Abstract

Introduction

Background and Related Literature

Method

Results

Discussion

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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 program at The University of Texas at Austin School of Nursing.


Abstract

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 or depression.

Conclusions: 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.

Introduction

Increasingly, patients 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 al, 1998).

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.

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).

Caregivers often 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 sleep.


Method

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 purposes only.

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 was 0.81.

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.

Results

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.

Discussion

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, 1998).

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.

Healthcare 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.

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