In the nursing and healthcare literature, suffering is commonly described in terms of an awareness of the impact of a deteriorating physical state on an individual1: the construction of events such as pain or loss as threats to the individual self2; a visceral awareness of the self’s vulnerability to being broken or diminished at any time and in many ways3; and the experience of having to endure, undergo, or submit to an evil of some sort.4 Suffering is an intensely personal experience5 whose presence and extent can be known only to the sufferer,1 something unsharable6 that, paradoxically, involves asking the question “why.”5 Researchers in diverse settings consistently have concluded that suffering exists across dimensions of physical, psychological and emotional, social and interpersonal, and spiritual and existential well-being.5 For our purposes, suffering is a broad construct defined as a state of severe distress associated with events that threaten the intactness of the person as a complex physical, social, psychological, and spiritual being and that is subjective and unique to the individual.7,8
Serious disease can result in serious suffering.9 Analogous to the association of pain with suffering is the association of cancer with death. Another major factor in the association of cancer with suffering is the recognition of the drastic effects of cancer treatments. Even with a good prognosis, the effects of surgery, chemotherapy, and radiation therapy are distressing and can be devastating.5 Suffering of patients with primary malignant brain tumors (PMBTs) can be particularly notable across the cancer trajectory encompassing initial diagnosis, treatment, remission, and even long-term survival. In addition, patients with PMBT can have cognitive deficits including difficulty speaking, difficulty remembering, or difficulty concentrating. These neurologic deficits can drastically interfere with daily life and function. Persons diagnosed with a PMBT are faced with a unique and challenging set of circumstances that affect not only them but also those close to them.10 Caregivers of persons with a PMBT must deal with both oncological and neurologic issues. They are charged with caring for a person with a potentially terminal diagnosis who is undergoing active cancer treatment and may have cognitive and neuropsychiatric sequelae.11 Suffering typically occurs in an interpersonal context and is shaped by and affects others exposed to it.12 Predictors of caregivers’ perceptions of suffering in persons diagnosed with PMBT are not established in part because of a lack of valid and reliable instruments to measure the caregiver’s perception of the care recipient suffering.
The main purpose of this study was to determine the predictors of caregivers’ perceptions of the suffering of patients with PMBT. We predicted that care recipients’ symptoms would be the main predictors of caregivers’ perceptions of the suffering while controlling for tumor type and caregivers’ characteristics (age, years of education, being a spousal caregiver, spiritual well-being, and anxiety).
The study framework was derived from the work of Schulz and colleagues13 and reflected perceived suffering, caregiver compassion, and caregiver helping and health; this framework guided identifying potential predictors of caregivers’ perceptions of the suffering of patients with PMBT and to find out to what extent caregivers’ perceptions of the patients’ suffering predicted the burden borne by caregivers and caregiver depression. Although the framework emphasizes the directional effects of perceived suffering on compassion, 1 of the framework components depicts perceived suffering as directly linked to psychiatric and physical morbidity. Therefore, we hypothesized that perceived suffering can impact caregiver burden and caregiver depression.
Being exposed to the suffering of others is an important and unique source of distress.12 Research in dementia patient populations indicates that perceived suffering can contribute to caregiver depression and caregiver burden.7,12 Similarly, descriptive findings in a longitudinal study in 1330 older married couples enrolled in the Cardiovascular Health Study confirmed that exposure to spousal suffering is an independent and unique source of distress in couples and contributes to psychiatric and physical morbidity.14
Psychobehavioral responses of caregivers that include depression, burden, anxiety, and positive responses to care have been studied previously, mostly in patients’ population with dementia or oncology disease. Caregiver burden and depression may be considered as a general distress response for caregivers.15 Caregiver burden is a multidimensional concept and represents the impact of providing care on different areas of the caregiver’s life (schedule, self-esteem, health, finances, feeling of abandonment), psychosocial reaction resulting from an imbalance of care demands relative to caregivers’ personal time, social roles, physical and emotional states, financial resources, and on formal care resources given the other multiple roles they fulfill.15
Depression is 1 of the most important potential adverse consequences for caregivers because it is common, associated with poor quality of life, and is a risk factor for other adverse outcomes including functional decline and mortality.16 Caregiver depression is a complex process, mediated by cultural factors (as measured by the ethnicity of the patient), patient characteristics, and caregiver characteristics.16 Positive aspects of caregiving may decrease feelings of being burdened and subsequently lead to a more positive effect of health outcomes.
Research methods for approaching human suffering are often qualitative and are based on interviews with people who are assumed to have experienced suffering.17 Some authors believe that attempting to measure suffering is reductionist and futile because of its personal and unsharable nature.7 While suffering is personal and potentially ultimately incommunicable, from a practical standpoint, that is, in order to design suitable interventions to relieve suffering, measures that approximately capture a communicable core of suffering are needed. According to Monin and Schulz,18 both the experience of suffering and the perception of suffering by others can be measured. Ultimately, measures of suffering should focus on the patient’s experience, the patient’s direct and indirect expressions of suffering, caregiver perceptions of the patient’s degree of suffering, and caregiver perceptions of whether the patient’s expression of suffering is an accurate reflection of his/her actual degree of suffering.13
Measuring suffering via caregiver perceptions of suffering is useful and important, especially for patients with impaired cognitive status because this patient population may not be able to report suffering. To better understand the perceived suffering, we examined caregivers’ anxiety and spirituality. Caregivers can play a role in relieving the suffering of their loved one by sharing the experiences, or if the suffering cannot be relieved, then caregivers can help their loved one to bear it through their companionship and compassion. To help caregivers cope with caregiving distress, researchers need to identify how caregivers perceive the suffering of their patients and the predictors of these perceptions.
The main aim of this study was to determine the predictors of caregivers’ perceptions of the suffering of patients with PMBTs. The secondary aim was to find out to what extent caregivers’ perceptions of the care recipients’ suffering predicted the caregivers’ burden and depression.
Design and Setting
Data were obtained as part of a descriptive longitudinal study of adult family caregivers of persons with PMBT (R01 CA118711). Care recipient and caregiver dyads were recruited from suburban neurosurgery and neuro-oncology clinics in Western Pennsylvania. Recruitment took place in outpatient neuro-oncology and neurosurgery clinics from October 2005 through June 2011. Data were collected from persons with a PMBT and their family caregivers. Interviews with caregivers were conducted in person or via telephone. Data were collected at 3 timepoints over the disease trajectory—right after diagnosis and 4 and 8 months after diagnosis. Data for this analysis are from the second timepoint—4 months after diagnosis to focus on a time of illness progression. Approval from the institutional review board at the University of Pittsburgh and informed consent from participants were obtained prior to data collection. Both the patient and caregiver had to consent to enroll in the study.
Caregivers were queried regarding sociodemographic characteristics, personal characteristics, and psychological responses, and care recipients were queried regarding the tumor grade, functional and neurologic ability, and symptom status. Care recipients were required to be older than 21 years, newly diagnosed (within 1 month of recruitment) with a PMBT verified by a pathology report. After the death of the care recipient, the corresponding caregiver was given the option of continuing to participate in the study. Caregivers were required to be older than 21 years, nonprofessional (ie, not paid caregivers), not a primary caregiver for anyone else (excluding children aged <21 years), and English speaking and to have regular and reliable access to a phone.
Overall, 228 caregiver and care recipient dyads were approached, with 164 agreeing to participate (70%). The main reasons for declining participation (n = 64) were lack of interest (52%), feeling overwhelmed (33%), reason not given (11%), too busy (3%), and too ill (1%). Of 164 dyads who agreed to participate, 78 ended study participation (47.6%) for various reasons: care recipients died, caregivers were overwhelmed by caregiving duties and life changes, or caregivers were not interested anymore. As a result, the sample of caregivers at the 4-month data point consisted of 86 dyads.
The primary outcome variable in this study was caregiver perception of the care recipient’s suffering during the past week as measured by 1 item; caregivers were asked at the fourth month to rate the care recipient’s suffering during the previous week on a scale of 1 (care recipient is not suffering) to 6 (care recipient is suffering terribly). This item was developed by the study investigators. A single-item was purposefully used for its simplicity and ease of use.
Secondary outcomes included caregiver burden and caregiver depression. Caregiver burden was measured using the Caregiver Reaction Assessment (CRA) scale. The CRA is a feasible, reliable, and valid instrument for assessing specific caregiver experiences, including both negative and positive experiences, in caregivers of cancer patients.19 The CRA comprises 24 items forming 5 distinct unidimensional subscales: disrupted schedule (5 items), financial problems (3 items), lack of family support (5 items), health problems (4 items), and self-esteem (7 items).20 Respondents were asked to indicate their level of agreement with statements about their feelings regarding caregiving over the previous month. Responses were scaled on a 5-point Likert-type format (5 = strongly agree to 1 = strongly disagree). This analysis focuses on 3 subscales: the self-esteem subscale, the abandonment subscale, and the schedule subscale (which measures the perception of burden on the caregiver’s daily activities as a result of providing care). For the self-esteem subscale, a higher score indicates a lower burden related to self-esteem, that is, a positive reaction to caregiving. For abandonment and schedule subscales, a higher score indicates a higher burden, that is, negative reactions to caregiving. Reported reliability analyses19 showed sufficient internal consistency based on standardized Cronbach’s α (.62–.83).
Caregivers’ depressive symptoms were measured using the Shortened Center for Epidemiologic Studies Depression Scale (CES-D). The original CES-D scale is a 20-item self-report scale designed to measure depressive symptoms in the general population. The items on the scale are symptoms associated with depression that were chosen from previously validated scales.21 We used a shortened CES-D with 10 items.22 Response categories indicate the frequency of occurrence of each item and are scored on a 4-point scale ranging from 0 (rarely or none of the time/<1 day) to 3 (most or all of the time/5–7 days). Scores for items 5 and 8 were reversed before summing up all items to yield a total score. Total scores can range from 0 to 30. Higher scores indicate more severe symptoms.23 Validity for the CES-D has been well established in caregivers and well adults.22
Independent variables were chosen based on previous associations reported in the literature as well as hypotheses generated from clinical knowledge in neuro-oncology. Perceived severity of the care recipient’s symptoms was measured using the M. D. Anderson Symptom Inventory–Brain Tumor (MDASI-BT). Caregivers were asked to rate the severity of the care recipient’s difficulty understanding (speaking, remembering, concentrating) at its worst in the last 24 hours. The MDASI-BT questionnaire is a valid and reliable 22-item measure of the severity of cancer- and treatment-related symptoms based on 6 criteria: affective, cognitive, focal neurologic deficits, treatment-related symptoms, general disease status, and gastrointestinal symptoms.24–26 Each of the care recipient’s symptoms was rated on an 11-point scale (0–10) to indicate its severity, with 0 being “not present” to 10 being “symptom was as bad as you can imagine it could be.”24 This instrument can be used to identify symptom occurrence throughout the disease trajectory and to evaluate interventions designed for symptom management. The MDASI-BT has established validity and reliability. Reported internal consistency (reliability) of the instrument is .91.24
Positive aspects of caregiving were assessed using 11 items on the Positive Aspects of Care scale, phrased as statements about the caregiver’s mental-affective state in relation to the caregiving experience. Each item began with the statement “Providing help to care recipient has…” followed by specific items such as “made me feel more useful.”27 Each item is rated on a scale from 0 (strongly disagree) to 4 (strongly agree). Higher scores indicate greater caregiver benefit. Reported reliability measured by Cronbach’s α is .89.27
Caregivers’ anxiety was measured using the Shortened Profile of Mood States (POMS)–Anxiety. The Shortened POMS-Anxiety consists of 3 items. Each item has 5 grading possibilities from 1 (never) to 5 (always). Caregivers were asked how often during the previous week they felt on edge, nervous, or tense. The original scale28 incorporated 65 adjectives rated on a 5-point Likert scale ranging from 1 (not at all) to 5 (extremely).29 Six subscales (depression, vigor, confusion, anxiety, anger, and fatigue) were derived. Our study used a shortened version of 3 items. A higher score indicates greater anxiety. Internal consistency reliability coefficients for the shortened 3-item version of Anxiety subscale were reported as .91 to .92.30 Validity for the POMS has been established using several other measures.
Caregivers’ spirituality was measured using the FACIT-Sp (The Functional Assessment of Chronic Illness Therapy–Spiritual Well-being Scale). FACIT-Sp (version 4) consists of 12 items. Each item has a rating scale score of 0 to 4 indicating the degree to which one agrees with the statements (0 = not at all, 1 = a little bit, 2 = somewhat, 3 = quite a bit, 4 = very much). The instrument comprises 2 subscales: one measuring a sense of meaning and peace and the other assessing the role of faith in illness.31 The FACIT-Sp is 1 of the most validated instruments for the assessment of a person’s perception of spirituality.32 The reported α coefficients for the total scale and the 2 subscales range from .81 to .88.31 Participants were required to indicate how true each statement had been for them during the previous 7 days.
Sociodemographic Characteristics. Several sociodemographic characteristics were included in the statistical analysis: age, gender, years of education, relationship of caregivers to the care recipients, and tumor type.
Statistical analyses were conducted using SAS for Windows (version 9.3; SAS Institute Inc, Cary, North Carolina). First, descriptive analyses of the study sample were performed. Correlation between the dependent and independent variables were analyzed. The Spearman correlation coefficient was used to examine the correlation between the main outcome (caregivers’ perceptions of care recipients’ suffering) and each item of the MDASI-BT (severity of symptoms) as well as the correlation among items of the MDASI-BT. Univariate analyses of measures were then conducted to identify potential predictors of perception of care recipient suffering. Finally, a multivariable linear regression model was built, including all predictors significant at P < .15 in univariate analyses. The statistical significance of individual regression coefficients was tested using the Wald χ2 statistic.
This analysis includes a total of 86 caregiver-care recipient dyads who completed follow-up assessment 4 months after diagnosis. The majority of caregivers were female (n = 59; 69%) and caring for spouses (n = 69; 80%). The average age of caregivers was 52.23 (SD, 12.7) years (range, 24–99 years); the average age of care recipients was 52.66 (SD, 14.6) years (range, 22–76 years). The caregivers had completed 14.55 (SD, 2.6) years of education on average (range, 8–23 years); the care recipients had completed 15.2 (SD, 3.0) years of education on average (range, 12–22 years). The majority of care recipients were diagnosed with a glioblastoma (n = 49; 57%) (Table 1). Other dyad characteristics are presented in Table 2.
Suffering at 4 months after diagnosis, 37% of caregivers reported that the patient was not suffering; 24% of caregivers rated the patient’s suffering as moderate (score of 3), whereas only 4% of caregivers rated the patient’s suffering as terrible (score of 6). The average score of perceived suffering was 2.63 (SD 1.56) (Table 3).
A strong correlation (Table 4) was found only between the perceived suffering of the care recipient and severity of weakness (rs = 0.67). This suggests that care recipients’ weakness is associated with caregiver reports of the care recipient’s suffering. Moderate correlations were found between perceived suffering and 3 cognitive symptoms: difficulty understanding (rs = 0.41), difficulty remembering (rs = 0.46), and difficulty concentrating (rs = 0.42); and between perceived suffering and a feeling of distress (rs = 0.4) and pain (rs = 0.41) (Table 4).
Correlations among symptoms that were strongly and moderately correlated (a correlation exceeding 0.4) with perceived suffering were examined. Strong correlations were found between difficulty understanding and difficulty remembering (0.69), difficulty understanding and difficulty concentrating (0.7), and difficulty remembering and difficulty concentrating (0.74). Thus, caregivers giving higher ratings of the severity of the care recipient’s difficulty understanding also provided higher ratings of the care recipient’s difficulty concentrating and other cognitive symptoms. Moderate correlations were found among the symptoms difficulty concentrating and feelings of distress (0.59), difficulty remembering and feelings of distress (0.51), feelings of distress and pain (0.46), and difficulty concentrating and pain (0.4). Other correlations were weak.
A multivariate model was constructed to evaluate the relationship between the continuous outcome variable of perceived suffering and each of 6 individual symptoms that were correlated (with a correlation exceeding 0.4) with perceived suffering. Other variables—potentially important predictors of perception of suffering—were identified from the univariate analyses of the 4-month measures (all predictors significant at P < .15 in univariate analyses). The dependent variable was the caregiver’s rating of the care recipient’s suffering over the previous week.
In all the models tested (Table 5), the only variables that significantly affected perceived suffering were individual symptoms. While controlling for age, years of education, tumor type, being a spousal caregiver, spiritual well-being (FACIT), and anxiety (POMS), caregiver’s perception of the care recipient’s suffering at the 4-month point was predicted by such symptoms as difficulty understanding, difficulty remembering, difficulty concentrating, feeling of distress, weakness, and pain. Caregivers who reported perceiving higher levels of the previously mentioned symptoms tended to report higher levels of perceived suffering in the care recipient. In the models, the variables accounted for 22.8% to 43.71% of the variance of the outcome variable (suffering).
Four items (severity of seizures, severity of dry mouth, severity of change in appearance, severity of disruptions in bowel movement patterns) from the MDASI-BT were excluded, and the total score was considered as 1 of the predictors (designated “total symptoms”). The 4 items were excluded on the basis of weak correlations, a low incidence rate, and expert panel discussion. Other regression models were developed to examine predictors of the continuous outcome variable caregivers’ perceptions of the care recipients’ suffering and predictors of the following psychological outcomes: depression and caregiver burden due to schedule at 4 months, while controlling for age, years of education, tumor type, being a spousal caregiver, spiritual well-being (FACIT), and anxiety (POMS).
Four months after the patient’s diagnosis, total symptoms of MDASI-BT were the single predictor of perceived suffering (P < .0001). The total symptoms score (MDASI-BT) represents the severity of the symptoms. The higher the total score, the more severe the patient’s symptoms. The model accounted for 36.56% (F = 4.68; P = .0001) of the variance in the outcome variable suffering (model A).
Caregiver depressive symptoms were predicted by the caregiver’s age (P = .0223) and total symptoms (P = .0067) (model B). Caregivers who were younger had a tendency to report more depressive symptoms. Another predictor of caregiver depression was total symptoms; the higher the caregiver’s perception of the severity of the care recipient’s symptoms, the more depressive symptoms they tended to report.
Being a spousal caregiver (P = .0054) and caregiver perception of care recipient suffering (P = .0052) were the main predictors of burden related to schedule (model C). Caregivers who were a spouse to the care recipient and those who reported higher perception of the care recipient’s suffering were more likely to report higher levels of burden due to schedule (Table 6).
Persons with PMBTs have a specific treatment and disease trajectory. Having a brain tumor subjects the person to the rigors of a cancer and its treatment (eg, adverse effects from chemotherapy and radiation) but often causes significant neurologic deficits that interfere with daily life and function.33 The presence of complications in patients with advanced cancer as well as neuropsychological and neurologic dysfunction, such as memory problems, affects the family caregivers of persons with PMBT who are likely to perceive their loved one’s suffering as quite distressing. The main purpose of this study was to determine the predictors of caregivers’ perceptions of the suffering of persons with PMBT and how perceived suffering relates to caregivers’ burden and depression.
Care Recipient Symptoms as the Main Predictors of Caregiver Perception of Suffering
Our study contributes a number of interesting findings regarding the care recipient’s symptoms and the caregiver’s perception of suffering. Care recipients’ symptoms are the main predictors of caregiver perception of care recipient suffering. The results of this study showed moderate correlations between caregiver perceptions of the care recipient’s degree of suffering and 3 cognitive symptoms (difficulty understanding, difficulty remembering, and difficulty concentrating) and between perceived suffering and a feeling of distress and pain. Our results showed the dominance of the physical component of perceived suffering in persons with a PMBT.
Wilson et al8 found that although suffering had a multidimensional character, the physical component was uppermost for many participants with advanced cancer at the end of life. Hebert et al34 characterized patient suffering as a constellation of physical, psychosocial, and spiritual signs and symptoms. Little is known about what contributes to suffering in patients, about the variability in its display to caregivers, or about the factors that contribute to the accurate or inaccurate assessment of suffering by caregivers.34 Of all care recipient symptoms in our study, neurologic symptoms seemed to be the most important in predicting caregiver perception of care recipient suffering. In addition to neurologic symptoms, pain and weakness were also important in predicting perceived suffering. Although symptoms are clearly an important component of patient suffering, they do not constitute the whole suffering.34 A lower percentage of variance in all our models indicates that there are other variables that can affect and predict suffering of patients with PMBT.
Perceived Suffering and Caregivers’ Burden and Depression
The perception of suffering causes distress.35 Our results confirm that caregivers’ perception of the patient’s degree of suffering is the main predictor of caregiver burden at 4 months following diagnosis. Another predictor of caregivers’ burden was being a spousal caregiver. Given the relationship between patient suffering and caregiver well-being, it is reasonable to expect that, to the extent that these symptoms are successfully treated, caregiver well-being should improve.34
The hypothesis that caregivers’ perception of the patient’s degree of suffering is the main predictor of caregiver depression was not confirmed. The caregiver’s age and total symptoms (MDASI-BT) were the main predictors of caregiver depression. Neurologic dysfunction in the care recipient forces caregivers of persons with a PMBT to face stressors similar to those of caregivers of persons with dementia, a subset of caregivers who have been shown to suffer from negative psychobehavioral responses such as depressive symptoms, anxiety, and difficulty sleeping.10 According to Covinsky et al,16 there is strong evidence that difficult patient behaviors such as anger and aggressiveness influence caregiver depression, and behavioral manifestations of dementia may be more influential than the degree of cognitive impairment. Schulz et al7 assessed the relationship between suffering in persons with dementia, caregiver depression, and antidepressant medication use in 1222 dementia patients and their caregivers and assessed the prevalence of 2 types of patient suffering, emotional and existential distress. Each aspect of perceived suffering independently contributed to caregiver depression. Their study was the first using a large sample to show that perceived patient suffering independently contributed to caregiver depression and medication use.7 The variance in results in our study suggests that analyses should be conducted using a larger sample. Furthermore, Schulz et al,12 in their study of older individuals, showed that perceived care recipient suffering is associated with caregiver depression and burden, after controlling for the physical and cognitive functioning of the care recipient. They reported that caregivers may overestimate the magnitude of suffering of their care recipient.12 In a study of 109 caregivers of patients with heart failure, caregivers’ poor functional status, overall perception of caregiving distress, and perceived control were associated with depressive symptoms.36
Our study provides evidence that the perception of suffering may influence caregiver burden due to schedule. Suffering evokes compassion and respect for someone who bears it with dignity—and intimidates as well.4 While being able to recognize and respond to the outward signs of a person’s distress, we cannot actually enter into the realm of their personal experience of suffering.6 We need to better understand moderating variables such as the level of contact, intimacy, and attachment between patient and caregiver that likely contribute to patient suffering and caregiver well-being. Most important are studies that seek to identify methods for diminishing or eliminating suffering.
Counseling interventions that empower the caregiver to address the suffering of the patient and/or help caregivers appraise their care recipients’ suffering as less threatening should be beneficial. Clinicians can play an important role in the process by monitoring the suffering of the patient, observing its impact on the caregiver, and intervening to address patient suffering and/or caregiver’s concerns about patient suffering.7
The study has several limitations. The first is its small sample size, which limits generalizability. The second limitation arises from the use of proxy accounts of suffering, given the care recipients’ neurologic dysfunction. It is possible that caregivers overestimate the magnitude of suffering of their care recipients.12 The third limitation is associated with rating the care recipients’ suffering during the week prior to data collection, which opens up the possibility of faulty recall. The fourth limitation of the study is that caregivers’ perception of care recipients’ suffering was measured by a single item. Internal consistency cannot be computed for a single-item measure. A single-item instrument provides clinicians with limited information about caregivers’ perception of care recipients’ suffering, but it can serve as a screening tool. Future research should focus on developing a multi-item instrument measuring perception of suffering in patients with PMBT.
In summary, our study provides initial evidence of the role of care recipients’ symptoms in perceived suffering. These results suggest that care recipient symptoms (mostly cognitive symptoms) play an important role in caregivers’ perception of the care recipients’ suffering. Identifying specific predictors such as these provides meaningful information for healthcare providers in the field of neuro-oncology and neurosurgery. Specifically targeted interventions can relieve symptoms of patients with PMBT as well as their caregivers’ distress. Interventions that focus on the relief of patients’ cognitive symptoms can be seen as a way to improve caregiver well-being.
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