Copyright B 2016 Wolters Kluwer Health, Inc. All rights reserved.
Kwo-Chen Lee, PhD, RN Jia-Jean Yiin, MD, PhD Yann-Fen Chao, PhD, RN
Development of an Experience-Based Caregiver Burden Scale in Advanced Cancer K E Y
W O R D S
Background: Family caregivers complete caregiving tasks but may not explore
Advanced cancer
their own feelings about their caregiving experience. Objectives: The objectives of
Burden assessment
this study were to develop an experience-based caregiving burden scale for
Depression
caregivers of patients with advanced cancer and to estimate its predictive value for
Family caregiver
depression. Methods: The instrument was first systematically constructed on the basis of data obtained from detailed interviews of 12 caregivers. Then, 134 caregivers completed the questionnaire as a field test to estimate the psychometric properties of the developed tool. Results: We achieved a 13-item Caregiver Burden Scale (CBS) with 3 dimensions: health impact, role competence, and resource and growth. The construct validity, criterion-related validity, and internal consistency reliability of the CBS were satisfactory. A CBS score higher than 25.5, or health impact subscale score higher than 10.5, or role performance score higher than 7.5 indicated significant depression and the need for assistance from healthcare providers. Conclusion: The CBS has adequate reliability and validity to assess the burden experienced by caregivers of patients with advanced cancer. It was also predictive for significant depression. Implication for Practice: Nurses may use the CBS to provide timely assistance to family caregivers during their caregiving for a patient with advanced-stage cancer.
ancer has been the leading cause of death in Taiwan for 30 years.1 The symptoms and dependence on others for assistance with activities of daily living (ADLs) increase in patients with advanced-stage cancer as
C
they approach death. As a result, patients with advanced-stage cancer often require constant care from family members. Caregiving is an important and integral element of gratitude toward family members2; however, family caregivers (FCs) of
Author Affiliations: School of Nursing and Department of Nursing, China Medical University Hospital (Dr Lee); and Department of Neurosurgery, Neurological Institute, Taichung Veteran General Hospital (Dr Yiin), Taichung; and Department of Nursing, Mackay Medical College, New Taipei City (Dr Chao), Taiwan. The authors have no funding or conflicts of interest to disclose.
Correspondence: Yann-Fen Chao, PhD, RN, Department of Nursing, Mackay Medical College, No. 46, Sec. 3, Jhong-Jheng Rd, Sanzhi Dist, New Taipei City, 252, Taiwan ([email protected]). Accepted for publication December 1, 2014. DOI: 10.1097/NCC.0000000000000230
12 n Cancer NursingTM, Vol. 39, No. 1, 2016 Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
Lee et al
patients with advanced-stage cancer often feel overworked because of the heavy responsibilities associated with managing the patients’ symptoms,3 providing emotional support,4 and assisting with care-related tasks.5 The heavy and diversified work of caring affects the physical health,6 emotions,7 social interactions,8 and financial status9 of FCs. This may lead to health crises for FCs, such as cardiovascular problems10 and an increased mortality for FCs.11 Caregiver burden refers to the physiological, mental, social, economic, and emotional strains that caregivers experience while providing continuous care to patients or family members.12 Montgomery et al13 defined an objective burden as a disruption to family life that is potentially verifiable and observable, such as specific caring tasks, whereas a subjective burden is related to the caregivers’ experiences with the physical, emotional, social, or economic difficulties. When compared with caregivers of hospice noncancer patients, FCs who care for hospice cancer patients face more objective stressors and negative psychological and health effects.14 Family caregivers of patients with advanced-stage cancer are more vulnerable to physical symptoms and psychological distress because in addition to the demands of caregiving and other responsibilities, they also experience the demands of medical decision making, the patients’ eventual death, and their own loss and mourning. In previous studies, FCs were described as having poorer physical health and lower quality of life and higher perceived burden when caring for patients with advanced cancer.15,16 However, FCs traditionally take on this role unconditionally, without complaint or resistance.17 Moreover, they often neglect their own needs and feelings to focus completely on their loved ones who are dying. Despite the stress of caregiving, FCs also have positive feelings of attachment, reward, responsibility, and pride.18 However, caregivers of patients with end-stage cancer often experience symptoms of depression.12,19 Caregivers’ depression is a state of depressed mood caused by the stress of heavy caregiving, and its symptoms include feelings of loneliness, isolation, fearfulness, and agitation.12 Furthermore, the caregivers’ depressive symptoms often increase as the patients approach death.19 Previous studies indicated the caregivers’ depression is related to the patients’ characteristics, such as daily functioning12,20 and symptoms,12,19 as well as the caregivers’ characteristic, such as health status,19,20 confidence in providing caregiving,19 and social support.19 The association between caregiver burden and depressive symptoms is well documented12,19: caregiver burden is mediated by the relationship between the caregiving demands and the caregivers’ depression.20,21 Lazarus and Folkman’s22 stress model provides a conceptual framework for the cancer caregiving experience. Illness-related factors of a patient with advanced-stage cancer and the related caregiving demands are measurable stressors for the FC. Caregiver burden accumulates through the constant exposure to caregiving demands and can affect the caregivers’ well-being, resulting in poor physical health (ie, cardiovascular disease), mental health problems (ie, depression), and a poor quality of life.23,24 In reviewing the available instruments that assess the burdens faced by FCs of patients with advanced-stage cancer, we found that only a few of these instruments incorporated firsthand accounts of the caregivers’ experience with the patients,25Y27 and certain items do not reflect the demands or potential stressors of FCs caring for terminally ill cancer patients. In addition, most of
Experience-Based Caregiver Burden Scale
these instruments focus only on subjective topics,28 which is insufficient for assessing the total experience of the caregiving burden among FCs for patients with advanced-stage cancer. Furthermore, those instruments are long questionnaires that typically include at least 20 items,25,26,28 which may be too burdensome for FCs. Finally, those instruments without cutoff values to discern level of burden may not be adequately useful in clinical practice.26,28,29 An assessment tool that comprehensively monitors caregiver burden is required to deliver adequate and effective support to FCs of patients with advanced-stage cancer. Therefore, this study aimed to develop an assessment scale of caregiver burden and could predict level of depressive symptoms (and provide a cut-off value) in FCs of patients with advanced-stage cancer.
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Methods
Participants and Design This study was conducted in 2 phases. In the first phase, we generated items to include in the instrument and then estimated their content validity. In the second phase, we estimated the instrument’s construct validity, internal consistency/reliability, and other psychometric properties. The first phase involved qualitative interviews that aimed to define the FCs’ experiences, which were used to generate measurement items for the Caregiver Burden Scale (CBS). Eight experts and 5 FC volunteers reviewed the instrument items to establish their content and face validity. The second phase involved a cross-sectional study with convenience sampling that tested the instrument’s construct validity, reliability, and cutoff values. We performed convenience sampling in Northern Taiwan with participants who met the following eligibility criteria: (1) relatives of terminal cancer patients diagnosed by the patients’ physician, (2) identified by the patients as their primary FCs, and (3) willing and able to participate and communicate with data collectors.
Item Generation In phase 1, we developed and designed the CBS items from participant responses provided in qualitative interviews conducted using a semistructured interview format. The interview included the following questions: (1) ‘‘Could you talk about your difficult experience since the doctor told you thatI was at an advanced stage of cancer?’’; (2) ‘‘How did these changes and burden affect your life?’’; (3) ‘‘Did you have any emotional reactions or feelings?’’; (4) ‘‘How are you doing with your family?’’; (5) ‘‘How is it when you are interacting with relatives or friends?’’; and (6) ‘‘How is your financial status now?’’ We adopted the standards of credibility, fit, auditability, and conformability.30 Of the 15 FCs referred to the study, 3 refused to participate because they were not interested or had personal health issues; 12 FCs eventually completed phase 1. The 15 patients who were being cared for by these FCs were 42 to 84 years (mean, 62 years) and had been diagnosed with cancer at least 6 to 36 months before the study (mean, 12.6 months). Among these 15 patients, 10 were those unable to sit out of bed, 2 required assistance for ADLs, and 3 required partial assistance for ambulation. Ten FCs were women Cancer NursingTM, Vol. 39, No. 1, 2016
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
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aged 42 to 71 years (mean, 56 years) who were either the patients’ wife or child. The average duration of care was 6 to 32 months (mean, 12.5 months). Eleven FCs lived with and thought that they understood the patient; 8 provided daily care for 6 to 24 hours, whereas 4 provided daily care for 8 to 12 hours. The interview responses could be categorized under the following 7 topics: (a) physical exhaustion, (b) feelings of dislike, difficulty, and confusion regarding care, (c) playing multiple roles, (d ) reestablishment of supportive social interactions, (e) self-growth and family growth, (f ) lack of control over medical resources, and (g) financial difficulty. Therefore, we used this initial item pool to generate 58 potential items for the CBS.
Content Validity Assessment To establish content validity, we reviewed the CBS items using the Delphi technique. The review was performed by 8 palliative or cancer care experts who used a 4-point Likert-type scale to evaluate the clarity of each statement and its relevance to the concept of caregiver burden. We deleted items that scored less than 2 points and corrected items that scored 3 points. Several items were removed, whereas other items were split into 2 following a pilot study with health professionals. This resulted in a final 20-item scale that was ready for field testing (Table 1). We provided written instructions and administered the 20-item CBS. Participants were instructed to complete the 20-item CBS by responding to each item based on their feelings over the past week using a 5-point Likert-type scale (1 = rarely, 5 = always). The CBS was also administered to 5 FCs of patients with advanced-stage cancer. Family caregivers found the items easy or very easy to understand, and, on average, each participant completed the scale within 5 minutes with no missing answers.
In phase 2, we recruited a convenience sample of FCs from a Medical University Hospital in North Taiwan to estimate the instrument’s psychometric properties. The eligibility criteria for recruitment were similar to those for phase 1. First, we screened potential participants, explained the purpose of the study, and obtained written consent. Next, we assessed each participant in a face-to-face interview. Finally, using a rationale that was conceptual23 and empirical,24 we selected 3 variables that best described FCs’ burden: the caregiving demands, Caregiver Reaction Assessment (CRA), and Center for Epidemiologic Studies Depression Scale (CES-D). 1. The caregiving demands refer to the time spent on caregiving, number of caregiving-related tasks performed, and level of care provided each day, which were quantified by the amount of assistance provided for daily care (eg, personal care), homemaking (eg, cleaning house, cooking), transportation (eg, hospital and shopping transportation), and healthcare (eg, symptom control, medication assistance).31 Family caregivers were asked to report the amount of assistance they provided in each of these 4 categories using a 4-point scale that ranged from ‘‘none at all’’ (1) to ‘‘a lot’’ (4). These 4 items were summed for a composite score (4Y16) that quantified the total amount of assistance provided, with higher scores indicating more taxing caregiving tasks. 2. The CRA26 measures 5 dimensions of caregiver burden: schedule, family support, health, self-esteem, and finances. Caregiver Reaction Assessment comprises 24 questions that are answered with a 5-point Likert scale, with higher scores indicating a greater caregiver burden. Caregiver Reaction Assessment has good reliability and validity32 and had a Cronbach’s ! of .89 in this study.
Table 1 & The Original 20-Item Caregiver Burden Scale Mean SD Item Scale r ! If Deleted
Item Statement After starting to take care of my sick family member, 1 I began to have pain problems. 2 I began to have sleep problems. 3 I began to feel fatigue. 4b I experienced discomfort, although I do not feel it serious enough to require medical care. 5b I was diagnosed with emotional problems. 6b I frequently experienced anxiety. 7b I became angry very often. 8 I experienced remorse frequently. 9 I began to feel depressed. 10 I have difficulties handling the disease symptoms of the patient. 11b I have difficulty in taking care of my sick family member’s negative emotions (depression, depression, anger, etc). 12 I experience difficulties in taking care of my sick family member’s daily life. 13 In addition to taking care of the patient, I take over his/her job responsibility. 14b I am nervous of not giving my sick family member good care. 15 My family has financial difficulties. 16a I can (not) obtain medical resources as I want. 17a I can (not) receive good medical services. 18b I can attend social activities as I want. 19a My self-development was (not) improved. 20a I found it is (not) helpful to me to maintain health.
2.6 3.4 3.0 2.9 2.5 1.7 1.3 2.6 2.6 2.4 2.1
1.5 1.2 1.2 1.3 1.2 1.2 0.8 1.1 1.0 1.4 1.4
0.37 0.54 0.64 0.25 0.26 0.29 0.23 0.41 0.69 0.48 0.29
.817 .807 .802 .823 .822 .820 .821 .814 .802 .810 .821
1.7 1.4 2.2 1.6 1.9 2.3 1.3 1.6 1.7
1.0 0.9 1.4 1.0 1.3 1.3 0.7 1.2 1.2
0.45 0.36 0.30 0.55 0.50 0.38 0.22 0.36 0.41
.812 .817 .820 .809 .809 .816 .822 .816 .814
Scale ! = .822; values were scored as follows: 1, rare; 2, occasional; 3, sometimes; 4, often; and 5, always. a Scored in reverse direction. b Correlation with scale r G 0.31, scale ! = .828 if deleted.
14 n Cancer NursingTM, Vol. 39, No. 1, 2016 Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
Lee et al
3. The CES-D is a 20-item scale that examines 4 domains: depressive emotions, positive feelings, physiological symptoms, and interpersonal issues.33 The total scores ranges from 0 to 60, with higher scores indicating more severe depressive symptoms; CES-D scores of 16 or greater indicate clinical depressive symptoms.33 Cronbach’s ! was .80 in this study.
Ethical Considerations The institutional review board of our hospital approved this research study (TMUH-05-08-02), and we obtained informed consent from all patients prior to data collection.
Statistical Analysis We used the SPSS 17.0 package (SPSS Inc, Chicago, Illinois) to perform data analyses in the scale verification stage; we report the statistical results by frequency, percentage, distribution, mean, and SD. Exploratory factor analysis with varimax rotation and Pearson correlation coefficient were used to examine scale validity. Cronbach’s ! was used to evaluate reliability. A receiver operating characteristic curve34 was used to assess the significance of CBS cutoff scores, and logistic regression was applied to evaluate the odds ratio of risk of CBS scores above the assigned cutoff points. P G .05 was considered statistically significant. n
Results
We recruited 154 study participants, and 134 completed the questionnaire; 20 (12.9%) refused to participate because of a lack of interest or time. Among the 134 patients for whom these 134 participants were providing caregiving, 92 were those unable to sit out of bed, 36 required assistance for ADLs, and 6 required partial assistance for ambulation. The demographic characteristics did not differ between patients who participated in the study and those who did not. The mean age of FCs was 57.7 T 14.7 years, most were women (51%), and most were patients’ spouses (59.7%). On average, FCs spent 14.6 T 5.8 h/d on caregiving tasks. Although FCs showed mild depressive symptoms with the CES-D assessment (mean score, 14.4 T 4.7), their reactions varied widely among the 5 factors of the CRA (Table 2).
Item Analysis and Exploratory Factor Analysis The 20 CBS items were examined using a Pearson correlation statistic to identify interitem and total-item correlations. First, we deleted 7 items that had an item-scale correlation coefficient of 0.31 or less (Table 1), resulting in a 13-item CBS that met the assumptions of factor analysis. The # 2 value in the Bartlett test of sphericity was 952.3 (P G .001), and the Kaiser-Meyer-Olkin correlation coefficient was 0.804, indicating the existence of common factors among the 13 items.35 The skew of the data was 0.37 (SD, 0.21), kurtosis was j0.76 (SD, 0.41), and the Z value from the Kolmogorov-Smirnov test was 1.38 (P 9 .05), which indicated the data were normally distributed and appropriate for factor analysis. We performed an exploratory factor analysis using a principal component analysis with varimax rotation to retrieve factors with an
Experience-Based Caregiver Burden Scale
Table 2 & Demographic and Caregiver Burden Variables (n = 134)
Variable
n
%
Female Relationship with the patient Spouse Child Other Living with the patient Caregiving experience Q1 y G1 y Education level Elementary Junior high High school College or above
70
51
79 46 12 113
59 33 8 85
92 42
69 31
12 21 53 48
9 16 39 36
Mean
SD
57.7 29.0 11.6 8.2 9.1
14.7 8.87 3.8 3.3 5.0
14.6 11.02 55.4 19.5 10.0 8.3 5.6 8.8 14.4 84.0 50.0
5.8 2.53 13.76 4.7 3.3 3.2 3.8 2.4 4.7 62.7 37.3
Age, y CBS (13Y65) Health impact (4Y20) Role impact (4Y20) Resource and growth (5Y25) Caregiving demands Daily time spent on caregiving (h) Caregiving tasks (4Y16) CRA (24Y120) Impact on schedule (5Y25) Impact on health (4Y20) Impact on finances (3Y15) Impact on family support (5Y25) Impact on self-esteem (7Y35) CES-D (0Y60) G16 Q16
Abbreviations: CBS, Caregiver Burden Scale; CES-D, Center for Epidemiologic Studies Depression Scale; CRA, Caregiver Reaction Assessment.
eigenvalue of greater than 1. After orthogonal rotation, 3 factors had a squared factor loading greater than 1 and explained 67.3% of the total variance. Based on their factor loadings, these 3 factors were termed ‘‘health impact,’’ ‘‘role competence,’’ and ‘‘resource and growth’’ (Table 3). Five items including health impact, remorse, and financial difficulties were considered to be subjective, and 6 items including dealing with patient’s symptoms, supporting daily functions of the patient, taking responsibility, and lacking medical resources were considered to be objective, and 2 items including selfdevelopment and health maintenance were considered to be positive experiences. These 13 questions had response options of a 5-point Likert scale; thus, the total CBS scores ranged from 13 to 65, with higher scores indicating a greater caregiver burden.
Criterion-Related Validity Table 4 shows the relationships among caregiving demands and the CRA scores as determined by Pearson correlation coefficients. The CBS was significantly correlated with caregiving demands (caregiving tasks, r = 0.42; P G .001; time spent on caregiving, Cancer NursingTM, Vol. 39, No. 1, 2016
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Table 3 & Factor Structure and Reliability of the Revised Caregiver Burden Scale Factor Loading Item No.
Item Content
Health impact 1 After starting to take care of the patient, I began to have pain problems. 2 After starting to take care of the patient, I began to have sleep problems. 3 After starting to take care of the patient, I began to feel fatigue. 9 After starting to take care of the patient, I began to feel depressed. Role competence 8 I experienced remorse frequently. 10 I have difficulties handling the disease symptoms of the patient. 12 I experience difficulties in taking care of my ill family’s daily life. 13 In addition to taking care of the patient, I take over his/her job responsibility. Resource and growth 15 My family has financial difficulties. 16a I can (not) obtain medical resources as I want. 17a I can (not) receive good medical services. 19a Taking care of my ill family (not) enhances self-development. 20a Taking care of my ill family is (not) helpful to me to maintain health. Total CBS score (13Y65)
1
2
3
0.17 0.11 0.46 0.31
0.67 0.88 0.75 0.64
0.30 0.11 0.06 0.41
0.27 0.01 0.16 0.65
0.42 0.30 0.08 0.06
0.68 0.67 0.72 0.71
0.65 0.88 0.76 0.89 0.91
0.11 0.19 0.01 0.08 0.03
0.37 0.09 0.07 0.11 0.09
Reliability Cronbach’s ! 0.79
0.72
0.89
0.83
Principal component analysis with varimax rotation for exploratory factor analysis. Rating scale: 1, rare; 2, occasional; 3, sometimes; 4, often; 5, always. a Questions scored in reverse order.
r = 0.41, P G .001), and all CRA component factors (r = 0.21Y0.53) reported by FCs. The health impact component of the CBS correlated significantly with all CRA subscales, except the esteem component factor. The role competence component of CBS also correlated significantly with health impact, schedule impact, and financial distress.
Reliability The internal consistency of the 13-item CBS (Cronbach’s !) was .83. The ! values for the health impact, role competence, and the resource and growth subscales were .79, .72, and .89, respectively (Table 3).
characteristic curve analysis of the optimal cutoff scores for the CBS and its subscales, along with the sensitivity, specificity, and overall correct rate for each cutoff point, is presented in Table 5. We used a logistic regression to examine the risk of developing depression in subjects who exceeded the cutoff values (Table 6). Family caregivers with a CBS score greater than 26 had a 13.9Ytimes greater risk of developing depression. Participants with a health impact subscale score of greater than 11 had a 17.1-times greater risk of developing depression, and those who also had a role competence score of greater than 8 had a 52.03-times greater risk of developing depression (12.1 4.3). The Figure illustrates the accumulative risk of significant depression at various multivariate levels.
Discussion
CBS Cutoff Score for Depression
n
In the present study, we considered a CES-D cutoff score of 16 or greater as indicative of depression. The receiver operating
We developed an experience-based scale for measuring the burden that FCs experience while caring for patients with
Table 4 & The Correlation of Component Factors with Other Measures of the Caregiver Burden Scale Health Impact
Role Competence
Resource and Growth
Total CBS
0.37a 0.29b 0.65a
0.29b 0.23b 0.50a
0.27b 0.37a 0.35a
0.42a 0.41a 0.67a
0.58a 0.51a 0.35a 0.20b 0.10
0.17b 0.32a 0.31a j0.09 0.02
0.38a 0.33a 0.34a 0.28a 0.36a
0.53a 0.53a 0.46a 0.21b 0.26a
Caregiving demands Spent times on caregiving CES-D CRA Impact on health Impact on schedule Impact on finance Impact on family support Impact on self-esteem
Abbreviations: CBS, Caregiver Burden Scale; CES-D, Center for Epidemiologic Studies Depression Scale; CRA, Caregiver Reaction Assessment. Values presented in the table are correlation coefficients. a P G .001. b P G .05.
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Lee et al
Table 5 & Predictive Values of CBS and Its Subscales for Depression The predictive power of CBS scores by receiver operating characteristic curve
Total of CBS Health impact Role competence Resource and growth
Area Under Curve
Cutoff Point
Sensitivity, %
Specificity, %
Overall Correct Rate
0.84 0.86 0.76 0.64
25.5 10.5 7.5 6.5
90% 90% 78% 70%
61% 66% 77% 54%
71.7% 73.6% 70.9% 59.7%
Abbreviation: CBS, Caregiver Burden Scale.
However, we also thought that examining the test-retest reliability would be inappropriate, given that FCs were experiencing considerable change in burden and emotional consequences. Nevertheless, the psychometric evaluation indicated the CBS had acceptable validity and reliability for assessing the intensity of caregiver burden in the context of advanced-stage cancer. Compared with other instruments that examine caregiver burden during the palliative stage, the 13-item CBS is shorter than the CRA,26 the Appraisal of Caregiving Scale,28 Zarit Caregiver Burden Interview 22,38 and the CBS EOLC (end-of-life care).29 The CBS includes both negative and positive caregiving experiences and is more comprehensive than the CBS EOLC, which was developed using an end-of-life population. In this study, the average time required to complete the CBS was less than 5 minutes, making it suitable for FCs of patients with advanced-stage cancer as they have limited time available and high responsibility levels. We found that a total CBS score greater than 26, a health subscale score greater than 11, and a role subscale score greater than 8 predicted significant depressive symptoms. The resource and growth subscale yielded a nonsignificant predictive power (Table 5), but the health and role subscale scores provided better prediction than did the total CBS. These findings are consistent with those of a previous study that indicated caregivers were more susceptible to depressive symptoms if they had experienced higher health impact and disruptions in their schedules.19 The health impact subscale examines 4 potential health concerns: pain, sleep, fatigue, and depression (Table 3). The mean value for each problem was 2.6 to 3.4 (mean, 2.9) on a scale of 1 to 5 (Table 1). In other words, caregivers of patients with advancedstage cancer occasionally experienced these 4 problems, and an
advanced-stage cancer. The newly developed instrument, which is based on the stress model of the FC experience,23 aims to identify stress assessments (caregiver burden) and to predict the impact of caregiving on the FCs mental well-being (depressive symptoms) within the context of advanced-stage cancer. The CBS was developed through in-depth interviews with 12 FCs of patients with end-stage cancer, and its psychometric properties were verified with a sample of 134 FCs. For valid results, Gorsuch36 recommended that there should be at least 100 participants with a minimum response-to-item ratio of 5; the ratio for the final sample size in our study was 10.3 and therefore adequate. In addition, the communality of CBS was 0.8 and higher than the 0.6 criterion.37 Therefore, we concluded that our newly developed CBS had adequate content validity. Our exploratory factorial analysis performed with a principal component analysis supported a 3-dimensional CBS structure, comprising health impact, role competence, and resource and growth. Thus, CBS is a multidimensional assessment tool that evaluates both positive (resource and growth) and negative (health impact and role competence) caregiving experiences. Caregiver Burden Scale was significantly correlated with the CES-D (r = 0.67; P G .001) and all CRA component factors. This result indicated the CBS had acceptable criterion-related validity. The Kaiser-Meyer-Olkin coefficient (0.80) for the CBS proves the instrument’s reliability by suggesting an intelligible and stable factorial structure. In addition, the CBS had acceptable internal consistency with a Cronbach’s ! of .83 for the total CBS and an ! range of .72 to .89 for the subscales. This study examined only internal consistency because changes in disease status and a high mortality rate are common among patients with end-stage cancer.
Table 6 & The Risk of Subjects With CBS Score Above Cutoff Value by Logistic Regression B
SE
Wald
df
P
Enter CBS only CBS Q 26 2.63 0.52 25.5 1 G.01 CBS, health impact, role competence, resource, and growth by forward Wald Step 1 Health impact Q11 2.84 0.52 29.3 1 G.01 Step 2 Health impact Q11 2.50 0.54 21.3 1 G.01 Role competence Q8 1.46 0.46 10.0 1 G.01 Health impact and role competence by enter Health impact Q11 2.42 0.55 19.5 1 G.01 Role competence Q8 1.44 0.46 9.7 1 G.01 Resource and growth Q7 0.35 0.47 .6 1 .46
Exp(B) (95% Confidence Interval)
Model Fitness
13.9 (5.0Y38.7)
139.9
17.1 (6.1Y47.7) 12.1 (4.2Y35.1) 4.3 (1.7Y10.7)
133.5 123.1
11.3 (3.8Y33.1) 4.3 (1.7Y10.5) 1.4 (.5Y3.5)
122.5
Present model fitness by j2 log likelihood value. Abbreviation: CBS, Caregiver Burden Scale.
Experience-Based Caregiver Burden Scale
Cancer NursingTM, Vol. 39, No. 1, 2016
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Implications for Nursing The 13-item CBS provides healthcare professionals with an accurate index for identifying FCs of patients with advancedstage cancer who are experiencing a significant burden and likely need help from a healthcare professional to prevent or manage depression or its symptoms. In addition, CBS health and role subscale items provide guidance for targeted intervention. With good validity and reliability, the CBS can assist healthcare professionals with assessing caregiver burden and provide suggestions for managing depressive symptoms.
References Figure n The cumulative risk of significant depression at several multivariate levels. increase to scores of 4 (often) or 5 (always) in any 1 of the 4 problems would increase the likelihood of significant depression by raising the health subscale score greater than 11. The role performance subscale also examined 4 items: remorse, difficulties in handling symptoms, difficulties in handling daily life, and taking responsibility (Table 3). The mean value for each problem was 1.4 to 2.6 (mean, 2.0) on a scale of 1 to 5 (Table 1), which resulted in total role subscale score of 8. Thus, healthcare professionals should aim to keep the score of any given item below 2 to decrease FCs’ risk of developing significant depression. The scale contents represent items that healthcare professionals must regularly assess and, when necessary, provide appropriate and timely intervention to prevent and manage depression among FCs of patients with advanced-stage cancer (Figure).
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Limitations
This study has several limitations. First, we used convenience sampling to select research participants. Second, we performed measurements only once; we did not follow up with FCs until the patients’ death. Therefore, further investigation is needed to confirm if these results can be generalized to other populations and determine the extent to which the CBS can detect depression in FCs throughout the patients’ dying process.
n
Conclusions
In the present study, we developed the CBS with data gathered during in-depth interviews with FCs of terminally ill cancer patients. The CBS demonstrated acceptable validity and reliability, and when combined with its health and role subscales, it provided cutoff points that could adequately predict depression and quantify FCs’ risk of developing depressive symptoms. Furthermore, the instrument is brief, comprising only 13 items and taking approximately 5 minutes to complete, making it a highly convenient tool for healthcare professionals to identify FCs who need assistance with depression.
1. Ministry of Health and Welfare. Statistics of Causes of Death, Volume I. 2003. http://www.mohw.gov.tw/cht/DOS/Statistic.aspx?f_list_no=312. Accessed May 2014. 2. Koh EK, Koh CK. Caring for older adults: the parables in Confucian texts. Nurs Sci Q. 2008;21(4):365Y368. 3. Weibull A, Olesen F, Neergaard MA. Caregivers’ active role in palliative home careVto encourage or to dissuade? A qualitative descriptive study. BMC Palliat Care. 2008;7:15. 4. McPherson CJ, Wilson KG, Lobchuk MM, Brajtman S. Self-perceived burden to others: patient and family caregiver correlates. J Palliat Care. 2007;23(3):135Y142. 5. Stenberg U, Ruland CM, Miaskowski C. Review of the literature on the effects of caring for a patient with cancer. Psychooncology. 2010;19(10):1013Y1025. 6. Tomarken A, Holland J, Schachter S, et al. Factors of complicated grief pre-death in caregivers of cancer patients. Psychooncology. 2008;17(2):105Y111. 7. Doorenbos AZ, Given B, Given CW, et al. The influence of end-of-life cancer care on caregivers. Res Nurs Health. 2007;30(3):270Y281. 8. Kalnins I. Caring for the terminally ill: experiences of Latvian family caregivers. Int Nurs Rev. 2006;53(2):129Y135. 9. Hanratty B, Holland P, Jacoby A, Whitehead M. Financial stress and strain associated with terminal cancerVa review of the evidence. Palliat Med. 2007;21(7):595Y607. 10. Vitaliano PP, Scanlan JM, Zhang J, et al. A path model of chronic stress, the metabolic syndrome, and coronary heart disease. Psychosom Med. 2002; 64(3):418Y435. 11. Boyle PJ, Feng Z, Raab GM. Does widowhood increase mortality risk?: Testing for selection effects by comparing causes of spousal death. Epidemiology. 2011;22(1):1Y5. 12. Given B, Wyatt G, Given C, et al. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum. 2004;31(6):1105Y1117. 13. Montgomery RJV, Gonyea JG, Hooyman NR. Caregiving and the experience of subjective and objective burden. Fam Relat. 1985;34(1):19Y26. 14. Haley WE, Han B, Narramore S, Schonwetter R. Family caregiving in hospice: effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J. 2001;15(4):1Y18. 15. Weitzner MA, McMillan SC, Jacobsen PB. Family caregiver quality of life: differences between curative and palliative cancer treatment settings. J Pain Symptom Manage. 1999;17(6):418Y428. 16. Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. Can Med Assoc J. 2004;170(12):1795Y1801. 17. Youn G, Knight BG, Jeong H-S, et al. Differences in familism value and caregiving outcomes among Korean, Korean American, and white American dementia caregivers. Psychol Aging. 1999;14(3):355Y364. 18. Melin-Johansson C, Axelsson B, Danielson E. Caregivers’ perceptions about terminally ill family members’ quality of life. Eur J Cancer Care. 2007;16(4):338Y345. 19. Tang ST, Chang W-C, Chen J-S, et al. Course and predictors of depressive symptoms among family caregivers of terminally ill cancer patients until their death. Psychooncology. 2013;22(6):1312Y1318. 20. Rhee YS, Yun YH, Park S, et al. Depression in family caregivers of cancer patients: the feeling of burden as a predictor of depression. J Clin Oncol. 2008;26(36):5890Y5895.
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21. Clyburn LD, Stones MJ, Hadjistavropoulos T, Tuokko H. Predicting caregiver burden and depression in Alzheimer’s disease. J Gerontol. 2000;55(1):S2YS13. 22. Lazarus R, Folkman S. Stress, Appraisal, and Coping. New York: Springer Co; 1984. 23. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress processVan overview of concepts and their measures. Gerontologist. 1990;30(5):583Y594. 24. Fletcher BS, Miaskowski C, Given B, Schumacher K. The cancer family caregiving experience: an updated and expanded conceptual model. Eur J Oncol Nurs. 2012;16(4):387Y398. 25. Zarit SH, Orr RD, Zarit JM. The hidden victims of Alzheimer’s Disease: Families Under Stress. New York: New York University Press; 1985. 26. Given CW, Given B, Stommel M, Collins C, King S, Franklin S. The Caregiver Reaction Assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15(4):271Y283. 27. Robinson BC. Validation of a caregiver strain index. J Gerontol. 1983;38(3): 344Y348. 28. Oberst MT, Thomas SE, Gass KA, Ward SE. Caregiving demands and appraisal of stress among family caregivers. Cancer Nurs. 1989;12(4):209Y215. 29. Dumont S, Fillion L, Gagnon P, Bernier N. A new tool to assess family caregivers’ burden during end-of-life care. J Palliat Care. 2008;24(3):151Y161.
Experience-Based Caregiver Burden Scale
30. Lincoln YS, Guba EG. Naturalistic Inquiry. Newbury Park, CA: Sage; 1985. 31. Emanuel EJ, Fairclough DL, Slutsman J, et al. Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients. N Engl J Med. 23 1999;341(13):956Y963. 32. Persson C, Wennman-Larsen A, Sundin K, et al. Assessing informal caregivers’ experiences: a qualitative and psychometric evaluation of the Caregiver Reaction Assessment Scale. Eur J Cancer Care. 2008;17(2):189Y199. 33. Radloff LS. The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Meas. 1977;1(3):385Y401. 34. Holloway I, Wheeler S. Qualitative Research for Nurses. 2nd ed. Oxford, UK: Blackwell Science; 2002. 35. Armitage P, Berry G, Matthews J. Statistical Methods in Medical Research. Vol 4. Oxford, UK: Blackwell Science; 2002. 36. Gorsuch RL. Factor Analysis. 2nd ed. Hillsdale, NJ: Lawrence; 1983. 37. MacCallum RC, Widaman KF, Zhang SB, et al. Sample size in factor analysis. Psychol Methods. 1999;4(1):84Y99. 38. Bachner YG, O’Rourke N. Reliability generalization of responses by care providers to the Zarit Burden Interview. Aging Ment Health. 2007;11(6): 678Y685.
Cancer NursingTM, Vol. 39, No. 1, 2016
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Kwo-Chen Lee, PhD, RN Jia-Jean Yiin, MD, PhD Yann-Fen Chao, PhD, RN
Development of an Experience-Based Caregiver Burden Scale in Advanced Cancer K E Y
W O R D S
Background: Family caregivers complete caregiving tasks but may not explore
Advanced cancer
their own feelings about their caregiving experience. Objectives: The objectives of
Burden assessment
this study were to develop an experience-based caregiving burden scale for
Depression
caregivers of patients with advanced cancer and to estimate its predictive value for
Family caregiver
depression. Methods: The instrument was first systematically constructed on the basis of data obtained from detailed interviews of 12 caregivers. Then, 134 caregivers completed the questionnaire as a field test to estimate the psychometric properties of the developed tool. Results: We achieved a 13-item Caregiver Burden Scale (CBS) with 3 dimensions: health impact, role competence, and resource and growth. The construct validity, criterion-related validity, and internal consistency reliability of the CBS were satisfactory. A CBS score higher than 25.5, or health impact subscale score higher than 10.5, or role performance score higher than 7.5 indicated significant depression and the need for assistance from healthcare providers. Conclusion: The CBS has adequate reliability and validity to assess the burden experienced by caregivers of patients with advanced cancer. It was also predictive for significant depression. Implication for Practice: Nurses may use the CBS to provide timely assistance to family caregivers during their caregiving for a patient with advanced-stage cancer.
ancer has been the leading cause of death in Taiwan for 30 years.1 The symptoms and dependence on others for assistance with activities of daily living (ADLs) increase in patients with advanced-stage cancer as
C
they approach death. As a result, patients with advanced-stage cancer often require constant care from family members. Caregiving is an important and integral element of gratitude toward family members2; however, family caregivers (FCs) of
Author Affiliations: School of Nursing and Department of Nursing, China Medical University Hospital (Dr Lee); and Department of Neurosurgery, Neurological Institute, Taichung Veteran General Hospital (Dr Yiin), Taichung; and Department of Nursing, Mackay Medical College, New Taipei City (Dr Chao), Taiwan. The authors have no funding or conflicts of interest to disclose.
Correspondence: Yann-Fen Chao, PhD, RN, Department of Nursing, Mackay Medical College, No. 46, Sec. 3, Jhong-Jheng Rd, Sanzhi Dist, New Taipei City, 252, Taiwan ([email protected]). Accepted for publication December 1, 2014. DOI: 10.1097/NCC.0000000000000230
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patients with advanced-stage cancer often feel overworked because of the heavy responsibilities associated with managing the patients’ symptoms,3 providing emotional support,4 and assisting with care-related tasks.5 The heavy and diversified work of caring affects the physical health,6 emotions,7 social interactions,8 and financial status9 of FCs. This may lead to health crises for FCs, such as cardiovascular problems10 and an increased mortality for FCs.11 Caregiver burden refers to the physiological, mental, social, economic, and emotional strains that caregivers experience while providing continuous care to patients or family members.12 Montgomery et al13 defined an objective burden as a disruption to family life that is potentially verifiable and observable, such as specific caring tasks, whereas a subjective burden is related to the caregivers’ experiences with the physical, emotional, social, or economic difficulties. When compared with caregivers of hospice noncancer patients, FCs who care for hospice cancer patients face more objective stressors and negative psychological and health effects.14 Family caregivers of patients with advanced-stage cancer are more vulnerable to physical symptoms and psychological distress because in addition to the demands of caregiving and other responsibilities, they also experience the demands of medical decision making, the patients’ eventual death, and their own loss and mourning. In previous studies, FCs were described as having poorer physical health and lower quality of life and higher perceived burden when caring for patients with advanced cancer.15,16 However, FCs traditionally take on this role unconditionally, without complaint or resistance.17 Moreover, they often neglect their own needs and feelings to focus completely on their loved ones who are dying. Despite the stress of caregiving, FCs also have positive feelings of attachment, reward, responsibility, and pride.18 However, caregivers of patients with end-stage cancer often experience symptoms of depression.12,19 Caregivers’ depression is a state of depressed mood caused by the stress of heavy caregiving, and its symptoms include feelings of loneliness, isolation, fearfulness, and agitation.12 Furthermore, the caregivers’ depressive symptoms often increase as the patients approach death.19 Previous studies indicated the caregivers’ depression is related to the patients’ characteristics, such as daily functioning12,20 and symptoms,12,19 as well as the caregivers’ characteristic, such as health status,19,20 confidence in providing caregiving,19 and social support.19 The association between caregiver burden and depressive symptoms is well documented12,19: caregiver burden is mediated by the relationship between the caregiving demands and the caregivers’ depression.20,21 Lazarus and Folkman’s22 stress model provides a conceptual framework for the cancer caregiving experience. Illness-related factors of a patient with advanced-stage cancer and the related caregiving demands are measurable stressors for the FC. Caregiver burden accumulates through the constant exposure to caregiving demands and can affect the caregivers’ well-being, resulting in poor physical health (ie, cardiovascular disease), mental health problems (ie, depression), and a poor quality of life.23,24 In reviewing the available instruments that assess the burdens faced by FCs of patients with advanced-stage cancer, we found that only a few of these instruments incorporated firsthand accounts of the caregivers’ experience with the patients,25Y27 and certain items do not reflect the demands or potential stressors of FCs caring for terminally ill cancer patients. In addition, most of
Experience-Based Caregiver Burden Scale
these instruments focus only on subjective topics,28 which is insufficient for assessing the total experience of the caregiving burden among FCs for patients with advanced-stage cancer. Furthermore, those instruments are long questionnaires that typically include at least 20 items,25,26,28 which may be too burdensome for FCs. Finally, those instruments without cutoff values to discern level of burden may not be adequately useful in clinical practice.26,28,29 An assessment tool that comprehensively monitors caregiver burden is required to deliver adequate and effective support to FCs of patients with advanced-stage cancer. Therefore, this study aimed to develop an assessment scale of caregiver burden and could predict level of depressive symptoms (and provide a cut-off value) in FCs of patients with advanced-stage cancer.
n
Methods
Participants and Design This study was conducted in 2 phases. In the first phase, we generated items to include in the instrument and then estimated their content validity. In the second phase, we estimated the instrument’s construct validity, internal consistency/reliability, and other psychometric properties. The first phase involved qualitative interviews that aimed to define the FCs’ experiences, which were used to generate measurement items for the Caregiver Burden Scale (CBS). Eight experts and 5 FC volunteers reviewed the instrument items to establish their content and face validity. The second phase involved a cross-sectional study with convenience sampling that tested the instrument’s construct validity, reliability, and cutoff values. We performed convenience sampling in Northern Taiwan with participants who met the following eligibility criteria: (1) relatives of terminal cancer patients diagnosed by the patients’ physician, (2) identified by the patients as their primary FCs, and (3) willing and able to participate and communicate with data collectors.
Item Generation In phase 1, we developed and designed the CBS items from participant responses provided in qualitative interviews conducted using a semistructured interview format. The interview included the following questions: (1) ‘‘Could you talk about your difficult experience since the doctor told you thatI was at an advanced stage of cancer?’’; (2) ‘‘How did these changes and burden affect your life?’’; (3) ‘‘Did you have any emotional reactions or feelings?’’; (4) ‘‘How are you doing with your family?’’; (5) ‘‘How is it when you are interacting with relatives or friends?’’; and (6) ‘‘How is your financial status now?’’ We adopted the standards of credibility, fit, auditability, and conformability.30 Of the 15 FCs referred to the study, 3 refused to participate because they were not interested or had personal health issues; 12 FCs eventually completed phase 1. The 15 patients who were being cared for by these FCs were 42 to 84 years (mean, 62 years) and had been diagnosed with cancer at least 6 to 36 months before the study (mean, 12.6 months). Among these 15 patients, 10 were those unable to sit out of bed, 2 required assistance for ADLs, and 3 required partial assistance for ambulation. Ten FCs were women Cancer NursingTM, Vol. 39, No. 1, 2016
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aged 42 to 71 years (mean, 56 years) who were either the patients’ wife or child. The average duration of care was 6 to 32 months (mean, 12.5 months). Eleven FCs lived with and thought that they understood the patient; 8 provided daily care for 6 to 24 hours, whereas 4 provided daily care for 8 to 12 hours. The interview responses could be categorized under the following 7 topics: (a) physical exhaustion, (b) feelings of dislike, difficulty, and confusion regarding care, (c) playing multiple roles, (d ) reestablishment of supportive social interactions, (e) self-growth and family growth, (f ) lack of control over medical resources, and (g) financial difficulty. Therefore, we used this initial item pool to generate 58 potential items for the CBS.
Content Validity Assessment To establish content validity, we reviewed the CBS items using the Delphi technique. The review was performed by 8 palliative or cancer care experts who used a 4-point Likert-type scale to evaluate the clarity of each statement and its relevance to the concept of caregiver burden. We deleted items that scored less than 2 points and corrected items that scored 3 points. Several items were removed, whereas other items were split into 2 following a pilot study with health professionals. This resulted in a final 20-item scale that was ready for field testing (Table 1). We provided written instructions and administered the 20-item CBS. Participants were instructed to complete the 20-item CBS by responding to each item based on their feelings over the past week using a 5-point Likert-type scale (1 = rarely, 5 = always). The CBS was also administered to 5 FCs of patients with advanced-stage cancer. Family caregivers found the items easy or very easy to understand, and, on average, each participant completed the scale within 5 minutes with no missing answers.
In phase 2, we recruited a convenience sample of FCs from a Medical University Hospital in North Taiwan to estimate the instrument’s psychometric properties. The eligibility criteria for recruitment were similar to those for phase 1. First, we screened potential participants, explained the purpose of the study, and obtained written consent. Next, we assessed each participant in a face-to-face interview. Finally, using a rationale that was conceptual23 and empirical,24 we selected 3 variables that best described FCs’ burden: the caregiving demands, Caregiver Reaction Assessment (CRA), and Center for Epidemiologic Studies Depression Scale (CES-D). 1. The caregiving demands refer to the time spent on caregiving, number of caregiving-related tasks performed, and level of care provided each day, which were quantified by the amount of assistance provided for daily care (eg, personal care), homemaking (eg, cleaning house, cooking), transportation (eg, hospital and shopping transportation), and healthcare (eg, symptom control, medication assistance).31 Family caregivers were asked to report the amount of assistance they provided in each of these 4 categories using a 4-point scale that ranged from ‘‘none at all’’ (1) to ‘‘a lot’’ (4). These 4 items were summed for a composite score (4Y16) that quantified the total amount of assistance provided, with higher scores indicating more taxing caregiving tasks. 2. The CRA26 measures 5 dimensions of caregiver burden: schedule, family support, health, self-esteem, and finances. Caregiver Reaction Assessment comprises 24 questions that are answered with a 5-point Likert scale, with higher scores indicating a greater caregiver burden. Caregiver Reaction Assessment has good reliability and validity32 and had a Cronbach’s ! of .89 in this study.
Table 1 & The Original 20-Item Caregiver Burden Scale Mean SD Item Scale r ! If Deleted
Item Statement After starting to take care of my sick family member, 1 I began to have pain problems. 2 I began to have sleep problems. 3 I began to feel fatigue. 4b I experienced discomfort, although I do not feel it serious enough to require medical care. 5b I was diagnosed with emotional problems. 6b I frequently experienced anxiety. 7b I became angry very often. 8 I experienced remorse frequently. 9 I began to feel depressed. 10 I have difficulties handling the disease symptoms of the patient. 11b I have difficulty in taking care of my sick family member’s negative emotions (depression, depression, anger, etc). 12 I experience difficulties in taking care of my sick family member’s daily life. 13 In addition to taking care of the patient, I take over his/her job responsibility. 14b I am nervous of not giving my sick family member good care. 15 My family has financial difficulties. 16a I can (not) obtain medical resources as I want. 17a I can (not) receive good medical services. 18b I can attend social activities as I want. 19a My self-development was (not) improved. 20a I found it is (not) helpful to me to maintain health.
2.6 3.4 3.0 2.9 2.5 1.7 1.3 2.6 2.6 2.4 2.1
1.5 1.2 1.2 1.3 1.2 1.2 0.8 1.1 1.0 1.4 1.4
0.37 0.54 0.64 0.25 0.26 0.29 0.23 0.41 0.69 0.48 0.29
.817 .807 .802 .823 .822 .820 .821 .814 .802 .810 .821
1.7 1.4 2.2 1.6 1.9 2.3 1.3 1.6 1.7
1.0 0.9 1.4 1.0 1.3 1.3 0.7 1.2 1.2
0.45 0.36 0.30 0.55 0.50 0.38 0.22 0.36 0.41
.812 .817 .820 .809 .809 .816 .822 .816 .814
Scale ! = .822; values were scored as follows: 1, rare; 2, occasional; 3, sometimes; 4, often; and 5, always. a Scored in reverse direction. b Correlation with scale r G 0.31, scale ! = .828 if deleted.
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3. The CES-D is a 20-item scale that examines 4 domains: depressive emotions, positive feelings, physiological symptoms, and interpersonal issues.33 The total scores ranges from 0 to 60, with higher scores indicating more severe depressive symptoms; CES-D scores of 16 or greater indicate clinical depressive symptoms.33 Cronbach’s ! was .80 in this study.
Ethical Considerations The institutional review board of our hospital approved this research study (TMUH-05-08-02), and we obtained informed consent from all patients prior to data collection.
Statistical Analysis We used the SPSS 17.0 package (SPSS Inc, Chicago, Illinois) to perform data analyses in the scale verification stage; we report the statistical results by frequency, percentage, distribution, mean, and SD. Exploratory factor analysis with varimax rotation and Pearson correlation coefficient were used to examine scale validity. Cronbach’s ! was used to evaluate reliability. A receiver operating characteristic curve34 was used to assess the significance of CBS cutoff scores, and logistic regression was applied to evaluate the odds ratio of risk of CBS scores above the assigned cutoff points. P G .05 was considered statistically significant. n
Results
We recruited 154 study participants, and 134 completed the questionnaire; 20 (12.9%) refused to participate because of a lack of interest or time. Among the 134 patients for whom these 134 participants were providing caregiving, 92 were those unable to sit out of bed, 36 required assistance for ADLs, and 6 required partial assistance for ambulation. The demographic characteristics did not differ between patients who participated in the study and those who did not. The mean age of FCs was 57.7 T 14.7 years, most were women (51%), and most were patients’ spouses (59.7%). On average, FCs spent 14.6 T 5.8 h/d on caregiving tasks. Although FCs showed mild depressive symptoms with the CES-D assessment (mean score, 14.4 T 4.7), their reactions varied widely among the 5 factors of the CRA (Table 2).
Item Analysis and Exploratory Factor Analysis The 20 CBS items were examined using a Pearson correlation statistic to identify interitem and total-item correlations. First, we deleted 7 items that had an item-scale correlation coefficient of 0.31 or less (Table 1), resulting in a 13-item CBS that met the assumptions of factor analysis. The # 2 value in the Bartlett test of sphericity was 952.3 (P G .001), and the Kaiser-Meyer-Olkin correlation coefficient was 0.804, indicating the existence of common factors among the 13 items.35 The skew of the data was 0.37 (SD, 0.21), kurtosis was j0.76 (SD, 0.41), and the Z value from the Kolmogorov-Smirnov test was 1.38 (P 9 .05), which indicated the data were normally distributed and appropriate for factor analysis. We performed an exploratory factor analysis using a principal component analysis with varimax rotation to retrieve factors with an
Experience-Based Caregiver Burden Scale
Table 2 & Demographic and Caregiver Burden Variables (n = 134)
Variable
n
%
Female Relationship with the patient Spouse Child Other Living with the patient Caregiving experience Q1 y G1 y Education level Elementary Junior high High school College or above
70
51
79 46 12 113
59 33 8 85
92 42
69 31
12 21 53 48
9 16 39 36
Mean
SD
57.7 29.0 11.6 8.2 9.1
14.7 8.87 3.8 3.3 5.0
14.6 11.02 55.4 19.5 10.0 8.3 5.6 8.8 14.4 84.0 50.0
5.8 2.53 13.76 4.7 3.3 3.2 3.8 2.4 4.7 62.7 37.3
Age, y CBS (13Y65) Health impact (4Y20) Role impact (4Y20) Resource and growth (5Y25) Caregiving demands Daily time spent on caregiving (h) Caregiving tasks (4Y16) CRA (24Y120) Impact on schedule (5Y25) Impact on health (4Y20) Impact on finances (3Y15) Impact on family support (5Y25) Impact on self-esteem (7Y35) CES-D (0Y60) G16 Q16
Abbreviations: CBS, Caregiver Burden Scale; CES-D, Center for Epidemiologic Studies Depression Scale; CRA, Caregiver Reaction Assessment.
eigenvalue of greater than 1. After orthogonal rotation, 3 factors had a squared factor loading greater than 1 and explained 67.3% of the total variance. Based on their factor loadings, these 3 factors were termed ‘‘health impact,’’ ‘‘role competence,’’ and ‘‘resource and growth’’ (Table 3). Five items including health impact, remorse, and financial difficulties were considered to be subjective, and 6 items including dealing with patient’s symptoms, supporting daily functions of the patient, taking responsibility, and lacking medical resources were considered to be objective, and 2 items including selfdevelopment and health maintenance were considered to be positive experiences. These 13 questions had response options of a 5-point Likert scale; thus, the total CBS scores ranged from 13 to 65, with higher scores indicating a greater caregiver burden.
Criterion-Related Validity Table 4 shows the relationships among caregiving demands and the CRA scores as determined by Pearson correlation coefficients. The CBS was significantly correlated with caregiving demands (caregiving tasks, r = 0.42; P G .001; time spent on caregiving, Cancer NursingTM, Vol. 39, No. 1, 2016
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Table 3 & Factor Structure and Reliability of the Revised Caregiver Burden Scale Factor Loading Item No.
Item Content
Health impact 1 After starting to take care of the patient, I began to have pain problems. 2 After starting to take care of the patient, I began to have sleep problems. 3 After starting to take care of the patient, I began to feel fatigue. 9 After starting to take care of the patient, I began to feel depressed. Role competence 8 I experienced remorse frequently. 10 I have difficulties handling the disease symptoms of the patient. 12 I experience difficulties in taking care of my ill family’s daily life. 13 In addition to taking care of the patient, I take over his/her job responsibility. Resource and growth 15 My family has financial difficulties. 16a I can (not) obtain medical resources as I want. 17a I can (not) receive good medical services. 19a Taking care of my ill family (not) enhances self-development. 20a Taking care of my ill family is (not) helpful to me to maintain health. Total CBS score (13Y65)
1
2
3
0.17 0.11 0.46 0.31
0.67 0.88 0.75 0.64
0.30 0.11 0.06 0.41
0.27 0.01 0.16 0.65
0.42 0.30 0.08 0.06
0.68 0.67 0.72 0.71
0.65 0.88 0.76 0.89 0.91
0.11 0.19 0.01 0.08 0.03
0.37 0.09 0.07 0.11 0.09
Reliability Cronbach’s ! 0.79
0.72
0.89
0.83
Principal component analysis with varimax rotation for exploratory factor analysis. Rating scale: 1, rare; 2, occasional; 3, sometimes; 4, often; 5, always. a Questions scored in reverse order.
r = 0.41, P G .001), and all CRA component factors (r = 0.21Y0.53) reported by FCs. The health impact component of the CBS correlated significantly with all CRA subscales, except the esteem component factor. The role competence component of CBS also correlated significantly with health impact, schedule impact, and financial distress.
Reliability The internal consistency of the 13-item CBS (Cronbach’s !) was .83. The ! values for the health impact, role competence, and the resource and growth subscales were .79, .72, and .89, respectively (Table 3).
characteristic curve analysis of the optimal cutoff scores for the CBS and its subscales, along with the sensitivity, specificity, and overall correct rate for each cutoff point, is presented in Table 5. We used a logistic regression to examine the risk of developing depression in subjects who exceeded the cutoff values (Table 6). Family caregivers with a CBS score greater than 26 had a 13.9Ytimes greater risk of developing depression. Participants with a health impact subscale score of greater than 11 had a 17.1-times greater risk of developing depression, and those who also had a role competence score of greater than 8 had a 52.03-times greater risk of developing depression (12.1 4.3). The Figure illustrates the accumulative risk of significant depression at various multivariate levels.
Discussion
CBS Cutoff Score for Depression
n
In the present study, we considered a CES-D cutoff score of 16 or greater as indicative of depression. The receiver operating
We developed an experience-based scale for measuring the burden that FCs experience while caring for patients with
Table 4 & The Correlation of Component Factors with Other Measures of the Caregiver Burden Scale Health Impact
Role Competence
Resource and Growth
Total CBS
0.37a 0.29b 0.65a
0.29b 0.23b 0.50a
0.27b 0.37a 0.35a
0.42a 0.41a 0.67a
0.58a 0.51a 0.35a 0.20b 0.10
0.17b 0.32a 0.31a j0.09 0.02
0.38a 0.33a 0.34a 0.28a 0.36a
0.53a 0.53a 0.46a 0.21b 0.26a
Caregiving demands Spent times on caregiving CES-D CRA Impact on health Impact on schedule Impact on finance Impact on family support Impact on self-esteem
Abbreviations: CBS, Caregiver Burden Scale; CES-D, Center for Epidemiologic Studies Depression Scale; CRA, Caregiver Reaction Assessment. Values presented in the table are correlation coefficients. a P G .001. b P G .05.
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Table 5 & Predictive Values of CBS and Its Subscales for Depression The predictive power of CBS scores by receiver operating characteristic curve
Total of CBS Health impact Role competence Resource and growth
Area Under Curve
Cutoff Point
Sensitivity, %
Specificity, %
Overall Correct Rate
0.84 0.86 0.76 0.64
25.5 10.5 7.5 6.5
90% 90% 78% 70%
61% 66% 77% 54%
71.7% 73.6% 70.9% 59.7%
Abbreviation: CBS, Caregiver Burden Scale.
However, we also thought that examining the test-retest reliability would be inappropriate, given that FCs were experiencing considerable change in burden and emotional consequences. Nevertheless, the psychometric evaluation indicated the CBS had acceptable validity and reliability for assessing the intensity of caregiver burden in the context of advanced-stage cancer. Compared with other instruments that examine caregiver burden during the palliative stage, the 13-item CBS is shorter than the CRA,26 the Appraisal of Caregiving Scale,28 Zarit Caregiver Burden Interview 22,38 and the CBS EOLC (end-of-life care).29 The CBS includes both negative and positive caregiving experiences and is more comprehensive than the CBS EOLC, which was developed using an end-of-life population. In this study, the average time required to complete the CBS was less than 5 minutes, making it suitable for FCs of patients with advanced-stage cancer as they have limited time available and high responsibility levels. We found that a total CBS score greater than 26, a health subscale score greater than 11, and a role subscale score greater than 8 predicted significant depressive symptoms. The resource and growth subscale yielded a nonsignificant predictive power (Table 5), but the health and role subscale scores provided better prediction than did the total CBS. These findings are consistent with those of a previous study that indicated caregivers were more susceptible to depressive symptoms if they had experienced higher health impact and disruptions in their schedules.19 The health impact subscale examines 4 potential health concerns: pain, sleep, fatigue, and depression (Table 3). The mean value for each problem was 2.6 to 3.4 (mean, 2.9) on a scale of 1 to 5 (Table 1). In other words, caregivers of patients with advancedstage cancer occasionally experienced these 4 problems, and an
advanced-stage cancer. The newly developed instrument, which is based on the stress model of the FC experience,23 aims to identify stress assessments (caregiver burden) and to predict the impact of caregiving on the FCs mental well-being (depressive symptoms) within the context of advanced-stage cancer. The CBS was developed through in-depth interviews with 12 FCs of patients with end-stage cancer, and its psychometric properties were verified with a sample of 134 FCs. For valid results, Gorsuch36 recommended that there should be at least 100 participants with a minimum response-to-item ratio of 5; the ratio for the final sample size in our study was 10.3 and therefore adequate. In addition, the communality of CBS was 0.8 and higher than the 0.6 criterion.37 Therefore, we concluded that our newly developed CBS had adequate content validity. Our exploratory factorial analysis performed with a principal component analysis supported a 3-dimensional CBS structure, comprising health impact, role competence, and resource and growth. Thus, CBS is a multidimensional assessment tool that evaluates both positive (resource and growth) and negative (health impact and role competence) caregiving experiences. Caregiver Burden Scale was significantly correlated with the CES-D (r = 0.67; P G .001) and all CRA component factors. This result indicated the CBS had acceptable criterion-related validity. The Kaiser-Meyer-Olkin coefficient (0.80) for the CBS proves the instrument’s reliability by suggesting an intelligible and stable factorial structure. In addition, the CBS had acceptable internal consistency with a Cronbach’s ! of .83 for the total CBS and an ! range of .72 to .89 for the subscales. This study examined only internal consistency because changes in disease status and a high mortality rate are common among patients with end-stage cancer.
Table 6 & The Risk of Subjects With CBS Score Above Cutoff Value by Logistic Regression B
SE
Wald
df
P
Enter CBS only CBS Q 26 2.63 0.52 25.5 1 G.01 CBS, health impact, role competence, resource, and growth by forward Wald Step 1 Health impact Q11 2.84 0.52 29.3 1 G.01 Step 2 Health impact Q11 2.50 0.54 21.3 1 G.01 Role competence Q8 1.46 0.46 10.0 1 G.01 Health impact and role competence by enter Health impact Q11 2.42 0.55 19.5 1 G.01 Role competence Q8 1.44 0.46 9.7 1 G.01 Resource and growth Q7 0.35 0.47 .6 1 .46
Exp(B) (95% Confidence Interval)
Model Fitness
13.9 (5.0Y38.7)
139.9
17.1 (6.1Y47.7) 12.1 (4.2Y35.1) 4.3 (1.7Y10.7)
133.5 123.1
11.3 (3.8Y33.1) 4.3 (1.7Y10.5) 1.4 (.5Y3.5)
122.5
Present model fitness by j2 log likelihood value. Abbreviation: CBS, Caregiver Burden Scale.
Experience-Based Caregiver Burden Scale
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Implications for Nursing The 13-item CBS provides healthcare professionals with an accurate index for identifying FCs of patients with advancedstage cancer who are experiencing a significant burden and likely need help from a healthcare professional to prevent or manage depression or its symptoms. In addition, CBS health and role subscale items provide guidance for targeted intervention. With good validity and reliability, the CBS can assist healthcare professionals with assessing caregiver burden and provide suggestions for managing depressive symptoms.
References Figure n The cumulative risk of significant depression at several multivariate levels. increase to scores of 4 (often) or 5 (always) in any 1 of the 4 problems would increase the likelihood of significant depression by raising the health subscale score greater than 11. The role performance subscale also examined 4 items: remorse, difficulties in handling symptoms, difficulties in handling daily life, and taking responsibility (Table 3). The mean value for each problem was 1.4 to 2.6 (mean, 2.0) on a scale of 1 to 5 (Table 1), which resulted in total role subscale score of 8. Thus, healthcare professionals should aim to keep the score of any given item below 2 to decrease FCs’ risk of developing significant depression. The scale contents represent items that healthcare professionals must regularly assess and, when necessary, provide appropriate and timely intervention to prevent and manage depression among FCs of patients with advanced-stage cancer (Figure).
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Limitations
This study has several limitations. First, we used convenience sampling to select research participants. Second, we performed measurements only once; we did not follow up with FCs until the patients’ death. Therefore, further investigation is needed to confirm if these results can be generalized to other populations and determine the extent to which the CBS can detect depression in FCs throughout the patients’ dying process.
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Conclusions
In the present study, we developed the CBS with data gathered during in-depth interviews with FCs of terminally ill cancer patients. The CBS demonstrated acceptable validity and reliability, and when combined with its health and role subscales, it provided cutoff points that could adequately predict depression and quantify FCs’ risk of developing depressive symptoms. Furthermore, the instrument is brief, comprising only 13 items and taking approximately 5 minutes to complete, making it a highly convenient tool for healthcare professionals to identify FCs who need assistance with depression.
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