Background and Related
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The Effect of Cancer Patient Pain and Fatigue on Caregiver
Depression Level and Sleep Quality
Amy Bush, New Mexico State University, Las Cruces, NM
Patricia A. Carter, PhD, RN, CNS
The University of Texas at Austin, School of Nursing, Austin, TX
The work reported here was conducted
as part of a South West Partnership Center Summer Internship
at The University of Texas at Austin School of Nursing.
Purpose: Cancer patients
are discharged home with significant care needs that family caregivers fulfill. Despite the rising number
of caregivers, little research has focused upon the relationship between
caregiver outcomes and patient symptoms. The relationship between patient pain
and fatigue and caregiver depression and sleep was examined.
Methods: Eighty-two adult caregivers of persons with cancer participated.
Demographic, patient symptom, caregiver depression (CESD), and sleep (PSQI) data
were collected during a one-time interview conducted in caregiver homes.
Descriptive statistics, correlations, and regressions were performed.
Results: Patient pain was significantly correlated with caregiver depressive
symptoms (r= 0.315, p<0.004), but not with caregiver sleep problems. No
significant correlations were found between patient fatigue and caregiver sleep
Patients with cancer experience severe levels of pain and fatigue. Caregivers
report severe levels of sleep problems and depression. Possible relationships
exist between patient symptoms and caregiver outcomes which need further study.
tend to be discharged from the hospital setting to the home more quickly, are
oftentimes quite frail, and require complicated care procedures that fall
squarely upon the family caregiver (Ferrell & Borneman, 1999). Despite the
rising number of caregivers, little research has focused upon the relationship
between caregiver outcomes and patient symptoms (Koop & Strang, 2003; Nijboer et
Caregiver burden has been shown to
increase with the length of time spent caring for the patient (Winslow & Carter,
1999). With cancer patients surviving longer and continuing treatment for longer
intervals, it is likely that a caregiver will spend a longer period of time
caring for a patient. Therefore, the caregiver risks his or her psychological
and physiological well-being when the tasks and worry associated with the
patient’s care are added to the normal load of life’s tasks. The purpose of this
study was to examine the effect of patient pain and fatigue on caregiver
depression level and sleep quality.
Background and Related Literature
Pain—Miaskowski and colleagues’ (1997) study
compared tension and depression among caregivers of patients. It was found that
those caregivers of patients with cancer-related pain scored higher for tension
and depression than caregivers of patients without cancer-related pain. In
addition, the presence of pain in patients negatively affected the level of
caregiver depression and anxiety.
providers can support caregivers by being sensitive to their psychological and
physiological needs. Interventions to enhance sleep quality or address
depression levels might be appropriate in some situations. A longitudinal study
that focuses upon how patients’ symptoms affect the caregivers’ sleep quality
and depression levels would be useful in uncovering more direct relationships.
Kozachik and colleagues’ (2001) study found that in an
89-patient/caregiver dyad sample, patients’ symptoms were a significant
predictor of caregiver depression. In a similar study of 30 dyads, a significant
relationship was found between caregiver burden and symptom distress of the
patient (Andrews, 2001).
Pain is a particularly distressing symptom for both the
cancer patient and the caregiver. Many are concerned about the patients’
possible addiction, tolerance, and side effects of pain medications. Other
patients and caregivers fear that reporting pain will detract from treatment.
Consequently, pain is greatly underreported to the healthcare provider (Lin et
al, 2001; Schumacher et al, 2002). Caregivers rated distress over patients’ pain
a mean of 78 (on a 1 to 100 scale) (Ferrell & Borneman, 1999). This indicates
that patient pain is a major source of anxiety for caregivers.
Fatigue—Fatigue is another symptom common among
cancer patients that distresses caregivers. The effect of fatigue upon the
depression or sleep disruption of caregivers has not been well studied. However,
fatigue in cancer patients is associated with poorer performance status, and
those patients with fatigue-related symptoms have shown increased sleep problems
(Jacobsen et al, 1999). It is the caregiver who must attend to he patient when
sleep problems arise.
Caregiver Outcomes—Sleep inadequacies and depression
links have been well documented in the literature. In fact, 90% of patients with
major depression also suffer from insomnia (Mosier et al, 1998). Most cancer
caregivers report sleep problems, and of those, more than half suffer from
depression. Caregiver sleep disturbance is a strong predictor of caregiver
depression (Carter & Chang, 2000).
report disturbed sleep patterns and depression. In a study of 106 caregiving
spouses of patients with Parkinson’s, frequent sleep disturbances were reported
in 27% of all spouses. In addition, depressive symptoms were manifested in 30%
of the spouses. It was found that self-reported nighttime sleep quality in
spouses was related to symptom severity of the patient. Caregivers experience
greater rates of stress, depression, and sleep problems than those individuals
in noncaregiving roles (Happe & Berger, 2002). When considered together,
the preceding studies suggest that certain symptoms experienced by the cancer
patient negatively affect the caregiver’s sleep quality and depression level.
Previous studies have linked patient pain to caregivers’ depression level;
however, the relationship of patient fatigue to caregivers’ depression level or
sleep quality has not been studied. Therefore, this study examined the
relationship between patient pain and fatigue and caregiver depression and
Sample—The sample consisted
of 82 caregivers who participated in three similar, but separate, research
studies. All caregivers were living with and helping someone diagnosed with
advanced stage cancer. Caregivers were at least 18 years of age, able to speak,
read, and write English, and freely consented to participation. Caregivers with
a prior history of sleep disorders or mental illness were excluded from study
participation. All caregivers who expressed interest in participating in the
studies were eligible and finished the studies.
Procedure— University IRB approval was obtained for all three studies.
All subjects were recruited from community outpatient cancer care centers. The
study procedures were explained, and informed written consent was obtained prior
to data collection. The data were collected in the subjects’ homes for the
convenience of the caregivers. Identifying information was removed from all
files and the data were accessible to authorized research associates for study
Instruments—Data including caregiver age, gender,
ethnicity, religion, education, income, and occupation were measured. Cancer
patient data were collected from the caregiver’s point of view and included
measures regarding symptoms experienced in the last month, treatments taken, and
any illnesses (other than cancer). Pain and fatigue, the most frequently
occurring symptoms, were the focus of this study.
Caregiver depression was measured using the Center for
Epidemiological Studies-Depression Scale (CES-D) scale, a 20-item, 4-point
Likert scale ranging from 1 (never) to 4 (most of the time) (Radloff & Teri,
1986). Responses are summed, and higher scores indicate more depressive
symptoms. Scores above 16 were considered to be indicative of increased risk for
clinical depression. The CES-D was designed to measure depressive symptoms in
non-psychiatric subjects and has been used with caregivers. The Cronbach’s alpha
for this study was 0.86.
Family caregiver sleep problems were measured using the
Pittsburgh Sleep Quality Index (PSQI) (Buysse, Reynolds, Monk, Berman, & Kupfer,
1989). This index has 19 self-rated questions that require participants to
reflect back over the previous month and describe their sleep experiences. Items
are combined into seven subscale scores (i.e., sleep quality, sleep latency,
sleep duration, habitual sleep efficiency, sleep disturbances, sleep
medications, and daytime dysfunction), each of which has a range of 0 (no
difficulty) to 3 (severe difficulty) points. The seven subscale scores then are
added to yield one global score, with a range of 0 to 21 points (0 =
difficulty, 21 = severe difficulty in all areas). A global score ≥ 5 indicates
that a subject is having severe difficulty in at least two areas or moderate
difficulty three or more areas (Buysse et al). Cronbach’s alpha for this study
Data Analysis— The three data sets were recoded to
match study variables between the studies. Independent t-tests were then
executed. No significant study variable differences were found between the
groups; therefore, they were treated as one group for analysis. Descriptive
statistics were calculated to summarize demographic data. Pearson’s Correlations
were run to evaluate relationships between variables of interest. Regression
analysis was executed to explain variances in CES-D scores.
The sample consisted of 63 (77%) female and 19 (23%) male
caregivers. Fifty-four (66%) of the caregivers were spouses, 20 (24%) were adult
children of the patients, and 8 (10%) were friends or other relatives. The
caregivers ranged from 23 to 81 years of age with a mean of 53 years (SD=14.63).
The caregivers’ education level ranged from 9 to 28 years, with 15 years of
education being the mean. Sixty-two (76%) were Caucasian, 8 (10%) were African
American, 6 (7%) were Asian American, 4 (5%) were Hispanic American, and 2 (2%)
reported belonging to other ethnic groups. The caregivers spent 1 to 24 hours a
day with the cancer patients, with a mean of 16 hours. Patients ranged from 19
to 89 years of age with a mean of 61.8 years (SD=13.98). Patient gender
consisted of 45 (55%) males and 37 (45%) females. Most of the patients were
Caucasian (n=63, 77%).
The caregivers as a group reported a high level of sleep
problems with the PSQI scores ranging from 2 to 21 (M
=10.72, SD=4.18) and hours of actual sleep per night ranged from 3 to 8 (M=5.47, SD=1.32). The caregivers’ depression scores (CES-D) ranged from 0 to 44 (M=19.40,
SD=10.76). The PSQI and CES-D totals were shown to have a significant
relationship (r=0.591, p<0.001), indicating that sleep quality and depression
levels are related. In addition, the following PSQI subscales were shown to be
related to CES-D scores: sleep latency r=0.269, p<0.015), sleep duration
(r=0.401, p<0.001), sleep efficiency (r=0.353, p<0.001), and subjective sleep
quality (r=0.353, p<0.001). The CES-D and pain were shown to have a significant
relationship (r=0.315, p<0.004) and the CES-D and fatigue relationship
approached significance (r=-0.210, p<0.059).
The PSQI was not shown to have a significant relationship
to the symptoms of pain or fatigue. However, significant relationships with
fatigue were indicated with two of the PSQI subscales. Fatigue was shown to have
a relationship with sleep efficiency (r=-0.247, p<0.025) and sleep duration
(r=-0.222, p<0.045). Moreover, pain approached a significant relationship with
subjective sleep quality (r=0.202, p<0.069). Based on these correlations a
stepwise regression analysis was executed. Pain explained the 9.9% variance in
the CES-D score.
The findings support
previous study findings that sleep quality and depression are related, and that
those who experience poorer sleep quality will likely experience higher
depression levels (Carter & Chang, 2000; Happe & Berger, 2002; Mosier et al,
As expected, depression was also highly correlated with the
PSQI subscale elements (e.g., sleep latency, sleep duration, sleep efficiency,
and subjective sleep quality) indicating that those who have significant
depression also have more difficulty going to sleep, sleeping through the night,
sleeping enough hours, and report that their sleep quality is diminished.
The findings also suggest a significant relationship
between caregiver depression and patient pain. Surprisingly, patient pain and
caregiver sleep quality were not found to have a significant relationship with
the measures taken. Patient fatigue and the PSQI total also did not have a
significant relationship. However, two of the subscales (sleep efficiency and
sleep duration) from the PSQI instrument were found to be related to fatigue.
This suggests that patient fatigue may indeed affect caregiver sleep quality,
but that the items used to assess patient pain and fatigue were not sensitive
enough to capture the caregivers’ sleep and patients’ symptom relationship.
Despite the defects, some significant relationships were found. In future
studies, symptoms should be assessed using more specific questions.
Limitations of this study include restricted
generalizability, as the sample was a small group of highly educated and largely
Caucasian study participants. In addition, the cross-sectional nature of the
data limits the researcher’s ability to describe changes in variables over time.
Nevertheless, significant relationships were found between many of the study
variables. Certain patient symptoms (e.g., pain and fatigue) do have an effect
on the caregiver’s sleep quality and depression level.
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