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Joshua K. Muliira, DNP, RN
Irene B. Kizza, PhD, RN
Gloria Nakitende, BSN, RN
Roles of Family Caregivers and Perceived
Burden When Caring for Hospitalized
Adult Cancer Patients
Perspective From a Low-Income Country
KEY WORDS
Cancer patients
Caregiver burden
Family caregivers
Informal caregivers
Background: Family caregivers (FCGs) of adult cancer patients (ACPs) are
typically involved in the entire trajectory of cancer disease, from diagnosis to
survivorship or end of life. In developing countries, FCGs are more intensely involved
in the process of providing care to the hospitalized ACPs because of lack of
adequate cancer care resources. Active performance of tasks to meet the needs of
ACPs in the hospital setting is likely to elicit significant caregiver burden.
Objective: The aim of this study was to explore the tasks performed and the
caregiver burden experienced by FCGs of hospitalized ACPs in a sub-Saharan
country. Methods: A cross-sectional descriptive design was used to collect data
from 168 FCGs of ACPs. The Caregiver Burden Scale was used to measure burden.
Results: The most common cancer diagnosis in male and female ACPs was
Kaposi"s sarcoma (32.1%) and breast cancer (37.9%), respectively. The tasks
regularly performed by most FCGs for the ACPs were providing emotional support
(79.8%), feeding (68.5%), transporting to other appointments (62.5%), preparing
meals (55%), and giving medications (46.4%). Most FCGs (75%) were experiencing
severe or very severe general caregiver burden. The dimensions of caregiver burden
that were most severely impacted were general strain (70.6%), disappointment
(85.8%), and isolation (72%). Predictors of caregiver burden are reported.
Family Caregivers of Hospitalized ACPs Cancer Nursing
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Copyright B2018 Wolters Kluwer Health, Inc. All rights reserved.
Author Affiliations: Department of Adult Health & Critical Care, College of
Nursing, Sultan Qaboos University (Drs Muliira and Kizza), Muscat, Oman;
and Department of Nursing, School of Health Sciences, College of Health
Sciences, Makerere University (Ms Nakitende), Kampala, Uganda.
Author Contributions: J.K.M. and I.B.K. were responsible for the study
conception, design, and data analysis. I.B.K. and G.N. were responsible for data
collection. All the authors contributed intellectually to writing of the article.
The authors have no funding or conflicts of interest to disclose.
Correspondence: Joshua K. Muliira, Department of Adult Health & Critical
Care, College of Nursing, Sultan Qaboos University, PO Box 66, Al Khod,
Muscat, Oman (jkmuliira@gmail.com).
Accepted for publication December 11, 2017.
DOI: 10.1097/NCC.0000000000000591
Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Conclusion: Family caregivers of hospitalized ACPs experience severe caregiver
burden. The main forms of burden experienced were general strain, disappointment,
and isolation. Implications for Practice: Cancer care services in developing
countries should be strengthened with services that address FCGs"emotional needs
and human resources to curtail the strain imposed on FCGs.
Globally, the incidence and mortality rates for cancer
are still very high, with rates ranging from 100 to 400
per 100000 (men and women) and 50 to 200 deaths
per 100000 (men and women), respectively.
1
An estimated 14.1
million new cancer cases occurred worldwide in 2012, and 57%
of these were in less developed countries.
2
The less developed
countries of the world also accountedfor65%ofcancerdeaths.
1
Countries in sub-Saharan Africa (SSA) predominantly feature
on the list of less developed countries of the world, and they are
currently experiencing a major cancer burden.
1Y3
Approximately
70% of the global cancer deaths take place in middle- and low-
income regions of the world, and the burden of cancer in regions
such as SSA is projected to continue to increase.
1,4
The increasing cancer burden in SSA is worsened by the lack
of cancer care resources and the low healthcare system readiness
to cope with the healthcare needs of cancer patients.
3
The per-
sistence of problems such as a high prevalence of infectious
diseases such as human immunodeficiency virus (HIV), poor
healthcare infrastructure, insufficient numbers of healthcare per-
sonnel, advanced stage at presentation of cancer patients, and
limited treatment choices has led to high rates of cancer mortality
and morbidity in SSA.
3,5
Sub-Saharan Africa as a region has the
lowest global coverage of radiotherapy services,
6
and in some
countries, only 5% of cancer patients who require chemotherapy
have access to this type of treatment.
7
Many countries in SSA
have also not been able to adopt the most current evidence-
based cancer care guidelines; thus, advances in cancer treatment
have not translated into quality clinical practices and nursing care.
8
Uganda (one of the countries in SSA) is located in East
Africa, a region with an estimated overall cancer incidence and
mortality rates of 137.8 per 100000 and 106.5 per 100000,
respectively.
2
Like other countries in SSA, Uganda is faced
with increasing rates of cancer morbidity and mortality, lack of
efficient and accessible cancer care services, and inadequate
numbers of cancer care specialists.
2
Consequently, when cancer
patients are admitted in healthcare facilities to get cancer treat-
ment, their family members (family caregivers [FCGs]) play a
central role in providing the needed care. The FCGs bare a
sizable caregiving burden during the period of hospitalization.
An FCG is the family member who is directly involved in the
day-to-day care of the cancer patient during the period of hospi-
talization and while at home.
9
TheFCGsassumevarioustasks
and responsibilities during the period of hospitalization of the
cancer patient, and these may include assisting the patient with
activities of daily living, providing emotional support, assisting
with providing treatment regimens, and others.
The FCGs assume the caregivingresponsibilities without any
previous experience because, in many cases, the diagnosis of
cancer is sudden and marks the abrupt start of a routine that
involves multiple diagnostic tests, complex treatments, and hos-
pital admissions.
10
The FCGs are typically involved in all of the
phases of the cancer disease trajectory such as the diagnostic,
treatment, disease maintenance, recurrence, progression, pallia-
tive care, and end-of-life care phases.
9
The FCGs mostly lack the
knowledge and skills to perform the new tasks and responsibil-
ities associated with caring for a cancer patient in all of the pre-
viously mentioned phases. Many of the FCGs are uncertain about
what type of care to provide, when to seek professional assistance,
and how to provide the best cancer care because they are expe-
riencing the role for the first time.
9
While facing these dilemmas,
the FCGs also continue to perform their other social respon-
sibilities such as marital responsibilities and formal or informal
employment, together with the caregiving demands.
During the period of hospitalization, adult cancer patients
(ACPs) face many challenges, and these may include emotional
needs, physical needs, and others, which the FCGs are supposed
to help them with. Available studies show that the responsibil-
ities and tasks performed by FCGs while caring to meet the
needs of hospitalized ACPs elicit enormous strain and caregiving
burden. A study of FCGs recruited from hospital oncology units
in Taiwan showed that, while in the hospital, the FCGs for
ACPs have unmet supportive care needs related to how to meet
the patient"s activities of daily living, how to achieve adequate
control of the patient"s pain, how to manage the patient"scon-
cerns, and others.
11
Adult cancer patients who are undergoing chemotherapy
treatment in Uganda tend to be in a state of constant fear, fright,
worry, and discomfort.
12
They also experience regular discom-
fort due to the unmanaged adverse effects of chemotherapy,
worries related to financial cost of cancer treatment, and un-
known outcomes of the cancer diagnosis.
12
It is important to
highlight that, regardless of the magnitude of the caregiving
demands, the FCGs always strive to meet these demands. The
tasks and roles performed by FCGs to meet the caregiving
demands and needs of ACPs in the hospital setting (an unfamil-
iar environment), and in the absence of adequate support from
healthcare professionals, are likely to induce a high level of strain
and burden.
The caregiver burden associated with caring for cancer pa-
tients can negatively impact the physical, emotional, and social
well-being of the FCGs. Previous studies show that caregiver
burden can lead to poor health of the FCGs and ACPs. A study
of FCGs for patients with nonYsmall cell lung cancer recruited
in a comprehensive cancer center in the United States reported
that the FCGs experienced high subjective stress burden, high
psychological distress, low psychological quality of life, and low
social quality of life, despite reporting a high level of caregiving
preparedness.
13
The study also established that more than 50%
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of the caregiving distress experienced by the FCGs was due to
lifestyle interference stemming from the caregiving responsibilities.
13
A study conducted in Morocco showed that FCGs of cancer
patients experienced depression (22.7%), anxiety (79.3%), sleep
disorders (46%), loss of appetite (39.3%), and loss of employ-
ment (54%), family neglect (45%), and lost opportunities for
socialization (45%).
14
Many times, the disease of cancer causes changes in the pa-
tient"s functional ability, bodily functions, appearance, self-
image, and family and social roles.
15,16
The potential outcomes
of cancer and the process of caring for the affected patient lead
FCGs to live a life characterized with fear, uncertainty, unhappiness,
living in a state of emergency, feelings of added responsibility, and
sharing in the ACPs"pain.
17
All these changes enhance the caregiver
burden and impact the FCGs because they have to bear with the
situation and must continue to provide physical and emotional
support.
15
Unfortunately, very few studies have explored the
caregiver burden faced by the FCGs of hospitalized ACPs in
low-income countries. As a result, we do not have a clear under-
standing of the tasks performed and the burden faced by FCGs
during hospitalization of ACPs in these settings. This study
characterized the tasks performed and caregiver burden of FCGs
caring for hospitalized ACPs in a low-income setting.
Theoretical Framework
The Role Strain Theory (RST) was used to guide the study.
18
The RST focuses on the negative impact of performing mul-
tiple unfamiliar roles and the strategies that moderate the
impact. The RST explains that performing difficult and time-
consuming roles such as family caregiving is a source of role
conflict. The role conflict can lead to role strain.
18
The RST
defines role strain as the difficulty felt in meeting the multiple
roles and obligations or the perception that the overall situation
such as caregiving is stressful.
18,19
Role conflict is defined as the
incompatibility between demands of the varied roles.
18,20
For
instance, FCGs of ACPs have caregiving responsibilities while
at the same time they are employed and have other family obli-
gations and social responsibilities. The sources of role conflict
include the multiple roles performed, high role demands, incom-
patible roles, lack of time and resources, and others.
18
Role conflict and role strain are both influenced (positively or
negatively) by antecedents such as patient and FCG character-
istics, social characteristics, and the social environment.
18
In this
study, we considered the antecedents of role strain (caregiver
burden) such as social environment (hospital setting) and FCG
and ACP characteristics. We also measured the different aspects
of role conflict (tasks performed and needs of ACPs). The RST
was used to posit that the antecedents of hospital setting (social
environment) and FCG and ACP characteristics (individual
characteristics) influence the tasks performed and needs of ACPs
(role conflict) and caregiving burden faced by FCGs (role strain)
while caring for hospitalized ACPs. The role conflict arises from
the number of tasks performed while caring for hospitalized
ACPs, the needs and complaints of the ACPs, and how these
concurrently lead to strain perceived as caregiver burden.
Although this study did not specifically explore social support,
it is important to recognize that caregiver burden can be moder-
ated by social support resources in the hospital environment.
Therefore, being in a hospital environment with limited physi-
cal and social support resources may enhance the severity of
perceived caregiver burden. Literature shows that social support
can help to reduce role conflict and role strain.
21,22
In the cur-
rent study, role strain was conceptualized as the perceived care-
giver burden (general strain, isolation, disappointment, emotional
involvement, and environment burden) (see the Figure for the
study theoretical framework).
Aim
The aim of this study was to appraise the tasks performed and
caregiver burden experienced by FCGs during the period of
hospitalization of ACPs.
n
Methods
Study Population and Design
A cross-sectional design was used to recruit FCGs of ACPs
admitted at a national referral cancer care center in Uganda
(Uganda Cancer Institute [UCI]). The facility is government
Figure nConceptual framework of the study.
Family Caregivers of Hospitalized ACPs Cancer Nursing
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Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
funded and provides inpatient and outpatient cancer care services.
ThecancerpatientswhoareadmittedattheUCIcomefrom
various parts of the country and are accompanied by an FCG.
The FCG stays with the patient throughout the period of hos-
pitalization. On average, the facility receives 1700 new cancer
patients each year. The study targeted family members who were
the primary FCG of the ACP admitted at UCI.
The FCGs had to meet the inclusion criteria of being 18 years
or older, the primary FCG of an ACP who is older than 18 years,
the primary FCG of an inpatient diagnosed with any type of
cancer, the FCG of an ACP who has been admitted for at least
the past 7 days, able to provide written consent, and identified
by the nurses as the primary FCG. The following FCGs were
excluded from the study: individuals caring for patients still
under investigation for possible cancer, individuals who had any
type of professional training as a healthcare professional, and
individuals hired by the family to provide assistance to the ACP
at home or in the hospital. During the period of data collection,
a total of 220 FCGs were approached and 168 (76.4%) agreed
to participate in the study.
Study Instrument
An interview questionnaire was used to collect data. The ques-
tionnaire was composed of a demographic data sheet and the
Caregiver Burden Scale (CBS).
23
The demographic data sheet
was used to collect data about the characteristics of the FCGs
and ACPs. The FCGs were requested to state the tasks they
have been performing regularly for the ACPs during the cur-
rent hospital admission. The perceived caregiver burden was
measured using the CBS. Although the CBS was originally used
to measure caregiver burden for stroke patients, it is versatile and
reliably measures caregiver burden in cancer patients.
24Y26
The
CBS has been previously used to measure caregiver burden in
patients with lung cancer and in mothers caring for hospital-
ized children with cancer.
24Y26
The CBS contains 22 items,
and these are categorized under 5 domains (general strain, iso-
lation, disappointment, emotional involvement, and environ-
ment). The response to each item was recorded using a 4-point
Likert scale (1, not at all; 2, seldom; 3, sometimes; 4, often).
The total score in each domain and the overall score were com-
puted by generating sums of all items. Higher scores in each
domain and on the overall scale represent high caregiver burden.
The CBS is a reliable measure, and in other studies, it has been
reported to have a Cronbach"s!ranging from .70 to .87.
23
The
Cronbach"s!of the subscales of general strain, isolation, dis-
appointment, emotional involvement, environment, and the
overall CBS in this study were .82, .50, .60, .85, .50, and .86,
respectively.
Ethical Considerations
The study was reviewed and approved by the Research and
Ethics Committee of the UCI and the School of Health Sciences
at Makerere University. All the participants were older than
18 years. The FCGs and ACPs were required to provide
written informed consent before initiating data collection for
the study. The data for this study did not include any par-
ticipant or patient identifying information and were confi-
dentially stored.
Data Collection
The participants were selected using purposive sampling tech-
nique. On data collection days, the head nurses of the units
admitting ACPs were requested toidentifytheFCGofeachACP
who had a confirmed diagnosis of cancer and who had been an
inpatient for at least 7 days. The identified FCGs were approached
and requested to confirm whether they are the primary FCG of
the respective ACP. The available FCGs who were positively
identified as the primary FCG received a verbal explanation of
the study purpose and procedures. The FCGs and their re-
spective ACPs who agreed to participate completed the consent
form before initiating the data collection interview in a pre-
arranged private room. Data collection using interview ques-
tionnaires helped us to get complete data in a short time (FCGs
were not contacted again because of missing data) and to moni-
tor and limit the amount of time the FCG was away from the
ACP. The nurse assigned to the ACP was informed that the
FCG will be away from the patient for some time because of
participation in the study. The data collection process for each
FCG took approximately 45 minutes.
Data Analysis
The data were analyzed using SPSS Statistics for Windows ver-
sion 24. All tests were 2-sided, and Pe.05 was considered to be
statistically significant. The FCG characteristics, tasks performed,
and caregiver burden were summarized using descriptive statistics.
The caregiver burden data were not normally distributed. The
median total caregiver burden score was used as a reference point
to categorize the overall caregiver burden scores as moderate
burden (e55) and severe burden (Q55). The #
2
test was used to
explore the FCGs"characteristics, ACPs"characteristics, and
tasks associated with caregiver burden. Multivariate regression
was used to explore the predictors of each domain of burden
based on likelihood and relevant confounders after bivariate
analysis.
n
Results
Characteristics of the FCGs
Most FCGs were female and earned a monthly income greater
than the poverty line benchmark of the country (61.9%). A
large number of FCGs were living in the same household as the
ACPs (68.5%), had been providing care to ACPs for more than
10 months (44.6%), and were directly related to the ACPs (76.2%)
as a spouse, child, sibling, or parent. There was a significant
relationship between the FCG characteristics of age (#
2
=3.06,
P= .050), level of education (#
2
=8.17,P=.006),employ-
ment status (#
2
=5.75,P= .020), location of residence (#
2
=
10.08, P= .002), and overall perceived caregiver burden (Table 1).
4nCancer Nursing
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Characteristics of the Hospitalized ACPs
The patients"average age, time since the first diagnosis of cancer,
and length time in the hospital were 43.3 T14.5 years, 23.24 T
25.8 months, and 11.8 T14.5 days, respectively. Most of
the ACPs had known their cancer diagnosis for a period of
7 months or more (82.1%). The cancer diagnosis for most male
ACPs was Kaposi"s sarcoma (32.1%), prostate cancer (18.5%),
or leukemia (17.3%). The other diagnoses (16.7%) of male
ACPs were pancreatic cancer, esophageal carcinoma, bone cancer,
seminoma, hepatocellular carcinoma, and colorectal cancer.
The female ACPs mostly had breast cancer (37.9%), Kaposi"s
sarcoma (23%), and cervical cancer (13.8%), stomach cancer
(10.3%), ovarian cancer (4.6%), lung cancer (2.3%), or leu-
kemia (2.3%). The other cancer diagnoses (5.7%) of female
ACPs were esophageal, colorectal, and hepatocellular carcinoma
and pancreatic cancer. Adult cancer patients were receiving
cancer treatments such as chemotherapy (85.1%), radiotherapy
(7.7%), palliative care (6%), or no active treatment (1.2%).
There was a significant positive relationship between the num-
ber of days spent in the hospital during the current admission
and the perceived caregiver burden (#
2
=6.87,P=.013).The
other ACPs"characteristics were not significantly associated
with caregiver burden (Table 2).
Prevalent Problems or Complaints of
Hospitalized ACPs
Table 3 shows the regular problems or complaints of ACPs
during hospitalization, and the most common ones were pain
(75%), nausea (58.3%), general weakness (55.4%), and vomiting
(50%). There was a significant association between reports of
fever and overall caregiver burden (#
2
= 4.70, P= .035). The
otherproblemsorcomplaintswere not significantly associated
with caregiver burden.
Tasks Performed by the FCGs for
Hospitalized ACPs
The FCGs were performing tasks that require high-level skills
such as giving medications. The tasks that were common and
regularly performed by most FCGs were providing emotional
support (79.8%), feeding the patient (68.5%), transporting
the patient to and from other medical appointments (62.5%),
making and preparing meals for the patient (55%), and giving
medications to ACPs (46.4%). A large number of the FCGs
also reported performing other tasks such as patient lifting,
ambulating, and changing the patient"s position while in bed
(Table 4).
Table 1 &Characteristics of the Family Caregivers (N = 168)
Characteristics Category n (%)
Category of Overall Burden
#
2
and P
Moderate
(N = 92), n (%)
Severe
(N = 76), n (%)
Gender Male 40 (23) 19 (20.7) 21 (27.6) #
2
= 0.82
Female 128 (76) 71 (77.2) 57 (75) P= .380
Marital status Married 48 (28.6) 30 (32.6) 18 (23.7) #
2
= 1.62
Single 120 (71.4) 62 (67.4) 58 (76.3) P= .232
Living arrangement Not same household
as patient
53 (31.5) 30 (32.6) 23 (30.3) #
2
= 0.11
Same household
as patient
115 (68.5) 62 (67.4) 53 (69.7) P= .868
Location of residence Urban setting 71 (42.3) 49 (53.3) 22 (29) #
2
= 10.08
Rural setting 97 (57.7) 43 (46.7) 54 (71.1) P= .002
Age (mean, 36 T12.7), y 18Y36 92 (54.8) 56 (60.9) 36 (47.4) #
2
= 3.06
Q36 76 (45.2) 36 (39.1) 40 (52.6) P= .050
Employment status Employed 90 (53.6) 57 (62) 33 (43.4) #
2
= 5.75
Unemployed 78 (46.4) 35 (38) 43 (56.6) P= .020
Level of education eSecondary school 104 (61.9) 48 (52.2) 56 (73.7) #
2
= 8.17
QDiploma 64 (38.1) 44 (47.8) 20 (26.3) P= .006
Monthly income (mean,
82.7 T102.3), US $
e75 64 (38.1) 33 (35.9) 31(40.8) #
2
= 0.43
Q76 104 (61.9) 59 (64.1) 45 (59.2) P= .527
People FCG is responsible
for (mean, 3.3 T2.6)
e3 98 (58.3) 51 (55.4) 47(61.8) #
2
= 0.49
Q4 70 (41.7) 40 (43.5) 30 (39.5) P= .530
Length of time as caregiver
(mean, 48.4 T47.3), wk
e32 87 (51.8) 49 (53.3) 38 (50) #
2
= 0.18
Q33 81 (48.2) 43 (46.7) 38 (50) P= .757
Relationship with patient Spouse 46 (27.4) 19 (20.7) 27 (35.5) #
2
= 4.63
Not spouse 122 (72.6) 73 (79.3) 49 (64.5) P= .380
Abbreviation: FCG, family caregiver.
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Perceived Caregiver Burden by FCGs
The median CBS score was 55.2; because the data were not nor-
mally distributed, the median was used to categorize overall care-
giver burden scores as moderate burden (e55) and severe burden
(Q55). The mean total caregiver burden (mean, 53.73 T12. 04)
was equivalent to severe burden. According to the ranges recom-
mended by the CBS, most of the FCGs (75%) were experienc-
ing severe or very severe overall caregiver burden. The FCGs were
experiencing caregiver burden in multiple dimensions. The dimen-
sions that were most impacted (severe or very severe) were general
strain (70.6%), disappointment (85.8%), and isolation (72%) (Table 5).
Table 2 &Characteristics of the Adult Cancer Patients (N = 168)
Characteristic Category n (%)
Category of Overall Burden
#
2
and P
Moderate
(N = 92), n (%)
Severe
(N = 76), n (%)
Gender Male 81 (48.2) 40 (43.5) 41 (53.9) #
2
= 1.83
Female 87 (51.8) 54 (58.7) 35 (40.1) P= .215
Age (M= 43.3 T14.5), y 18Y41 88 (52.4) 51 (55.4) 37 (48.7) #
2
= 0.76
Q42 80 (47.6) 41 (44.6) 39 (51.3) P= .439
Time since cancer diagnosis
(mean, 23.2 T25.8), mo
e23 104 (61.9) 58 (63) 46 (60.5) #
2
= 0.11
Q24 74 (44.1) 34 (37) 30 (39.5) P= .752
Days spent in hospital on current
admission (mean, 11.8 T14.5)
e7 85 (50.6) 55 (59.8) 30 (39.5) #
2
= 6.87
Q8 83 (49.4) 37 (40.2) 46 (60.5) P= .013
Type of cancer treatment
being received
Chemotherapy 152 (90.5) 84 (91.3) 68 (89.5) #
2
= 0.16
Others 16 (9.5) 8 (8.7) 8 (10.5) P= .794
Table 3 &Common Problems or Complaints Among Hospitalized Adult Cancer Patients (N = 168)
Problem (Multiple Responses) n (%)
Category of Overall Burden
#
2
and PModerate (N = 92), n (%) Severe (N = 76), n (%)
Pain Yes 126 (75) 68 (73.9) 58 (76.3) #
2
= 0.13
No 42 (25) 24 (26.1) 18 (23.7) P= .858
Nausea Yes 98 (58.3) 59 (64.1) 39 (51.3) #
2
= 2.81
No 70 (41.7) 33 (35.90 37 (48.7) P= .116
General weakness Yes 93 (55.4) 50 (54.3) 43 (56.6) #
2
= 0.09
No 75 (44.6) 42 (45.7) 33 (43.4) P= .876
Vomiting Yes 84 (50) 47 (51.1) 37 (48.7) #
2
= 0.10
No 84 (50) 45 (48.9) 39 (51.3) P= .877
Loss of hair Yes 55 (32.7) 32 (34.8) 23 (30.3) #
2
= 0.39
No 113 (67.3) 60 (65.2) 53 (69.7) P= .621
Lack of appetite Yes 53 (31.5) 30 (32.6) 23 (30.3) #
2
= 0.12
No 115 (68.5) 62 (67.4) 53 (69.7) P= .868
Tired of hospital Yes 50 (29.8) 22 (23.9) 28 (36.8) #
2
= 3.33
No 118 (70.2) 70 (76.1) 48 (63.2) P= .090
Tiredness Yes 43 (25.6) 21 (22.8) 22 (29) #
2
= 0.82
No 125 (74.4) 71 (77.2) 54 (71.1) P= .380
Lack of sleep Yes 38 (22.6) 17 (18.5) 21 (27.6) #
2
= 1.99
No 130 (77.4) 75 (81.5) 55 (72.4) P= .195
Fever Yes 34 (20.2) 13 (14.1) 21 (27.6) #
2
= 4.70
No 134 (79.8) 79 (85.9) 55 (72.4) P= .035
Inability to move Yes 21 (12.5) 11(12) 10 (13.2) #
2
= 0.06
No 147 (87.5) 81 (88) 66 (86.8) P= .819
Bleeding Yes 20 (11.9) 10 (10.9) 10 (13.2) #
2
= 0.21
No 148 (88.1) 82 (89.1) 66 (86.8) P= .811
Wounds Yes 17 (10.1) 8 (8.7) 9 (11.8) #
2
= 0.45
No 151 (89.9) 84 (91.3) 67 (88.2) P= .610
Others Yes 25 (14.9) 12 (13) 13 (17.1) #
2
= 0.54
No 143 (85.1) 80 (87) 63 (82.9) P= .517
6nCancer Nursing
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Predicators for Specific Domains of
Caregiver Burden
The predictors of overall perceived caregiver burden and of
each domain of burden (general strain, isolation, emotional
involvement, environmental, and disappointment) are sum-
marized in Tables 6 and 7. The main predictors of overall
perceived caregiver burden (Table 6) were the FCGs"level of
education (P= .018), ACPs"length of stay in the hospital (P=
.031), and performing the task of giving medications to the
ACPs (P= .049). The significant predictors of disappointment,
emotional involvement, and environment burden are stated in
Table 7. The predictors of disappointment were FCG level of
education (P=.003),numberofpeoplecaredfor(P=.028),
and relationship with the patient (P= .040). The key pre-
dictors of emotional involvement were FCG marital status (P=
.004) and ACP complaint of general weakness (P=.003).The
main predictors of environmental burden were the care activ-
ities of making meals (P= .009), washing and body hygiene,
ACP complaint of pain (P= .029), and the FCG relationship
with the ACP (P=.029).
n
Discussion
The current study shows that FCGs were mainly unmarried
women and had close family relationships (spouse, child, sib-
ling, or parent) tothe ACPs. The FCGs were caring for ACPs in
different states of discomfort as indicated by the high number of
ACPs complaining of pain, nausea, general weakness, and vomit-
ing. This meant that FCGs were intensely physically and emo-
tionally involved in the care of ACPs. The main tasks or care
the FCGs were providing during hospitalization of the ACPs
involved providing emotional support (79.8%), giving medica-
tions (46.4%), and assisting with activities of daily living. Similar
findings have been reported in other countries with large low- and
Table 5 &Perceived Caregiver Burden Among Family Caregivers (N = 168)
Type of Burden Level of Burden n (%) Mean SE
Overall caregiver burden Very severe (67Y88) 24 (14.3) 53.73 T12.04 (severe) 0.93
Severe (45Y66) 102 (60.7)
Moderate (23Y44) 42 (25)
Mild (e22) 0 (0)
General strain Very severe (25Y32) 50 (29.9) 20.55 T6.14 (severe) 0.47
Severe (17Y24) 68 (40.7)
Moderate (9Y16) 45 (26.9)
Mild (e8) 4 (2.4)
Isolation Very severe (10Y12) 27 (16) 7.69 T2.13 (severe) 0.17
Severe (7Y9) 94 (56)
Moderate (4Y6) 39 (23.2)
Mild (e3) 8 (4.8)
Disappointment Very severe (16Y20) 50 (29.8) 13.6 T3.33 (severe) 0.26
Severe (11Y15) 94 (56)
Moderate (6Y10) 20 (11.9)
Mild (e5) 4 (2.3)
Emotional involvement Very severe (10Y12) 16 (9.5) 5.17 T2.61 (moderate) 0.20
Severe (7Y9) 26 (15.5)
Moderate (4Y6) 66 (39.3)
Mild (e3) 60 (35.7)
Environment Very severe (10Y12) 20 (11.9) 6.64 T2.40 (moderate) 0.19
Severe (7Y9) 61 (36.3)
Moderate (4Y6) 57 (33.9)
Mild (e3) 30 (17.9)
Table 4 &Tasks Performed by Family Caregivers
for Hospitalized Adult Cancer Patients
(N = 168)
Task Performed by the Family
Caregiver Response n (%)
Providing emotional support to
the patient
Yes 134 (79.8)
Feeding the patient Yes 115 (68.5)
Transporting the patient to and
from medical appointments in
other units
Yes 105 (62.5)
Making and preparing meals for
the patient
Yes 93 (55.4)
Giving medications to the patient Yes 78 (46.4)
Helping with lifting, ambulating,
and changing patient position
while in bed
Yes 66 (39.3)
Managing household tasks while the
patient is in the hospital
Yes 52 (31)
Washing the patient to maintain
body hygiene
Yes 48 (28.6)
Helping the patient with toileting Yes 32 (19)
Cleaning of patient wound
(wound care)
Yes 21 (12.5)
Family Caregivers of Hospitalized ACPs Cancer Nursing
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middle-income populations such as Indonesia.
27
The study con-
ducted in Indonesia showed that FCGs caring for hospitalized
ACPs most often were helping patients with psychological symp-
toms, addressing social issues, activities of daily living, and spiri-
tual and financial issues.
27
On the other hand, a study conducted
in a more high-income country (Ireland) showed that the FCGs
of hospitalized cancer patients were helping with more general
and nonmedical tasks such as navigating the health system and
helping with managing emotions and appointments.
28
The study conducted in Ireland found that fewer FCGs (10%)
were helping with activities such as feeding the patient.
28
It seems
that, in low-income settings, FCGs of hospitalized ACPs, like
their counterparts in high-income settings, provide emotional
support. However, FCGs in low-income settings also have the
added burden of performing nursing-oriented care such as feed-
ing, giving medications, and others. The added burden seems to
come from tasks that can be categorized under the scope of prac-
tice of professional nursing. This may be implying that, in low-
income settings, FCGs are bridging the gaps in cancer care services
and the healthcare system by providing the care that should
otherwise be nurses"responsibility. The extensive involvement of
FCGs in performance of unfamiliar and sometimes professional
level tasks elicits severe strain, isolation, and disappointment.
The current study established that the FCGs were experienc-
ing severe or very severe caregiver burden (75%). The caregiver
burden was in the form of general strain (70.6%), disappoint-
ment (85.8%), and isolation (72%). Closely similar results have
been reported in Nigeria.
29
The FCGs in the study from Nigeria
were found to have severe burden (46.2%) and frequently expe-
rienced physical, psychological, financial, and social burden.
29
Studies from countries with large low-income populations (India
and Thailand) and moderately developed healthcare systems
Table 7 &Predictors of Emotional Involvement, Environmental, and Disappointment Burden During Care of
Hospitalized ACPs (N = 168)
Domain Predictor BCoefficient tPConfidence Interval
Disappointment Level of education of caregiver j1.64 j2.99 .003 j2.72 to j0.56
Income of caregiver 1.04 1.91 .058 j0.04 to 2.12
Number of people cared for j1.14 j2.21 .028 j2.16 to j0.12
Relationship with patient j0.33 j2.07 .040 j0.64 to j0.02
Emotional involvement Marital status of caregiver 0.98 2.89 .004 0.31Y1.66
General weakness 1.17 2.99 .003 0.40Y1.94
Tiredness j0.93 j2.12 .036 j1.80 to j0.06
Feeding j0.76 1.94 .054 j0.01 to 1.53
Making meals j0.71 j1.84 .067 j1.48 to 0.05
Social and emotional support j1.22 j2.57 .011 j2.15 to j0.28
Environment Age of FCG 0.77 1.97 .050 j0.01 to 1.54
Marital status of caregiver j0.95 j2.02 .045 j1.87 to j0.02
Relationship with patient j0.34 j2.63 .010 j0.59 to j0.08
Pain 0.99 2.21 .029 0.10Y1.87
Wounds 1.17 2.01 .046 0.02Y2.32
Washing and body hygiene 1.44 3.33 .001 0.59Y2.30
Lifting and ambulation j0.92 j2.27 .024 j1.72 to j0.12
Making meals j1.00 j2.65 .009 j1.75 to j0.26
Abbreviations: ACP, adult cancer patient; FCG, family caregiver.
Table 6 &Predictors of Overall Burden, General Strain, and Isolation Burden During Care of Hospitalized
ACPs (N = 168)
Domain Predictor BCoefficient tPConfidence Interval
General caregiving burden Level of education of caregiver 2.220 2.39 .018 0.39Y4.05
Length of stay in hospital on current admission 0.234 2.18 .031 0.44Y9.17
Giving medications 4.806 1.98 .049 0.00Y0.47
General strain Location of residence j2.830 j3.06 .003 j4.65 to j1.01
Feeling tired of the hospital 2.390 2.39 .018 0.42Y0.44
Isolation Income of caregiver 0.631 2.10 .038 0.04Y1.23
Relationship with patient 1.247 2.50 .013 0.26Y2.23
Location of residence j0.831 j2.78 .006 j1.42 to j0.24
Vomiting j0.777 j2.76 .007 j1.33 to j0.22
Giving medications 1.388 4.09 .000 0.72Y2.06
Washing and body hygiene 1.162 3.10 .002 0.42Y1.90
Social and emotional support j1.149 j3.05 .003 j1.89 to j0.41
Abbreviation: ACP, adult cancer patient.
8nCancer Nursing
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show findings that are contrary to ours.
30,31
A study conducted
in India, but with a large number of male FCGs of ACPs (45%),
showed that most (56.5%) had no or minimal burden and only
37.5% had mild to moderate burden measured with the Zarit
Burden Inventory.
30
A study conducted in Thailand also found
that most FCGs of ACPs (63%) had no burden and this was
attributed to the sociocultural values of the participants.
31
In our study, a large number of the male (32.1%) and female
(23%) ACPs had Kaposi"s sarcoma, which is an HIV-associated
malignancy. Patients with HIV/AIDS have a high risk for Kaposi"s
sarcoma (30Y90 times), lymphomas (5 times), and cervical cancer
(double the risk).
5
It is also important to note that 27.4% of
the FCGs reported that they were spouses to the ACP they
were caring for. Therefore, there is a chance that some of the
FCGs were providing care to the ACPs when they were having
the HIV infection. The physical and emotional toll of having a
positive HIV status could have enhanced the perceived strain or
caregiver burden among the FCGs.
Our study also shows that the FCGs performed various tasks
that led them to experience strain, isolation, and disappoint-
ment. Therefore, to provide good cancer care services in low-
income settings, there is a need for deliberate FCG support
systems during the period of in-hospital cancer treatment for the
ACP. Providing deliberate support care reduces the tendency of
perceiving FCGs as assets during in-hospital cancer care
32
and
may enhance the outcomes of the ACPs. The findings of our
study support the voices calling for a paradigm shift in cancer
care services toward one that requires clinicians to view and
care for the ACP and FCG as a unit.
32
This approach enables
the FCGs to have space to care for the ACPs without worrying
about the risk of developing poor health. The outcome of this
approach is a holistic and synergistic improvement in the health
of ACPs and FCGs.
The main predictors of overall caregiver burden were FCGs"
level of education, length of stay in the hospital, and performing
the task of giving medications. As summarized in Tables 6 and 7,
each domain of caregiver burden had different predictors.
Other studies of cancer FCGs have also reported closely similar
predictors, and these include marital status,
31
level of edu-
cation,
30
care receivers"functional ability, duration of care, and
the desire to continue caregiving.
29
The significant predictors
identified by our study are of value because they can be used
by nurses to determine the support needed by individual FCGs
and implementation of prompt tailored support interventions.
The ACPs and FCGs can be assessed early in the cancer
disease trajectory to identify the unit that needs support, to de-
crease caregiver strain, and prevent the detrimental effects of
caregiving on the FCGs and family.
33
Early assessment and
interventions are especially important because a large number
of FCGs are also caring for other family members. Therefore,
the negative impact of caregiver burden presents a risk not only
to the FCGs and ACPs but also to the entire family. Oncology
nurses, if available, can assess, teach, and support the FCGs, as
well as generate the evidence needed to improve clinical prac-
tice.
34
In low-income settings with a high prevalence of cancer,
there is a need for more professional oncology nurses to care
for ACPs and to support and educate the FCGs. Other specific
interventions that can be implemented by oncology nurses to
improve the well-being of FCGs include psychotherapy and
group therapy to enhance self-esteem and coping, psychoedu-
cation skills training to promote confidence and self-efficacy,
family meetings to provide a safe setting to process emotions,
respite care to reduce burnout, and palliative and hospice care
to promote healthy bereavement.
35
Our study had limitations such as a small sample recruited
from a single site in Uganda and use of participant interview to
collect data. There is also limited literature about the plight of
FCGs of cancer patients that we could use to compare with
those in Uganda. Despite its limitations, this description of
FCG roles, tasks, and caregiver burden has established that they
(FCGs) experience severe or very severe strain, isolation, and
disappointment while caring for hospitalized ACPs. The FCGs
perform several unfamiliarroles and tasks, and some of these are
the nurses"responsibilities. The findings call for more studies and a
deeper examination of inpatient cancer care in low-income settings.
Implications
Most FCGs reported severe or very severe caregiver burden.
This is an indicator that both the ACPs and their FCGs (as a
unit) need care during the period of hospitalization. Trained
specialized oncology nurses, when available, can play a vital role
in meeting the needs of the ACPs and FCGs. Therefore,
availability of adequate support from trained nurses is one of the
key strategies that can be used to moderate the severe burden
experienced by FCGs. The nurses can access, assess, and identify
FCGs experiencing general strain, disappointment, and isolation,
because of their professional training and close interaction during
patient care. The nurses can also promptly intervene to reduce the
number of tasks performed by FCGs to allow for a period of
respite. Therefore, one of the needed responses to address the
cancer burden in low-income settings is to increase the number of
specialized oncology nurses to meet the needs of the unit (ACP
and FCG). The nurses can lead efforts to integrate supportive care,
respite care, psychoeducation, and other interventions that meet
the physical and psychosocial needs of both ACPs and FCGs.
Conclusion
The FCGs perform important roles and tasks during hospital-
ization of ACPs in low-income settings. Some of the roles and
tasks performed by the FCGs are part of the responsibilities of
professional nurses. However, the process of caregiving and the
roles and tasks performed by FCGs lead them to experience
severe general strain, disappointment, and isolation. Therefore,
one of the strategies needed to improve cancer care for inpatients
in low-income settings is a realignment to view FCGs and ACPs
as 1 unit that needs holistic care and streamlining of human
resources to ensure availability of adequate numbers of trained
oncology nurses to meet the needs of the unit.
ACKNOWLEDGMENTS
The authors would like to acknowledge the assistance of the
nurses, staff, and patients of the Uganda Cancer Institute. The
Family Caregivers of Hospitalized ACPs Cancer Nursing
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, Vol. 00, No. 0, 2018 n9
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authors would also like to acknowledge the support toward sta-
tistical analysis and data management provided by Mr Charles
Osingada.
References
1. Torre LA, Siegel RL, Ward EM, Jemal A. Global cancer incidence and
mortality rates and trendsVan update. Cancer Epidemiol Biomarkers Prev.
2016;25(1):16Y27.
2. Torre LA, Bray F, Siegel RL, Ferlay J, Lortet-Tieulent J, Jemal A. Global
cancer statistics, 2012. CA Cancer J Clin. 2015;65(2):87Y108.
3. Magrath I, Sutcliffe S. Building capacity for cancer treatment in low-
income countries with particular reference to East Africa. Cancer Contr.
2014;2014:61Y66.
4. Stewart B, Wild CP. The global and regional burden of cancer. In: Stewart
BW, Wild CP, eds. World Cancer Report 2014. Geneva, Switzerland:
WHO Press; 16.
5. Kingham PT, Alatise OI, Vanderpuye V, et al. Treatment of cancer in
sub-Saharan Africa. Lancet Oncol. 2013;14:e158Ye167.
6. Abdel-Wahab M, Bourque J-M, Pynda Y, et al. Status of radiotherapy
resources in Africa: an International Atomic Energy Agency analysis. Lancet
Oncol. 2013;14:e168Ye175.
7. Wairagala W. Working to improve access to palliative care in Africa.
Lancet Oncol. 2010;11(3):227Y228.
8. O"Brien M, Mwangi-Powell F, Adewole IF, et al. Cancer control in Africa
5: improving access to analgesic drugs for patients with cancer in sub-
Saharan Africa. Lancet Oncol. 2013;14(4):e176Ye182.
9. Given BA, Given CW, Sherwood PR. Family and caregiver needs over the
course of the cancer trajectory. J Support Oncol. 2012;10(2):57Y64.
10. Hendrix CC, Bailey DE, Steinhauser KE, et al. Effects of enhanced
caregiver training program on cancer caregiver"s self-efficacy, prepared-
ness, and psychological well-being. Support Care Cancer. 2016;24(1):
327Y336.
11. Chen S-C, Lai Y-H, Huang B-S, Lin C-Y, Fan K-H, Chang JT-C.
Unmet supportive care needs and characteristics of family caregivers
of patients with oral cancer after surgery. Psychooncology. 2014;23:
569Y577.
12. Wampaalu PB, Eriksson LE, Naamala A, Nabirye RC, Wettergren L.
Experiences of patients undergoing chemotherapyVa qualitative study of
adults attending Uganda Cancer Institute. Afr Health Sci. 2016;16(3):
744Y749.
13. Fujinami R, Sun V, Zachariah F, Uman G, Grant M, Ferrell B. Family
caregiver"s distress levels related to quality of life burden, and preparedness.
Psychooncology. 2015;24(1):54Y62.
14. Lkhoyaali S, El Haj MA, El Omrani F, et al. The burden among family
caregivers of elderly cancer patients: prospective study in a Moroccan
population. BMC Res Notes. 2015;8:347.
15. Schumacher KL, Stewart BJ, Archbold PG, Caparro M, Mutale F,
Agrawal S. Effects of caregiving demand, mutuality, and preparedness on
family caregiver outcomes during cancer treatment. Oncol Nurs Forum.
2008;35(1):49Y56.
16. Kim KS, Kwon SH. Comfort and quality of life of cancer patients. Asian
Nurs Res (Korean Soc Nurs Sci). 2007;1(2):125Y135.
17. Doumit MA, Huijer HAS, Kelley JH, Nassar N. The lived experience of
Lebanese family caregivers of cancer patients. Cancer Nurs. 2008;31(4):
E36YE42.
18. Goode WJ. A theory of role strain. Am Sociol Rev. 1960;25:483Y496.
19. Archbold PG, Stewart BJ, Greenlick MR, Harvath TA. Mutuality and
preparedness as predictor of caregiver role strain. Res Nurs Health. 1990;13(6):
375Y384.
20. Halpern DF. Psychology at the intersection of work and family: recom-
mendations for employers, working families, and policy makers. Am Psychol.
2005;60(5):367Y409.
21. Erdwins CJ, Buffardi LC, Casper WJ, O"Brien AS. The relationship of
women"s role strain to social support, role satisfaction, and self-efficacy.
Fam Relat. 2001;50(3):230Y238.
22. Ang S, Malhotra R. Expressive social support buffers the impact of care-
related work interruptions on caregivers"depressive symptoms. Aging Ment
Health. 2017:1Y9.
23. Elmst*hl S, Malmberg B, Annerstedt L. Caregiver"s burden of patients 3
years after stroke assessed by a novel caregiver burden scale. Arch Phys Med
Rehabi. 1996;77(2):177Y182.
24. Borges EL, Franceschini J, Costa LH, Fernandes AL, Jamnik S, Santoro IL.
Family caregiver burden: the burden of caring for lung cancer patients
according to cancer stage and patient quality of life. JBrasPneumol.
2017;43(1):18Y23.
25. Tan JY, Molassiotis A, Lloyd-Williams M, Yorke J. Burden, emotional
distress and quality of life among informal caregivers of lung cancer patients:
an exploratory study. Eur J Cancer Care. 2017;27(1):e12691. DOI: 10.1111/
ecc.12691.
26. Salmani N, Sheikhpour R, Hashemi A, MirakhorAli M. Burden of care
evaluation in mothers of cancer children admitted to Shahid Sadoughi
Hospital, Yazd, Iran. Iran J Ped Hematol Oncol. 2016;17(1):16Y24.
27. Effendy C, Vernooij-Dassen M, Setiyarini S, et al. Family caregivers"involve-
ment in caring for a hospitalized patient with cancer and their quality of life
in a country with strong family bonds. Psychooncology. 2015;24(5):585Y591.
28. Balfe M, O’Brien KM, Timmons A, et al. Informal caregiving in head
and neck cancer: caregiving activities and psychological well-being. Eur J
Cancer Care. 2016. DOI: 10.1111/ecc.12520.
29. Akpan-Idiok PA, Anarado AN. Perceptions of burden of caregiving by
informal caregivers of cancer patients attending University of Calabar
Teaching Hospital, Calabar, Nigeria. Pan Afr Med J. 2014;18:159.
30. Lukhmana S, Bhasin SK, Chhabra P, Bhatia MS. Family caregivers"burden:
a hospital based study in 2010 among cancer patients from Delhi. Indian J
Cancer. 2015;52:146Y151.
31. Chindaprasirt J, Limpawattana P, Pakkaratho P, et al. Burdens among
caregivers of older adults with advanced cancer and risk factors. Asian Pac
J Cancer Prev. 2014;15(4):1643Y1648.
32. Ekstedt M, Stenberg U, Olsson M, Ruland CM. Health care pro-
fessionals"perspectives of the experiences of family caregivers during in-
patient cancer care. J Fam Nurs. 2014;20(4):462Y486.
33. Jayani R, Hurria A. Caregivers of older adults with cancer. Semin Oncol
Nurs. 2012;28(4):221Y225.
34. Grant M, Ferell B. Nursing role implications for family caregiving.
Semin Oncol Nurs. 2012;28(4):279Y282.
35. Glajchen M. Physical well-being of oncology caregivers: an important
quality-of-life domain. Semin Oncol Nurs. 2012;28(4):226Y235.
10 nCancer Nursing
A
, Vol. 00, No. 0, 2018 Muliira et al
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