Ij

This material is protected by U.S. copyright law. Unauthorized reproduction is prohibited. To purchase quantity reprints,
please e-mail reprints@ons.org or to request permission to reproduce multiple copies, please e-mail pubpermissions@ons.org.
ONLINE EXCLUSIVE
Effect of Caregiver Perception of Preparedness
on Burden in an Oncology Population
Mary Scherbring, MS, RN, OCN
Key Points . . .
Purpose/Objectives: To identify the level of lay caregiver
burden and perception of preparedness that exists for the
oncology population prior to and just after hospital dis-
The experience of caregiver burden for lay caregivers of pa-
charge.
tients with cancer is important to recognize as a quality-of-life
Design: Descriptive, correlational design using repeated
factor.
measures.
Setting: Large, tertiary care, private medical center in
Further efforts to define and assess caregivers' perceptions of
the midwestern United States.
preparedness and burden are required.
Sample: 59 lay caregivers of patients with cancer who
were discharged from inpatient hospital status.
Caregivers' perceptions of preparedness and burden, as cur-
Methods: Caregivers completed Robinson's Caregiver
rently measured, reveal that neither variable is affected sig-
Strain Index and Archbold's Preparedness Scale question-
nificantly by the transition from inpatient care to home.
naires immediately prior to discharge, 710 days postdis-
charge, and 2830 days postdischarge.
The relationship between caregiver perception of preparedness
Main Research Variables: Caregivers' perception of
and burden offers nurses a significant and unique opportunity
preparedness and burden.
Findings: Preparedness levels ranged from "somewhat"
to have an impact on the lives of caregivers and patients.
to "pretty well" prepared and were consistent over time.
Burden levels were moderate and also consistent over
time. Increased levels of preparedness were associated
with decreased levels of burden, and that relationship was
sition from acute inpatient care to the homecare setting likely
consistent over time.
requires the involvement of family members or significant oth-
Conclusions: Caregivers' levels of preparedness can be
ers in a caregiving model (Given & Given, 1996; Whedon,
enhanced, although no significant differences were re-
1998). The provision of comprehensive nursing care requires
ported in the period from prehospital discharge to one
that patients and their informal caregivers receive appropriate
m o n t h following discharge. Burden experiences of
support and education as they move throughout the healthcare
caregivers are real and not affected by the transition from
continuum. Nurses must have a thorough understanding of the
hospital to home. Burden experiences can be influenced
phenomenon and degree of caregiver burden experienced by
by perceptions of preparedness.
Implications for Nursing: Efforts to enhance the pre-
the caregivers of their patients.
paredness of lay caregivers can influence their burden
The existence of caregiver burden has been recognized for
experience.
many years. Beginning in the 1980s, various authors have
identified caregiver burden as a consequence of providing for
the healthcare needs of patients (George & Gwyther, 1986;
ancer is one of many chronic diseases that may neces-
C
sitate multiple interactions with healthcare providers,
including repeated hospitalizations. The use of Diag-
Mary Scherbring, MS, RN, OCN  , is a nursing education specialist
nostic Related Groups, beginning in 1983, accompanied by in-
in the Department of Nursing at the Mayo Clinic in Rochester, MN.
creasing acceptance of prospective payment systems and other
She completed the research as a graduate nursing student at Winona
cost-control measures, have served to shorten hospital stays.
State University in Minnesota. Funding for this research was pro-
One outcome of shorter hospital stays is that the pressure on lay
vided by the Nursing Research Committee, Mayo Clinic. Submitted
July 2000. Accepted for publication June 18, 2001.
caregivers to provide more intensive and advanced levels of
care at home was escalated (Bull, 1990). The successful tran-
Digital Object Identifier: 10.1188/02.ONF.E70-E76
ONF VOL 29, NO 6, 2002
E70
Robinson, 1983). Recently, research has increased regarding
Caregiver attributes of poor health, lower socioeconomic sta-
the experience of caregivers of patients with cancer. The an-
tus, and less education were found to be related to increased
ecdotal experiences of nurses practicing in direct patient-care
perceptions of harm or loss and threat, which, in turn, led to in-
settings are rich with examples of caregiver burden and stress
creased caregiver load (Oberst, Thomas, Gass, & Ward, 1989).
(Carey, Oberst, McCubbin, & Hughes, 1991). The current
Carey et al. (1991) stated that poor personal health of caregivers
study's author's clinical practice further validates the reality
led to low family hardiness and negative appraisals of caregiv-
of caregiver burden.
ing. Jensen and Given (1991) studied 248 caregivers of patients
According to estimates, about 1 of 2 men and 1 of 3 women
with cancer and found that 53% reported caregiver fatigue as
in the United States will develop cancer (American Cancer So-
moderate or severe, and fatigue was related to the impact of
ciety, 2002). As patients with cancer live longer because of
caregiving on daily schedules. Bull (1990) suggested that func-
more effective disease treatments and methods to manage
tional ability of caregivers was one of the best predictors of
symptoms and side effects, the needs for physical and psycho-
burden at two weeks and two months after discharge from the
social care have increased. In addition, the incidence of cancer
hospital in a study of 55 chronic illness patient-caregiver dyads.
increases with advancing age, and as the percentage of people
The high level of consistency in these studies suggests that a
older than 65 increases, so will the number of people with can-
strong relationship exists between the physical health of
cer (American Cancer Society). These epidemiologic trends in-
caregivers and the degree of burden.
dicate the strong likelihood that most people will be required to
Caregiver Burden
function as caregivers at some point, thus providing compelling
The phenomenon of caregiver burden is a perceptual and
motivation for exploration of caregiver burden.
multidimensional experience. Several researchers have worked
Little is known about the impact of caregiver preparedness
to identify, classify, and prioritize domains of caregiver burden
on the experience of caregiver burden. A review of healthcare
through description and evaluation of caregiving tasks and
literature revealed that limited attention has been paid to the
caregivers' needs and concerns. Blank, Clark, Longman, and
phenomenon in the geriatric population (Archbold, Stewart,
Atwood (1989) described caregiver needs according to types of
Greenlick, & Harvath, 1990; Rusinak & Murphy, 1995). Con-
stressors. Intrapersonal stressors included treatment uncertainty,
sideration of the phenomenon in the oncology population has
worry, role conflict, fear of being alone, coping with the pa-
not been described.
tients' situation, and guilt. Interpersonal stressors were associ-
ated with caregiver lack of support, relationships with patients,
Literature Review
and lack of information. Lastly, transportation and finances
were classified as extrapersonal stressors. The most pressing
An evaluation of caregiver burden requires that caregivers
problems identified by 80 spousal caregivers of patients with
be described and burden defined. The literature also uses "in-
cancer included fear of spouses dying (most frequent), uncer-
formal caregivers," ostensibly to differentiate between profes-
tainty about the future, and spouses' emotional needs (Tose-
sional caregivers (i.e., healthcare workers) and lay individu-
land, Blanchard, & McCallion, 1995). In the Study to Under-
als providing care because of pre-existing, interpersonal
stand Prognoses and Preferences for Outcomes and Risks of
relationships with patients. In this article, the author used the
Treatment, which involved 2,129 interviews of families of se-
word caregiver to describe informal caregivers. The definition
riously ill patients, 55% of those responding reported at least
of a caregiver provided by Miller & Keane (1992)--"a lay in-
one severe caregiving or financial burden, including the need
dividual who assumes responsibility for the physical and emo-
to make major life changes and the inability to function nor-
tional needs of another who is incapable of self care"--is used
mally (Covinsky et al., 1994).
to describe the study population (p. 256).
Different researchers have characterized various psychoso-
Caregiver burden is a complex, multifaceted phenomenon.
cial concerns as either contributing to or outcomes of caregiver
Identifying contributing factors, defining characteristics, and
burden. An extensive review of the relevant literature revealed
outcomes can be a circuitous endeavor. Because of the varied
a lack of congruity in conceptualizing emotional aspects of
constructs that have been used by researchers and the highly
caregiver burden. Depression and anxiety were found by
individualistic nature of the caregiver experience, the current
Toseland et al. (1995) to be higher among spousal caregivers of
body of research-based knowledge reveals a diverse--and
patients with cancer than among the general population.
sometimes conflicting--picture. Caregiver burden is defined
Miaskowski, Zimmer, Barrett, Dibble, and Wallhagen (1997)
in this article as the caregiver's subjective experience that is
reported that noncongruence of patient and caregiver pain rat-
perceived as stressful and is a consequence of caregiving.
ings was associated with higher levels of caregiver strain, as
Caregiver Characteristics
manifested by increased tension, depression, confusion, and
bodily pain, and less social activity, resulting in poorer mental
A study of 30 spousal caregivers of patients with cancer
and overall health. Similarly, Miaskowski, Kragness, Dibble,
found that previous experience with a spouse with chronic ill-
and Wallhagen (1997) found that caregivers had lower mental
ness was associated with increased feelings of preparedness and
health scores than the general population. Also, George and
coping skills that could be used to secure additional help
Gwyther (1986) identified burden as being experienced prima-
(Rusinak & Murphy, 1995). When Archbold et al. (1990) stud-
rily in the caregivers' mental health and social participation. In
ied 78 older people with a variety of needs and their caregivers
a study of 28 caregivers of patients with cancer, all reported a
after hospital discharge, preparedness was found to ameliorate
change in their emotional health as a result of caregiving, with
some but not all aspects of role strain. Bucher et al. (2001)
81% identifying fear and increased stress, 77% identifying
evaluated an educational intervention provided to patients with
anxiety and inability to cope, and 66% identifying emotional
advanced cancer or family caregivers and found that partici-
withdrawal (Perry & Roades de Meneses, 1989). Likewise, in
pants had higher problem-solving scores after the program.
SCHERBRING VOL 29, NO 6, 2002
E71
Hinds' (1985) study of 83 family members of patients with
hours prior to anticipated hospital discharge, 710 days post-
cancer, 53% reported psychological stressors and 19% reported
discharge, and 2830 days postdischarge.
that they needed assistance to deal with their fear.
Setting and Sample
Studies have found that the level of optimism maintained
by caregivers is the most important predictor of their mental
A large, tertiary care, private medical center with a strong
hematology and oncology practice in the midwestern United
health and reactions to caregiving, which includes the per-
ceived impact on physical health and daily schedules (Given
States was the setting for this study. Two specific inpatient
et al., 1993). An evaluation of 150 patient-caregiver dyads
units were used in the recruitment of study participants, a 17-
bed oncology unit and a 21-bed hematology unit. Patients
also suggested that the impact of caregiving on caregivers'
health, schedules, and depression should be considered and
with cancer are admitted to both units, and both units have a
that caregiver optimism is a strong predictor of reactions to
staff that consists of mostly RNs, a small number of licensed
practical nurses, and some patient-care assistants and secre-
the burden of caregiving (Kurtz, Kurtz, Given, & Given,
1995). Although the emotional health of caregivers is not
tarial support.
identified consistently as an antecedent, manifestation, or
The population was caregivers of patients receiving inpa-
tient care in either of the units. Sample inclusion criteria fol-
outcome of caregiver burden, these studies provide compel-
ling evidence of a strong symmetrical correlation between
low.
caregiver burden and psychosocial concerns of caregivers.
Patients had to have any solid or hematologic malignancy.
Patients had to be hospitalized for medical management of
Conceptual Framework
their disease, including treatment with chemotherapy or
radiation therapy
The current study's author defined caregiver burden as the
side effects of that disease
subjective experience of the caregiver that is perceived as stress-
complications of the disease process or treatment.
ful and is a consequence of caregiving. Sources, attributes, and
Patients admitted or dismissed for defined hospice care
manifestations of caregiver burden are associated in multiple
were excluded.
and often complex ways. Antecedents of caregiver burden can
Both patients and caregivers had to be older than 20.
be categorized broadly into four groups: factors specific to pa-
Both patients and caregivers had to speak English.
tients, to caregivers, and to situations, and economic concerns.
Patients were not hospitalized at the institution previously
The prevalence of caregiver burden is significant and likely
during the study period.
underrecognized. The specific framework that was utilized in
Patients must have had a single caregiver who met the study
development of this research is demonstrated in Figure 1.
definition of caregiver.
Purpose
Instruments
The purposes of this study were to identify the level of
Demographic information about caregivers and patients
caregiver burden and caregiver perception of preparedness
was obtained, including age, gender, duration and type of ill-
prior to and after discharge from an inpatient setting; to deter-
ness, relationship of patient and caregiver, living situation,
mine what changes, if any, occur over time; and to determine
duration of caretaking relationship, and length of current hos-
the strength of the relationship between the level of caregiver
pitalization. Data for patients were obtained from medical
burden and caregiver perception of preparedness.
records; data for caregivers were obtained at the first data
collection point.
Methods
Burden assessment: Caregivers completed the Caregiver
Strain Index as a measurement of burden. This instrument
The researcher chose a descriptive, correlational design
using repeated measures. Institutional review board approval
originally was developed for use as a screening tool to detect
was obtained from the university and medical center. The
strain in a population of caregivers (Robinson, 1983). In
variables explored included patient and caregiver demograph-
evaluating the caregivers, the investigator anticipated that
ics, caregiver burden, and caregiver perception of prepared-
caregiver strain would be correlated with the caregivers'
ness to assume the caregiving role. The burden and prepared-
physical and psychological needs, along with their negative
ness variables were measured at three points in time: 2448
assessments of the impact of caregiving on their lifestyles,
their perceptions of their major role as caretakers, and nega-
tive beliefs about the emotional domain of the caretaking re-
lationship. The Caregiver Strain Index is a 13-item ordinal
Patient
scale that measures family caregivers' strain in providing vari-
health
ous degrees of care to patients at home. Each item is answered
with a "yes" or "no" response. Scoring is accomplished
Perception
Caregiver
Unmet
+
through adding all affirmative responses to arrive at a total
of preparedness
burden
caregiver needs
score; thus, a higher score implies a higher level of burden.
Compliance
Internal consistency with Cronbach's alpha was reported as
with treatment
0.86, and construct validity was demonstrated in expatient
characteristics, subjective perceptions of the caretaking rela-
One-way relationship between variables
tionship by caregivers, and emotional health of caregivers
+
As variable increases, outcome increases
(Robinson). A question was added to this research tool to as-
As variable increases, outcome decreases
sess for the utilization of any professional homecare services
Figure 1. Conceptual Framework of Caregiver Burden
by patients or caregivers.
ONF VOL 29, NO 6, 2002
E72
Preparedness assessment: Caregivers also completed the
relationship between perception of preparedness and burden.
This class of regression model analysis allowed for an exami-
Preparedness for Caregiving Scale of the Family Caregiv-
ing Inventory. This instrument comes from the perspective
nation of the relationship between the two variables and
o f role theory, and the burden concept is based on an
changes over time.
intrapersonal theoretical perspective. The current study's re-
Results
searcher utilized the perspective of domain-specific prepared-
ness (i.e., physical needs, emotional needs, resources, and
Sample Characteristics
stress) in developing it, as well as a question regarding over-
all preparedness. The scale was a structured, self-report, writ-
The study's sample size was 59. Fifty-seven responses were
ten assessment questionnaire with eight items. A Likert scale
received at discharge, yielding a return rate of 97%. The per-
was used to answer each question, with choices ranging from
centage of one-week responses received was 83% (n = 49), with
1 (not at all prepared) to 5 (very well prepared). All responses
a mean time period of 9.2 days since discharge, and the percent-
from each survey were averaged to arrive at a preparedness
age of one-month responses received was 75% (n = 44), with
score, ranging from 15. Reliability was assessed using
a mean time period of 31.4 days after discharge. Therefore, a
Cronbach's alpha and ranged from 0.670.92 (P. Archbold,
full data set was available for 75% of participants.
personal communication, November 30, 1998).
Gender distribution for patients and caregivers varied: 58%
of patients were men, and 42% were women; 33% of caregivers
Procedures
were men, and 67% were women. Cancer diagnoses are sum-
marized in Table 1. The age distribution of patients and
The nursing staff of the two units identified a convenience
caregivers is found in Table 2. Caregivers' relationships to pa-
sample of potential research subjects upon hospital admission.
tients most commonly were spouses (86%), then children (9%),
The investigator determined whether patients met inclusion
then others (5%). The duration of the caregiving relationship, as
criteria through chart review. When patients were identified
identified by caregivers at the time of discharge, most frequently
as potential study participants, the investigator met with pa-
was less than six months (44%), more than three years (25%),
tients and caregivers to explain the study purpose and com-
612 months (17%), and 13 years (14%). The time since diag-
mitment, identify the rights of each to decline, and ask for
nosis followed a similar distribution: 47% reported less than six
participation. On receipt of positive responses from both,
months, 32% reported more than three years, 17.5% said 13
caregivers provided written informed consent and received
years, and 3.5% said 612 months. As expected, the vast major-
instructions for participation and estimated dismissal dates for
ity of caregivers (91%) lived with the patients.
patients were identified. At that time, the investigator com-
Burden
pleted patient demographic forms using information from
medical records.
The level of caregiver burden varied little with time, as
The first data collection took place on the day of discharge
shown in Table 3. Although people at each time period dem-
or just prior. It consisted of completion of the caregiver demo-
onstrated minimal and maximal levels of burden, the mean
graphic sheet, Caregiver Strain Index, and Preparedness for
burden score was moderate.
Caregiving Scale, and the data were returned immediately. If
Data from all collection periods were combined to provide
caregivers were not available at the hospital, the first data
a profile of the nature and frequency of caregiver strain. A
collection took place via mail or telephone prior to or at the
positive response to the question was tracked. Domains of
time of hospital discharge. The caregiver then was given or
burden are identified in Table 4.
sent a packet with instructions, survey tools, and return-ad-
Preparedness
dressed, stamped envelopes, with instructions to complete the
first set 710 days after discharge and the second set 2830
Perception of preparedness for caregiving showed little
days after discharge. Specific dates for completion also were
variability across the three data collection points. Similar to
identified. Both the Caregiver Strain Index and Preparedness
for Caregiving Scale of the Family Caregiving Inventory were
Table 1. Primary Cancer Diagnoses of Patients With
to be completed at the two subsequent data collection points
Study Participant Caregivers
and returned immediately after completion. Each set of instru-
ments was coded to identify recipients with five-character
Diagnosis
n
%
codes, which were used to determine that subjects had re-
turned their responses and for data analysis purposes. If re-
21
Non-Hodgkin's lymphoma
12
sponses were not received, reminder phone calls were placed
09
Lung cancer
05
to encourage continued involvement in the study.
Prostate cancer
04
07
07
Neuroendocrine tumor
04
Data Analysis
05
Acute leukemia
03
Multiple myeloma
03
05
Clerical data entry staff input data, and biostatistics staff at
05
Ovarian cancer
03
the medical center conducted statistical analysis. Analysis of
05
Carcinoid tumor
03
variance testing was used to assess changes over time in mea-
Breast cancer
02
04
surements of caregiver burden and perception of prepared-
04
Uterine cancer
02
ness. Responses were evaluated within and between groups;
Germ cell tumor
02
04
data for each subject were compared over time, and summary
Other (each < 2%)
14
25
data for the total groups were evaluated. A mixed model tech-
nique that accounted for intraindividual correlation tested the
N = 57
SCHERBRING VOL 29, NO 6, 2002
E73
Table 2. Age Distribution of Patients and Caregivers
Table 4. Profile of Domains of Burden
Domain
%
Patients
Caregivers
Age Range
n
%
n
%
Work adjustments
55
Changing plans
53
Younger than 40
04
07
04
07
Feeling completely overwhelmed
51
4049
09
16
12
21
Confining
46
5059
15
26
23
40
Family adjustments
41
6069
19
33
09
16
Financial strain
41
70 and older
10
18
09
16
Patient changes
37
Other time demands
36
N = 57
Emotional adjustments
35
Disturbed sleep
34
the burden scores, people at each point in time reported the
Patient behavior upsetting
29
highest to the lowest or almost lowest level of preparedness.
Inconvenient
24
Physical strain
16
Overall, these scores ranked on the scale between "somewhat
well prepared" and "pretty well prepared." Review of the re-
sponses for each of the eight individual preparedness ques-
tions revealed a consistent peak at the response "pretty well
demands of the situation, but Kurtz et al. (1995) reported
prepared." These data are summarized in Table 5.
that the reactions of caregivers are distinct and influenced
Burden and Preparedness Changes Over
by different variables, including caregiver optimism. An-
Time
other perspective was provided by Siegel, Raveis, Houts,
and Mor (1991), who described burden in the domains of fi-
After applying generalized estimating equations techniques
nancial, physical, time, social, and employment. Higher
to the repeated measures data using a Poisson regression
burden scores were found to be associated with an increased
model (Diggle, Liang, & Zeger, 1994), the researcher found
risk of unmet patient needs. Objective physical domain bur-
that the change over time of both burden and preparedness
den was reported least often by their subjects, similar to the
measurements was not significant (see Table 6).
current study's sample. Of the many references that were
Relationship Between Preparedness and
considered in this analysis of caregiver burden, no clear con-
Burden
sensus exists as to how best to describe and quantify burden;
therefore, no consistent measure of the experience exists.
Again using generalized estimating equations, the re-
Applying these results is difficult given the disparity that
searcher found a significant inverse relationship between the
currently exists in defining and measuring burden. How-
two measures. Specifically, for every one-unit increase in the
ever, caregiver burden is real, significant, and vital to con-
preparedness score, the burden score decreased 0.853 units. In
sider.
other words, burden was found to decline, on average, about
The sample in the current study reported a moderate level
17% for every one-unit increase in preparedness. The relation-
of burden, and the degree of change was not significant from
ship between burden and preparedness was constant across
predischarge to one month after discharge. Many people tend
time (see Table 7).
to minimize their distress, so the strain experienced by the
sample more likely was underreported, not overreported.
Discussion
Identifying an acceptable or desired level of burden would be
unwise. Rather, a prudent approach requires that healthcare
The data that were obtained regarding the level of care-
teams recognize the highly individual reality of burden, then
giver burden are consistent with what has been observed and
modify endeavors to manage it accordingly.
recorded previously. The subjective nature of burden sug-
gests that a great variability will exist in the measure of this
On examination of data from the 13 questions that evalu-
experience. The sample in this study demonstrated this, with
ated burden at all three points in time, 11 of the areas were
burden scores at all time frames ranging from 0 (no burden)
experienced as strains 25% or more of the time, three of
to 1213 (the highest levels of burden). The literature re-
which were identified as stressful more than 50% of the
view identified significant variability in the antecedents,
time. Specifically, adjusting work (55%), needing to change
manifestations, and measurements of burden. For example,
personal plans (53%), and feeling completely overwhelmed
Given, Given, Helms, Stommel, and DeVoss (1997) ob-
(51%) were reported as stressful. The people who reported
served that caregivers are largely affected by the objective
these answers were notably stressed in these domains, at
Table 3. Distribution of Caregiver Burden Scores Over
Table 5. Caregiver Perception of Preparedness Score
Three Data Collection Periods
Distribution
--
--
Time Period
n
X
SD
Range
Time Period
n
X
SD
Range
Before or at discharge
56
5.07
3.54
0 13
Before or at discharge
57
3.53
0.72
1.04.88
710 days after discharge
49
4.78
3.20
0 12
710 days after discharge
49
3.49
0.89
1.634.88
One month after discharge
44
5.00
3.69
0 13
One month after discharge
44
3.53
0.86
1.55.00
ONF VOL 29, NO 6, 2002
E74
Limitations
Table 6. Burden and Preparedness Scores Over Time,
Analyzed With Generalized Estimating Equations Method
Among the limitations of this study are its small sample size
and singular geographic location. If preparedness is a func-
Test
Degrees
--
tion, at least in part, of healthcare teams' efforts, then the level
X
Statistic
of Freedom
p
Variable
of preparedness experienced in this sample may differ from
Burden
that which might be found in a sample receiving health care
c2 = 0.5310
Discharge
5.07
X
2
0.7668
elsewhere. Also, repeated hospitalizations experienced by
One week
4.78
some patients may have influenced the preparedness and bur-
One month
5.00
den experiences of their caregivers. The burden experience
may be different for groups receiving care elsewhere, and this
Preparedness
study did not evaluate or control for other caregiver charac-
Discharge
3.53
Analysis
2
0.0596
teristics that may have affected preparedness and burden (e.g.,
One week
3.49
of variance
age, personal health, gender, educational preparation). These
One month
3.53
limitations, however, do not change the fact that a relationship
between burden and preparedness exists.
least temporarily. This finding aligns with information re-
A second important limitation is that this sample repre-
ported by Oberst et al. (1989), who found that caregivers
sented the most willing and least burdened caregivers. Selec-
reported that the most time was spent in transport, emotional
tive exclusion of caregivers who were under known stress,
support, and extra household tasks, and information reported
along with the self-selection that occurred as caregivers vol-
by Jensen and Given (1991) regarding the significant role
unteered to participate, means that this sample represents only
played by caregiver fatigue.
those people who, at least apparently, are less burdened. The
The study sample in this article appraised themselves as
conundrum of collecting data from people who are burdened
"somewhat" to "pretty well" prepared, with little change over
about their burden is not resolved easily.
time. Although limited, the previous research on preparedness
Another consideration is the time-limited nature of this study.
revealed comparable results. Rusinak and Murphy (1995)
With no baseline data, the researcher did not know how much
presented data about elderly spousal caregivers who reported
burden this sample may have experienced prior to the specific
a moderate level of preparation in relation to the needs of their
hospitalization involved. Similarly, data about the time period
spouses recently diagnosed with cancer. Similar results were
beyond one month postdischarge were not collected.
provided by Archbold et al. (1990) in an evaluation of pre-
Implications for Practice,
paredness and mutuality; caregivers identified that their level
of preparedness at six weeks after hospitalization was above
Theor y, and Research
the midpoint. Would it not be the goal of healthcare teams that
caregivers feel very well prepared at most, if not all, times?
The most significant outcome of this study is the validation
The lack of reported information about the preparedness ex-
provided to the concept that caregivers must be prepared ad-
perience of caregivers is strong testimony to the fact that in-
equately for their responsibilities as a means of controlling
adequate attention has been paid to the concept.
burden. As efforts continue to control healthcare costs, this re-
The most exciting finding of this study is that the relation-
lationship between preparedness and burden mandates the de-
ship between preparedness and burden is significant and rela-
velopment of programs and systems to ensure that caregivers
tively constant over time. This might be assumed based on the
are receiving the information and support they need to func-
belief that having knowledge about what to expect (i.e., being
tion successfully in their caregiving roles. A one-size-fits-all
prepared) would diminish caregivers' level of stress (i.e., bur-
approach likely will not yield the desired outcomes. There-
den). Although previous work addressing this variable has
fore, healthcare teams should be able to address this issue in
been limited, this study's results were consistent with those
an individualized manner. This falls within the purview of
reported by Rusinak and Murphy (1995), who revealed that
n u r s i n g care, and nursing should take the initiative to
previous experience with an ill spouse was associated with
operationalize this effort.
higher levels of preparedness and coping skills. The work of
Nurses should consider several endeavors. A comprehen-
Archbold et al. (1990) also supported this finding when they
sive approach to the caregiver burden experience requires that
stated that preparedness could alleviate some, but not all, as-
healthcare policy makers consider the ramifications of deci-
pects of role strain. The reported level of significance of the
sions that require more and more of lay people. Nurses are
finding in this study suggests that preparedness cannot be ig-
well positioned to provide lawmakers with concrete examples
nored in any consideration of caregiver burden.
and data about this. Further efforts to define and describe the
Table 7. Relationship Between Caregiver Preparedness and Burden
--
--
X Preparedness
X Burden
Coefficient
Empirical
95% Confidence
Time Period
Score
Score
Estimate
Standard Error
Limits
p
Discharge
3.53
5.07
0.1587
0.0703
Between
0.0240
One week
3.49
4.58
0.2966 and
One month
3.53
5.00
0.0209
SCHERBRING VOL 29, NO 6, 2002
E75
programs and projects to address preparedness are devel-
concept of caregiver burden would be useful. The literature
reviewed has revealed that various researchers have concep-
oped and implemented.
tualized, defined, described, and measured burden with sig-
Summary
nificant variability. Although caregiver burden remains a sub-
jective and unique experience, room exists for further clarity
The complexity of the burden of caregiving is significant and
in how it is characterized and quantified. Potential means to
manifested in a multitude of ways. The level of burden in this
accomplish this could include the utilization of a burden-
study's sample was moderate, and the level of perception of
screening tool for caregivers to obtain baseline data about the
preparedness to assume caregiving responsibilities was less
actual incidence of burden and to identify levels at which ei-
than 100%. The data revealed an inverse relationship between
ther they or their patients are at risk.
these experiences, with increased levels of preparedness corre-
Replication of this study with a larger and more diverse
sponding with decreased levels of burden. This relationship is
population is indicated. This may include patients and
consistent from before discharge to one month postdischarge.
caregivers from multiple healthcare settings. Specifically,
This finding had not been reported previously in the oncology
more research on this topic is needed as related to cancer as
literature. The provision of comprehensive nursing care re-
the chronic course of this disease becomes more recognized.
quires that attention be paid to the preparation level of
Also, the impact of the aging population in the United States
caregivers, with the recognition of the potential impact of this
must be considered, both in terms of aging patients and ag-
variable on the burden experience of those individuals.
ing caregivers. This was addressed by Schulz and Beach
(1999), whose research with 819 spousal caregivers from
ages 6695 revealed that strained caregivers were 63% more
The author extends appreciation to Dan Nicholls, EdD, RN, of Winona
State University, chairman of this thesis committee.
likely to die than spouses not providing care. Additionally,
those caregivers who are the most burdened, such as those
who are not able to participate in studies, must be included
Author Contact: Mary Scherbring, MS, RN, OCN, can be reached
in such efforts so that the full spectrum of the population can
at scherbring.mary@mayo.edu, with copy to editor at rose_mary@
be considered. Lastly, outcome evaluation must occur as
earthlink.net.
References
American Cancer Society. (2002). Cancer facts and figures. Atlanta: Author.
Jensen, S., & Given, B.A. (1991). Fatigue affecting family caregivers of
cancer patients. Cancer Nursing, 14, 181187.
Archbold, P.G., Stewart, B.J., Greenlick, M.R., & Harvath, T. (1990). Mu-
tuality and preparedness as predictors of caregiver role strain. Research
Kurtz, M.E., Kurtz, J.C., Given, C.W., & Given, B. (1995). Relationship of
in Nursing and Health, 13, 375384.
caregiver reactions and depression to cancer patients' symptoms, func-
tional states, and depression--A longitudinal view. Social Science and
Blank, J.J., Clark, L., Longman, A.J., & Atwood, J.R. (1989). Perceived
Medicine, 40, 837846.
home care needs of cancer patients and their caregivers. Cancer Nursing,
12, 7884.
Miaskowski, C., Kragness, L., Dibble, S., & Wallhagen, M. (1997). Differ-
ences in mood states, health status, and caregiver strain between family
Bucher, J.A., Loscalzo, M., Zabora, J., Houts, P.S., Hooker, C., &
caregivers of oncology outpatients with and without cancer-related pain.
BrintzenhofeSzoc, K. (2001). Problem-solving cancer care education for
Journal of Pain and Symptom Management, 13, 138147.
patients and caregivers. Cancer Practice, 9, 6670.
Miaskowski, C., Zimmer, E.F., Barrett, K.M., Dibble, S.L., & Wallhagen,
Bull, M.J. (1990). Factors influencing family caregiver burden and health.
Western Journal of Nursing Research, 12, 758776.
M. (1997). Differences in patients' and family caregivers' perceptions of
the pain experience influence patient and caregiver outcomes. Pain, 72,
Carey, P.J., Oberst, M.T., McCubbin, M.A., & Hughes, S.H. (1991). Ap-
217226.
praisal and caregiving burden in family members caring for patients re-
Miller, B.F., & Keane, C.B. (1992). Encyclopedia and dictionary of medi-
ceiving chemotherapy. Oncology Nursing Forum, 18, 13411348.
cine, nursing, and allied health (5th ed.). Philadelphia: Saunders.
Covinsky, K.E., Goldman, L., Cook, E.F., Oye, R., Desbiens, N., Reding, D.,
Oberst, M.T., Thomas, S.E., Gass, K.A., & Ward, S.E. (1989). Caregiving
et al. (1994). The impact of serious illness on patients' families. SUP-
demands and appraisal of stress among family members. Cancer Nursing,
PORT investigators. Study to understand prognoses and preferences for
12, 209215.
outcomes and risks of treatment. JAMA, 272, 18391844.
Diggle, P.J., Liang, K.Y., & Zeger, S.L. (1994). Analysis of longitudinal
Perry, G.P., & Roades de Meneses, M. (1989). Cancer patients at home:
Needs and coping styles of primary caregivers. Home Healthcare Nurse,
data. Oxford, England: Oxford University Press.
7(6), 2730.
George, L.K., & Gwyther, L.P. (1986). Caregiver well-being: A multi-di-
Robinson, B.C. (1983). Validation of a Caregiver Strain Index. Journal of
mensional examination of family caregivers of demented adults. Geron-
Gerontology, 38, 344348.
tologist, 26, 253259.
Rusinak, R.L., & Murphy, J.F. (1995). Elderly spousal caregivers: Knowl-
Given, B., & Given, C. (1996). Family caregiver burden from cancer care.
In R. McCorkle, M. Grant, M. Frank-Stromborg, & S. Baird (Eds.), Can-
edge of cancer care, perceptions of preparedness, and coping strategies.
Journal of Gerontological Nursing, 21(3), 3341.
cer nursing (pp. 93109). Philadelphia: Saunders.
Schulz, R., & Beach, S.R. (1999). Caregiving as a risk factor for mortality:
Given, B.A., Given, C.W., Helms, E., Stommel, M., & DeVoss, D.N. (1997).
The caregiver health effects study. JAMA, 282, 22152219.
Determinants of family care giver reaction. New and recurrent cancer.
Cancer Practice, 5, 1724.
Siegel, K., Raveis, V.H., Houts, P., & Mor, V. (1991). Caregiver burden and
unmet patient needs. Cancer, 68, 11311140.
Given, C.W., Stommel, M., Given, B., Osuch, J., Kurtz, M.E., & Kurtz, J.C.
Toseland, R.W., Blanchard, C.G., & McCallion, P. (1995). A problem solv-
(1993). The influence of cancer patients' symptoms and functional states
ing intervention for caregivers of cancer patients. Social Science and
on patients' depression and family caregivers' reaction and depression.
Medicine, 40, 517528.
Health Psychology, 12, 277285.
Hinds, C. (1985). The needs of families who care for patients with cancer at
Whedon, M.B. (1998). Quality of life of family caregivers in cancer care.
Quality of Life, 6(5), 5355.
home: Are we meeting them? Journal of Advanced Nursing, 10, 575581.
ONF VOL 29, NO 6, 2002
E76