Volume 90, Issue 6 , Pages 947-955, June 2009
Family Functioning Is Associated With Depressive Symptoms in Caregivers of Acute Stroke Survivors
Article Outline
Abstract
Epstein-Lubow GP, Beevers CG, Bishop DS, Miller IW. Family functioning is associated with depressive symptoms in caregivers of acute stroke survivors.
Objective
To determine whether family functioning is uniquely associated with caregiver depressive symptoms in the immediate aftermath of stroke.
Design
Cross-sectional data from the baseline assessment of an intervention study for stroke survivors and their families.
Setting
Neurology inpatient service of a large urban hospital.
Participants
Stroke survivors (n=192), each with a primary caregiver. The mean age of stroke survivors was 66 years, and most, 57%, were men (n=110). The mean age of caregivers was 57 years, and 73% (n=140) of the caregivers were women. Eighty-five percent of caregivers were white.
Interventions
Not applicable.
Main Outcome Measures
Measures were chosen to assess caregivers' depressive symptoms (Centers for Epidemiologic Studies Depression Scale), family functioning (Family Assessment Device), and additional factors such as health status (Medical Outcomes Study 36-Item Short-Form Health Survey) and stroke survivors' cognitive abilities (modified Mini-Mental State Examination) and functional impairments (FIM and Frenchay Activities Index).
Results
Depressive symptoms were mild to moderate in 14% and severe in 27% of caregivers. Family functioning was assessed as unhealthy in 34% of caregiver-patient dyads. In statistical regression models, caregiver depression was associated with patients' sex, caregivers' general health, and family functioning.
Conclusions
Forty-one percent of caregivers experienced prominent depressive symptoms after their family member's stroke. Higher depression severity in caregivers was associated with caring for a man, and having worse health and poor family functioning. After stroke, the assessment of caregivers' health and family functioning may help determine which caregivers are most at risk for a depressive syndrome.
Key Words: Depression, Family relations, Rehabilitation, Stroke
List of Abbreviations: CES-D, Centers for Epidemiologic Studies Depression Scale, FAD, Family Assessment Device, FAI, Frenchay Activities Index, GDS, Geriatric Depression Scale, 3MS, modified Mini-Mental State Examination, NIHSS, National Institutes of Health Stroke Scale, OR, odds ratio, SF-36, Medical Outcomes Study 36-Item Short-Form Health Survey
STROKE IS THE THIRD leading cause of death in the United States and a leading cause of long-term disability.1 High-quality treatment2 and rehabilitation3 begin with evidence-based interventions for acute stroke.4, 5 Recommendations typically focus on patients' medical issues while acknowledging that family caregivers benefit from education about the recovery process; however, specific evidence-based suggestions for caregivers have been sparse. This is concerning because the stroke survivors' impairment and dependency often result in family caregivers feeling overwhelmed by new responsibilities; hence, there is now growing interest regarding the inclusion of caregivers in recommendations for stroke treatment and rehabilitation, and determining which evidence-based interventions should be endorsed for caregivers is imperative.6 This article presents data suggesting that the stroke survivor's family system may affect caregiver depression, an important public health concern in the aftermath of stroke.7
Assessing for depression in patients8, 9 and caregivers7, 10 during the acute stroke rehabilitation period is essential because untreated depressive symptoms can be associated with pronounced functional impairment.11 The prevalence of significant depressive symptoms in caregivers of stroke survivors has been estimated to be between 34% and 52%,12 which is similar to the prevalence in caregivers of patients with dementia13 and significantly greater than the depression reported in the general population.14 Persons who become depressed as they start caregiving are likely to remain depressed,7, 15 and continued emotional distress is related to increased feelings of caregiver burden.16 Given this risk of persistent or worsening symptoms, it is important to identify caregiver and patient factors related to caregiver depression and burden that may be amenable to intervention, ideally at the start of and concurrently with stroke rehabilitation.12, 17
There are a limited number of studies regarding caregiver depression and burden in the immediate aftermath of stroke. The cross-sectional and longitudinal samples that collected acute-phase data produced the following results. Cross-sectional reports have suggested that stroke severity is predictive of caregiver burden,18 and baseline caregiver factors such as lower life satisfaction, poor physical functioning, and reduced social support may increase risk for depressive symptoms.19 Longitudinal samples that included a baseline assessment within 10 days of stroke onset have reported that baseline anxiety in both patients and caregivers, along with caregiver depressive symptoms and poor family support, are predictive of subsequent caregiver burden,20 and passive coping style and relationship disharmony at baseline are predictive of caregiver burden and depression after 1 year.21 Although these acute-phase data are sparse, they suggest a need for increased scrutiny regarding factors that may be associated with caregivers' depressive symptoms immediately after stroke. This need is further supported by investigations of caregiver functioning during stroke rehabilitation.
Moderate data exist regarding caregiver depression and burden beyond the acute phase of stroke; cross-sectional data are presented first, followed by results from longitudinal investigations. Cross-sectional studies suggest that the first month at home after stroke can be the most difficult for caregivers22 because of lack of knowledge23, 24 or skills25 related to the management of problems associated with patients' safety, activities of daily living, and changes in cognitive and emotional functioning after stroke.26 Caregivers with a strong sense of coherence who are more able to respond to novel stressors may be protected against experiencing burden and depression in the initial month after stroke.27 As the time after stroke increases, cross-sectional studies suggest that stroke severity and patient behavior problems increase the risk for caregiver depression28, 29, 30, 31 and burden.32 Additional factors affecting caregiver health during the first year may be low self-esteem, high threat appraisal,33 and anxiety.34 Cross-sectional studies conducted after several years of caregiving report that patient characteristics such as persistent stroke-related disabilities continue as risks for increased caregiver burden16, 35 along with caregiver-associated risk factors including loneliness, disability, and the amount of effort required to provide care.16
Of the longitudinal investigations of poststroke caregiver depression, most studies were initiated during the inpatient rehabilitation process, approximately 2 to 3 weeks after acute stroke, with follow-up assessment of caregivers at home 4 to 12 months later. These investigations report a higher risk for depression in white caregivers than black caregivers10 and increased risk for burden in women compared with men in all cultural contexts where this has been investigated,36, 37, 38, 39 with Korean daughters-in-law being at particularly high risk.40 Additional demographic risk factors for depression may include age,15 marital status,41 and income.15 Caregiver health15, 38 and poor social support19, 42 have also been shown to be predictive of depression. Other factors that may be related to caregiver depression over time include baseline depression7, 38, 41 and family functioning.43
In summary, the literature to date shows that caregivers of stroke survivors are at increased risk for depressive and other adverse symptoms, which supports the assertion that caregivers should be assessed concurrently during the acute treatment and rehabilitation of stroke survivors. However, if contemporary studies and practice are tending toward parallel assessments and interventions for patients and caregivers, it is important that variables such as family and relationship functioning be considered, and the literature to date remains limited regarding family variables related to caregiving during the immediate aftermath of stroke. We were able to identify only 3 studies with caregiver data from the acute stroke period, as mentioned, and each of these investigations found caregiver burden or depression to be related to family factors such as relationship harmony,21 general social support,19 and family support.20 While these studies do address aspects of family life, none of them focused on specific dimensions of family functioning known to relate to health outcomes, although the results do imply that family variables play a role during acute stroke. This implication has been addressed in other studies not conducted during the acute phase of stroke, in which it has been suggested that family interaction might predict length of hospital course44 and treatment adherence after stroke.45 More recently, contemporary investigations and expert opinion continue to support the concept that family conflict has a significant negative impact on the recovery of patients with stroke46 and that rehabilitation efforts should directly address family concerns beginning immediately after stroke6, 47; however, despite this agreement between preliminary evidence and expert opinion, few investigations of stroke caregiving have used a comprehensive measure of family functioning, and none has employed such a measure during a baseline assessment in the acute stroke period.
The term family functioning refers in general to how members of a family communicate with one another and work together. As used in this study, family functioning refers to those specific dimensions of family life that have been shown to affect physical and emotional health outcomes. There are several ways to measure family functioning after stroke,48, 49, 50 and one robust measure is the FAD.51 The FAD assesses 6 dimensions of family life—problem-solving, communication, roles, affective responsiveness, affective involvement, and behavioral control—plus a seventh assessment of general functioning. Using the FAD, it has been shown that family functioning can affect the course and severity of several psychiatric illnesses,52 including major depression.53 In the context of stroke, the FAD has been used to describe how family functioning can affect both patients and caregivers. In small samples, family functioning has been shown to relate to the health care use, health status, and functional independence of patients with stroke, and also to depression in both patients and caregivers.43, 54 Family functioning can worsen after stroke as families struggle with communication and problem-solving,55 and this may increase the risk for depression in both patients and caregivers.
Whether or not family functioning is associated with caregiver depressive symptoms immediately after stroke is the primary question under investigation in this report. The preponderance of evidence suggests that the relationship between stroke survivor and caregiver should be assessed early to identify potential deficits and implement targeted interventions; however, investigations to date have rarely used a comprehensive measure of family functioning. To our knowledge, the current report is the first to include family functioning data, with a measure such as the FAD, collected in the acute stroke period. In this cohort of 192 stroke caregiver-patient dyads who were assessed 5 to 10 days after acute stroke, we hypothesized that the prevalence of depressive symptoms in caregivers of stroke survivors would be similar to previous reports regarding stroke caregiving, and that symptom severity would be associated with demographic variables such as caregiver age, sex, and race, as well as with stroke severity and family functioning.
Methods
Participants and Procedure
Participants for this study were enrolled in a longitudinal investigation of stroke.56 All procedures were approved by the internal review boards at participating hospitals, and all participants (patients and caregivers) provided informed consent. Participants were recruited while patients were hospitalized for acute stroke, and baseline measures were completed within 2 weeks of the stroke, prior to randomization into the experimental or control group.
Baseline data are reported for 192 caregivers and their care recipients. Two hundred eleven stroke survivors were enrolled in the longitudinal investigation; for 5 of these cases, only minimal data were available for caregivers at baseline. An additional 14 caregivers were excluded from the current study because of missing data (more than 1 item) in the primary measure of depression in caregivers. Stroke survivors met the following inclusion criteria: (1) greater than 35 years of age, (2) clinical evidence of stroke, and (3) competency to sign an informed consent form. Exclusion criteria were (1) presence of subarachnoid hemorrhage or subdural hematoma, (2) significant medical disorder severe enough to require hospitalization within the 3 months prior to stroke, (3) psychotic symptoms, (4) absence of a caregiver, (5) admittance from a nursing home, and (6) inability to communicate in English. A caregiver was defined as a person willing to provide assistance with care and living within a 30-minute drive of the patient. The following procedure was used to identify the caregiver providing most aid: (1) the survivor's spouse was chosen if the spouse able to participate; (2) if no spouse was available, a family member who was living with the patient was selected; and (3) if no coresiding family member could be identified, the family member or friend who devoted the most time to caring for the stroke survivor was asked to participate.
Measures
The included measures were a subset of those from the parent study. Variables were chosen based on previous research regarding depression and family functioning in stroke caregivers10, 57 and were grouped into 5 domains: demographics, stroke survivor characteristics, caregiver medical health, caregiver depression, and family functioning.
SociodemographicsStandard variables assessing age, sex, race, ethnicity, marital status, religion, education, and income were collected for both the caregiver and stroke survivor. The relationship between caregiver and survivor was also coded as “wife, husband, child, other adult.” Noncontinuous variables (race, marital status, religion, relationship) were recoded in a dichotomous manner (ie, spouse vs nonspouse) for data analysis.
Stroke survivor characteristicsAssessments of patients' cognition, physical functioning, psychosocial functioning, and mood were obtained. The 3MS was used to measure cognitive abilities in patients with stroke. The 3MS is a 100-point examiner-rated test that has been shown to be a valid and reliable screen for cognitive impairment.58 The 3MS assesses orientation, attention, information registration and recall, naming and other language abilities, and executive function.
Stroke severity was assessed by the NIHSS, a frequently used and well validated measure of overall stroke severity.59 This measure is a 15-item scale that produces an overall score by summing elements of the neurological examination to a maximum total of 36, with higher scores representing more severe symptoms.
Two measures were used to assess stroke survivor physical functioning. The FIM is a 12-item clinician-rated assessment of functional capacity that is valid, reliable, and widely used in investigations of rehabilitation after stroke60, 61; for this measure, the total motor score was the primary variable, with a maximum score of 24 indicating complete independence. The FIM has a relatively low ceiling for functional assessment and was primarily used to address physical functioning. Therefore, a second measure was employed: the FAI, a 15-item self-report that provides an index of functioning regarding a patient's instrumental activities of daily living in and outside the home,62 with a maximum total score of 46, and higher scores indicating greater success with activities. The FAI was completed by patients and caregivers, both reporting on the patient's activities, to yield 2 discrete assessments of activities functioning.
The measure for depression in stroke survivors was the GDS. The original GDS is self-report questionnaire with 30 items.63 Each question has a simple yes or no answer to aid persons who may have cognitive impairment, and the score is coded based on the valence of each item. This measure has been used as a screening tool for depression after acute stroke64 and has been shown to have equal validity in both nongeriatric (<65y) and older cohorts.65 Shortened versions of the GDS have been shown to be valid and reliable.66, 67 The 13-item version of the GDS68 was used in this investigation.
Caregiver medical healthThe General Health subscale of the SF-36 provided an assessment of a caregiver's medical health. The SF-36 has established reliability and validity.69 The general health subscale's maximum score is 100 and includes items such as, “I expect my health to get worse,” and, “My health is excellent.” The SF-36 was also completed by stroke survivors, reporting on their own health.
Caregiver depressionThe CES-D is a 20-item self-report questionnaire to assess depressive symptoms. A cut-off of 16 is used to separate mild depression from healthy functioning. A score of 23 or higher indicates significant depressive symptoms. The highest possible score is 60. This scale has been in use for over 20 years as a valid and reliable assessment of depressive symptoms.70 Compared with other reliable screening measures, the CES-D shows superior performance71 and is able to capture accurately a diagnosis of major depressive disorder within the past 1 month, with high sensitivity (1.0) and specificity (.876) when using the cut-off of 16 in older adults.72
Family functioningThe FAD is a 60-item self-report questionnaire designed to assess 6 specific aspects of family functioning, plus a family's general functioning. The General Functioning subscale is highly correlated with overall family functioning.52 A higher score on the FAD General Functioning subscale (highest=4.0) signifies worse family functioning. Previous research indicates that a score of 2 or less on the FAD General Functioning subscale indicates healthy functioning.51 Participants were instructed to complete the FAD in relation to the past 6 months of their relationship to the other participant enrolled in this investigation. Data from both caregiver and patient FAD General Functioning subscale were collected and are reported here. Values for the FAD General Functioning subscale were combined, and the mean FAD General Functioning subscale score was used for data analysis in the correlation and regression analyses. Use of the mean FAD General Functioning subscale is consistent with previous research.52
Statistical Analyses
Descriptive characteristics of the each variable were determined. Several t test and chi-square analyses were run to determine group differences between included and excluded participants. Bivariate correlations were assessed to identify the strength of association between the total score on the CES-D and measures from the 4 other domains: sociodemographics, patient characteristics, caregiver medical health, and family functioning. Based on the presence of a significant correlation, variables were then chosen for a linear regression model. The CES-D total score was the dependent variable. Independent variables were tested in a hierarchical manner in order to determine whether patient characteristics, caregiver medical health, and family functioning contributed to additional variance beyond that explained by other variables in earlier steps; the first level contained demographics (caregiver sex and education, patient sex), the second level included patient characteristics (stroke severity, motor function, caregiver-rated functional impairment), the third level contained caregiver medical health, and the final step added family functioning. A logistic regression analysis was also conducted in a similar fashion as the linear regression to identify variables associated with clinically significant depressive symptoms; this allowed the continuous variable of depressive symptoms to be dichotomized into no-or-minimal depressive symptoms versus moderate-to-severe symptoms.
Results
There were no significant differences between the 192 caregivers included in the current investigation and the 14 caregivers from the parent study excluded because of missing data in the CES-D; specifically, excluded caregivers did not differ regarding caregiver age, sex, race, general health, and family functioning. The 192 included caregivers were age 19 to 92 years (mean ± SD, 57.2±15.1y). Seventy-three percent (n=140) of the caregivers were women, and 27% were men (n=52). Eighty-five percent of caregivers were white. Additional sociodemographics are shown in table 1, which summarizes characteristics of both caregivers and stroke survivors. Most stroke survivors, 57%, were men (n=110), and 43% were women (n=82), with an age range from 36 to 93 years (mean ± SD, 65.6±12.3y). Regarding the 14 stroke survivors who were excluded because of caregivers' missing data in the CES-D, there were no differences compared with included survivors regarding age, sex, and race. Excluded stroke survivors did show significantly less severe stroke (NIHSS, mean ± SD, 3.6±2.8 vs 6.2±3.9; t193=2.3; P=.022); however, there were no significant differences regarding stroke survivor cognition, motor functioning, or depression.
Table 1. Sociodemographics of the Caregivers (N=192) and Stroke Survivors (N=192)
| Characteristic | Values for Caregivers⁎ | Values for Stroke Survivors⁎ |
|---|---|---|
| Women, n (%) | 140 | 82 |
| Men, n (%) | 52 | 110 |
| Age (y), mean ± SD | 57.2±15.1 | 65.6±12.3 |
| Marital status (currently married), n (%) | 146 | 124 |
| Education (y), mean ± SD | 13.2±2.6 | 12.6±3.0 |
| Income category, mean ± SD† | 4.8±1.9 | 4.6±1.8 |
| Race, n (%) | N=185 | N=185 |
| 6 | 2 | |
| 4 | 3 | |
| 14 | 19 | |
| 0 | 1 | |
| 161 | 162 | |
| Ethnicity, n (%) | N=170 | N=174 |
| 97 | 88 | |
| 8 | 10 | |
| 28 | 38 | |
| 25 | 25 | |
| 1 | 1 | |
| 7 | 9 | |
| 4 | 3 | |
| 0 | 0 | |
| Religion, n (%) | N=177 | N=180 |
| 104 | 118 | |
| 36 | 32 | |
| 4 | 5 | |
| 25 | 16 | |
| 8 | 9 | |
| Relationship of caregiver to care recipient, n (%) | ||
| 117 | ||
| 46 | ||
| 3 | ||
| 8 | ||
| 10 | ||
| 6 | ||
| 2 |
⁎Regarding missing data, all variables had an N=192 except where listed. |
†Income categories: annual, (1) $0–$4999; (2) $5000–$9999; (3) $10,000–$14,999; (4) $15,000–$19,999; (5) $20,000–29,999; (6) $30,000–$49,999; (7) >$50,000. |
Stroke severity, as shown in table 2, was mild for most patients (NIHSS, mean ± SD, 6.2±3.9), and most were moderately independent in their functioning as assessed by the FIM total motor score (FIM, mean ± SD, 16.0±7.0). As noted, the FAI was completed by both patients and caregivers, regarding patient functioning. Caregivers reported significantly higher instrumental activities functioning than patients reported for themselves (caregiver FAI, mean ± SD, 30.7±8.4; patient FAI, mean ± SD, 25.5±9.4; t376=–5.6; P=.000). Regarding cognitive functioning, most stroke survivors scored above 75% on a cognitive assessment (3MS, mean ± SD, 77.0±20.8). Poststroke depression scores were low (GDS, mean ± SD, 2.5±3.1).
Table 2. Primary Measures Related to Caregivers and Stroke Survivors
| Measure | Completed by Caregivers | Completed by Stroke Survivors |
|---|---|---|
| Cognition (3MS; MS=100) | 77.0±20.8 | |
| Stroke severity (NIHSS; MS=36) | 6.2±3.9 | |
| Functional independence (FIM; MS=24) | 16.0±7.0 | |
| Functional activities (FAI; MS=46) | 30.7±8.4 | 25.5±9.4⁎ |
| General health (SF-36-GH; MS=100) | 68.1±22.1 | 59.0±22.6⁎ |
| Depression after stroke (GDS; MS=13) | 2.5±3.1 | |
| Depression in caregivers (CES-D; MS=60) | 15.6±13.0 | |
| Family general functioning (FAD-GF; MS=4.0) | 1.8±0.5 | 2.0±0.3⁎ |
⁎Indicates significant group differences (P<.01). |
The assessment of depression in caregivers showed a mean score ± SD on the CES-D of 15.6±13.0. Depressive symptoms were mild to moderate (15<CES-D<23) in 14% and severe (22<CES-D) in 27% of caregivers. Caregivers reported healthy family functioning in 70% of cases (FAD General Functioning subscale, mean ± SD, 1.8±0.5) and overall reported significantly healthier family functioning than was reported by stroke survivors (FAD General Functioning subscale, mean ± SD, 2.0±0.3; t352=3.5; P=.001). General health of caregivers (SF-36, mean ± SD, 68.1±22.1) was significantly greater than stroke survivors (SF-36, mean ± SD, 59.0±22.6; t364=–3.9; P=.000).
Analyses were conducted to assess which factors demonstrated significant correlation with the total score on the CES-D. Higher depression in caregivers correlated with caregiver sex (women, r=.16; P<.05), less caregiver education (r=.16; P<.05), patient sex (men, r=.27; P<.01), stroke severity (r=.16; P<.05), worse stroke survivor motor function (r=.17; P<.05), worse caregiver-rated patient functioning (r=.15; P<.05), worse caregiver general health (r=.39; P<.01), and worse mean family functioning (r=.27; P<.01). All correlation coefficients are shown in table 3.
Table 3. Correlations of Selected Sociodemographics and Primary Measures
| Variable | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| CG depression (CES-D) (1) | 1 | −.16⁎ | −.08 | .07 | −.16⁎ | .27† | −.07 | .10 | −.04 | .13 | −.14 | .16⁎ | −.17⁎ | .04 | −.15⁎ | −.39† | .05 | .27† | 1 |
| CG sex (2) | 1 | .16⁎ | .08 | .06 | −.56† | .13 | .16⁎ | −.06 | .13 | −.05 | .04 | −.10 | .06 | −.28⁎ | −.08 | .11 | .01 | 2 | |
| CG age (3) | 1 | .33† | −.12 | −.02 | .44† | .38† | .05 | .41† | −.09 | −.03 | −.01 | −.06 | −.13 | −.01 | −.21† | −.01 | 3 | ||
| CG marital status (4) | 1 | .06 | .11 | .13 | .65† | .14⁎ | .67† | −.03 | .04 | −.01 | −.04 | −.04 | .00 | −.20† | −.16⁎ | 4 | |||
| CG education (5) | 1 | −.06 | −.10 | −.03 | .43† | −.03 | .18⁎ | −.02 | .11 | .00 | .09 | .13 | .03 | −.26† | 5 | ||||
| SS sex (6) | 1 | −.23† | .31† | .09 | .32† | .06 | .05 | .03 | −.05 | .17⁎ | −.02 | −.14 | .01 | 6 | |||||
| SS age (7) | 1 | .00 | −.18 | −.06 | −.15⁎ | .01 | −.18⁎ | −.25† | −.09 | −.02 | −.11 | −.07 | 7 | ||||||
| SS marital status (8) | 1 | .16⁎ | .90† | .10 | .04 | −.02 | −.05 | .00 | .07 | −.13 | −.11 | 8 | |||||||
| SS education (9) | 1 | .18⁎ | .21† | −.02 | .09 | .12 | .10 | .12 | −.04 | −.27† | 9 | ||||||||
| CG relation: spouse (10) | 1 | .07 | .03 | −.03 | −.05 | −.03 | .04 | −.14 | −.09 | 10 | |||||||||
| SS cognition (3MS) (11) | 1 | −.26† | .19⁎ | .11 | −.08 | .14 | −.14 | −.05 | 11 | ||||||||||
| SS stroke severity (12) | 1 | −.47† | .10 | .06 | −.14 | .12 | .11 | 12 | |||||||||||
| SS motor (FIM) (13) | 1 | .17⁎ | −.04 | .15⁎ | −.13 | −.05 | 13 | ||||||||||||
| SS ADLs (FAI-SS) (14) | 1 | .13 | .04 | −.18⁎ | −.01 | 14 | |||||||||||||
| SS ADLs (FAI-CG) (15) | 1 | .23† | .04 | −.32† | 15 | ||||||||||||||
| CG general health (16) | 1 | −.12 | −.22† | 16 | |||||||||||||||
| SS depression (GDS) (17) | 1 | .18⁎ | 17 | ||||||||||||||||
| Fam Funct (FAD-GF) (18) | 1 | 18 |
⁎P<.05; |
†P<.01. |
A linear regression model was tested as shown in table 4. The dependent variable was the total score on the CES-D. Independent variables in the first step were caregiver sex, caregiver education, and patient sex. In the second step, stroke severity, motor function, and the caregiver rating of the FAI were added. The third step included caregiver general health. The mean FAD General Functioning subscale score was the only parameter of the final step. In this model, greater caregiver depression was associated with male patients (â=.251; P<.01), worse general health (â=–.249; P<.01), and worse family functioning (â=.173; P<.05). This model explained 28% of the variance in caregiver depression.
Table 4. Standardized β Coefficients from Linear Regression Predicting Caregiver Depression (CES-D)
| Variable | Step 1 | Step 2 | Step 3 | Step 4 | Cor |
|---|---|---|---|---|---|
| Caregiver sex | .008 | −.064 | −.089 | −.076 | −.060 |
| Caregiver education | −.201† | −.164⁎ | −.131 | −.095 | −.090 |
| Stroke survivor sex | .298† | .294† | .256† | .251† | .204 |
| Stroke severity | .091 | .080 | .052 | .045 | |
| Stroke survivor motor function | −.103 | −.074 | −.083 | −.072 | |
| Stroke survivor ADLs | −.173⁎ | −.107 | −.059 | −.052 | |
| Caregiver general health | −.282† | −.249† | −.231 | ||
| Family functioning | .173⁎ | .153 | |||
| Total R2 | .135 | .184 | .255 | .279 |
⁎P<.05; |
†P<.01. |
We also performed logistic regression analyses to determine whether variables were associated with low levels of depression versus moderate or greater levels of depression. The CES-D is a continuous measure of depressive symptoms that is traditionally divided into 3 categories of no symptoms, few symptoms, and severe symptoms. We sacrificed sensitivity in order to increase specificity by using an increased cut-off72 of 19, the midpoint of the CES-D's mild-to-moderate severity range, which resulted in 2 groups of caregivers. With this division, the group with more severe symptoms included 33% of the caregivers (n=63) with a mean score ± SD on the CES-D of 31.4±9.2. To determine the associations with significant depressive symptoms, we performed hierarchical logistic regression in the same manner as the linear regression. Consistent with the previous analyses, caring for a man (β=1.41; OR=4.08; P<.01), poorer caregiver general health (β=–.024; OR=.977; P<.05), and poorer family functioning (β=1.70; OR=5.49; P<.05) were all significantly associated with greater caregiver depression.
A total of 25 participants did not have complete data and were consequently dropped from our regression analyses. Importantly, people excluded from analyses did not differ in terms of patient age, patient sex, caregiver age, number of children at home, patient marital status, patient income, patient education, caregiver sex, caregiver education, stroke severity, motor score, FAI total score, caregiver depression, and family functioning. There was a trend for the excluded group to report lower general health (mean ± SD, 57.4±30.7 vs 69.6±20.3; t188=–1.84; P=.08); however, groups were not significantly different.
Discussion
Most stroke survivor rehabilitation takes place in the context of family, including supportive caregivers providing direct assistance. The timing of interventions for stroke treatment and rehabilitation is important, and timing services for caregivers may be equally critical.73 Historically, few intervention studies have assessed family variables that may affect outcomes,74 and no previous investigation has measured family functioning in the acute stroke period. Therefore, this report seeks to answer key questions regarding the relationship between family functioning and depressive symptoms in caregivers immediately poststoke. Identifying variables such as family functioning that both predict depression and are amenable to change will help clinicians provide individualized treatment and also foster development of improved interventions and evidence-based guidelines. Improving the assessment and treatment of depressive symptoms in caregivers should remain a priority during stroke rehabilitation because contemporary data continue to show that, particularly for the elderly, depression results in functional impairment.75, 76 Even people with minor and subsyndromal depressive symptoms show functional impairment,77 suggesting that caregivers who experience only minimal depressive symptoms may not be able to participate as fully in stroke rehabilitation efforts, which may ultimately limit the potential gains of stoke survivors and further negatively affect the course and severity of caregivers' distress.78
Depression, particularly when it occurs in later life, is a complex disorder with multiple etiologies including, potentially, biological, psychologic, social, and spiritual factors.79 In this report, evidence is presented in support of discrete biological, psychologic, and social risk factors. Overall, these data from caregivers evaluated soon after a family member's stroke show that 41% of caregivers experienced significant acute depressive symptoms. Depressive symptoms were more pronounced for women, for caregivers with less education, and for caregivers who themselves experienced worse general health. Depressive symptoms were also correlated with caring for a patient who was male or more functionally impaired. In addition, poor family functioning contributed to increased caregiver depressive symptoms. In statistical models including all these factors, increased total depression scores were associated with (1) caring for a man, (2) worse caregiver general health, and (3) poor family functioning. Interestingly, caregivers of men were 4 times more likely to be depressed than caregivers of women. Also, with every 1 point decrease in general health, caregivers were 1.02 times more likely to be depressed, and for every 1 point increase in family dysfunction, caregivers were 5 times more likely to be depressed.
Family functioning has been a topic in stroke rehabilitation for decades57; however, no previous study has used a formal measure of family functioning in the immediate poststroke period. In this investigation, family functioning as assessed by the FAD makes a unique contribution to the variance of caregivers' depressive symptoms. These data are consistent with and provide additional support to previous investigations of family functioning during stroke rehabilitation. In the future, efforts to model the interactions between stroke survivors and caregivers80, 81 may benefit from adding family functioning variables.
Results from this investigation are also consistent with previous reports regarding the impact of negative life events on depressive symptoms in the elderly. A meta-analysis of 25 investigations showed that the accumulation of negative life events results in increased risk for depressive symptoms, with specific events varying in weighted average effect size (r=.047–.408).82 Findings in the current investigation are also consistent with meta-analytic results regarding marital discord and its impact on depressive symptoms. Data from 26 studies involving more than 3700 women and 2700 men suggest that marital stress attributes to 18% of the variance of wives' depressive symptoms and 14% of the variance of husbands' depression.83 In the context of these 2 meta-analyses, the regression models presented in this report show comparable effect size for poor family functioning as a significant predictor of depressive symptoms in the aftermath of stroke.
Improvements in the assessment of a stroke survivor's family and the effectiveness of family-based interventions are necessary. Several published reports already suggest that family interventions help patients with stroke and their caregivers. For example, education about stroke and a short series of visits with a family counselor can improve outcomes of patients with stroke.84 In addition, training in problem-solving, administered by telephone, may be useful for caregivers of patients with stroke.85 However, a more intensive in-home family intervention of 16 sessions was shown not to be of benefit compared with treatment as usual after 6 months.86 Reviews of this literature suggest that, overall, counseling and other interventions directed explicitly toward caregivers during the rehabilitation period are of benefit.87, 88, 89 In addition, these reviews suggest that more intervention studies are needed to assess which specific constructs, such as family functioning or caregiver education, should be targeted in order to produce the most benefit to caregivers and stroke survivors at risk for depression or functional impairment after stroke. It has been shown that reduced depressive symptoms90 and burden91 in caregivers of patients with dementia result in significant benefits for both patients and caregivers, suggesting that improved identification and treatment of depression in stroke caregivers may produce similar results.
Of the 3 variables shown to be significantly associated with baseline caregiver depression in this study, family functioning is the most mutable. Patient sex is an unchangeable variable, and caregiver health is likely to remain static or worsen over time. Regarding caregiver health, several studies have suggested an association between medical illness and caregiver depression, so this is not a surprising finding. However, regarding patient sex, this was not expected. It is reasonable to believe that the increased risk of depression in women partly drives this effect, even though caregiver sex was shown to correlate with but not predict higher depression. It is possible that (1) male survivors are more cumbersome to care for social, cultural, or family reasons; (2) male survivors have greater stroke severity that was not captured by the measures in this study; or, (3) a selection bias exists such that patient-caregiver dyads were more likely to enroll in the original study if the male stroke survivor was difficult to assist. Regarding a cultural bias or differential response depending on the sex of the stroke survivor or caregiver, this is an important area of future research.92 The literature regarding sex as a risk factor for stroke severity has suggested that neuroprotective effects of estrogen and progesterone may allow women to experience a less severe course after stroke93; however, a recent epidemiologic sample showed women to have greater stroke severity than men,94 so this is likely to remain a controversial area of inquiry. Regarding a possible selection bias, most stroke survivors, 57%, enrolled in the original investigation were men, but it is difficult to determine what factors might account for this difference.
Study Limitations
Finally, this study has several limitations. The sample is from a homogeneous population with limited minority representation; it is certainly possible that family functioning could be more or less predictive of depression in specific racial or ethnic contexts. Also, it is possible that patients who had a stroke of only mild severity are underrepresented in the current sample, as suggested by a significant group difference on the NIHSS between included and excluded participants; however, alternative measures of symptom severity regarding stroke (including cognition and motor function) were not different between groups. Cross-sectional self-report data are inherently limited in their ability to capture premorbid family functioning accurately, and despite the instructions to reply based on the previous 6 months of family interactions, FAD results might be colored (positively or negatively) by the acute stress of stroke, more than might occur if an investigator collected family data by interview. Data were not collected for caregiver burden, a construct that may also predict caregiver depression. Also, caregiver medical health was assessed by self-report rather than by interview or other objective data. These limitations suggest ways in which future studies of caregiver depression in the immediate aftermath of stroke might be improved.
Conclusions
Caregivers of stroke survivors are at risk for major depression. Depressive illness in a caregiver can be debilitating and can place both patient and caregiver at risk for worse mental and physical health outcomes. Family caregivers are an essential resource for rehabilitation specialists working to assist a stroke survivor with returning to maximal functioning; without the caregiver's healthy participation, the entire system may be compromised. Longitudinal investigations of stroke caregivers have suggested that depressive symptoms in the early rehabilitation period are one of the best predictors of later depressive illness,7 which suggests that one goal for caregiver risk reduction should be to assess and treat depressive symptoms as soon as they can be identified.
This study adds to the growing literature regarding stroke caregiver depression by showing that family functioning can be assessed in the acute stroke period and that it contributes uniquely to the risk for greater depressive symptoms in caregivers during the immediate aftermath of stroke. This study also replicates previous investigations showing that caregivers are at high risk for depressive symptoms, and the risk is further increased by experiencing worse physical health or tending to the needs of a male stroke survivor. Stroke rehabilitation can be a time of family upheaval. Members are forced to assume new responsibilities, and historic communication patterns are disrupted by hospital procedures or neurologic symptoms such as aphasia or dysarthria. Interventions that target the improvement of family functioning in caregivers and stroke survivors may decrease the risk for caregiver depression over time.
This study does not imply that family functioning should be assessed in lieu of evaluating depressive symptoms in caregivers. Rather, these findings suggest that independent evaluation of the stroke survivor, caregiver, and the health of the family relationship will each provide meaningful data relevant to rehabilitation. Specifically regarding stroke caregivers, given the established risk for clinical depression, the current data imply that family functioning should be assessed and addressed in addition to evaluation and treatment of depressive symptoms immediately after stroke and throughout the poststroke rehabilitation period.
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Supported by the National Institutes of Health (grant no. R01 NS37840).
A commercial party having a direct financial interest in the results of the research supporting this article has conferred or will confer a financial benefit on the author or one or more of the authors. Gary P. Epstein-Lubow, MD, was a consultant for Forest Research Institute for a portion of the time while conducting these analyses.
PII: S0003-9993(09)00157-9
doi:10.1016/j.apmr.2008.12.014
© 2009 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
Volume 90, Issue 6 , Pages 947-955, June 2009
