 0.207
More needed ADLs by patients 0 0
Good family function 0.528 0.075 0.617 0.063
Self-esteem 0.566 0.167 0.574 0.086 0 0
Patients' characteristics
Male 0 0
Poor performance status 0.534 0.103
Total R 2 0.379 0.449 0.354 0.410

A dash means that this variable was not included in the statistical model because of non-significance on univariate analyses. A 0 means that this
variable was included in the statistical model but was not significant on multivariate analysis. All R 2 means adjusted R 2
DS disrupted schedule, LF lack of family support, HP health problem, FP financial problem, ADL activities of daily living
a
Relationship among the patients, children, parents, and daughters-in-law was compared together with spouses

p <0.0125 was obtained by stepwise multiple regression analyses

staff members in weekly team meetings, paid caregivers are In the present study, low self-esteem was associated with
sometimes provided to patients of hospice-palliative care units higher burden of lack of family support and more health
in Korea free of charge funded by voluntary donations. problems. This result is consistent with results obtained from
Volunteers' physical contacts with the patients are usually a previous study [29]. This result is also consistent with a
allowed in Korea. So volunteers' support could be used to previous finding [9] that positive aspects of caregiving are
decrease caregiver burden. These could be an intervention to negatively associated with caregiver burden. Items assessing
decrease time spent to providing care. Further studies regard- positive aspects of caregiving (e.g., Care-giving makes me
ing such interventions would be helpful in Korea. feel good) were included in the positive subscale of the CRA.
Fewer visits from other family members and poor family We assume that family caregivers gladly take care of their ill
functioning were associated with higher burden of lack of family member(s), even though caregiving is very taxing. Part
family support. Poor family functioning was also related to of this could be due to an ethical desire to fulfill duties related
more financial problems. These results are consistent with to filial piety in the Korean culture [16]. We suggest that some
those of previous studies [12, 19] showing that having poor kind of educational program emphasizing meanings and pos-
relationships with other family members is associated with itive aspects of caregiving would be helpful in lessening
greater caregiver burden and that the prevalence of depression caregiver burden.
increases as visits from other family members decrease. Some Using our results, preventative interventions to reduce
studies argue that less visits from other family members have a caregiver burden could be possible at the early days of admis-
negative effect on caregivers' ability to vent about their hard- sion to the hospice-palliative care unit. We suggest that these
ships and are related to less financial support from other programs must include difficulties facing primary caregivers,
family members. We suggest that providing educational pro- the importance of assistance from other family members,
grams giving information about the difficulties and possible positive aspects of caregiving, loneliness and meaninglessness
burnout of main caregivers would be helpful in alleviating the of patients, and techniques to care for patients. Further studies
main caregivers' burden. regarding these interventions will be needed.
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Conflict of interest The authors declare that there is no conflict of
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interest.
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