The Association of Satisfaction and Perceived Burden With Anxiety and Depression in Primary Caregivers of Dependent Elderly Relatives Rafael del-Pino-Casado, Pedro A. Palomino-Moral, Antonio Fras-Osuna

Correspondence to Rafael del-Pino-Casado E-mail: [email protected] Rafael del-Pino-Casado Professor School of Health Sciences Department of Nursing n University of Jae Campus las Lagunillas s.n. n 23071, Spain Jae Pedro A. Palomino-Moral Professor School of Health Sciences Department of Nursing n University of Jae n, Spain Jae Antonio Fras-Osuna Professor School of Health Sciences Department of Nursing n University of Jae n, Spain Jae

Abstract: Some researchers have viewed caregiver burden and satisfaction as two ends of the same continuum rather than as independent aspects of the caregiving experience. We conducted a cross-sectional study of primary caregivers of dependent elderly relatives in Spain (N ¼ 200; probabilistic sample), to determine whether satisfaction and perceived burden coexisted in caregivers, and whether these variables, considered separately and in combination, were associated with anxiety and depression, while controlling for objective aspects of care recipients' needs. Data on satisfaction with care, perceived burden, objective burden, anxiety, and depression were gathered in 2013 by interviews in caregivers' homes. Descriptive, bivariate, and multivariate analyses were performed. Of the 200 primary caregivers, 12.5% reported both high satisfaction with care and high perceived burden. Anxiety and depression levels were lower in caregivers with high satisfaction and low perceived burden than in those with low satisfaction and high burden or with high satisfaction and high burden. Our findings support the following conclusions: (1) Satisfaction may be experienced despite the presence of stressful factors; (2) the combination of high satisfaction and low burden might have protective effects on anxiety and depression in caregivers. © 2015 Wiley Periodicals, Inc. Keywords: family caregivers; satisfaction; perceived burden; anxiety; depression Research in Nursing & Health, 2015, 38, 384–391 Accepted 15 June 2015 DOI: 10.1002/nur.21671 Published online 1 July 2015 in Wiley Online Library (wileyonlinelibrary.com).

The study of dependent elderly relative care is an important healthcare research focus in developed countries, due to the increase in population aging and dependence, the growth in the informal care of the dependent elderly, and the predominant role of the family in this care (Organization for Economic Cooperation and Development [OECD], 2013). It has been reported that the care of a dependent relative has detrimental effects on the health of caregivers (Pinquart & Sorensen, 2003b), as reflected in the frequency and significance of anxiety and depression (Cooper, Balamurali, & Livingston, 2007; Schoenmakers, Buntinx, & Delepeleire, 2010). The theoretical models that have been used to explain the occurrence of anxiety and depression are based on the stress proliferation model of Lazarus and Folkman (1984). These models and much of the research  C

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in non-remunerated care have centered on its negative aspects (perceived burden) and consequences, without considering the positive aspects of relative care and the satisfaction it can generate (Hsiao & Tsai, 2014). Satisfaction with care can be defined as the perception of subjective rewards and gains and the experience of personal growth related to care provision (Lawton, Moss, Kleban, Glicksman, & Rovine, 1991; Lopez, Lopez-Arrieta, & Crespo, 2005). Despite the underrepresentation of positive aspects of caregiving in relation to its negative aspects, several authors have studied factors related to satisfaction (e.g., Wakefield, Hayes, Boren, Pak, & Davis, 2012) and relationships between satisfaction and consequences of caregiving (e.g., Wilson-Genderson, Pruchno, & Cartwright, 2009).

BURDEN AND SATISFACTION IN CAREGIVING/ DEL-PINO-CASADO ET AL.

Some studies on satisfaction with care (e.g., Liu, Insel, Reed, & Crist, 2012) have been based on Bradburn's two-factor theory of emotional wellbeing (1969), and on subsequent developments of this theory by Lawton et al. (1991) in the field of dependent elderly relative care. Based on the conceptual separation between positive and negative aspects of wellbeing proposed by Bradburn (1969), Lawton et al. (1991) defined a double (positive and negative) valence in care, with one dimension that includes positive perceptions (satisfaction with care) and states (emotional wellbeing) and another that comprises negative perceptions (perceived burden) and states (e.g., depression and anxiety). Lawton et al. considered the positive and negative aspects of care as conceptually different and relatively independent entities rather than poles of the same continuum, so that greater care activity could increase both satisfaction and perceived burden at the same time. They also affirmed the predominance of parallel over cross relationships in each dimension, considering that satisfaction was more closely related to wellbeing than to negative states, and that perceived burden was more closely related to negative states than to wellbeing. Findings of some studies have supported these parallel relationships (Cheng, Lam, Kwok, Ng, & Fung, 2013; Pruchno & McKenney, 2002). Lawton et al. also proposed that perceived burden and satisfaction with care moderate or mediate the effect of specific care stressors (objective burden) on positive and negative emotional states. The present study centers on the coexistence of satisfaction and perceived burden and on the relationship of both variables with anxiety and depression, considered separately and in combination.

Coexistence of Satisfaction and Burden Many authors analyzing the coexistence of satisfaction and perceived burden (e.g., Andren & Elmstahl, 2005) based their conclusions on the elevated presence of both in the same sample, but these were measured independently and as quantitative variables. The assumption of the coexistence of both conditions in the same person based on the high levels of both in the sample may represent an ecological fallacy. In contrast, various authors (Aschbrenner, Greenberg, Allen, & Seltzer, 2010; Hinrichsen, Hernandez, & Pollack, 1992; Kang et al., 2013; Riedel, Fredman, & Langenberg, 1998) found no relationship between satisfaction and perceived burden, a result that is incompatible with their coexistence.

Effects on Anxiety and Depression Only a few authors have analyzed the combined effect of perceived burden and satisfaction on anxiety and/or depression (e.g., Lawton et al., 1991; Lawton, Rajagopal, Brody, & Kleban, 1992). There is some evidence that perceived burden is related to depression (Pinquart &

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Sorensen, 2003a), but there has been less research on its relationship with anxiety (Cooper et al., 2007). The relationship between satisfaction and anxiety has been little studied, while controversial results have been published by the few investigations into the relationship between satisfaction and depression, with some authors reporting that the relationship was indirect and mediated by perceived burden (e.g., Lawton et al., 1991), some observing a direct relationship between them (Wakefield et al., 2012), and others finding no relationship (Kang et al., 2013). Further research is therefore required to investigate the effect of satisfaction and perceived burden on anxiety and depression and to study the fit of these relationships to the conceptual model proposed by Lawton et al. These results would be useful to improve the early detection, prevention, and treatment of anxiety and depression in the primary caregivers of dependent elderly relatives. The objectives of this study were (1) to determine whether satisfaction and perceived burden coexist in the same individuals; (2) to describe and analyze the profiles of caregivers in terms of perceived burden and satisfaction with care; (3) to analyze the relationship of anxiety and depression with perceived burden-satisfaction profiles; and 4) to determine whether perceived burden moderates the relationship between satisfaction and anxiety or depression.

Methods Design, Setting, and Sample A descriptive cross-sectional study was undertaken. The study population comprised the primary caregivers of dependent elderly relatives from the municipalities of Bujalance and Montoro (Cordoba province, Southern Spain), which have 46,560 inhabitants. Frame sampling was carried out from clinical records of elderly dependents who were cared for by a relative in the healthcare centers of the area (1,182 subjects). We considered dependent elderly relatives to be older relatives who are dependent for at least one activity of daily living (basic or instrumental), and primary caregivers to be those taking the responsibility for care and delivering the largest amount of care. Random, stratified sampling was conducted with proportional affixation by the population of the health centers in the municipalities. First, we estimated a sample size of 200 caregivers a) to detect a difference among four satisfaction-burden subgroups shown in Table 1 in the standard deviations of anxiety and depression with a power of 97% and 98%, respectively, at a significance level of 5% and b) to test with a power of 82% the null hypothesis that regression coefficients will be equal to zero when these coefficients have a value of at least 0.15. PASS v. 11 was used for the sample size calculations. Second, we assigned a number of sample elements to each center according to its population. Third, we carried

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Table 1. Characteristics of the Sample of Caregivers (N ¼ 200) and Their Care Recipients Possible Range Caregiver characteristics Age Sex Female Male Kinship Spouse Offspring Others Duration of care (months) Residence in common Yes No Satisfaction Perceived burden Profiles of satisfaction and perceived burden LSHB HSHB LSLB HSLB Anxiety Depression Intensity of care Care recipient characteristics ADL Cognitive impairment Behavior problems

Actual Range

M

SD

95% CI

58.5

12.9

[56.7, 60.3]

72.9

6–30 0–13

6–30 0–12

26.6 4.7

64.1

5.3 2.8

n

%

95% CI

176 24

88.0 12.0

[83.2, 92.8] [7.2, 16.8]

52 117 31

26.0 58.5 15.5

[19.7, 32.3] [51.4, 65.6] [10.2, 20.8]

165 35

82.5 17.5

[76.9, 88.0] [11.9, 23.0]

31 25 41 103

15.5 12.5 20.5 51.5

[63.9, 81.9]

[25.8, 27.3] [4.3, 5.1]

0–9 0–9 0–100

0–9 0–9 0–90

3.3 3.4 51.7

3.1 3.2 28.3

[2.9, 3.8] [2.9, 3.9] [47.6, 55.7]

0–20 0–10 0–120

0–19 0–10 0–50

5.7 5.8 6.0

5.2 3.9 10.1

[5.1, 6.6] [5.2, 6.3] [4.6, 7.5]

Note. Probabilistic sample drawn from target population. M, mean, SD, standard deviation, CI, confidence interval. LSHB: low satisfaction and high burden, HSHB: high satisfaction and high burden, LSLB: low satisfaction and low burden, HSLB: high satisfaction and low burden, ADL: independence for basic activities of daily living.

out a systematic random sampling from the clinical records at each center.

Procedures The study was approved by the Research Ethics Committee of the province of Cordoba (Spain). All participants signed informed consent. Data were gathered in 2013 by a nurse trained for this purpose and with experience in the care of dependent people and their caregivers. The nurse interviewed caregivers in their homes. Before the interviews, caregivers were phoned by their family nurse, who informed them about the study during a home visit and arranged the date for the interview for those expressing interest in participating. The privacy of caregiver identification data was guaranteed for the sampling, the initial contact, and subsequent interview. The interviewer had no previous relationship with the caregivers or dependents. Only one of the randomly selected caregivers refused to participate in the study and was substituted by another chosen at random. A pilot study was conducted (N ¼ 20) to evaluate the data collection procedure and introduce any improvements required.

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Measures Satisfaction with care was measured using the satisfaction subscale of the Caregiving Appraisal Scale (Lawton, Kleban, Moss, Rovine, & Glicksman, 1989), which consists of 6 items evaluated on a Likert scale (score range, 6–30 points; the score is directly proportional to satisfaction). This instrument has been widely used to measure satisfaction in caregivers of dependent elderly relatives (Kramer, 1997), showing good clinimetric properties (0.71 internal consistency and 0.76 test-retest reliability). In the present study, an expert group adapted the subscale to our context through a cultural adaptation process, and a back translation was performed with the assistance of an English-native professional translator. Internal consistency in the study sample was 0.90 (Cronbach a). Exploratory factor analysis of the dimensions of this subscale (principal axis factoring, eigenvalues greater than 1, and direct oblimin rotation) yielded a single factor explaining 70.9% of the variance in this sample. Perceived burdenwas measured with the Caregiver Strain Index (Robinson, 1983), which includes 13 items (score range, 0–13 points; the score is directly proporpez tional to perceived burden). It was validated by Lo

BURDEN AND SATISFACTION IN CAREGIVING/ DEL-PINO-CASADO ET AL.

Alonso and Moral Serrano (2005) in a Spanish sample and found to have a high correlation with the determinants and consequences of perceived burden and a Cronbach a of: 0.86. Cronbach a for the current sample was 0.76. Profiles of positive and negative caregiving aspects were developed based on levels of satisfaction with care and perceived burden. The four profiles were as follows: low satisfaction and high burden, high satisfaction and high burden, low satisfaction and low burden, and high satisfaction and low burden. The mean value of the sample was considered the threshold between low and high satisfaction, because no cutoff point has been established for the Caregiving Appraisal Scale. A score of 7 was considered as the cutoff point between low and high perceived burden, as proposed by the author of the Caregiver Strain Index (Robinson, 1983). Anxiety and depression were measured by the Goldberg Anxiety-Depression Scale, composed of one subscale for anxiety and another for depression. Each subscale includes 9 dichotomous (yes/no) questions, with one point scored for each affirmative response (score range: 0– 9 for each subscale; the score is directly proportional to anxiety or depression, as appropriate). The scale has been n, Pe  rez-Echevarrıa, validated in a Spanish sample (Monto Campos, Garcia Campayo, & Lobo, 1993) with good psychometric results (83.1% sensitivity, 81.8% specificity, and 95.3% positive predictive value). Cronbach a for the present study was 0.88 for anxiety and 0.89 for depression. Control variables (objective burden). Objective burden was defined as as the care requirements of the dependent person and measured using the Barthel Index, Pfeiffer test, Cummings Neuropsychiatric Inventory (NPI), and the intensity of care provided by the caregiver, a new index. The Barthel Index (Mahoney & Barthel, 1965) is a 10item scale (score range: 0–20) that measures the independence in basic activities of daily living (ADLs; the score is directly proportional to this independence); we used the vern et al. (1993), who reported sion validated in Spain by Bazta its good psychometric properties, with a high criterion validity, test-retest reliability of 0.98, and inter-observer reliability of 0.98. Cronbach a for the present study was 0.89. The Pfeiffer test is 10 items that measure cognitive impairment (score range: 0–10; the score is directly proportional to cognitive impairment); we used the version validated in Spain by Martınez de la Iglesia et al. (2001), who reported a sensitivity of 85.7% and specificity of 97.3%. Cronbach a for the current sample was 0.94. The NPI (Cummings et al., 1994) measures the frequency and severity of behavioral problems reflecting psychological and psychiatric symptoms (e.g., irritability, agitation, etc.), with a score range of 0–120 (the score is directly proportional to frequency and severity of behavioral problems); we used the version validated in Spain by Vilalta-Franch et al. (1999), who reported inter-observer

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reliability of 0.93 and test-retest reliability of 0.79 for frequency and 0.86 for severity. Cronbach a for the present study was 0.70. Intensity of care was measured with the Dedication n al Cuidado to Care Scale (Escala de Dedicacio [DeCuida] in Spanish), which was expressly prepared for this study. It consists of 10 items corresponding to the 10 items (needs) in the Barthel Index. Intensity of care for each need is obtained by multiplying the dependency level (theoretical score of the Barthel Index minus the real score) by the frequency of care for each need (from 0 ¼ never to 5 ¼ always), considering a total Barthel Index score of 20 points for this calculation. The total score of DeCuida is the sum of the scores for each need (range, 0–100; the score is directly proportional to the intensity of care). We found internal consistency of 0.86 (Cronbach's a), inter-observer reliability of 0.88 (Intraclass Correlation Coefficient [ICC]), and test-retest reliability of 0.96 (ICC). The exploratory factor analysis (principal components analysis, eigenvalues > 1) yielded a single factor explaining 64% of the variance.

Data Analysis Percentages, means and standard deviations (with 95% confidence intervals), one-way analysis of variance (ANOVA), and the x2 test were performed to meet objectives 1 and 2. One-way ANOVA and one-way analysis of covariance (ANCOVA) adjusted for variables of objective burden (independence for ADLs, cognitive impairment, behavior problems, and intensity of care) were used for objective 3. Multiple linear regression was used for objective 4, with an interaction term (perceived burden  satisfaction) to test moderation, with variables of objective burden as covariates. We adjusted for variables of objective burden in objectives 3 and 4 because these variables have been related to anxiety (Cooper et al., 2007) and depression (Pinquart & Sorensen, 2003a). A level of p  0.05 was considered significant.

Results Coexistence of Satisfaction and Burden (Objective 1) The characteristics of the study sample and the descriptive data on the measures used in this study are exhibited in Table 1. Perceived burden was low overall. A high satisfaction-low perceived burden profile was reported in 51.5% of the sample, and a high satisfaction-high perceived burden profile in 12.5%. Table 2 displays the matrix of correlations among the different measures, showing significant correlations (Pearson's r) between satisfaction and perceived burden (p < 0.01), anxiety (p < 0.05), depression (p < 0.01), and behavioral problems (p < 0.05).

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Table 2. Correlation Matrix of Caregiver Satisfaction, Perceived Burden, Anxiety, Depression, and Objective Burden Indicators

1 Satisfaction 2 Perceived burden 3 Anxiety 4 Depression 5 ADL 6 Cognitive impairment 7 Behavior problems 8 Intensity of care

1

2

3

4

5

6

7

— .289  .179 .185  .011 .037 .165 .028

.478  .445  .351  .283  .428  .444 

.689  .000 .062 .249  .019

.061 .141 .213  .064

.613  .151 .771 

.292  .452 

.130

Note. ADL: independence for basic activities of daily living.  p < .05  p < .01

Profiles of Caregiver Groups With High and Low Satisfaction and Burden (Objective 2) According to analysis of the main characteristics of the different burden-satisfaction profiles of the caregivers (Table 3), caregivers with low satisfaction-high burden and high satisfaction-high burden were younger, were predominantly children rather than other relatives of care recipients, and had care recipients with more care requirements (low independence in ADLs, high cognitive impairment and behavioral problems). The caregiver with low satisfactionlow burden were more often male, relatives other than spouses or children, and had care recipients with fewer care requirements. The high satisfaction-low burden caregivers were characterized by a higher mean age and consisted only of spouses and offspring.

Anxiety and Depression in SatisfactionBurden Profile Groups (Objective 3) One-way ANOVA revealed significant differences in anxiety scores among the different profiles (Table 3). When the analyses were adjusted for objective burden (independence for ADLs, cognitive impairment, behavior problems, and intensity of care) in one-way ANCOVA, the differences remained significant (p < .001). A post-hoc Bonferroni test showed that the anxiety level was significantly lower (p < .05) for the high satisfaction-low burden profile than for the low satisfaction-high burden and high satisfaction-high burden profiles and was significantly lower (p < .05) for the low satisfaction-low burden profile than for the low satisfaction-high burden and high satisfaction-high burden profiles. One-way ANOVA also revealed significant differences in depression scores among the four profiles (Table 3), which remained significant in one-way ANCOVA after adjustment for objective burden (p < .001). Bonferroni tests showed that the level of depression was significantly lower for the high satisfaction-low burden profile than for the low satisfaction-high burden and high satisfaction-high burden

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profiles (p < .05) and was significantly lower for the low satisfaction-low burden profile than for the low satisfactionhigh burden profiles (p < .05).

Perceived Burden as Moderator of Relationship between Satisfaction and Anxiety or Depression (Objective 4) In separate regression models, anxiety and depression were regressed on perceived burden and satisfaction, with independence for ADLs, cognitive impairment, and behavior problems as covariates. We did not include intensity of care in the model because this variable was highly correlated with independence of ADLs as shown in Table 2. Anxiety was associated with perceived burden (b ¼.50, p < .001) but not with satisfaction (b ¼ .05, p ¼ .46). The model showed an r2 of .25. When the interaction term (perceived burden  satisfaction) was introduced in the model, its contribution was not significant (p ¼ .55). Therefore, perceived burden did not moderate the relationship between satisfaction and anxiety. Depression was associated with perceived burden (b ¼.46, p < .001) but not with satisfaction (b ¼ .06, p ¼ .40). The model showed an r2 of .21. When the interaction term (perceived burden  satisfaction) was introduced in the model, its contribution was not significant (p ¼ .55). Therefore, perceived burden did not moderate the relationship between satisfaction and depression.

Discussion In this study, 12.5% of caregivers reported both high satisfaction and high perceived burden. The caregivers experiencing high satisfaction with care and low perceived burden expressed lower levels of anxiety and depression in comparison to those with low or high satisfaction and high burden. Perceived burden was more strongly related to anxiety and depression than was satisfaction. In this sample, the level of care needed by the care recipients and the

Research in Nursing & Health 89.2 .14b

57.9 63.9

The Association of Satisfaction and Perceived Burden With Anxiety and Depression in Primary Caregivers of Dependent Elderly Relatives.

Some researchers have viewed caregiver burden and satisfaction as two ends of the same continuum rather than as independent aspects of the caregiving ...
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