Full text of DOI:10.1093/geront/40.6.738

The Gerontologist
Copyright 2000 by The Gerontological Society of America
Vol. 40, No. 6, 738–746
Patterns of Caregiver Experiences Among
Partners of Cancer Patients
Chris Nijboer, PhD,1,2 Mattanja Triemstra, PhD,4 Reike Tempelaar, MSc,2
Mirjam Mulder, MSc,2 Robbert Sanderman, PhD,2,3
and Geertrudis A.M. van den Bos, PhD1,4
This study describes patterns of caregiving experiences in
partners of patients with cancer (Nϭ148) over a 6-month pe-
riod. Caregiving experiences were assessed by means of the
Caregiver Reaction Assessment Scale (CRA), which consists of
four negative dimensions and one positive subscale: Dis-
rupted Schedule, Financial Problems, Lack of Family Support,
Loss of Physical Strength, and Self-Esteem. Subgroup analyses
were performed according to gender, age, and socioeconomic
status (SES). Type, size, and direction of changes in caregiving
experiences over time were analyzed both at a group level
and at an individual level. Patterns of caregiver experiences
appeared to vary between the subgroups; women, younger
caregivers, and caregivers with a higher SES experienced care-
giving more negatively or less positively. The findings illus-
trate the value of studying inter- and intraindividual patterns
across different subgroups, and stress that caregiver experi-
ences should be regarded as a multidimensional concept that
includes both negative and positive experiences of caregiving.
period of time. Research in the field of caregiving has
mainly concerned family members of patients with
mental disorders such as schizophrenia or dementia
(Baumgarten, 1989; Schulz, O’Brien, Bookwala, &
Fleissner, 1995; Zarit & Toseland, 1989). To date,
however, only a few studies have specifically exam-
ined caregiver outcomes over time in the case of can-
cer. This study is an attempt to contribute to a more
detailed insight into outcomes of caregivers of cancer
patients over time.
One of the concepts that seems to play a central
role within the caregiver situation is “caregiver bur-
den,” which refers to negative feelings that may be
experienced when giving care (e.g., Vitaliano, Young,
& Russo, 1991). Studies have consistently reported
that partners, in comparison to other informal caregiv-
ers, are more likely to experience caregiver burden
(Cantor, 1983), become ill themselves (George & Gwy-
ther, 1986), and experience higher rates of psychiatric
symptoms than other types of caregivers (Schulz, Vis-
intainer, & Williamson, 1990). Because partners are
less likely than other informal caregivers to receive as-
sistance (Horowitz, 1985), they may be identified as
the most vulnerable group of caregivers. More recent
studies have stressed that experiences of caregiving
should be studied as a multidimensional construct, re-
ferring to physical, psychological, financial, and/or
social experiences to specific care demands (Given et
al., 1992; Siegel et al., 1991). And, although caregiv-
ing is mainly addressed as being burdensome because
of its unpleasant consequences, caregiving may also
be perceived positively (Given et al., 1992; Kinney &
Stephens, 1989; Lawton, Kleban, Moss, Rovine, &
Glicksman, 1989; Motenko, 1989). Therefore, the
most balanced approach to measure caregiver experi-
ences incorporates both the negative and positive as-
pects of giving care.
Key Words: Caregiver burden, Cancer, Health, Longitudinal
patterns
Many types of cancer at the present time could be
described as chronic diseases requiring long-term
treatment and posing numerous demands on patients
and their primary caregivers. Alterations in the pa-
tient’s functional ability, bodily functions, appear-
ance, employment status, family and social role, and
self-image are reported to have a direct impact on the
caregiver (Siegel, Raveis, Houts, & Mor, 1991; Stetz,
1987). With earlier diagnoses, advances in treatment,
longer survival times, and a trend toward outpatient
treatment, informal caregivers are likely to be in-
volved in providing more complex care for a longer
This study was supported by the Dutch Cancer Society, Grant AMC 95-
1138.
We thank the patients and partners who took part in the study, and we
gratefully acknowledge the physicians and coworkers in the cooperating
hospitals for the recruitment of patients.
Also, in cancer caregiver research, caregiver expe-
riences are defined over a broad range of varying con-
structs that can be regarded as positive, neutral, and/
or negative; subsequently, overall conclusions from
studies are hampered by inconsistent findings. One of
the first few longitudinal studies involving cancer pa-
tients and their spouses, conducted by Oberst and
James (1985), revealed that the intensity of partner’s
Address correspondence to Chris Nijboer, National Institute of Health
Promotion and Disease Prevention (NiGZ), DeBleek 13, Postbus 500,
3440 AM Woerden, The Netherlands. E-mail: cnijboer@nigz.nl.
1Department of Social Medicine, Academic Medical Center, University
of Amsterdam, The Netherlands.
2Northern Center for Health Care Research and 3Department of Clini-
cal Psychology, University of Groningen, The Netherlands.
4Department for Health Services Research, National Institute of Public
Health and the Environment, RIVM, Bilthoven, The Netherlands.
738
The Gerontologist

distress did not change over time, whereas the
amount of distress reported by patients systematically
decreased over time. Keitel, Zevon, Rounds, Petrelli,
and Karakousis (1990) reported similar patterns of dis-
tress in a study assessing the impact of the surgical
treatment of cancer on the spouse. On the other hand,
it was demonstrated that caregivers experienced high
levels of burden when they first occupied the care-
giver role, but these experiences dissipated with time
(Blood, Simpson, Dineen, Kauffman, & Raimondi,
1994). Also, it was observed that caregivers continued
to report similar levels of cancer caregiver’s impact on
financial problems, lack of family support, and loss of
physical strength over time, but a decrease in impact
on schedule over time and an increase on one posi-
tive dimension of caregiver experiences, caregiver’s
self-esteem (McCorkle et al., 1993). Evidently, these
findings indicate a need to examine patterns of care-
giver experiences more thoroughly.
Caregiving can be conceived as a dynamic, ongo-
ing process for which there may be several trajecto-
ries (McCorkle et al., 1993; Nijboer et al., 1998;
Oberst & James, 1985; Schulz & Williamson, 1991).
Several researchers in the field of oncology stress that
experiences of caregivers of cancer patients have to
be examined in relation to the phase of illness the pa-
tient is going through (Northouse & Stetz, 1989).
These phases have been divided into three stages: the
initial or acute phase, the chronic phase, and the res-
olution (Rait & Lederberg, 1990). During the acute
phase the family is shocked, stunned, and frightened.
Patients and their family members may use this pe-
riod to find ways to cope and deal with the crisis. In
the chronic phase, when primary treatment has been
endured and the patient has been dismissed from the
hospital, family members have to take on new and
additional responsibilities. During the third phase,
resolution, the family anchors itself in either survivor-
ship or the bereavement process. All three periods
may lead to considerable anxiety and perceived pres-
sure in family members, particularly in the primary
caregivers (Kurtz, Kurtz, Given, & Given, 1997). In
order to gain insight into caregiver experiences over
time, researchers increasingly emphasize the impor-
tance of including the acute and early chronic phases
of the illness in studying caregiver experiences over
time (Given & Given, 1991; McCorkle et al., 1993;
Northouse & Swain, 1987).
1998). As far as we know, longitudinal caregiving re-
search has predominantly focused on overall vari-
ability (i.e., groups’ variability), and no data are
known about the proportion of cancer caregivers
who perceive caregiving more negatively, more posi-
tively over time, or who remain stable.
Research into cancer caregiver experiences over
time is rather scarce, but research into patterns
among certain types of caregivers is even more spo-
radic. In cross-sectional studies, relatively consistent
associations were reported on caregiver experiences
and sociodemographic characteristics such as gen-
der, age, and socioeconomic status (SES). Women,
especially at a younger age and with a lower SES,
tend to perceive caregiving as more negative than
their counterparts (Barusch & Spaid, 1989; Blood et
al., 1994; Oberst, Thomas, Gass, & Ward, 1989; Sie-
gel et al., 1991; Young & Kahana, 1989; Todd, Zarit,
& Zarit, 1986), even when this perceived impact is
adjusted for the amount of care provided and/or the
level of patient’s health (Horowitz, 1985).
The aim of the current study is to describe overall
patterns of caregiver experiences in partners of can-
cer patients over time; across different groups (i.e.,
according to gender, age, and SES), and within indi-
viduals over time. Data will reflect on the potential
influence of the early and chronic phases of the dis-
ease (i.e., the 2 weeks prior to hospital admission,
and to 3 and 6 months thereafter). Caregiver experi-
ences are considered as a multidimensional con-
struct, including negative and positive dimensions.
Methods
Procedure and Subjects
Longitudinal data were used from the research
project entitled: “CAregiving of Spouses of cancer
PAtients” (CASPA). This study was conducted in co-
operation with 10 hospitals in The Netherlands in the
regions of Amsterdam and Groningen. Newly diag-
nosed colorectal cancer patients who recently under-
went surgery, who had a survival prognosis of at least
6 months, and who lived together with a partner
were selected by surgeons of the hospitals. The part-
ner was defined as a relative by marriage or person
identified by the patient as partner, and who resided
in the patient’s household. Partners were recruited
via the patients. The selection of this patient/partner
group was based on pragmatic and theoretical con-
siderations. The incidence of colorectal patients is
relatively high and almost equally divided among
men and women. Furthermore, studying caregiving
in this specific patient group had the advantage that
the (presumed) onset of caregiving could be identi-
fied as a marked point in time (i.e., the moment of
hospital admission/surgery). Moreover, patients with
these malignancies were selected because they were
likely to experience certain problems (e.g., pain, ap-
pliance and equipment difficulties, skin and drainage
problems) and were likely to need continuous medi-
cal, physical, and psychosocial care following hospi-
tal admission. Subsequently, care involvement may
Patterns over time can be examined by a number
of different analyses, depending on the specific re-
search question. These methods may distinguish
themselves particularly with respect to the endpoint
level of the outcome(s) under study, the overall rate
of change over time, or overall changeability (Deeg,
Smit, & Beekman, 1997). Preceding the question,
Which factors influence change within the caregiving
situation?, is the course of the pattern over time itself.
In order to obtain a more specific insight into patterns
of caregiver experiences, changes over time can be
determined at two different levels, across different
groups and within one person over time (Mulder,
Ranchor, Sanderman, Bouma, & Van den Heuvel,
Vol. 40, No. 6, 2000
739

include a broad spectrum of tasks, and caregiver ex-
periences may change continuously during the course
of colorectal cancer.
levels: low (primary school only), middle (lower/gen-
eral secondary schooling and intermediate voca-
tional schooling), and high (higher vocational school-
ing and university).
In order to describe patterns of caregiver experi-
ences over the first period of time, representing the
acute and early chronic phases of the patient’s illness,
and consistent with former research, three measure-
ment points were chosen: the time of patient’s diag-
nosis (T0), and 3 months (T1) and 6 months (T2)
thereafter. Baseline measurement (T0) took place
shortly after hospital admission and within 2 weeks
after patient’s surgery, with questions being asked ret-
rospectively, referring to the period before hospital
admission (i.e., the period before the caregiver role
was likely to be taken on). The second measurement
point (T1) took place 3 months after baseline and the
third measurement (T2) occurred again 3 months later
(i.e., 6 months after baseline). Patients and partners
were interviewed face-to-face by trained research as-
sistants using structured questionnaires (e.g., CRA),
and they also completed a self-report questionnaire.
Caregiver Experiences.—Caregiver experiences were
measured using the Caregiver Reaction Assessment
scale (CRA), developed by Given and colleagues
(1992). The CRA consists of 24 items that contain four
negative dimensions and one positive dimension:
Disrupted Schedule, Financial Problems, Lack of
Family Support, Loss of Physical Strength, and Self-
esteem. The subscale Disrupted Schedule (5 items)
measures the extent to which caregiving interrupts the
usual activities of the caregiver. The subscale Finan-
cial Problems (3 items) measures the financial strain
on the caregiver as a consequence of the caregiving
situation. The subscale Lack of Family Support (4
items) assesses the extent to which the caregiver per-
ceives a shortage of family support and the caregiver’s
perception of being abandoned in their caregiving re-
sponsibilities. The subscale Loss of Physical Strength
(5 items) assesses the caregiver’s feeling of deteriora-
tion in physical health. The subscale Caregiver’s Self-
esteem (7 items) aims to measure the extent to which
caregiving contributes to individual self-esteem. Re-
spondents were asked to rate the perceived impact of
caregiving on a 5-point Likert scale. For each sub-
scale, a total score was computed reflecting the mean
item, with a range between 1.00 and 5.00. A higher
score represented a greater amount of the attribute.
The subscales of the CRA were found to be valid and
reliable (Cronbach’s ␣-coefficients ranged from 0.68–
0.90; Given et al., 1992; Nijboer, Triemstra, Tempe-
laar, Sanderman, & Van den Bos, 1999).
Measurements
Patient’s Descriptive Variables.—In order to get
information about potential selection bias, several
descriptive variables of the patients were collected:
patient’s diagnosis, whether the patient had a stoma
or not, cancer-related symptoms, comorbidity, and
level of depression.
Cancer-related symptoms were measured using
the Rotterdam Symptom Check List (RSCL; De Haes,
Knippenberg, & Neijt, 1990). Patients were asked to
rate the severity of a symptom, either a physical (e.g.,
nausea) or a psychological symptom (e.g., worrying),
on a 4-point scale 3 months after diagnosis. The in-
ternal consistencies of the two scales, “physical
symptoms” and “psychological symptoms,” were 0.83
and 0.89, respectively.
Comorbidity was measured by asking the patient if
he/she had a disorder of chronic nature in the pre-
ceding 3 months (e.g., stroke, serious heart problems,
high blood pressure, diabetes). The short-form 16-
item list of the Central Bureau of Statistics was used
(Centraal Bureau voor Statistik, 1989).
The level of depression was measured by the 20-
item Center for Epidemiological Studies Depression
scale (CES-D; Bouma, Ranchor, Sanderman, & van
Sonderen, 1995; Radloff, 1977). The CES-D com-
prises a 20-item self-report scale that taps the level of
depressive symptoms during the week preceding hos-
pital admission. Total scores can range from 0–60,
with higher scores indicating a higher level of depres-
sive symptoms. Cronbach’s ␣ was 0.91.
Response.—Of the 238 eligible cancer patients
and their partners, informed consent was obtained
from 181 at the onset of the study. The response rate
was 76%. No response bias was found between par-
ticipants and nonresponse with respect to the vari-
ables Age, Gender, Diagnosis, and Region. One hun-
dred forty-eight (82%) couples participated in all
three waves. Reasons for loss to follow-up were: seri-
ous illness (n ϭ 15; 8%), refusal to report for follow-
up (n ϭ 10; 6%) and death of the patient (n ϭ 8; 4%).
Patients who remained in the study did not differ
regarding age, gender, diagnosis, comorbidity, and
feelings of depression from dropouts. However, the
proportion of patients with a stoma was slightly
higher (p Ͻ .10), and they also reported more physi-
cal symptoms at baseline (p Ͻ .05) as compared to
participants who were followed up to 6 months. Part-
ners who remained in the study did not differ from
dropouts regarding age, gender, and the baseline val-
ues of caregiver experiences: Disrupted Schedule, Fi-
nancial Problems, Lack of Family Support, and Self-
esteem. However, participating partners reported a
significantly less negative impact on loss of physical
strength at baseline, compared to those who dropped
out over time (participants: mean score ϭ 1.94; drop-
outs: mean score ϭ 2.22; p Ͻ .05).
Partner’s Sociodemographic Variables.—Age, gen-
der, and SES were used to define subgroups in order
to study changes in caregiver experiences across dif-
ferent groups. The three age groups on the basis of
age at baseline were: Ͻ50 years, 50–65 years, and Ͼ65
years. SES was operationalized as the highest level of
education attained, and was categorized into three
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The Gerontologist

Table 1. Sample Characteristics of Patients and Partners
(148 Couples)
Statistical Analyses
Analyses were performed to examine changes in
the five specific caregiver experiences domains over
a 6-month period, starting from the time of diagnosis,
referring to 2 weeks prior to patient’s hospital admis-
sion (i.e., baseline, T0). Changes over time at group
level were examined by means of General Linear
Model (GLM) repeated measurement analyses of
variances (ANOVAs) for the total group and across
the separate subgroups. Post-hoc Scheffé tests for
multiple comparisons of means were performed to
gain insight into the actual differences between sev-
eral groups. In addition, to indicate the relevance of
the size of the difference between the average scores,
Cohen’s effect size statistic d for paired observations
was calculated (Cohen, 1977). An effect size Ͻ0.20
indicates a small effect, 0.20–0.50 a moderate effect,
and Ͼ0.80 a large effect (Cohen, 1992). Within each
subgroup, caregiver experiences of the three waves
were compared by means of paired t tests. The fol-
lowing comparisons were performed: wave T0 versus
T1, T1 versus T2, and T0 versus T2.
Participants
n (%)
Patient Characteristics
Colon cancer
Rectal cancer
Stoma
96 (65)
52 (35)
49 (33)
Partner Characteristics
Female
94 (64)
Age:
Ͻ50 years
18 (12)
69 (47)
61 (41)
50–65 years
Ͼ65 years
Educational level:
Low
30 (20)
85 (57)
33 (23)
Middle
High
Living situation:
Living only with partner
Living with partner and children
Having children
122 (82)
26 (18)
131 (89)
Changes over time at individual level were as-
sessed by means of calculating Pearson’s correlation
coefficients. Based on previous research concerning
“change at an individual level” (Sanderman & Ran-
chor, 1994), the following rules for change were de-
fined: no change at individual level was defined as a
correlation coefficient of Ͼ0.70, coefficients between
0.70 and 0.50 indicated moderate change, and coeffi-
cients Ͻ0.50 were classified as highly dynamic.
Finally, the proportion and direction of changes in
caregiver experiences were specified. The differences
of the individual mean scores between the measure-
ment points were calculated and subsequently classi-
fied as decrease, equal, or increase. For the four nega-
tive subscales, an increase indicated a more negative
impact on the construct over time, whereas for the
positive subscale Caregiver’s Self-esteem, an increase
indicated that more self-esteem was derived from
caregiving. Again, there are no standard rules avail-
able to evaluate the size of a change as relevant. In
order to correct for variability by chance (i.e., vari-
ability resulting from a slightly different answer),
“change” was defined as a difference of at least half
the baseline standard deviation of the subscale score
between the two mean subscale scores (i.e., Ͼ0.5 ϫ
SD baseline value).
couples (89%) had children, and 18% of all partners
still lived with their children at home.
Mean Scores of Caregiver Experiences Over Time
Overall, changes in caregiver experiences over
time were small or absent (Figure 1). A decrease of
the impact on disrupted schedule and self-esteem was
observed over time, indicating less negative feelings
of being interrupted in daily activities and a change in
a less positive direction, respectively. Three out of the
five domains of caregiver experiences remained sta-
ble over time (i.e., Financial Problems, Lack of Family
Support, and Loss of Physical Strength).
Group Variability Over Time for the Total Group and
Among the Subgroups
Table 2 shows the mean scores at the three mea-
surement points and group variabilities over time for
the total group and among the subgroups, according
to gender, age, and SES. Because changes between
T0–T1 and between T1–T2 were in the same direc-
tion, but less substantial as compared to overall
changes between T0–T2, only effect sizes based on
differences between T0–T2 are presented. When first
examining differences between the subgroups at
each measurement point, no differences were ob-
served regarding the impact on disrupted schedule,
financial problems, and lack of family support. With
respect to loss of physical strength, female caregivers
reported a higher impact than male caregivers, and
this difference was also observed over time. With re-
spect to self-esteem, caregivers with a high SES re-
ported a less positive score, indicating that they de-
rived less self-esteem from providing care than other
subgroups. Post-hoc analyses revealed that caregivers
with a high SES differed significantly from those with
Results
Sample Characteristics
Table 1 presents disease-specific characteristics of
the patients and sociodemographic characteristics of
the partner caregivers who participated at all three
waves. Most patients (nϭ96, 65%) were diagnosed
with colon cancer, and 52 (35%) were diagnosed
with rectal cancer. Thirty-three percent of all patients
had a stoma. The caregiver group consisted of 54
men and 94 women ranging in age from 25 to 89
years (mean age ϭ 63 years, SD ϭ 11 years). Most
Vol. 40, No. 6, 2000
741

Figure 1. Scores for the subscales of the Caregiver Reaction Assessment Scale at baseline (T0), 3 months (T1), and 6 months (T2) after
patient’s hospital admission.
a middle SES (F ϭ 8.37; p Ͻ .05); between low and
middle SES no significant differences were observed.
Over time, the patterns of caregiver experiences
differed between the subgroups regarding three do-
mains, namely Disrupted Schedule, Financial Prob-
lems, and Self-esteem. In the youngest age group and
those with the lowest SES, no significant time effect
on Disrupted Schedule could be observed, whereas in
the older caregivers and in those with a higher SES a
less negative impact on Disrupted Schedule over time
was found. Younger caregivers tended to report a
higher (i.e., more negative) impact on Disrupted
Schedule and continued to do so over time, whereas
older caregivers appeared to experience caregiving as
less negative over time. Given the effect sizes (varying
between 0.47 and 0.93), the changes in impact on
disrupted schedule over time appeared to be moder-
ately to strongly relevant. For Financial Problems, care-
givers with a low to middle SES reported a slightly
stronger, but nonsignificant, impact on financial prob-
lems at baseline, indicating that they experienced
rather more financial strain when providing care com-
pared to caregivers with a high SES. However, over
time caregivers with a low to middle SES reported a
less negative impact on finance, while the opposite
trend was observed in the highest SES group. Finally,
with respect to Self-esteem, female caregivers, older
caregivers, and those with a high SES reported a less
positive impact of self-esteem over time, whereas
men, those of younger ages, and those with a lower
SES showed rather stable levels. The observed changes
over time could be considered as small to moderate
(effect sizes varied between 0.14 and 0.61).
each subscale. Because changes between T0 and T1,
and between T1 and T2 all pointed in the same direc-
tion, but were less substantial as compared to overall
changes between T0 and T2, only changes between
T0 and T2 are presented. As shown, the correlation
coefficients of the subscales Disrupted Schedule and
Lack of Family Support were relatively low, indicat-
ing a large individual variability. For Disrupted
Schedule, variability was high within each subgroup.
The frequency distribution of part B showed that
most changes in the impact on disrupted schedule
turned out to be in a less negative direction, indicat-
ing less negative impact on disrupted schedule over
time. With respect to Lack of Family Support, individ-
ual caregivers reported a change in scores over time,
even though no group variability was found (see Ta-
ble 2). A closer inspection of the data revealed that
the proportions of caregivers who reported a de-
creased, an equal, or an increased score 6 months af-
ter baseline were similar, and therefore the impact on
Lack of Family Support remained stable at a group
level. Particularly within the highest SES group, indi-
vidual variability was large, and of all subgroups,
those in the youngest age groups remained most sta-
ble at the individual level.
Individual variability over time was observed to a
lesser extent for scores expressing the impact on finan-
cial problems and loss of physical strength, and it was
least substantial for scores on self-esteem. Overall, ap-
proximately 50% of the caregivers reported equal
scores on these subscales at baseline and 6 months
later. Nevertheless, with respect to Financial Problems,
especially caregivers with a low SES had varying scores.
For Loss of Physical Strength, most individual variability
was found in women, the younger age groups, and
those with the highest SES. For Self-esteem, mainly car-
egivers in the lowest and middle SES groups reported
different scores at the two measurement points.
Individual Variabilities and Proportional Changes
Over Time
In Table 3, the variability at an individual level
and proportional changes over time are presented for
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Table 2. Means of Caregiver Experiencesa Over Time, Groups Variabilitiesb, and Effect Sizes, by Gender, Age and
Socioeconomic Status
Gender
Female
Age Group
50–65
Socioeconomic Status
Impact of
Caregiving on:
Total
Male
Ͻ50
Ͼ65
Low
Middle
High
Disrupted Schedule
T0
2.41 (0.82)
2.20 (0.85)
1.99 (0.73)
18.27***
0.63
2.38
2.43
2.30
2.52
2.33
2.17
1.52
—
2.41
2.19
2.35
2.23
2.23
2.01
0.79
—
2.40
2.18
2.62
2.30
2.19
4.38*
0.69
T1
T2
2.03
2.16
1.96
9.84***
0.51
2.06ϩ
10.34***
0.54
1.89
2.04
4.95**
0.47
1.90
Group variability
13.44***
15.74***
0.76
Effect size
0.93c
Financial Problems
T0
1.88 (0.59)
1.83 (0.54)
1.82 (0.52)
1.47
1.89
1.84
1.87
0.40
—
1.87
1.84
1.82
1.69
—
1.83
1.92
1.70
1.98
—
1.97
1.88
1.93
0.66
—
1.79
1.74
1.74
0.97
—
1.88
1.90
1.81
0.55
—
1.95
1.83
1.82
4.59*
0.37
1.69
1.79
1.84
1.27*
—
T1
T2
Group variability
Effect size
—
Lack of Family Support
T0
2.11 (0.59)
2.18 (0.59)
2.17 (0.51)
1.06
2.02
2.10
2.13
0.58
—
2.16
2.21
2.18
0.59
—
1.93
1.93
2.09
1.73
—
2.12
2.17
2.14
0.58
—
2.16
2.24
2.23
0.51
—
2.17
2.23
2.15
0.26
—
2.10
2.16
2.17
1.10
—
2.10
2.15
2.19
0.39
—
T1
T2
Group variability
Effect size
—
Loss of Physical Strength
T0
1.93 (0.61)
1.94 (0.61)
1.87 (0.65)
1.32
1.76
1.81
1.75
1.42
—
2.03**
2.01
1.96*
0.61
—
1.82
2.03
1.97
0.73
—
1.89
1.89
1.79
1.78
—
2.01
1.96
1.95
0.55
—
2.02
1.98
2.02
0.76
—
1.93
1.92
1.81*
3.27*
0.26
1.87
1.95
1.95
0.28
—
T1
T2
Group variability
Effect size
Self-esteem
T0
—
4.22 (0.41)
4.13 (0.40)
4.13 (0.43)
6.23**
4.16
4.09
4.08
1.60
—
4.24
4.16
4.10
4.90**
0.35
4.26
4.17
4.17
1.09
—
4.16
4.11
4.13
0.94
—
4.26
4.14
4.11
6.38**
0.14
4.29
4.20
4.20
1.63
—
4.24
4.17
4.17
1.81
—
4.10
T1
T2
3.97*
3.96*
4.35*
0.61
Group variability
Effect size
0.49
aA high score on impact on Disrupted Schedule, Financial Problems, Lack of Family Support or Loss of Physical Strength indicates a
negative impact on caregiver experiences, whereas a high score on the impact on Self-esteem indicates a positive impact on caregiver ex-
periences.
bGLM analyses of variances.
cEffect size Ͼ 0.80, indicating a large effect.
ϩp Ͻ .10; *p Ͻ .05; **p Ͻ .01; ***p Ͻ .001.
In sum, the largest individual variability was ob-
served for the impact on Disrupted Schedule and
Lack of Family Support, and the least individual vari-
ability was observed for the impact on Self-esteem.
Within subgroups, individual variability depended
predominantly on the type of impact. However, most
individual variability was observed among caregivers
in the lowest SES group.
ing care was perceived as being less interruptive of
daily activities 6 months after baseline. A decreasing
score on Self-esteem over time indicates that caregiv-
ers were perceived to derive less self-esteem from
caregiving over time. Distinctive patterns between
male and female caregivers, and the age and SES
groups were observed for specific caregiver experi-
ences. Not all caregivers could be characterized by
the overall patterns, because of a large individual
variability.
Female caregivers perceived a more negative im-
pact on Loss of Physical Strength as compared to
male caregivers, and although Caregivers’ Self-esteem
did not change over time in male caregivers, female
caregivers reported a less positive influence on self-
esteem over time. Differences in social roles, in range
of competing roles, and in role commitment may ac-
count for the observed distinctive patterns between
female and male caregivers (Kramer & Kipnis, 1995).
Also, differences in emotional attentiveness, in cop-
ing styles, or in occupying caregiving tasks may ex-
plain the observed gender differences (Rose-Rego,
Discussion
This study shows patterns of caregiver experiences
in partners of cancer patients to vary over time and
reports different patterns for several domains of expe-
riences and according to subgroups of caregivers. It
indicates that impact of caregiving on Disrupted
Schedule and on Caregiver’s Self-esteem both de-
creased over a period of 6 months postdischarge,
whereas the impact on Financial Problems, Lack of
Family Support, and Loss of Physical Strength re-
mained constant over time. A decreasing score on
Disrupted Schedule over time indicates that provid-
Vol. 40, No. 6, 2000
743

Table 3. Individual Variabilities and Proportional Changes in Caregiver Experiences Between Time 0 and Time 2
Gender
Age Group
50–65
Socioeconomic Status
Impact of
Caregiving on:
Total
0.26a
Male
Female
Ͻ50
Ͼ65
Low
Middle
High
Disrupted Schedule
Individual variability
% Decrease
0.28a
11
42
47
0.26a
14
0.39a
0.42a
10
0.21a
Ϫ.13a
17
53
30
0.37a
12
0.19a
12
36
52
13
17
15
% Equal
% Increase
42
45
42
28
56
42
46
39
40
47
48
48
Financial Problems
Individual variability
% Decrease
0.53
0.49a
25
49
26
0.56
23
0.72
0.50
26
0.46a
23
48
29
0.16a
27
50
23
0.65
19
0.43a
33
49
18
24
48
28
17
50
33
% Equal
47
48
47
% Increase
30
26
34
Lack of Family Support
Individual variability
% Decrease
0.27a
35
38
28
0.31a
42
40
19
0.21a
31
0.68
0.17a
26
0.24a
44
28
28
0.37a
33
27
40
0.43a
32
0.03a
43
33
24
33
50
17
% Equal
36
44
43
% Increase
33
30
25
Loss of Physical Strength
Individual variability
% Decrease
0.46a
16
58
26
0.59
0.40a
18
0.44a
33
28
39
0.41a
13
0.53
0.48a
13
67
20
0.52
14
0.33a
24
61
15
13
66
21
15
62
23
% Equal
53
61
53
% Increase
Self-esteem
Individual variability
% Decrease
29
26
23
0.58
0.68
0.51
32
58
14
0.73
0.57
25
57
19
0.55
0.49a
30
50
20
0.46a
28
55
17
0.79
31
52
17
30
47
23
33
44
22
38
49
13
39
46
15
% Equal
% Increase
aPearsons correlation coefficient Ͻ 0.50 indicating a high variability.
Strauss, & Smyth, 1998). As female caregivers were
found to be more attentive to their emotions, they
were more likely to report negative effects of caregiv-
ing. Also, women have been found to use more emo-
tion-focused coping strategies, which are associated
with higher reported levels of negative health out-
comes (Miller & Cafasso, 1992). Moreover, female
caregivers traditionally are likely to perform more
personal care and household chores, which may be
more time-consuming, demanding, and ongoing than
traditional male tasks (Rose-Rego et al., 1998). Our
findings give support to the importance of making a
basic distinction between female and male care-
givers, rather than to analyze them as a homoge-
neous group of caregivers, but additional research is
needed to interpret the observed gender differences
in caregiving.
Younger caregivers tended to report a more nega-
tive impact on disrupted schedule and continued to
do so over time, whereas older caregivers appeared
to experience caregiving as less negative over time. A
possible explanation may be that younger persons
feel more restricted in performing outside activities,
such as work and social activities, when they have to
take on the caregiving role. Likewise, younger per-
sons may experience more secondary role strains,
such as work and child rearing; thus, caregiving may
be a more easily accepted role at a later stage of life.
Regarding SES, no differences between the sepa-
rate categories were found with respect to the nega-
tive caregiver experiences. However, scores for the
impact on self-esteem in caregivers with a low SES
were high and remained practically constant over
time, whereas caregivers with a high SES derived
substantially less and a decreasing amount of self-
esteem from caregiving. As caregivers with a low SES
derive self-esteem from caregiving activities—and
they remain to do so over time—the caregiver role
may be of greater importance to them compared to
those with a high SES. It is plausible that caregivers
with a high SES derive more self-esteem from outside
activities (e.g., work) or from other resources.
Patterns of three out of five caregiver experiences
were found to be stable. Findings of stable patterns of
caregiver experiences have also been reported by
other researchers (Collins, Stommel, Wang, & Given,
1994; Pruchno, Kleban, Michaels, & Dempsey,
1990). Hence, the moment at which someone takes
on and perceives the role of caregiver is of great im-
portance. In the current study, baseline has been de-
fined as the period of 2 weeks before hospital admis-
sion. However, someone may have assumed the
caregiver role long before this period, perhaps at the
time of the first complaints. The implication to study
patterns of caregiver experiences among carers of
cancer patients at the moment of the first complaints
(i.e., in most cases before the diagnosis is actually
clear) is, however, unfeasible. In this study, the acute
and early chronic phases of the cancer process were
addressed. The fixed time period of 6 months after
patient’s discharge might be too short to test, how-
ever, if patterns in caregiver experiences have be-
come manifest. Patterns in caregiver experiences
may even become more pronounced over time,
744
The Gerontologist

when the patient’s health is still deteriorating or im-
proving and with ongoing changes in care demands
or in caregivers’ health (Kurtz, Kurtz, Given, &
Given, 1995). Also, it might well be that the longer
the chronic phase, the more caregivers’ resources get
depleted, and this may have an effect on how care-
giving is perceived. As the consequences over a
longer term are still largely unknown, future research
should reflect on a longer period of time.
nately, as yet, data concerning absolute changes in
caregiver experiences as well as cutoff scores to de-
tect caregivers at risk are unavailable. An external
criterion is needed that is acceptable as a standard
against which the instrument under study can be
judged. The development of indicators for assessing
clinically relevant changes of caregiving experiences
should be encouraged.
In sum, this study shows the advantages of study-
ing caregiver experiences as a multidimensional con-
cept that includes both negative and positive experi-
ences of caregiving and underlines the value of
studying both inter- and intraindividual patterns
across different subgroups. Women, younger caregiv-
ers, and those with a high SES were identified as sub-
groups that are most vulnerable as caregivers and
perhaps in potential need of support. Further longitu-
dinal research is needed to document the patterns of
caregiver experiences over a longer period of time
and for different groups of caregivers. Also, more re-
search could reveal factors that differentiate caregiv-
ers who experience wear and tear from those who
seem rather to adapt to the caregiving situation in or-
der to develop specific interventions to support infor-
mal caregivers.
In order to explain the patterns observed, addi-
tional longitudinal analyses should be performed
(Singer, 1998). The focus of this study was purely de-
scriptive, and therefore implies reservation regarding
the predictive value of time (i.e., whether a wear-
and-tear model or an adaptational model is most ap-
propriate). However, the current findings gave little
support to using only the wear-and-tear model, that
is, a model which simply suggests that the longer
care is provided, the more negative (or less positive)
the outcomes will be, and which is supported by pre-
vious research (Townsend, Noelker, Deimling, &
Bass, 1989; Walker, Acock, Bowman, & Li, 1996).
Caregivers were shown to derive less self-esteem
from caregiving activities over time, and this is in favor
of the wear-and-tear model, but, on the other hand,
the impact on disrupted schedule showed a decrease
over time and this is consistent with an adaptational
model. Apart from time and care characteristics, dis-
ease-specific characteristics, social support, personal-
ity characteristics, quality of the relationship, and
caregiver’s own health are likely to play an important
role in caregiving (Biegel, Milligan, Putham, & Song,
1994; Bull, 1990; Intrieri & Rapp, 1994; Kurtz et al.,
1995; McCorkle et al., 1993; Nijboer, Tempelaar,
Triemstra, Sanderman, & Van den Bos, 1999; Walker
et al., 1996; Wright, Clipp, & George, 1993).
Some issues need to be addressed with respect to
the generalizability of the findings. First, only care-
givers of cancer patients with relatively good health
and a good prognosis were included and stayed in
the study. Over the three waves, 13% of the patients
died or had to withdraw because of deteriorating
health, and especially in their partners the conse-
quences of caregiving might have become very obvi-
ous. Second, a relatively high score on the positive
domain of caregiver experiences and relatively low
scores on the negative domains were observed as
compared to reference studies involving caregivers of
cancer patients (Given, Given, Helms, Stommel &
DeVoss, 1997; Given et al. 1993; Kurtz, Given,
Kurtz, & Given, 1994; Kurtz, et al., 1995, 1997; Mc-
Corkle et al., 1993). It may be questioned whether
high scores are due to a ceiling effect, and low scores
to a floor effect, respectively. Furthermore, a general
problem in the discussion on change scores is the
phenomenon of “regression to the mean.” In addition
to studying caregiver experiences in other circum-
stances, the sensitivity of the CRA instrument needs
to be further examined. Finally, the definition of the
concept of change is rather arbitrarily defined, and
one may wonder if the reported variability reflects
actual changes or accidental fluctuations. Unfortu-
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Accepted June 7, 2000
Decision Editor: Vernon L. Greene, PhD
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