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Received: March 21, 2017
Accepted: April 03, 2017
Published: April 17, 2017
Burden and Depression among Caregivers of Hemodial-
ysis Patients
Dayana Shakya∗, Jyoti Tuladhar1and Sabitra Poudel1
1Lecturer,B.Sc. Nursing Program, Kathmandu Medical College, Sinamangal, Kathmandu,
Nepal
*Corresponding author: Dayana Shakya, Lecturer, B. Sc. Nursing Program, Kathmandu Medical
College, Sinamangal, Kathmandu, Nepal,Tel:+977 9849511461; E-mail: dianashakya@gmail.com
1Abstract
1.1 Introduction
End stage renal disease affects almost all aspects of life
of the patients and their caregivers. The caregiver role
is stressful and demanding but is often neglected, es-
pecially in developing countries like Nepal. Hence, this
study attempts to assess the burden on caregivers and
find out their liability for developing depression.
1.2 Methods
Cross sectional, descriptive study design was used. Pur-
posive sampling was used to collect data from all pa-
tients undergoing hemodialysis at Human Organ Trans-
plant Center. Face to face interview was conducted with
the caregivers. Semi structured questionnaires were
used to measure socio-demographic and dialysis related
variables whereas standard tools Zarit Burden Interview
(ZBI) and Beck’s Depression Inventory (BDI) were used
to measure burden and depression. Analysis was done
using inferential statistics.
1.3 Findings
The study found 60% of the caregivers to be < 40 years
with mean age as 37.24±13.2 years. Majority of care-
givers were married, more than half were females and
employed and 70% had < 10 years of formal educa-
tion. Almost half of the caregivers had moderate to
severe burden with around 17% having severe burden.
Also, 35% of the caregivers had moderate to severe de-
pression. Analysis with inferential statistics showed that
burden increased with increasing age, decreasing edu-
cation and decreasing social support. Marital status, so-
cioeconomic status and relationship to patient were also
found to affect burden. Moreover, caregiver burden was
significantly positively associated with depression.
1.4 Conclusion
Caregivers of hemodialysis patients are facing signifi-
cant burden and more than one third are moderate to
severely depressed. Interventions to provide appropri-
ate social support services and improve psychological
conditions of caregivers is of urgent and paramount im-
portance.
1.5 Keywords
Hemodialysis; Burden; Depression; Caregivers; Chronic
kidney disease; End stage renal disease
2Introduction
With the rapid rise in number of patients with End Stage
Renal Disease (ESRD) and those with comorbid conditions receiv-
ing renal replacement therapies, combined with the increasing
demands of the 21st century, burden on the caregivers have in-
creased even more than in the past days [1]. These caregivers
not only have to sustain their living and maintain their quality of
life, they also have to take care of their chronically ill family mem-
ber. Moreover, as the chronic kidney disease patients are usually
middle to old aged adults, their caregivers (primarily found to
be spouses) are equally aged partners, many of whom have their
own physical ailments, lack community connections, and have
limited financial reserves [2]. This is even more true when the
caregivers are parents. And when the caregivers are children for
older patients, though the caregivers are younger, their burden is
high due to the increasing demands of the bread winning popula-
tion.
In Nepal, where most people cannot afford paid caregivers
and rely on family members to take care of the sick, the topic of
burden of caregivers is more significant. The caregivers, some-
times out of love and sometimes out of obligation, take care of
their chronic patients despite all odds. Furthermore, when the
Citation: Shakya D,Tuladhar J, Poudel S.(2017) Burden and Depression among Caregivers of Hemodialysis Patients. Palliat Med Care 4(1): 1-6
Copyright: c
2017 Shakya, et al.
disease of the patients is chronic (like ESRD with dialysis), debil-
itating, expensive yet temporary, the burden for caregivers peak
to no bounds, especially in a resource limited country like Nepal.
Even in this context, studies in Nepal, focussing on the needs and
burden of the caregivers of hemodialysis patients are scarce.
It is important to understand caregiver characteristics and
explore the relationship of their level of burden with quality of life
parameters and psychosocial aspect of patients. This will optimize
the use of support and interventional measures and help reduce
negative effect on the caregivers’ lives [1].
The stress of treatment and disease burden due to life-
long dialysis is inevitable on the patients and the entire family
[1,3]; especially when the patient is the head of the household.
The prevalence of moderate to severe depression in caregivers
of hemodialysis patients was found to be 33.4% in a study done
in Pakistan [4]. However in another study, the depressive symp-
toms were observed in 43.82% of the caregivers, even more than
in the patients (40.74%) [5]. Low income status, marital status
and unemployment were found to be positively associated with
depression [4]. In Nepal, as caregivers are mostly unpaid family
members, the chances of exhaustion of caregiving and depression
may be common.
As the studies looking into the depressive symptoms of care-
givers of hemodialysis patient are scarce, the researcher attempts
to assess the burden and depression on caregivers of HD patients.
3Methods
3.1 Design and Study Population
Descriptive, cross sectional study design was adopted to assess
the burden of the caregiver of hemodialysis patients and find out
the association of caregiver burden with depression. Data was
collected in the hemodialysis ward of Human Organ Transplant
Center (HOTC), Bhaktapur. The caregivers were met outside the
hemodialysis ward when the patient was undergoing hemodialy-
sis.
3.2 Data Collection Tool and Method
A total of 164 eligible caregivers of patients taking maintenance
hemodialysis from the dialysis wards of Human Organ Transplant
Center (HOTC) were taken in the study. Separate face to face
interview was carried out with the caregivers in the waiting area
after taking written informed consent from them. The primary
caregiver was followed up for interview for three times and if
unavailable were excluded from the study.
Caregivers of age 18 and more who had been taking care
of the patient for at least 3 months were included in the study.
Caregivers of patients returning to hemodialysis after failure of
renal transplant and caregivers of HIV and Hepatitis B positive
patients undergoing hemodialysis were excluded from the study.
Caregivers answered questions related to demographic vari-
ables (of patients and caregivers) and hemodialysis related vari-
ables (frequency, duration, presence of comorbidities, dialysis ac-
cess and perceived social support). Caregiver burden was mea-
sured by Zarit Burden Inventory (ZBI) and depression was mea-
sured by using Beck Depression Inventory (BDI)
ZBI is a 22-item questionnaire with a five-item response set
ranging from “never” to “nearly always.” Zero to 20 points mean
little or no burden, 21–40 points mean mild to moderate burden,
41–60 points mean moderate to severe burden, and 61–88 points
mean severe burden. ZBI has been successfully used in many
studies that determine the burden of care of patients undergoing
dialysis. The validity and reliability of ZBI has been measured by
previous studies. The crohnbach’s alpha was found to be 0.93 and
the intra-class correlation coefficient for the test-retest reliability
of the Zarit burden score was 0.89 [6].
The Beck Depression Inventory (BDI) is a validated 21-item
questionnaire assessing the probability of depression, with scores
ranging from 0 to 63; a score of ≥21 is highly suggestive of
clinical depression. The reliability scores of BDI was found to be
0.88 in the Nepalese context [7].
Pretesting of the data collection tools for its feasibility
and appropriateness was done in Aarogya Foundation, Pulchowk
among 10% of the estimated sample size.
Before collecting data, ethical clearance for the study was
obtained from the Institutional Review Committee of Kathmandu
Medical College. Written informed consent was taken from each
respondent before data collection. The respondents were given
full authority to withdraw from the study without fear or explana-
tion any time during the investigation. Confidentiality was main-
tained throughout the study by omitting the name or any other
identity of the respondents as well as by conducting the interview
separately. Obtained data was used for research purpose only.
The interview lasted about 30-45 minutes.
Among the 240 patients undergoing maintenance hemodial-
ysis at HOTC, respondents meeting the eligibility criteria were
202. Twenty-two patients had started dialysis less than 3 months
ago, 4 caregivers were less than 18 years of age, 5 lived alone and
7 had died. From the 202 eligible caregiver, data could not be col-
lected from a total of 38 respondents. Among the 38 patients, 19
said nobody from their family could come because they cannot
leave their daily wages job or it’s too far and expensive for them
to come. Ten patients were very irregular and could not be con-
tacted, 6 caregivers could not be met with more than three follow
ups and 3 patients refused to bring their caregivers to participate
in the study as they were coming alone for dialysis.
3.3 Statistical Analysis
Mann Whitney U and Kruskal Wallis H tests were used for infer-
ential statistics. The dependant variables were kept continuous
while using inferential statistics, Correlation between two contin-
uous variables, burden and depression was verified using Pear-
son’s correlation coefficient. The level of significance was consid-
ered at 5% with p≤0.05 and 95% confidence interval.
3.4 Result
The distribution of patients and caregivers according to the socio-
demographic variables is shown in (Table 1). The mean age of
patients was found to be 46.56 years and that of the caregivers
was found to be 37.24 years. Around 65% of patients were males,
Citation: Shakya D,Tuladhar J, Poudel S.(2017) Burden and Depression among Caregivers of Hemodialysis Patients. Palliat Med Care 4(1): 1-6
Copyright: c
2017 Shakya, et al.
one third of patients as well as caregivers had secondary level ed-
ucation and around one third patients had service to earn their
living. Majority of the caregivers were spouses (40.9%) or chil-
dren (31.7%).
Majority of the patients (74.4%) underwent dialysis twice a
week. The median duration of dialysis was 14 months. Comor-
bidities present in the patients undergoing dialysis were diabetes,
hypertension, heart diseases, gout and stroke, hypertension being
the most common (76.2%). Almost all patients (97.6%) used AV
fistula for venous access. More than half of the patients (53.7%)
reported that they perceived social support from their family and
near ones. Almost half of the caregivers (49.4%) reported mod-
erate to severe burden with a very small 3.7% reporting little or
no burden (Table 2). None of the socio-demographic parameters
of the patients were found to have any association with caregiver
burden. However, in terms of caregivers, it is seen that burden
is high in caregivers above age 40, having less than 10 years of
formal education and in those who perceive lack of social sup-
port. Caregiver burden is also significantly associated with mar-
ital status, socioeconomic status and relationship to the patient.
However, duration of dialysis, frequency of dialysis, venous ac-
cess and comorbid illness were not found to have any significant
association with caregiver burden.
Depression score was found to increase as the burden in-
creased and statistically significant association was found be-
tween caregiver burden and depression (Table 3). Caregiver bur-
den was found to have significant positive correlation with de-
pression (Table 4).
4Discussion
4.1 Level of Burden among Caregiver
The assessment of burden among the caregivers found the mean
burden score to be 46.99±14.6. The categorization of burden re-
vealed 4% with little or no burden, 30% with mild to moderate
burden, 49% with moderate to severe burden and 17% with se-
vere burden. Moderate to severe burden was also reported by
another study done in Saudi Arabia [8]. A contradicting result
was found by Rioux et al, which showed low burden perceived by
the caregivers. The author has discussed that this result may be
because the caregivers have underestimated the overall burden
[9].
4.2 Socio-demographic Variables of Caregivers and Care-
giver Burden
The caregiver burden was found to be significantly higher in care-
givers above the age of 40. This may be because it is difficult
for the older caregivers to travel and manage treatment for their
patients as compared to the younger caregivers. However, this
finding is contradicted in literature as the caregiver burden was
found to be significantly higher in younger than in older care-
givers [8,10]. In more developed countries like Turkey and Saudi
Arabia where these researches are carried out, the facilities of
transportation and health care may have made it easier for the
older caregivers in providing health care to their patients.
Caregivers with higher education (>10 years of formal edu-
Table 1 Socio-demographic Variables of Hemodialysis Patients and their
Caregivers n1=n2=164
Socio-demographic
Variables
Patients
(n1)
Caregivers
(n2)
Frequency
(%)
Frequency
(%)
Age
Less than 40 57 (34.8) 99 (60.4)
41-50 43 (26.2) 37 (22.6)
51-60 36 (22) 20 (12.2)
More than 60 28 (17.1) 8 (4.9)
Mean age ±SD 46.56 (15.4) 37.24 (13.2)
Sex Distribution
Male 107 (65.2) 72 (43.9)
Female 57 (34.8) 92 (56.1)
Educational level
Illiterate 39 (23.8) 34 (20.7)
Primary level 37 (22.6) 29 (17.7)
Lower secondary 13 (7.9) 12 (7.3)
Secondary level 42 (25.6) 40 (24.4)
Higher secondary
level 17 (10.4) 30 (18.3)
Graduation 15 (9.1) 16 (9.8)
Post-graduation
and above 1 (0.6) 3 (1.8)
Occupation
Agriculture 34 (20.7) 26 (15.9)
Service 56 (34.1) 28 (17.1)
Business 18 (11) 38 (23.2)
Housewives 19 (11.6) 38 (23.2)
Retired 9 (5.5) 4 (2.4)
Student 13 (7.9) 22 (13.4)
Others 15 (9.1) 8 (4.9)
Marital status
Married 129 (78.8) 124 (75.6)
Single 28 (17.1) 38 (23.2)
Widowed 7 (4.3) 2 (1.2)
Income
(Median)
20000
(4000-250000)
Relation
Spouse - 67 (40.9)
Children - 52 (31.7)
Parents - 16 (9.8)
Siblings - 14 (8.5)
Children in law - 6 (3.7)
Grandchildren - 5 (3)
Others - 4 (2.4)
Citation: Shakya D,Tuladhar J, Poudel S.(2017) Burden and Depression among Caregivers of Hemodialysis Patients. Palliat Med Care 4(1): 1-6
Copyright: c
2017 Shakya, et al.
Table 2 Burden among Caregivers of Hemodialysis Patients n=164
Caregiver
Burden Frequency Percentage
Little or
no Burden 6 3.7
Mild to
moderate burden 49 29.9
Moderate to
severe burden 81 49.4
Severe
burden 28 17.1
Mean
Burden
Score
46.99±
14.6
Table 3 Association between Caregiver Burden and Depression n=164
Caregiver
Burden Depression
Median
Little or no
burden 2
Mild to
moderate
burden
6
Moderate to
severe
burden
18
Severe
burden 29
#p value <0.05*
#Kruskal
Wallis H test
*p significant at ≤0.05
level of
significance
Table 4 Correlation between Caregiver Burden and Depression n=164
Depression p
value
Caregiver
Burden r=0.625^ <0.05*
^Pearson Correlation
*p significant at ≤0.05 level of
significance
cation) were found to have significantly less burden. This find-
ing is in accordance to a study done in Saudi Arabia which
showed statistically significant negative correlation between care-
giver burden and caregiver education [8]. It is a general consid-
eration that increased education and awareness about a disease
condition may make it more tolerable for patients and their fam-
ilies [4]. Educated people can reach out to health resources, un-
derstand the disease process better and cope better with adverse
situations which may be the reason of lesser burden in more edu-
cated population. However, another study done in Turkey in 2013
showed caregiver burden to be statistically significantly higher in
caregivers with higher education than in those with lower educa-
tion [10]. This contradiction may be because educated caregivers
are more well versed with the complications of the disease, caus-
ing them more stress and more burden.
More than half of the caregivers (56%) were found to be
employed with many among them (23%) doing their own small
business. More than half (23%) of the unemployed caregivers
(44%) were housewives. This shows that in the Nepalese context,
where there is no policy for health insurance, the caregivers have
to earn their living when the primary bread winners of the family
(adult males) fall sick. However, Belasco AG and Sesso R found
an almost equal distribution of caregivers who were employed
(34%), unemployed (33%) and homemakers (33%) [1]. On the
other hand, Bayoumi found 60% of the caregivers to be unem-
ployed or housewives and 40% to be employed [8]. Conversely,
Mollaoglu et al. found 80.3% of the caregivers to be housewives
and that profession had no impact on caregiver burden [10].
This study also revealed that there is significant difference
in burden among caregivers in terms of marriage, the widowed
scoring the highest median score in burden followed by married
and then single. Usually the widows and widowers have nobody
to share their sorrows with and often feel more burdened. At the
same time, the married caregivers have not only the patient but
also the whole family to look after and hence have higher amount
of burden scores. In contrast to this finding was the finding of
Mollaoglu in which caregiver burden was found to be statistically
significantly higher in single than in married caregivers [11].
The estimation of socioeconomic status showed that most of
the caregivers were in the upper lower class (45.7%) and lower
middle class (38.4%). There was significant difference in care-
giver burden in terms of socioeconomic status. The economic cri-
sis in this category of people seems to have increased the burden
in the caregivers significantly.
Among the caregivers in this study, 41% were found to be
spouses, 32% to be children, 10% to be parents, 9% siblings, 4%
children in laws and 3% were even grandchildren. This finding is
supported by studies done by Belasco AG and Sesso R and Gaugler
et al [1,12]. Yet another study revealed 65% of caregivers to be
spouses and also showed that spouse were found to have lower
mean value of caregiver burden as compared to other relations
[10]. In contrary, this study showed significant difference in care-
giver burden in terms of relationship, with spouses and parents
having higher median values of caregiver burden as compared to
other relations. This may be because in the Nepalese context,
the children live together with the parents and the spouses are
Citation: Shakya D,Tuladhar J, Poudel S.(2017) Burden and Depression among Caregivers of Hemodialysis Patients. Palliat Med Care 4(1): 1-6
Copyright: c
2017 Shakya, et al.
mainly housewives, thus they are more directly involved in the
care of their patients.
The median duration of dialysis was calculated to be 14
months in this study as compared to 51.5 months in a study done
in Turkey [13]. This may be because the center is relatively newly
established. Another study done in Pakistan revealed that 57.6%
had undergone dialysis for more than 8 months [14]. The same
study also showed that duration of dialysis had a negative corre-
lation with quality of life in the patients. However, the duration
of dialysis was not found to be associated with caregiver burden
in this study. But it has been proven during the qualitative anal-
ysis of a study that, as the disease worsens, new problems arise
in the patient and the caregiver burden inevitably aggravates by
time, eventually leading to burnout [15].
Majority of the patients (74.4%) were found to have 2 cycles
of dialysis a week followed by 20.7% having 3 cycles a week and
4.3% having one cycle a week. Similar results were shown by a
study done by Anees in which 77.6% had 2 cycles of dialysis per
week [14].
Besides having diabetes and hypertension as the causes of
ESRD, other comorbid conditions found in patients undergoing
dialysis were angina, congestive heart failure, arthritis, respira-
tory illness, neurologic diseases and liver diseases. No significant
differences in burden scores were found according to the nature
of the comorbid conditions. Similar finding was shown in the
study done by Suri et al where the presence or absence of co-
morbidity was not found to be associated with caregiver burden
[16].
4.3 Association of Caregiver Burden and Depression
In the present study, 35% of the caregivers were found to have
moderate to extreme depression. It is worth noting that among
these, 13.4% had severe and 2.4% had extreme depression. This
finding is comparable to the findings of the study done by Rioux et
al in Canada in which depression was found to be present in both
patients (47%) and caregivers (25%) and 14% of patients and
9% of caregivers had fulfilled criteria for severe depression [9].
Depressive symptoms and anxiety were also observed in 43.3%
and 27.5% of the caregivers respectively in a study done in 142
pairs of hemodialysis patients and their caregivers [13].
In this study, the caregiver burden was highly significantly
associated with depression with significant positive correlation
between the two (r=0.625). Hence, when the caregiver bur-
den increased, the depressive symptoms in caregivers increased as
well. A study analogous to this has shown that higher perceived
burden was significantly associated with higher BDI scores [16].
It was observed that the patients (40.74%) as well as the primary
caregivers (43.82%) had depressive symptoms. A positive asso-
ciation (r = 0.43, P < 0.001) was found between self-perceived
burden and the presence of depressive symptoms in patients also
[17].
5Conclusion
Majority of the caregivers of hemodialysis patients are fac-
ing burden of caring for a chronic patient. The caregiver burden
was found to be more in caregivers above 40 years of age, having
less than 10 years of formal education and perceiving less social
support. Moreover, caregiver burden was also found to be af-
fected by marital status and socioeconomic status but not affected
by the frequency of dialysis, duration of disease, comorbidity or
venous access. However, caregiver burden was found to be sig-
nificantly associated and correlated with depression, depression
increasing significantly with increasing burden.
Hence, chronic kidney disease and dialysis places an in-
creased demand on the caregivers of these patients when ongo-
ing lifestyle adjustments become necessary as the disease com-
plicates. In the Nepalese context, where there is no government
health insurance policies, less educated people and lesser facilities
of developing countries, the burden of caregivers are not given
sufficient attention. This results in more caregiver burnout and
exhaustion. Interventions to provide appropriate social support
services and improve psychological conditions of caregivers and
patients with ESRD should be planned and evaluated, particularly
in high-risk groups.
6Acknowledgement
The researchers acknowledge University Grants Commission
(UGC) for awarding a mini research grant to this study.This ar-
ticle is in accordance to the final report submitted to UGC. The
researchers are also thankful to Human Organ Transplant Center
for granting permission to collect data.
7Declaration
7.1 Conflict of Interest
A mini research grant (665 USD) was received for this study as a
motivation to the researchers. Ethical Approval: Ethical approval
for the study was taken from Institutional Review Committee of
Kathmandu Medical College.
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Citation: Shakya D,Tuladhar J, Poudel S.(2017) Burden and Depression among Caregivers of Hemodialysis Patients. Palliat Med Care 4(1): 1-6
Copyright: c
2017 Shakya, et al.
