Sociodemographic, physical, and psychosocial

characteristics of depressed and non-depressed

family caregivers of stroke survivors

JOAN S . GRAN T, ALF RE D A.

B ARTO LU CCI, T IM OTHY R. E LLIO T

and JOYCE NE W M AN GIG ER

University of Alabama at Birmingham, Birmingham, AL, USA

(Received 10 March 2000; accepted 5 May 2000 )

A variety of sociodemographic, physical, and psychosocial variables are linked to depressive behaviourin family caregivers. This study was conducted to determine the best predictors of caregiver depressionat onset of the caregiver role among persons providing care to a stroke survivor. The relative con-tributions of stroke survivor and caregiver sociodemographic characteristics, as well as caregiver generalhealth, physical functioning, social support, life satisfaction, preparedness, and reaction in the predic-tion of depression status, were examined. A correlational study of 52 primary family caregivers ofindividuals who had a cerebrovascular accident was conducted. General health and physical function-ing scales from the SF-36, and measures of caregiver social support, life satisfaction, preparedness, andreaction were used. Caregiver depression was best predicted by lower life satisfaction, lower physicalfunctioning, and a lack of tangible social support.

Introduction

Approximately 4.1 million older adults have chronic diseases such as cerebrovascularaccidents that significantly impair activities of daily living [1]. This number is pro-jected to increase to 6.7 million by the year 2001 [2]. More than one-half of strokesurvivors are left with residual disabilities that require assistance with daily activitiessuch as eating, bathing, and dressing [3, 4]. This assistance is provided primarily byfamily members, most often a spouse, daughter, or daughter-in-law [5, 6].

Family caregivers often experience negative outcomes such as depression [6± 9],perhaps attributed to the stress of caregiving responsibilities [10]. In fact, Anderson etal. [11] found that almost all family caregivers (n ˆ 241) had adverse effects on theiremotional health 1 year after a stroke. Depressed caregivers, however, may havemore difficulty in recalling or using pertinent information [12], knowledge that maybe important in facilitating positive outcomes and reducing complications in strokesurvivors with physical, cognitive, and emotional deficits.

Research findings indicate that caregiver demands in the home may also result inrole overload [13]. Caregivers who are overwhelmed are more likely to place family

Brain Injury ISSN 0269± 9052 print/ISSN 1362± 301X online # 2000 Taylor & Francis Ltdhttp://www.tandf.co.uk/journals

Correspondence to: J. S. Grant, DSN, RN, CS, University of Alabama at Birmingham, Universityof Alabama School of Nursing, NB #314, 1530 3rd Avenue South, Birmingham, AL 35294-1210,USA. e-mail: grantj@admin.son.uab.edu

BRAIN INJURY, 2000, VOL. 14, NO. 12, 1089 ± 1100

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members in nursing homes [14]. More people enter nursing homes because ofcaregiver burnout than from a worsening of their condition [6].

Many investigators design interventions to improve negative caregiver outcomesrather than examine factors that contribute to them [13]. However, caregivingimpacts many dimensions, including self-esteem, family support, finances, schedules,and general health [15, 16]. While a variety of sociodemographic, physical, andpsychosocial variables are linked to depressive behaviour in family caregivers ofindividuals with dementia [17, 18], fewer studies have examined the influence ofthese variables on depressive behaviour in caregivers of stroke survivors. Therefore,the purpose of this study was to determine the best predictors of caregiver depres-sion at onset of the caregiver role among persons providing care to a stroke survivor.In conducting this study, the relative contributions of stroke survivor and caregivercharacteristics, as well as caregiver general health, physical functioning, social sup-port, life satisfaction, preparedness, and reaction in the prediction of depressionstatus were examined.

Sociodemographic characteristics and depressive behaviour

Most investigations exploring the impact of sociodemographic characteristics oncaregiver adjustment have used relatives of individuals experiencing Alzheimer’sdisease. There is an even greater dearth of studies exploring this type of researchin family members of stroke survivors. However, research findings indicate thatcaregiver gender, age, race, and relationship to the care recipient predict outcomessuch as depression. Some researchers report more negative caregiver outcomes inwomen [19], the primary caregivers of stroke survivors [8]. For example, Dennis etal. [20] found that while gender was not a significant contributor to caregivergeneral health, female caregivers had higher depression scores than male caregivers6 months after a stroke. Studies that control for the care recipient’ s physical andcognitive functioning, however, commonly find no differences associated withgender [21].

Dennis et al. [20] found that more than half of family caregivers of strokesurvivors (n º 222) experienced emotional distress 6 months after discharge fromthe hospital. Female caregivers reported more anxiety than male caregivers, andolder caregivers were more depressed than young caregivers. In contrast, Neiboer etal. [8] found that age was not a significant predictor of depression in spousalcaregivers of stroke, hip fracture, congestive heart failure, and myocardial infarctionpatients. Robinson and Kaye [18] also found no significant relationship between ageand depression in caregiver wives of individuals with dementia.

In general, African American caregivers often report less perceived depressionand burden than White caregivers [22± 24]. For example, Haley et al. [25] found thatBlack caregivers of individuals with Alzheimer’s disease (n ˆ 74) reported lessdepression and higher self-efficacy in managing caregiving problems than Whitecaregivers (n ˆ 123). Similarly, Farran et al. [26] examined the relationship betweenrace and caregiver depression among 77 African Americans and 148 White spousecaregivers of persons with dementia. Higher levels of depression were associatedwith being White, poorer caregiver physical health, greater patient behaviouralproblem distress and caregiver task distress, and higher levels of spousal impairmentregarding activities of daily living. In contrast, Grant [27] reported more depressionin younger African American caregivers of stroke survivors.

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Nieboer et al. [8] found that spousal male caregivers of stroke, hip fracture,congestive heart failure, and myocardial infarction patients had less depressionthan spousal female caregivers. Li et al. [28] reported that daughters were lessdepressed than wife caregivers in caring for parents or spouses who had predomi-nantly either a stroke, heart disease, or dementia. In contrast, Robinson and Kaye[18] found no significant differences in depression among caregivers and non-caregiving wives of individuals with dementia.

Stroke survivor characteristics such as age and the type, location, extent, andprior incidence of stroke may also influence motor and cognitive functioning of thestroke survivor. Subsequently, these functional deficits may adversely affectcaregiver outcomes [29, 30].

Physical and psychosocial characteristics and depressive behaviour

Empirical data suggest that physical and psychosocial characteristics such as caregivergeneral health, physical functioning, social support, life satisfaction, preparedness,and reaction may also impact depressive behaviour. Much of the literature sub-stantiates deteriorating general health for family caregivers [31]. For example, Leeand Wu [32] reported that both family support and health influenced depressionamong caregivers (n ˆ 144) who cared for disabled elders. Consistent with otherliterature [33], physical functioning is important to family caregivers’ emotionalwell-being prior to hospital discharge.

Although support of family caregivers usually decreases over time [34], socialsupport appears to be an important factor in reducing caregiver depression [13, 18,35± 38]. The type of support may also be significant. For example, MaloneBeachand Zarit [17] found that instrumental support was significant, but informational andemotional support were not helpful in reducing depression in caregiving women(n ˆ 57) who cared for individuals with some type of dementia. In contrast, Li et al.[28] found that wives (n ˆ 103) and daughters (n ˆ 149) who received emotionalsupport when care recipients’ behavioural problems were at a high (for both daugh-ters and wives) or medium level (for wives only) had less depressive symptoms.

Life satisfaction is also a major component of caregiver adjustment. Caregiverswho have more life satisfaction are commonly less depressed. For example, Segaland Schall [39] reported that life satisfaction of caregivers (n ˆ 38) 6 months after astroke was somewhat lower than satisfaction in the general population and directlyassociated with the care recipient’ s level of handicap. In examining life satisfaction incaregivers of spinal cord injury patients (n ˆ 124), Weitzenkamp et al. [40] reportedthat caregivers experienced significantly more physical and emotional stress, burn-out, fatigue, anger, and resentment than non-caregivers. Schwarz [41] also foundthat satisfaction, impact, and mastery significantly predicted depressive symptoma-tology in 100 family caregivers to functionally impaired older adults.

Family caregivers frequently describe the demands of caregiving in the home asoverwhelming. They often describe uncertainty in the caregiving role as well asinadequate caregiver preparedness and problem-solving skills necessary to deal withthe physical, cognitive, and emotional change in the stroke survivor [34, 42]. Inexamining factors that influence caregiving effectiveness, Smith [43] found that lesstime spent in caregiving, greater caregiver preparedness and motivation, adequateincome, and positive family coping were relevant.

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Methods

Participants

The sample consisted of 52 individuals (only 10% who met inclusion criteriadeclined to be in the study) who had an admitting diagnosis of a cerebrovascularaccident related to brain infarction and their primary family caregivers. Motor andcognitive functional deficits were measured with the Functional IndependenceMeasure (FIMSM) and scores ranged from 37± 114, with an average of 77. Strokesurvivors commonly experienced deficits such as hemiplegia, dysphasia, and mem-ory loss. The number of stroke survivors who experienced right- (n ˆ 20) and left-sided …n ˆ 23† hemispheric strokes was approximately equal, while nine hadbilateral strokes. The stroke survivors ranged in age from 37± 91 years old with anaverage age of 72 years and were almost equally mixed by gender (n ˆ 28 females;24 males). The majority either completed high school (n ˆ 19) or the eighth grade(n ˆ 19).

Family caregivers (n ˆ 43 women and nine men) ranged in age from 22± 81years old, with an average age of 54 years. They were primarily wives (n ˆ 17) ordaughters (n ˆ 15). The majority either completed high school (n ˆ 25) or theeighth grade (n ˆ 17). The number of African Americans and Caucasians wasapproximately equal (26 African American, 25 Caucasians, and one Asian).

Procedure

A trained research nurse made a minimum of two contacts with the family care-givers and stroke survivors to verify eligibility criteria, explain the study, and secureinformed consent. Data collection on all instruments occurred 1± 2 days beforedischarge of the stroke survivor in a quiet conference room. The measures wereadministered in a random order. Before beginning the pilot, the reliability of allinstruments was examined using a similar sample of family caregivers of strokesurvivors and yielded acceptable reliability coefficients (n ˆ 19).

Measures

Demographic data formAge, gender, race, relationship to the individual recovering from the stroke, educa-tion, and socioeconomic status were the primary family caregiver demographicvariables used in this study. Demographic variables for the individual recoveringfrom the stroke were age, gender, race, relationship to the caregiver, socioeconomicstatus, and the type, location, and total number of strokes. These data were recordedon a demographic data form.

Functional deficitsFunctional deficits of the stroke survivor were measured with the FunctionalIndependence Measure (FIM

SM) [44], a commonly used measure of stroke survi-

vors’ functional deficit that has adequate validity, reliability, and inter-rateragreement [45± 48]. The instrument contains 13 items that address motor function(eating, grooming, bathing, dressing, toiletting, bowel and bladder control, transfers,and locomotion) and five items that measure cognitive function (communication

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and social cognition). Each item on the scale ranges from 1 (total assistance) to 7(complete independence), with higher numbers indicating fewer functional deficits.

General health and physical functioningGeneral health and physical functioning were measured with items for these twodimensions (general health ˆ five items; physical functioning ˆ 10 items) from theMedical Outcomes Study Short Form Health Survey (SF-36) [49]. The two sub-scales have acceptable internal consistency (¬ ˆ 0:80± 0.95) [50] and test± retest re-liability coefficients (r ˆ 0:81± 0.90 for physical functioning; 0.80± 0.83 for generalhealth) [51] with subjects having different sociodemographic characteristics, diag-nosis, and disease severity. Test± retest coefficients were comparable to the preli-minary studies (0.93 and 0.91, respectively). Higher scores indicate better generalhealth and physical functioning.

Social supportThe Interpersonal Support Evaluation List (ISEL) was used to measure social sup-port [52]. The instrument consists of 30 dichotomous items that measure perceivedavailability of someone to talk about problems (appraisal) , people to do things with(belonging), and material aid (tangible support). Empirical evidence supports thatthe ISEL has construct, discriminant, and predictive validity and that it is internallyconsistent (¬ ˆ 0:88± 0.90; 0.70± 0.82 for subscales) and stable over time (r ˆ 0:70±0.74; 0.49± 0.69 for subscales) [53] with older populations [54]. These data arecomparable to the preliminary studies (¬ ˆ 0:91, 0.75± 0.81 for subscales;r ˆ 0:88, 0.61± 0.83 for subscales). Lower scores indicate greater social support.

Life satisfactionLife satisfaction was measured with the Life Satisfaction Index-Z, a 13-item dichot-omous self-report questionnaire that reflects positive and negative change in overtlife circumstances over time [55, 56]. Empirical evidence supports its validity andreliability with older populations [57]. The LSI-Z has acceptable internal consis-tency reliability (¬ ˆ 0:78) [58] and test± retest coefficients (r ˆ 0:80± 0.90) [59] foradults with chronic illness, comparable to the pilot data (0.71 and 0.76, respect-ively). Lower scores indicate greater life satisfaction.

Caregiver preparednessCaregiver preparedness was measured by the Preparedness for Caregiving Scale(PCS). This five-item Likert-type scale appraises the caregiver’s perceptions abouttheir preparedness to give care and to handle the stresses of caregiving [60].Comparable with the pilot data (¬ ˆ 0:77± 0.88; r ˆ 0:89), estimates of reliabilityindicate it is internally consistent (¬ ˆ 0:67± 0.92), as well as stable over time(r ˆ 0:81± 0.92) for primary family caregivers of varied patient populations[61, 62]. Higher scores indicate greater caregiver preparedness.

Caregiver reactionCaregiver reaction was measured with the Caregiver Reaction Assessment (CRA).The instrument is a 24-item, 5-point, Likert-type scale that assesses caregiver’sperceived self-esteem, degree of family support, and the impact of caregiving onfinances, life schedule, and health. Empirical evidence supports its validity and re-liability [15]. In the pilot test with stroke family caregivers, internal consistency and

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test± retest reliability coefficients were 0.64 and 0.81, respectively. Higher scoresindicate a more negative caregiver reaction.

Depressive behaviourDepressive behaviour was measured with the 20 item Centre for EpidemiologicStudies Depression scale (CES-D) [63]. The CES-D has acceptable validity andreliability for individuals from various sociocultural and ethnic backgrounds [42,64, 65]. The pilot tests also yielded acceptable internal consistency and test± retestcoefficients (¬ ˆ 0:85± 0.92; r ˆ 0:65). Higher scores indicate greater depressivebehaviour.

The CES-D is often used in field research to classify persons who may have agreater likelihood of meeting clinical criteria for a depressive syndrome. Generally, acut-off score of 16 is employed to differentiate persons who may be at risk for adepressive disorder [66]. For the purposes of this study, this cut-off score was used toclassify caregivers as either depressed or not depressed for further analyses.

Statistical analyses

Initially, the means and standard deviations on major demographic and self-reportvariables for depressed and non-depressed caregivers were examined. Subsequentcorrelations between the variables were analysed to examine mediation of variables.A univariate association of the variables with the outcome measure of depressionwas conducted. If there was either a significant association or near association of avariable with depression at p ˆ 0:1 or less, then the variable was entered into astepwise logistic regression model. Logistic regression was used because of thedichotomous outcome of either depressed or non-depressed.

Results

In this study, 19 caregivers (37%) and CES-D scores that exceeded the cut-off scoreof 16 used to identify persons who may be at risk for a depressive syndrome. Thesepersons were then classified as depressed in subsequent analyses. The remaining 33caregivers (63%) were classified as non-depressed. Level of depression status did notvary as a function of caregiver race, gender, or education status (coded as1 ˆ college, 2 ˆ high school graduate, 3 ˆ 8

thgraded completed, 4 ˆ less than

8th

grade). Caregiver depression status was also unrelated to stroke location.Table 1 presents the means and standard deviations on the major demographicand self-report variables for depressed and non-depressed caregivers. The correlationstructure did not indicate multicollinarity.

Examining the univariate analysis, depressed caregivers reported significantly lesssocial support, poorer general health and physical functioning, and less life satisfac-tion than non-depressed caregivers. Table 2 contains the probability values for themajor demographic and self-report measures in depressed caregivers.

Tangible social support, life satisfaction, and physical funcitoning were the bestpredictors of depression in family caregivers of stroke survivors. Depression wasunrelated to stroke-related characteristics. The model gave an excellent fit, sincethe overall concordance was 92.2%. Table 3 identifies unstandardized and standar-dized ­ -coefficients, standard errors, probability values, and odds ratios from thestepwise logistic regression analysis in predicting family caregiver depression.

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Discussion

Approximately one-third of stroke survivor caregivers experience poor psycholo-gical health [33]. Comparable to other studies (in which ¹ 44% were depressed)[67], 37% were depressed in this study, while 63% were non-depressed.

These findings indicate that physical functioning, social support, and life satisfac-tion are important correlates of the emotional well-being of family caregivers ofpersons who experience a stroke. Consistent with other literature [33], physicalfunctioning was a significant correlate of family caregivers’ emotional well-beingprior to hospital discharge. Despite the support of family and friends, it is probablymore clear to caregivers at discharge that they will require adequate physical healthto safely care for stroke survivors who experience significant physical, cognitive, andemotional deficits. Poorer physical functioning may negatively impact the emo-tional well-being of caregivers if they feel unable to adequately care for the strokesurvivors during the recovery process.

Similar to MaloneBeach and Zarit’ s findings [17], tangible support was moreimportant than either the perceived availability of someone to talk about problems(appraisal) or to do things with (belonging) in this study. After discharge, caregivingis commonly characterized by multiple visits to hospitals, rehabilitation centres,nursing homes, and the home. Family caregivers provide substantial hands-on

Depressive behaviour in family caregivers 1095

Table 1. Means and standard deviations on demographic and self-report variables for depressed and non-depressedcaregivers.

Family caregivers

Variables Depressed (n ˆ 19) Non-depressed (n ˆ 33)

Caregiver demographicsAge 52.05 (17.52) 54.61 (15.13)Education 2.37 (0.76) 2.17 (0.77)

Stroke survivor demographicsAge 68.16 (11.81) 73.79 (8.89)FIM

SMÐ Cognition 28.05 (4.51) 26.94 (6.41)

FIMSM Ð Motor 51.11 (10.53) 48.91 (14.42)SF-36 scales

Physical functioning 21.74 (6.29)* 27.27 (2.73)General health 16.71 (3.87)* 20.08 (3.77)

Social supportISEL-A 14.05 (2.59)* 12.06 (2.06)ISEL-B 13.11 (2.47)* 11.15 (1.86)ISEL-TAN 11.74 (2.05)* 10.55 (1.00)

LSI-Z 16.79 (3.44)* 14.39 (1.77)Preparedness for caregiving scale 14.05 (3.42) 15.45 (3.69)Caregiver reaction scale

MHLT 10.61 (2.91)* 8.43 (2.19)FIN 8.06 (2.13) 8.13 (1.74)MSCH 19.22 (2.90) 18.40 (3.40)LACK 13.56 (4.68) 11.30 (4.67)SELF 28.78 (3.86) 29.43 (5.17)

ISEL-A ˆ ISEL appraisal scale; ISEL-B ˆ ISEL belongingness scale; ISEL-TAN ˆ ISEL tangible support scale;LSI-Z ˆ life satisfaction scale, form Z; MHLT ˆ impact of caregiving on health, FIN ˆ impact on finances,MSCH ˆ impact on life schedule, LACK ˆ degree of family support, SELF ˆ perceived self-esteem.* p ˆ< 0:05.

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care during this period. Many primary family caregivers spend 20 hours a week ormore in caring for their relative [10]. Primarily family caregivers often experienceproblems in managing activities of daily living and procuring adequate tangibleservices to assist with the cognitive and functional deficits of the stroke [16].

In this study, data were collected immediately prior to discharge home. Whileother types of support may be more salient later in the caregiving process, participa-tion in physical, occupational, and speech therapy by the family caregivers mayreinforce the value of tangible support services to assist them in meeting theneeds of the stroke survivor. Therefore, investigators must explore strategies toeither strengthen the tangible social support provided to family caregivers or toteach family caregivers how to better obtain these resources. Other investigators

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Table 2. Univariate analysis of major demographic and other self-report variables associated with depressionstatus.

Variables MS df F p

Caregiver demographicsAge 78.62 1 0.28 0.60Education 0.42 1 0.72 0.40

Stroke survivor demographicsAge 382.19 1 3.79 0.06Type of stroke 0.03 1 0.13 0.73Location of stroke 0.10 1 0.13 0.72FIM

SMÐ Cognition 14.94 1 0.45 0.51

FIMSM

Ð Motor 58.16 1 0.34 0.57SF-36 scales

Physical functioning 369.52 1 19.44 < 0.01General health 137.23 1 9.48 < 0.01

Social supportISEL-A 47.85 1 9.32 < 0.01ISEL-B 46.03 1 10.46 < 0.01ISEL-TAN 17.12 1 7.93 < 0.01

LSI-Z 69.19 1 11.05 < 0.01Preparedness for caregiving scale 23.70 1 1.83 0.18Caregiver reaction scale

MHLT 53.36 1 8.65 < 0.01FIN 0.07 1 0.02 0.89MSCH 7.61 1 0.73 0.40LACK 57.24 1 2.62 0.112SELF 4.84 1 0.22 0.64

ISEL-A ˆ ISEL appraisal scale; ISEL-B ˆ ISEL belongingness scale; ISEL-TAN ˆ ISEL tangible support scale;LSI-Z ˆ life satisfaction scale, form Z; MHLT ˆ impact of caregiving on health, FIN ˆ impact on finances,MSCH ˆ impact on life schedule, LACK ˆ degree of family support, SELF ˆ perceived self-esteem.

Table 3. Stepwise logistic regression of variables associated with caregiver depression.

Variables B Se B ­ p-value Odds ratio

Tangible social support 0.88 0.35 0.78 0.01 2.40Life satisfaction 0.58 0.24 0.91 0.02 1.79Physical functioning 70.44 0.14 71.27 < 0.01 0.64

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also agree that caregivers of stroke survivors need additional practical informationabout dressing and bathing and potential resources in the community [68].

Congruent with this study, life satisfaction in family caregivers of stroke survivorsis lower than the general population [39] and associated with depressive behaviour[40]. Life satisfaction has been infrequently examined in family caregivers of strokesurvivors, more often examined in patients with chronic illness [39]. Segal andSchall [39], however, found that life satisfaction was related to stroke survivor familycaregiver stress. Caregiver stress, in turn, was less related to physical disability andmore concerned with the way the disability impacted daily activities, a findingshared by other investigators that focus on caregivers of individuals with brain injury[69, 70]. These data may assist in explaining the non-significant effect of strokesurvivor functional deficits and why tangible support was so important to familycaregivers in this study.

The effects of demographic characteristics on depressive behaviour is controver-sial. Some researchers have found that stroke survivor and family caregiver charac-teristics influence emotional well-being [8, 20, 26, 29], while studies that control forthe patient’s physical and cognitive functioning commonly report no differencesassociated with caregiver adjustment [21]. Similar to the study by Stein et al. [67],depression was unrelated to stroke survivor characteristics and supports that depres-sion in stroke survivor caregivers at the onset of the caregiver role may be more afunction of psychosocial issues.

There is evidence that cognitive± behavioural therapy interventions such as socialproblem-solving are effective in decreasing depression in family caregivers [9, 71].Social problem-solving assists family caregivers to systematically identify factors thatcontribute to problems and to develop strategies to reduce or eliminate them.Before hospital discharge and in the early phases of caregiving, healthcare profes-sionals can provide caregivers with problem-solving training to expand their copingabilities, alleviate depressive behaviour, and address concerns, including obtainingand utilizing resources effectively. There is some evidence that routine telephonecontacts an be used to develop caregiver problem-solving skills in the home [27,72].

In this study, findings must be viewed cautiously, because the small sample sizelimited the ability to perform more rigorous statistical tests such as path analysis. Thisstudy failed to use randomization and to collect longitudinal data and data on othervariables that may have either a moderating or mediating effect. This study, how-ever, does offer beginning information that identifies potential factors that may bepredictive of depressed and non-depressed family caregivers of stroke survivors.

Acknowledgem ents

This study was supported by a grant to the first author from the University ofAlabama at Birmingham, School of Nursing and Lister Hill Center for HealthPolicy.

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