Qual Life Res DOI 10.1007/s11136-013-0577-4
The dyadic interaction of relationships and disability type on informal carer subjective well-being Thomas Hammond • Melissa K. Weinberg Robert A. Cummins
•
Accepted: 6 November 2013 Ó Springer Science+Business Media Dordrecht 2013
Abstract Purpose Care-related factors have frequently been associated with elevated levels of distress and diminished subjective well-being. However, these variables have traditionally been considered independently. The objectives of this study were to explore the subjective well-being of informal carers in Australia and to specifically examine the effect of the dyadic interaction between the caring relationship and type of disability on the subjective well-being of informal carers. Methods Informal carers (n = 4,096) completed the Personal Wellbeing Index (PWI) and Depression and Stress Scales. Analysis of covariance was used to compare the subjective well-being of carers to the general population while controlling for socio-demographic factors. To examine the dyadic relationship, a multivariate analysis of covariance was employed. Results After socio-demographic variables were controlled, informal carers reported significantly lower PWI scores compared to the general population. The results of the multivariate analysis of covariance revealed a significant interaction between the caring relationship and the type of disability being managed on subjective well-being. No differences were found for symptoms of depression and stress. Conclusions The findings of this study imply that the detrimental effect of caring on subjective well-being is magnified for carers who support a child with a mental illness or multiple types of disabilities. These carers displayed the lowest levels of subjective well-being, highlighting the dyadic effects of care-related variables. Consideration of T. Hammond (&) M. K. Weinberg R. A. Cummins Deakin University, School of Psychology, Burwood, VIC, Australia e-mail: [email protected]
these factors is essential to target effective intervention programs for those most at risk of diminished well-being. Keywords Informal carers Subjective well-being Depression Stress
Introduction An informal carer is a person who provides unpaid support to family members or friends, who have a disability, or are frail and older [1]. Such care involves assistance with varied aspects of daily life, but most commonly includes physical and personal care. Informal carers are also commonly responsible for the daily management of medical conditions, and the provision of emotional and financial support [1]. Assuming this role can present as a stressful experience that can negatively affect the psychological health of care providers [2, 3]. It has been well documented that informal carers report increased symptoms of depression, psychological distress and lower perceptions of selfefficacy and subjective well-being [3–7]. Models developed to account for these outcomes include general risk factors such as age, income and gender [8] but often focus on variables unique to the caring context because of their consistent association to distress and low subjective well-being [9]. One care-related variable often associated with negative carer outcomes is the intensity of care required. The amount of time spent caring, number of caring tasks and behavioural problems displayed by care recipients have consistently shown to have important implications for carer distress levels and perceived burden. Across studies, a positive relationship has emerged; increased care intensity is associated with higher distress levels [3, 8, 9].
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Other studies have focused on the relationship to the care recipient or the type of disability being managed as risk factors for carer distress, although their association to distress remains less clear. For instance, on an individual level, severe psychological distress has been commonly found among carers of people with dementia [2], eating disorders, [10] schizophrenia, [11] and physical or intellectual impairments [4, 5]. However, when comparing the effects of numerous disability types on caregiver burden and subjective well-being, different findings emerge. Comparative analyses have demonstrated that when controlling for sociodemographic factors and care intensity, caregivers who supported someone with cancer or dementia reported higher levels of burden and psychological distress compared to caregivers who supported someone with a chronic health condition or frail older individuals [12]. With respect to the caring relationship, immediate family members tend to report more stress and sadness when compared to non-immediate family carers [13]. When considered individually, spousal carers and parental carers of children and adolescents have been shown to report high levels of negative affect and low levels of subjective well-being [4, 7, 10, 14, 15]. However, comparative studies present a much more complex situation where certain relationships have increasingly adverse effects on informal carers. Early studies indicated that caring for a parent is associated with elevated stress levels [16] and burden [17]. More, recent evidence suggests that caring for a spouse poses the greatest risk of burden, depression and diminished subjective well-being when compared to caring for a child, adult child and parent [5, 7, 9, 14, 18]. While these studies provide valuable information about each unique caring context, they do not consider how the dyadic association between caring relationships and the type of disability may affect subjective well-being. Recent evidence suggests that when considered individually, each variable may overestimate actual effects on carer outcomes [8]. Furthermore, these variables may have an additive effect, increasing the risk of low subjective well-being for specific carer groups. Thus, to fully understand the consequences of providing informal care on subjective wellbeing, variables assessing both the caring relationship and type of disability should be considered simultaneously [8]. To appreciate how this dyadic relationship may affect subjective well-being, two theories may provide valuable insights. The wear and tear hypothesis of caregiving suggests that if stressors related to care provision exceed the coping resources possessed by the carer, the carer will likely experience a decrease in subjective well-being [9, 19, 20]. This intuitive proposition closely aligns with other perspectives of happiness and quality of life, such as homeostasis theory. Within this theory, under conditions of
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zero threat, well-being is positive and kept within a narrow set point range. When challenged, the system strives to keep well-being steady. However, when the strength of challenges becomes too great, well-being is likely to suffer [21]. Past research has specifically identified the caring relationship and type of disability being managed as unique and significant challenges. When combined together, much like in the real world, the sum may create a situation that can overwhelm coping resources. As such, carers in the most aversive circumstances may demonstrate the lowest levels of subjective well-being. Therefore, the present study aims to further understand how the dyadic interaction between caring relationship and the type of disability affects the subjective well-being of carers and contributes to their reported symptoms of depression and stress. To accomplish this, two primary objectives have been established. This first is to expand upon previous findings, focused on carers of children [4], to compare the subjective well-being of a sample of carers to the general population, while controlling for a number of socio-demographic factors shown to affect well-being. The second is to evaluate the effects of the interaction between the caring relationship and the type of disability on carer subjective well-being and symptoms of depression and stress. Based on this information, carers most at risk for diminished well-being will be identified. Based on these objectives, it is hypothesized that after controlling for age, gender and income, a population sample of informal carers will display levels of subjective well-being that fall well below the normative range of the general population. With respect to the dyadic relationship, it is hypothesized that the type of disability and caring relationship will demonstrate a significant interaction effect when evaluating subjective well-being and symptoms of depression and stress. Furthermore, it is anticipated that carers supporting a spouse with multiple types of disabilities will demonstrate the lowest levels of subjective wellbeing.
Method Procedure This study used cross-sectional data collected in 2007 from survey 17 of the Australian Unity Wellbeing Index (AUWI). Survey 17 was developed in collaboration with Carers Australia, a national body representing informal, unpaid carers [1]. Approximately 11,000 questionnaires were distributed to a random sample of carers identified by the Carers Australia database, who were over the age of 18 years. Recipients were asked to complete questions assessing subjective well-being, symptoms of depression and stress,
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hours spent caring, who they provided care for and other demographic variables. The response rate was 37 % with 4,096 surveys returned by participants. No data were available for the carers who chose not to participate in the study. Participants The study sample comprised 827 (20 %) male and 3,134 (79 %) female informal carers. They were aged 18 to 94 years old, with a mean age of 60.10 years (SD = 13.15). Of these carers, 90 % identified themselves as the primary care provider. Duration of support ranged from less than 1 h to greater than 12 h per day. Participants reported providing care for children, adult children, grandchildren and parents but most often provided care for their spouse (40 %). The types of disabilities being managed included chronic medical conditions, physical disabilities, mental illness or frail older adults. Full details are presented in Table 1. Measures Subjective well-being was measured using the Personal Wellbeing Index—adult version (PWI) [22]. This scale is a domain-based, seven-item measure of well-being assessing the level of satisfaction with: standard of living, health, achieving in life, relationships, safety, community connectedness and future security. Respondents rate their satisfaction on an 11-point end-defined scale [23] with anchors of (0) completely dissatisfied to (10) completely satisfied. Domain scores are then averaged, and all results are converted to a percentage point score from zero to 100 [22]. The PWI displays adequate internal consistency (a = .70 to .85), and test–retest reliability over a two-week period has been reported as .84 [24]. Self-reported symptoms of depression and stress were assessed using the depression and stress subscales of Depression, Anxiety and Stress Scales (DASS) 21-item version. The anxiety scale was not included in the present study as these items emphasize acute physiological responses to fear rather than chronic over-arousal and difficulty meeting taxing life demands [25]. Items were converted to an 11-point scale ranging from (0) did not apply to (10) applied a lot. This scale was adopted to enhance scale sensitivity without systematically compromising scale reliability [26]. Depression and stress severity cut-off scores were then recalculated to reflect the new scale ratings (see Table 2). Demographic variables were collected to assess the respondent’s age, gender and level of income. Care-related variables assessed hours spent caring, the type of disability being cared for and the relationship to the care recipient. Hours of caring were measured by six time periods ranging from less than 1 h per day to providing care almost all of the
time. To determine the caring relationship, categorical response options were provided where participants identified caring for their spouse, children, parents or multiple family members. In this same format, they also indicated the type of disability being cared for, including chronic health conditions, someone who was frail and older, physical disability, mental illness or more than one type of disability. Data analysis Prior to analysis, the data were checked for acquiescent responses, as recommended by the PWI manual [22]. As a consequence, 59 respondents were eliminated due to consistent PWI ratings as either 0 or as 10 across all seven domains. These responses provide no variance, and this pattern of responding is indicative of a response set, typical of respondents who fail to understand the task or are unwilling to provide valid data. Data were then analysed using SPSS version 21.0 and screened for missing values. Missing values were found to be random, and cases were excluded pairwise in subsequent analyses. Prior to analyses, the assumptions of linearity, normality and homoscedasticity were assessed. The PWI, depression and stress scales violated statistical tests of normality. Due to the large sample size, both the Kolmogorov–Smirnov and Shapiro–Wilk tests achieved significance. Subsequent inspection of the normal probability plots revealed distributions that closely approximated normality and were considered acceptable. Nevertheless, given the large sample size in the present study, deviations from normality would not make a substantive difference to the analyses [27]. To test for differences in subjective well-being, data collected from survey 27 and 28 of the Australian Unity Wellbeing Index [28, 29] served as the general population comparison group. Initially, independent t tests were used to determine whether differences in PWI scores could be observed between carers and the general population. Following this procedure, an ANCOVA was completed to control for the well-documented effects of age, gender and income on PWI [30]. To determine the effects of the caring relationship and the type of disability being managed on carer PWI and symptoms of depression and stress, a MANCOVA was conducted. Given the relationship between hours spent caring and well-being has been demonstrated [3, 8], it was held constant along with gender, age and income.
Results Personal Wellbeing Index The well-being of the carer sample when compared to a sample of the general Australian population was first
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Qual Life Res Table 1 Outcome scores of informal carers by demographic and care-related variables Variable
N
%
PWI
Depression
Stress
M
SD
M
SD
M
SD
Demographic variable Gender Male Female
823
20.90
61.70
20.43
35.23
26.32
44.81
28.21
3,113
79.10
57.64
21.18
39.06
27.01
50.88
27.32
Age 18–35
129
3.20
54.21
20.71
37.78
26.89
56.48
27.51
36–45 46–55
468 809
11.60 20.00
52.72 53.43
21.08 20.84
42.32 41.66
26.85 27.22
55.94 53.80
26.14 26.66
56–65
1,175
29.10
58.37
20.82
37.98
26.59
49.76
27.09
66–75
831
20.60
61.98
20.47
35.81
26.81
45.25
27.92
75?
554
13.70
68.51
18.27
33.39
25.98
41.12
27.99
774
19.20
54.17
23.11
42.52
28.81
50.23
28.96
$15,000–$30,000
1,322
32.70
57.72
21.35
38.39
26.61
48.30
27.33
$31,000–$60,000
1,019
25.20
59.53
19.95
37.81
26.24
50.65
27.54
$61,000–$90,000
359
8.90
61.48
19.55
35.46
25.58
49.17
27.28
$91,000–$120,000
176
4.40
61.06
19.73
33.60
24.46
51.30
26.10
$121,000–$150,000
77
2.00
63.85
17.36
36.70
26.24
53.53
24.65
$151,000?
43
1.10
77.07
11.31
21.36
17.69
45.02
28.00
\1 h 1–2 h
141 255
3.70 6.90
69.16 65.32
16.63 17.83
24.46 28.82
20.81 23.71
34.35 39.00
24.90 25.66
3–6 h
630
16.70
62.41
18.83
33.80
25.09
44.90
26.02
Household income \$15,000
Care-related variables Hours caring
7–12 h
564
14.90
58.32
20.72
38.50
26.46
50.06
26.00
[12 h
560
15.10
56.37
21.66
39.08
26.71
52.86
27.67
1,567
42.70
55.31
21.87
42.56
27.62
53.69
27.94
528
13.90
57.77
20.82
38.49
27.64
50.59
27.92 27.31
Almost always Caring relationship Parent Spouse
1,523
40.60
61.55
20.10
37.21
26.23
47.34
Child
497
12.50
52.91
20.56
41.43
26.26
55.83
25.77
Adult child
611
16.10
57.72
22.26
36.99
27.90
48.59
28.48
Grandchild
23
0.70
65.77
17.27
29.45
23.57
45.38
32.62
Neighbour
69
1.90
59.67
20.22
34.66
27.85
42.68
28.67
Other
68
1.80
63.66
22.25
33.39
25.91
44.14
29.37
477
12.60
54.30
21.79
41.71
26.91
53.34
26.70
Chronic condition Mental illness
294 466
9.00 13.90
61.94 58.19
20.35 20.84
37.27 39.80
27.04 25.97
47.62 50.19
28.16 26.64
Physical disability
1,073
32.10
59.17
20.91
36.04
26.73
48.88
27.60
329
9.80
63.29
20.09
34.05
26.14
44.41
27.57
1,152
35.10
56.78
21.36
40.82
27.29
51.83
27.58
Multiple family members Type of disability
Aged & Frail Multiple disabilities
explored. The average PWI score reported by informal carers (n = 3,824) was 58.51 (SD = 21.10). This value was significantly lower than the average PWI of the general population (n = 3,754, M = 75.55, SD = 12.96),
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[t (6,367) = 42.42, p \ .001]. Informal carers also reported significantly lower scores on each domain of the PWI compared to the general population. However, given the well-documented effects of gender, age and income on
Qual Life Res Table 2 Prevalence and severity of depression and stress symptoms Variable
N
%
Mean
SD
DASS depression symptoms Normal (0–21)
1,271
35.0
7.90
6.70
320
8.8
26.52
2.51
Mild (22–31) Moderate (32–48)
675
18.6
40.54
4.57
Severe (49–64)
669
18.4
55.97
4.10
Extremely severe (65?)
699
19.2
78.91
9.88
1,175
29.1
14.75
10.29
354
8.8
38.81
2.92
DASS stress symptoms Normal (0–33) Mild (34–43) Moderate (44–60)
812
20.1
52.60
4.77
Severe (61–79) Extremely severe (80?)
917 612
22.7 15.2
69.43 88.45
5.26 6.17
PWI scores, a subsequent covariate analysis was conducted to hold these variables constant. As shown in Table 3, informal carers still reported significantly lower (p \ .001) PWI and domain scores when controlling for a number of important socio-demographic factors. Although comparative data from the general population sample were not available for depression and stress scores, the DASS cut-off points were used as an indication of symptom severity [25]. As shown in Table 2, more than half (56 %) of carers reported moderate-to-extremely severe symptoms of depression, with the average depression score falling within the moderate range (M = 38.20, SD = 26.87). With respect to stress symptoms, 60 % of carers reported moderate-to-extreme stress symptoms, with the average stress score observed in the moderate range (M = 49.51, SD = 27.63). The second study objective was to determine the effects the caring relationship and the type of disability being managed on carer subjective well-being and symptoms of depression and stress. Table 1 provides an overview of descriptive statistics for each demographic and care-related variable. A subsequent MANCOVA was then conducted to
determine the effects of the caring relationship and type of disability on PWI, depression and stress symptoms. Hours spent caring, age, gender and income served as covariates. The assumption of sphericity was met, as indicated by a non-significant Box’s M (p = .092). The MANCOVA revealed no significant multivariate effects. However, there was a significant univariate effect of the interaction between the caring relationship and the type of disability being managed on the PWI [F (27, 2,751) = 641.005, p \ .05], even after the application of a Bonferroni correction. No significant differences were found among symptoms of depression or stress. To further explore the interaction between the caring relationship and disability type, profile plots revealed a number of interesting patterns. Caring for a child with a mental illness (N = 44, M = 45.06, SD = 19.75) or with multiple disabilities (N = 52, M = 46.51, SD = 20.53) was associated with the lowest PWI scores. Caring for parents with a chronic condition (N = 18, M = 48.97, SD = 20.61) or a physical disability (N = 12, M = 49.88, SD = 21.80) was also related to very low levels of wellbeing. The well-being of those caring for a spouse did not differ much as a function of the type of disability. Figure 1 presents a comparison of the groups reporting the lowest subjective well-being. Other care recipients have been omitted from this figure for ease of interpretation.
Discussion The first objective of this study was to examine the subjective well-being of informal carers as a general sample. In comparison with the general Australian population, carers reported significantly lower levels of subjective wellbeing as measured by the Personal Wellbeing Index (PWI). This pattern was observed for the PWI summary score and for all individual life domains. The normative PWI range of the general population is found at 73.6–76.6 points [21], and the value of 58.5 observed among carers represents the
Table 3 PWI and life domain covariate analyses Variable
Carers n = 3,495
General population n = 2,991
M
M
SD
F
p
Partial Eta2
SD
PWI
58.38
21.14
75.35
12.59
921.00
\.001
.12
Standard of living
63.85
24.55
78.29
15.87
406.81
\.001
.06
Health
54.78
24.54
73.60
18.90
708.31
\.001
.10
Achievement
54.39
25.69
73.09
18.07
851.52
\.001
.12
Relationships
58.48
28.92
78.87
21.02
634.47
\.001
.09
Safety
67.78
25.46
80.86
16.88
290.80
\.001
.04
Community
56.46
27.17
71.90
18.76
544.85
\.001
.08
Security
54.97
28.69
70.84
19.44
390.35
\.001
.06
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Qual Life Res Fig. 1 Interactions between caring relationship and type of disability on PWI score
70 65
Child
63.3
63.05
Parent
Spouse
63.4
60.26
60
58
60
55.08
54.98
55 50
49.88
48.97
46.51
45.06 45 40 Chronic condition
lowest level of well-being found within demographic population sub-groups, such as people with very low income or those who live alone, in the 13 years of the Australian Unity Wellbeing Index [31]. This finding, of very low subjective well-being, is consistent with previous studies, which have reported on carers of older adults [5] and of children with an intellectual disability [4]. However, the present study extends these findings by considering more than one group of informal carers, while controlling for socio-demographic factors that are known to influence subjective well-being. Given these results, there is a good indication that low levels of subjective well-being reported by carers are not simply a consequence of the socio-demographic circumstances they face. Rather, this may be a reflection of how harmful the specific challenges of assuming a caring role are to the carer’s psychological well-being. When considering that the majority of caregivers reported experiencing symptoms of stress in the moderateto-extremely severe ranges, this would suggest the occurrence of a wear and tear effect, where stressors have become so potent that they overwhelm coping resources [9, 19, 20]. Consistent with predictions from homeostasis theory [21], when resources are overwhelmed, affect and subjective well-being will be negatively affected and fall below the set point range. Typically, when negative life events occur, subjective well-being will fluctuate; however, it inevitably returns to approximate the original set point [32–35]. In the case of informal carers, the present finding, paired with other results [4, 5], demonstrate that the subjective well-being of carers appears to be chronically low, which is indicative of homeostatic defeat [21]. The second study objective was to evaluate how the dyadic interaction between the caring relationship and the type of disability being managed affected subjective wellbeing and symptoms of depression and stress. The results demonstrated that when socio-demographic variables and hours of caring were controlled for, an interaction effect between the caring relationship and the type of disability on subjective well-being was revealed. Carers who
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Mental illness
Physical disability
Multiple conditions
supported a child with a mental illness or multiple types of disabilities were found to report the lowest level of subjective well-being in comparison with any other carer groups. This presents a unique finding in the literature. Most studies have reported that caring for a spouse or someone with dementia are factors typically associated with lower levels of well-being and greater burden [5, 7, 9, 12, 14, 18]. However, they have not considered the effects of this dyadic relationship. Interestingly, when controlling for socio-demographic variables and hours of caring, no significant differences in symptoms of depression and stress were observed between carer groups. Although this result was unexpected, it may highlight that elevated symptoms of depression and stress are common to all who assume the informal carer role. This might also reflect the importance of the intensity of care on symptoms of depression and stress that has been revealed in previous studies. For example, behavioural problems exhibited by care recipients have consistently been shown to play an important role in the distress and burden experienced by carers [3, 8, 9]. However, information assessing the frequency and intensity of behaviour problems was not available in the present study and should be included in future research. Despite the fact that no differences in symptoms of depression or stress were found, there appears to be something unique about caring for a child with a mental illness that profoundly affects subjective well-being. While previous work has documented the distress and social stigma experienced by supporting someone with a mental illness [11, 36], the presence of additional factors such as the sense of complex, non-finite grief [37, 38] and challenges of raising a child with a disability [39, 40] may overwhelm coping resources designed to maintain subjective well-being. Another reason for the effect of caring on subjective well-being involves consideration of the individual life domains that contribute to overall Personal Wellbeing Index scores. Of the seven life domains assessed, the discrepancy between carers and the normative population was most evident for satisfaction with achievement in life. The
Qual Life Res
pursuit of meaningful goals that produce fulfilment has been strongly associated with positive subjective wellbeing [41–43], and indeed, this domain contributes the most unique variance to general life satisfaction [29]. Accordingly, when this domain of life is affected due to challenges associated with caring for a child with a mental illness, subjective well-being suffers as a consequence. Looking to the future, it is recommended that research continues to explore relationships between risk factors that are associated with low carer subjective well-being. Given such variables do not occur in isolation in the real world, it is important to understand these factors and their relative strength so that interventions can be developed to prevent the loss of subjective well-being. Continuing this line of inquiry will also serve to address an important limitation of the present study. The survey response rate of 37 % may not be representative of all carers in general. For example, those who are engaged in an extremely intensive caring role may not have been able to complete the questionnaire. As such, further research is warranted to gain a more complete picture of the caring experience. Another important avenue that warrants expansion is to gain an understanding of the most effective resources that could serve to protect against low subjective well-being. Insight into the relative influence of challenges and resources would allow the identification of individuals at risk, with the possibility of referral to appropriate health services before succumbing to clinical levels of depression and/or stress. Subsequent interventions should be aimed at equipping carers with a variety of education, coping skills and social resources, rather than focusing on momentary escape strategies, such as respite. In summary, the informal carers in this study reported the lowest level of subjective well-being in the general Australian population recorded to date. The dyadic interaction between the caring relationship and type of disability was significantly related to the subjective well-being of informal carers. Individuals who provided care for children with a mental illness or multiple types of disabilities were associated with the most detrimental outcomes for subjective well-being when compared to other carer groups. Urgent progress needs to be made to support the people who assume this caring role, and relieve them of their status as the group with the lowest levels of wellbeing in the Australia.
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The dyadic interaction of relationships and disability type on informal carer subjective well-being Thomas Hammond • Melissa K. Weinberg Robert A. Cummins
•
Accepted: 6 November 2013 Ó Springer Science+Business Media Dordrecht 2013
Abstract Purpose Care-related factors have frequently been associated with elevated levels of distress and diminished subjective well-being. However, these variables have traditionally been considered independently. The objectives of this study were to explore the subjective well-being of informal carers in Australia and to specifically examine the effect of the dyadic interaction between the caring relationship and type of disability on the subjective well-being of informal carers. Methods Informal carers (n = 4,096) completed the Personal Wellbeing Index (PWI) and Depression and Stress Scales. Analysis of covariance was used to compare the subjective well-being of carers to the general population while controlling for socio-demographic factors. To examine the dyadic relationship, a multivariate analysis of covariance was employed. Results After socio-demographic variables were controlled, informal carers reported significantly lower PWI scores compared to the general population. The results of the multivariate analysis of covariance revealed a significant interaction between the caring relationship and the type of disability being managed on subjective well-being. No differences were found for symptoms of depression and stress. Conclusions The findings of this study imply that the detrimental effect of caring on subjective well-being is magnified for carers who support a child with a mental illness or multiple types of disabilities. These carers displayed the lowest levels of subjective well-being, highlighting the dyadic effects of care-related variables. Consideration of T. Hammond (&) M. K. Weinberg R. A. Cummins Deakin University, School of Psychology, Burwood, VIC, Australia e-mail: [email protected]
these factors is essential to target effective intervention programs for those most at risk of diminished well-being. Keywords Informal carers Subjective well-being Depression Stress
Introduction An informal carer is a person who provides unpaid support to family members or friends, who have a disability, or are frail and older [1]. Such care involves assistance with varied aspects of daily life, but most commonly includes physical and personal care. Informal carers are also commonly responsible for the daily management of medical conditions, and the provision of emotional and financial support [1]. Assuming this role can present as a stressful experience that can negatively affect the psychological health of care providers [2, 3]. It has been well documented that informal carers report increased symptoms of depression, psychological distress and lower perceptions of selfefficacy and subjective well-being [3–7]. Models developed to account for these outcomes include general risk factors such as age, income and gender [8] but often focus on variables unique to the caring context because of their consistent association to distress and low subjective well-being [9]. One care-related variable often associated with negative carer outcomes is the intensity of care required. The amount of time spent caring, number of caring tasks and behavioural problems displayed by care recipients have consistently shown to have important implications for carer distress levels and perceived burden. Across studies, a positive relationship has emerged; increased care intensity is associated with higher distress levels [3, 8, 9].
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Other studies have focused on the relationship to the care recipient or the type of disability being managed as risk factors for carer distress, although their association to distress remains less clear. For instance, on an individual level, severe psychological distress has been commonly found among carers of people with dementia [2], eating disorders, [10] schizophrenia, [11] and physical or intellectual impairments [4, 5]. However, when comparing the effects of numerous disability types on caregiver burden and subjective well-being, different findings emerge. Comparative analyses have demonstrated that when controlling for sociodemographic factors and care intensity, caregivers who supported someone with cancer or dementia reported higher levels of burden and psychological distress compared to caregivers who supported someone with a chronic health condition or frail older individuals [12]. With respect to the caring relationship, immediate family members tend to report more stress and sadness when compared to non-immediate family carers [13]. When considered individually, spousal carers and parental carers of children and adolescents have been shown to report high levels of negative affect and low levels of subjective well-being [4, 7, 10, 14, 15]. However, comparative studies present a much more complex situation where certain relationships have increasingly adverse effects on informal carers. Early studies indicated that caring for a parent is associated with elevated stress levels [16] and burden [17]. More, recent evidence suggests that caring for a spouse poses the greatest risk of burden, depression and diminished subjective well-being when compared to caring for a child, adult child and parent [5, 7, 9, 14, 18]. While these studies provide valuable information about each unique caring context, they do not consider how the dyadic association between caring relationships and the type of disability may affect subjective well-being. Recent evidence suggests that when considered individually, each variable may overestimate actual effects on carer outcomes [8]. Furthermore, these variables may have an additive effect, increasing the risk of low subjective well-being for specific carer groups. Thus, to fully understand the consequences of providing informal care on subjective wellbeing, variables assessing both the caring relationship and type of disability should be considered simultaneously [8]. To appreciate how this dyadic relationship may affect subjective well-being, two theories may provide valuable insights. The wear and tear hypothesis of caregiving suggests that if stressors related to care provision exceed the coping resources possessed by the carer, the carer will likely experience a decrease in subjective well-being [9, 19, 20]. This intuitive proposition closely aligns with other perspectives of happiness and quality of life, such as homeostasis theory. Within this theory, under conditions of
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zero threat, well-being is positive and kept within a narrow set point range. When challenged, the system strives to keep well-being steady. However, when the strength of challenges becomes too great, well-being is likely to suffer [21]. Past research has specifically identified the caring relationship and type of disability being managed as unique and significant challenges. When combined together, much like in the real world, the sum may create a situation that can overwhelm coping resources. As such, carers in the most aversive circumstances may demonstrate the lowest levels of subjective well-being. Therefore, the present study aims to further understand how the dyadic interaction between caring relationship and the type of disability affects the subjective well-being of carers and contributes to their reported symptoms of depression and stress. To accomplish this, two primary objectives have been established. This first is to expand upon previous findings, focused on carers of children [4], to compare the subjective well-being of a sample of carers to the general population, while controlling for a number of socio-demographic factors shown to affect well-being. The second is to evaluate the effects of the interaction between the caring relationship and the type of disability on carer subjective well-being and symptoms of depression and stress. Based on this information, carers most at risk for diminished well-being will be identified. Based on these objectives, it is hypothesized that after controlling for age, gender and income, a population sample of informal carers will display levels of subjective well-being that fall well below the normative range of the general population. With respect to the dyadic relationship, it is hypothesized that the type of disability and caring relationship will demonstrate a significant interaction effect when evaluating subjective well-being and symptoms of depression and stress. Furthermore, it is anticipated that carers supporting a spouse with multiple types of disabilities will demonstrate the lowest levels of subjective wellbeing.
Method Procedure This study used cross-sectional data collected in 2007 from survey 17 of the Australian Unity Wellbeing Index (AUWI). Survey 17 was developed in collaboration with Carers Australia, a national body representing informal, unpaid carers [1]. Approximately 11,000 questionnaires were distributed to a random sample of carers identified by the Carers Australia database, who were over the age of 18 years. Recipients were asked to complete questions assessing subjective well-being, symptoms of depression and stress,
Qual Life Res
hours spent caring, who they provided care for and other demographic variables. The response rate was 37 % with 4,096 surveys returned by participants. No data were available for the carers who chose not to participate in the study. Participants The study sample comprised 827 (20 %) male and 3,134 (79 %) female informal carers. They were aged 18 to 94 years old, with a mean age of 60.10 years (SD = 13.15). Of these carers, 90 % identified themselves as the primary care provider. Duration of support ranged from less than 1 h to greater than 12 h per day. Participants reported providing care for children, adult children, grandchildren and parents but most often provided care for their spouse (40 %). The types of disabilities being managed included chronic medical conditions, physical disabilities, mental illness or frail older adults. Full details are presented in Table 1. Measures Subjective well-being was measured using the Personal Wellbeing Index—adult version (PWI) [22]. This scale is a domain-based, seven-item measure of well-being assessing the level of satisfaction with: standard of living, health, achieving in life, relationships, safety, community connectedness and future security. Respondents rate their satisfaction on an 11-point end-defined scale [23] with anchors of (0) completely dissatisfied to (10) completely satisfied. Domain scores are then averaged, and all results are converted to a percentage point score from zero to 100 [22]. The PWI displays adequate internal consistency (a = .70 to .85), and test–retest reliability over a two-week period has been reported as .84 [24]. Self-reported symptoms of depression and stress were assessed using the depression and stress subscales of Depression, Anxiety and Stress Scales (DASS) 21-item version. The anxiety scale was not included in the present study as these items emphasize acute physiological responses to fear rather than chronic over-arousal and difficulty meeting taxing life demands [25]. Items were converted to an 11-point scale ranging from (0) did not apply to (10) applied a lot. This scale was adopted to enhance scale sensitivity without systematically compromising scale reliability [26]. Depression and stress severity cut-off scores were then recalculated to reflect the new scale ratings (see Table 2). Demographic variables were collected to assess the respondent’s age, gender and level of income. Care-related variables assessed hours spent caring, the type of disability being cared for and the relationship to the care recipient. Hours of caring were measured by six time periods ranging from less than 1 h per day to providing care almost all of the
time. To determine the caring relationship, categorical response options were provided where participants identified caring for their spouse, children, parents or multiple family members. In this same format, they also indicated the type of disability being cared for, including chronic health conditions, someone who was frail and older, physical disability, mental illness or more than one type of disability. Data analysis Prior to analysis, the data were checked for acquiescent responses, as recommended by the PWI manual [22]. As a consequence, 59 respondents were eliminated due to consistent PWI ratings as either 0 or as 10 across all seven domains. These responses provide no variance, and this pattern of responding is indicative of a response set, typical of respondents who fail to understand the task or are unwilling to provide valid data. Data were then analysed using SPSS version 21.0 and screened for missing values. Missing values were found to be random, and cases were excluded pairwise in subsequent analyses. Prior to analyses, the assumptions of linearity, normality and homoscedasticity were assessed. The PWI, depression and stress scales violated statistical tests of normality. Due to the large sample size, both the Kolmogorov–Smirnov and Shapiro–Wilk tests achieved significance. Subsequent inspection of the normal probability plots revealed distributions that closely approximated normality and were considered acceptable. Nevertheless, given the large sample size in the present study, deviations from normality would not make a substantive difference to the analyses [27]. To test for differences in subjective well-being, data collected from survey 27 and 28 of the Australian Unity Wellbeing Index [28, 29] served as the general population comparison group. Initially, independent t tests were used to determine whether differences in PWI scores could be observed between carers and the general population. Following this procedure, an ANCOVA was completed to control for the well-documented effects of age, gender and income on PWI [30]. To determine the effects of the caring relationship and the type of disability being managed on carer PWI and symptoms of depression and stress, a MANCOVA was conducted. Given the relationship between hours spent caring and well-being has been demonstrated [3, 8], it was held constant along with gender, age and income.
Results Personal Wellbeing Index The well-being of the carer sample when compared to a sample of the general Australian population was first
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Qual Life Res Table 1 Outcome scores of informal carers by demographic and care-related variables Variable
N
%
PWI
Depression
Stress
M
SD
M
SD
M
SD
Demographic variable Gender Male Female
823
20.90
61.70
20.43
35.23
26.32
44.81
28.21
3,113
79.10
57.64
21.18
39.06
27.01
50.88
27.32
Age 18–35
129
3.20
54.21
20.71
37.78
26.89
56.48
27.51
36–45 46–55
468 809
11.60 20.00
52.72 53.43
21.08 20.84
42.32 41.66
26.85 27.22
55.94 53.80
26.14 26.66
56–65
1,175
29.10
58.37
20.82
37.98
26.59
49.76
27.09
66–75
831
20.60
61.98
20.47
35.81
26.81
45.25
27.92
75?
554
13.70
68.51
18.27
33.39
25.98
41.12
27.99
774
19.20
54.17
23.11
42.52
28.81
50.23
28.96
$15,000–$30,000
1,322
32.70
57.72
21.35
38.39
26.61
48.30
27.33
$31,000–$60,000
1,019
25.20
59.53
19.95
37.81
26.24
50.65
27.54
$61,000–$90,000
359
8.90
61.48
19.55
35.46
25.58
49.17
27.28
$91,000–$120,000
176
4.40
61.06
19.73
33.60
24.46
51.30
26.10
$121,000–$150,000
77
2.00
63.85
17.36
36.70
26.24
53.53
24.65
$151,000?
43
1.10
77.07
11.31
21.36
17.69
45.02
28.00
\1 h 1–2 h
141 255
3.70 6.90
69.16 65.32
16.63 17.83
24.46 28.82
20.81 23.71
34.35 39.00
24.90 25.66
3–6 h
630
16.70
62.41
18.83
33.80
25.09
44.90
26.02
Household income \$15,000
Care-related variables Hours caring
7–12 h
564
14.90
58.32
20.72
38.50
26.46
50.06
26.00
[12 h
560
15.10
56.37
21.66
39.08
26.71
52.86
27.67
1,567
42.70
55.31
21.87
42.56
27.62
53.69
27.94
528
13.90
57.77
20.82
38.49
27.64
50.59
27.92 27.31
Almost always Caring relationship Parent Spouse
1,523
40.60
61.55
20.10
37.21
26.23
47.34
Child
497
12.50
52.91
20.56
41.43
26.26
55.83
25.77
Adult child
611
16.10
57.72
22.26
36.99
27.90
48.59
28.48
Grandchild
23
0.70
65.77
17.27
29.45
23.57
45.38
32.62
Neighbour
69
1.90
59.67
20.22
34.66
27.85
42.68
28.67
Other
68
1.80
63.66
22.25
33.39
25.91
44.14
29.37
477
12.60
54.30
21.79
41.71
26.91
53.34
26.70
Chronic condition Mental illness
294 466
9.00 13.90
61.94 58.19
20.35 20.84
37.27 39.80
27.04 25.97
47.62 50.19
28.16 26.64
Physical disability
1,073
32.10
59.17
20.91
36.04
26.73
48.88
27.60
329
9.80
63.29
20.09
34.05
26.14
44.41
27.57
1,152
35.10
56.78
21.36
40.82
27.29
51.83
27.58
Multiple family members Type of disability
Aged & Frail Multiple disabilities
explored. The average PWI score reported by informal carers (n = 3,824) was 58.51 (SD = 21.10). This value was significantly lower than the average PWI of the general population (n = 3,754, M = 75.55, SD = 12.96),
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[t (6,367) = 42.42, p \ .001]. Informal carers also reported significantly lower scores on each domain of the PWI compared to the general population. However, given the well-documented effects of gender, age and income on
Qual Life Res Table 2 Prevalence and severity of depression and stress symptoms Variable
N
%
Mean
SD
DASS depression symptoms Normal (0–21)
1,271
35.0
7.90
6.70
320
8.8
26.52
2.51
Mild (22–31) Moderate (32–48)
675
18.6
40.54
4.57
Severe (49–64)
669
18.4
55.97
4.10
Extremely severe (65?)
699
19.2
78.91
9.88
1,175
29.1
14.75
10.29
354
8.8
38.81
2.92
DASS stress symptoms Normal (0–33) Mild (34–43) Moderate (44–60)
812
20.1
52.60
4.77
Severe (61–79) Extremely severe (80?)
917 612
22.7 15.2
69.43 88.45
5.26 6.17
PWI scores, a subsequent covariate analysis was conducted to hold these variables constant. As shown in Table 3, informal carers still reported significantly lower (p \ .001) PWI and domain scores when controlling for a number of important socio-demographic factors. Although comparative data from the general population sample were not available for depression and stress scores, the DASS cut-off points were used as an indication of symptom severity [25]. As shown in Table 2, more than half (56 %) of carers reported moderate-to-extremely severe symptoms of depression, with the average depression score falling within the moderate range (M = 38.20, SD = 26.87). With respect to stress symptoms, 60 % of carers reported moderate-to-extreme stress symptoms, with the average stress score observed in the moderate range (M = 49.51, SD = 27.63). The second study objective was to determine the effects the caring relationship and the type of disability being managed on carer subjective well-being and symptoms of depression and stress. Table 1 provides an overview of descriptive statistics for each demographic and care-related variable. A subsequent MANCOVA was then conducted to
determine the effects of the caring relationship and type of disability on PWI, depression and stress symptoms. Hours spent caring, age, gender and income served as covariates. The assumption of sphericity was met, as indicated by a non-significant Box’s M (p = .092). The MANCOVA revealed no significant multivariate effects. However, there was a significant univariate effect of the interaction between the caring relationship and the type of disability being managed on the PWI [F (27, 2,751) = 641.005, p \ .05], even after the application of a Bonferroni correction. No significant differences were found among symptoms of depression or stress. To further explore the interaction between the caring relationship and disability type, profile plots revealed a number of interesting patterns. Caring for a child with a mental illness (N = 44, M = 45.06, SD = 19.75) or with multiple disabilities (N = 52, M = 46.51, SD = 20.53) was associated with the lowest PWI scores. Caring for parents with a chronic condition (N = 18, M = 48.97, SD = 20.61) or a physical disability (N = 12, M = 49.88, SD = 21.80) was also related to very low levels of wellbeing. The well-being of those caring for a spouse did not differ much as a function of the type of disability. Figure 1 presents a comparison of the groups reporting the lowest subjective well-being. Other care recipients have been omitted from this figure for ease of interpretation.
Discussion The first objective of this study was to examine the subjective well-being of informal carers as a general sample. In comparison with the general Australian population, carers reported significantly lower levels of subjective wellbeing as measured by the Personal Wellbeing Index (PWI). This pattern was observed for the PWI summary score and for all individual life domains. The normative PWI range of the general population is found at 73.6–76.6 points [21], and the value of 58.5 observed among carers represents the
Table 3 PWI and life domain covariate analyses Variable
Carers n = 3,495
General population n = 2,991
M
M
SD
F
p
Partial Eta2
SD
PWI
58.38
21.14
75.35
12.59
921.00
\.001
.12
Standard of living
63.85
24.55
78.29
15.87
406.81
\.001
.06
Health
54.78
24.54
73.60
18.90
708.31
\.001
.10
Achievement
54.39
25.69
73.09
18.07
851.52
\.001
.12
Relationships
58.48
28.92
78.87
21.02
634.47
\.001
.09
Safety
67.78
25.46
80.86
16.88
290.80
\.001
.04
Community
56.46
27.17
71.90
18.76
544.85
\.001
.08
Security
54.97
28.69
70.84
19.44
390.35
\.001
.06
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Qual Life Res Fig. 1 Interactions between caring relationship and type of disability on PWI score
70 65
Child
63.3
63.05
Parent
Spouse
63.4
60.26
60
58
60
55.08
54.98
55 50
49.88
48.97
46.51
45.06 45 40 Chronic condition
lowest level of well-being found within demographic population sub-groups, such as people with very low income or those who live alone, in the 13 years of the Australian Unity Wellbeing Index [31]. This finding, of very low subjective well-being, is consistent with previous studies, which have reported on carers of older adults [5] and of children with an intellectual disability [4]. However, the present study extends these findings by considering more than one group of informal carers, while controlling for socio-demographic factors that are known to influence subjective well-being. Given these results, there is a good indication that low levels of subjective well-being reported by carers are not simply a consequence of the socio-demographic circumstances they face. Rather, this may be a reflection of how harmful the specific challenges of assuming a caring role are to the carer’s psychological well-being. When considering that the majority of caregivers reported experiencing symptoms of stress in the moderateto-extremely severe ranges, this would suggest the occurrence of a wear and tear effect, where stressors have become so potent that they overwhelm coping resources [9, 19, 20]. Consistent with predictions from homeostasis theory [21], when resources are overwhelmed, affect and subjective well-being will be negatively affected and fall below the set point range. Typically, when negative life events occur, subjective well-being will fluctuate; however, it inevitably returns to approximate the original set point [32–35]. In the case of informal carers, the present finding, paired with other results [4, 5], demonstrate that the subjective well-being of carers appears to be chronically low, which is indicative of homeostatic defeat [21]. The second study objective was to evaluate how the dyadic interaction between the caring relationship and the type of disability being managed affected subjective wellbeing and symptoms of depression and stress. The results demonstrated that when socio-demographic variables and hours of caring were controlled for, an interaction effect between the caring relationship and the type of disability on subjective well-being was revealed. Carers who
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Mental illness
Physical disability
Multiple conditions
supported a child with a mental illness or multiple types of disabilities were found to report the lowest level of subjective well-being in comparison with any other carer groups. This presents a unique finding in the literature. Most studies have reported that caring for a spouse or someone with dementia are factors typically associated with lower levels of well-being and greater burden [5, 7, 9, 12, 14, 18]. However, they have not considered the effects of this dyadic relationship. Interestingly, when controlling for socio-demographic variables and hours of caring, no significant differences in symptoms of depression and stress were observed between carer groups. Although this result was unexpected, it may highlight that elevated symptoms of depression and stress are common to all who assume the informal carer role. This might also reflect the importance of the intensity of care on symptoms of depression and stress that has been revealed in previous studies. For example, behavioural problems exhibited by care recipients have consistently been shown to play an important role in the distress and burden experienced by carers [3, 8, 9]. However, information assessing the frequency and intensity of behaviour problems was not available in the present study and should be included in future research. Despite the fact that no differences in symptoms of depression or stress were found, there appears to be something unique about caring for a child with a mental illness that profoundly affects subjective well-being. While previous work has documented the distress and social stigma experienced by supporting someone with a mental illness [11, 36], the presence of additional factors such as the sense of complex, non-finite grief [37, 38] and challenges of raising a child with a disability [39, 40] may overwhelm coping resources designed to maintain subjective well-being. Another reason for the effect of caring on subjective well-being involves consideration of the individual life domains that contribute to overall Personal Wellbeing Index scores. Of the seven life domains assessed, the discrepancy between carers and the normative population was most evident for satisfaction with achievement in life. The
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pursuit of meaningful goals that produce fulfilment has been strongly associated with positive subjective wellbeing [41–43], and indeed, this domain contributes the most unique variance to general life satisfaction [29]. Accordingly, when this domain of life is affected due to challenges associated with caring for a child with a mental illness, subjective well-being suffers as a consequence. Looking to the future, it is recommended that research continues to explore relationships between risk factors that are associated with low carer subjective well-being. Given such variables do not occur in isolation in the real world, it is important to understand these factors and their relative strength so that interventions can be developed to prevent the loss of subjective well-being. Continuing this line of inquiry will also serve to address an important limitation of the present study. The survey response rate of 37 % may not be representative of all carers in general. For example, those who are engaged in an extremely intensive caring role may not have been able to complete the questionnaire. As such, further research is warranted to gain a more complete picture of the caring experience. Another important avenue that warrants expansion is to gain an understanding of the most effective resources that could serve to protect against low subjective well-being. Insight into the relative influence of challenges and resources would allow the identification of individuals at risk, with the possibility of referral to appropriate health services before succumbing to clinical levels of depression and/or stress. Subsequent interventions should be aimed at equipping carers with a variety of education, coping skills and social resources, rather than focusing on momentary escape strategies, such as respite. In summary, the informal carers in this study reported the lowest level of subjective well-being in the general Australian population recorded to date. The dyadic interaction between the caring relationship and type of disability was significantly related to the subjective well-being of informal carers. Individuals who provided care for children with a mental illness or multiple types of disabilities were associated with the most detrimental outcomes for subjective well-being when compared to other carer groups. Urgent progress needs to be made to support the people who assume this caring role, and relieve them of their status as the group with the lowest levels of wellbeing in the Australia.
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