Results
Data were cleaned and those with incomplete data were deleted from the analysis. In addition, survivors who did not have complete data from their caregiver were excluded from this analysis. The final sample consisted of 68 African American dyads (N = 136 participants). The Table summarizes the demographic characteristics of the sample. The majority of survivors and caregivers were female. There were some notable differences in demographic characteristics between the 2 groups. A higher percentage of caregivers were younger and married, with incomes greater than $20 000, and had more than a high school education when compared with the survivors. Survivors averaged 2.7 years from time of diagnosis at questionnaire administration, with breast or colorectal being the most common cancers. Cancer stage at diagnosis varied, but 50% did not know their stage. Eighty-three percent of the survivors were in treatment at the time of data collection.
What Is the Level of Strain Among Caregivers?
On average, caregivers indicated a low to moderate level of caregiver strain. Overall, individual areas that caused the most strain (Figure 2) for the caregivers were lack of sleep, disruption of routine, having to change personal plans, demands on time, emotional adjustments, upsetting behaviors of the survivor, changes in survivor's personality, work adjustments, financial problems, and feeling completely overwhelmed. Because of the limited research on cancer caregiver strain among African Americans coupled with the variability of which aspects or variables contributed to the composite score, the researchers dichotomized caregiver strain into low (score <6) and high. Other research has also viewed the issue of caregiver strain from the perspective of high versus low strain. This view is important because it may be that although composite scores are low, the interpretation or effect of the strain may still have a significant influence on the caregiver. Furthermore, the use of the CSI is not well documented in African Americans, so there may be cultural or other factors that influence how these caregivers internalize, interpret, or report aspects that lead to caregiver strain. Thirty-five percent (35%) of the caregivers indicated high caregiver strain compared with a mean of 2.7 for caregivers (65%) who indicated low levels of strain.
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Figure 2.
Areas contributing to caregiver strain.
What is the QoL of Caregivers?
Caregivers in the current sample reported poorer QoL, with subscale and summary scores ranging from 20 to 70 compared with how the general population responded to these questions in previous national testing of QoL. This is important because when compared with QoL among the general population, these scores suggest that a score of 50 means positive QoL. For the current study, caregivers reported QoL scores slightly lower than the general US population in the areas (Figure 3) of physical functioning, role-physical, general health, social functioning, role-emotional, mental health, and the physical and mental component summary scores.
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Figure 3.
Average quality of life (QoL) domain scores for caregivers.
What is the Relationship Between Caregiver Strain and QoL Among Caregivers?
Pearson correlations were used to examine the strength and direction of the relationships between caregiver strain and QoL subscale scores (Figure 4). There were moderate to very strong negative relationships (suggesting that as one variable increased, and the other decreased) between caregiver strain and bodily pain (r = −0.767, P < .001), social functioning (r = −0.568, P = .007), role-emotional (r = −0.487, P < .025), and the mental component score (r = −0.588, P < .005). Caregiver strain was also dichotomized into "low" versus "high" strain to determine the relationship between caregiver strain and QoL using independent-samples t tests. Caregivers who reported high levels of caregiver strain had significantly lower scores on the QoL subscales of role-physical (t39.95 = 2.73, P = .009), bodily pain (t42.67 = 4.41, P = .001), social function (t46 = 3.01, P = .004), role-emotional (t40.3 = 2.59, P = .013), and the physical (t36.78 = 2.53, P = .016), and mental (t46 = 2.38, P = .02) component summary scores. Multiple regression was used to evaluate the predictors of subscale components of QoL. Gender, education, income, marital status, caregiver strain, and time since the survivor's diagnosis were entered into the model. Caregiver strain had the highest mean and only significant predictor of bodily pain (F1 = 24.62, P < .0001), social functioning (F1 = 6.35, P = .029), and mental health summary score (F1 = 5.59, P = .037). The relationship between caregiver strain and role-emotional function was not significant once the other variables were added to the model. There was no difference in the level of cancer strain based on cancer type of the survivor (χ4 = 3.21, P = .522).
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Figure 4.
Comparison of low and high caregiver strain on caregivers' quality of life (QoL). Abbreviations: BPN, bodily pain; MCSN, mental component summary; PCSN, physical component summary; REN, role-emotional; RPN, role function.
What Is the Level of Symptom Distress and QoL Among Survivors?
On average, survivors indicated a moderate level of symptom distress that approached the high end of the moderate range (X̄ = 25.6). The most frequently endorsed symptoms associated with moderate to severe distress were fatigue, pain occurrence, pain severity, insomnia, and the severity of nausea. Survivors in the current sample reported poorer QoL, with subscale and summary scores ranging from 19 to 68. On average, survivors reported low QoL subscales on physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional, mental health, physical mental component, and mental component summary scores.
Comparison of Survivors and Caregivers: QoL, Caregiver Strain, and Symptom Distress
Survivors reported lower levels of QoL compared with their caregivers (Figure 5). There were significant, moderately strong relationships between bodily pain (r = 0.445, P = .03), mental health (r = 0.420, P = .04), and the mental health component scores (r = 0.530, P = .009) for survivors and their caregivers. There was a moderately strong, statistically significant relationship between caregiver strain and the symptom distress experienced by the survivor (r = 0.487, P < .001). There were significant, moderately strong relationships between the level of caregiver strain and the QoL of the survivors. Specifically, there were relationships between caregiver strain and the survivors' role function (r = −0.437, P = .04), bodily pain (r = −0.521, P = .01), general health (r = −0.446, P < .02), social functioning (r = −0.492, P < .02), and the normalized physical component summary score (r = −0.459, P < .03).
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Figure 5.
Comparison of survivors' and caregivers' quality of life (QoL) scores. Abbreviations: BPN, bodily pain; GHN, general health; MCSN, mental component summary; PCSN, physical component summary; PFN, physical function; REN, role-emotional; RPN, role function; SFN, social function.