Return to work predictors of stroke survivors and their spousal caregivers

Abstract

BACKGROUND: Return to work is an issue of concern for stroke survivors and their spouses. Ramifications may include loss of income and self-efficacy.

OBJECTIVE: This study describes the return to work patterns of stroke survivors and their spousal caregivers post stroke.

METHODS: One hundred fifty-nine dyads were examined for their return to work patterns at baseline (post hospital discharge) and then at 3 month intervals for one year. Relationships were determined between work and gender, age, ethnicity, education, type of insurance, type of stroke, location of stroke, motor and cognitive functional status, depression, mutuality, and life satisfaction.

RESULTS: Low levels of return to work by stroke survivors (7.5%) and a small decrease in the amount of working caregivers (from 45.3% to 40.35%) were found one year post baseline. Variables that predicted return to work changed over the five data points except for younger age for the caregiver, which was consistently significant across all data points. Three case scenarios representative of working patterns are offered.

CONCLUSIONS: Further research is needed regarding the return to work needs of stroke survivors and their spousal caregivers, particularly what role the occupational therapist may play in facilitating that process.

Keywords

CVA recovery employment function self-efficacy

1 Introduction

Strokes are the fourth leading cause of death and one of the primary causes of long-term disability in the U.S. [1 ppe168, e173]. Every year, 795,000 Americans are affected by strokes; 185,000 of those strokes a second occurrence [1]. Based on current trends, it is projected that almost 4% of Americans will have experienced stroke by the year 2030 [2]. Stroke may be caused by interruption of blood flow to the brain resulting from a burst blood vessel or a blockage [3, 4]. This results in a wide variety of impairments that may include: deficits in motor control, sensation, language, cognition, and emotional regulation [5]. Impairments such as these have long-term effects; 33–42% of stroke survivors continue to need assistance with activities of daily living 6 years after the stroke occurs [6 p104].

Stroke usually brings about a multitude of changes for both the stroke survivor and his/her partner/family members. The stroke survivor often experiences loss of roles and function while the partner, now caregiver, tries to balance a variety of responsibilities [7 pp1, 6]. Work loss may occur, not only for the stroke survivor, but also for the caregiver as he/she fulfills his/her new caregiving roles [8 –10].

The working role may include employment, voluntary activities, and many other productive situations regardless of payment. Work, as a role, is particularly important to individuals not only as a source of income, but as a way of achieving fulfillment and satisfying social and emotional needs [11 –13]. Increasingly, individuals affected by stroke are of working age; 45% are reported to be under 65 years of age [14].

A narrative review of the literature by Wang et al. [15] found that a range from 22% to 53% of stroke survivors return to work within 6 to 12 months of experiencing stroke [15 p554]. Many factors influence the return to work of stroke survivors [16]: encouraging return to work are having a white collar job, having a higher level of function in activities of daily living, and ability to walk [15 pp556-557]. According to Wang et al. [15], although severity is a negative predictor for return to work, the location of the stroke and the particular cerebral hemisphere affected is not. Sequelae of stroke that influence return to work include behavioral problems, cognitive deficits, hemiparesis, motor impairment and sensory impairment, as well as difficulties with completing activities of daily living (ADL) and ambulation [17]. Most stroke survivors experience significant reduction in their ability to work and many must modify their work hours or their jobs due to these changes; some must retire [17 –20]. Treger et al. [17] determined that most stroke survivors returned to work 3 to 6 months post stroke, and that after one year, additional return to work was not statistically significant [17 p1399].

For the family caregiver, return to work is also affected. Ko et al. [21] found that 65% of caregivers who worked missed some time from work, while 27% worked fewer hours and some retired or left their jobs as a result of the demands of their caregiving role. Caregivers who were working tended to be minorities, to be healthier and younger, to experience more depressive symptoms, and to receive more support from their families than their non-working counterparts. Nonworking caregivers tended to be caring for older stroke survivors. Caregivers who worked part-time were female and older than caregivers who worked full time [21 p221]. They had more problems with fatigue and tended to care for stroke survivors who were older and had more problems with motor ability than caregivers who worked full time [21 p221]. According to Ko et al. [21], “alterations in employment status can be sporadic for caregivers during stroke recovery” [21 p224], as some caregivers who had limited their work hours had returned to work or increased their work time during the 4 to 8 month period after onset of the stroke. Some homemakers had started to work, while others had reduced their work hours, retired, or stopped working [21 p224]. The impact of stroke on return to work for both the stroke survivor and the spousal caregiver is considerable. This is an important concern that needs to be addressed. As a result, this study examined through quantitative analysis and case scenarios the work patterns of spousal caregivers and stroke survivors in the first 12 months after hospital discharge.

2 Method

2.1 Objective

The purpose of this study was to perform a secondary analysis of data collected during the course of the CAReS study (described below) in order to examine the phenomenon of return to work among study participants. Toward that end, it provides a descriptive analysis of 159 stroke survivor and spousal caregiver demographic characteristics and analyzes relationships between the return to work patterns of these individuals and their demographic characteristics and their scores on a variety of instruments.

2.2 Design

This study is a secondary analysis of a randomized controlled trial known as Committed to Assisting with Recovery After Stroke (CAReS). The current study provides a descriptive and inferential analysis of CAReS participants to explore relationships between gender, age, ethnicity, education, type of insurance, type of stroke, location of stroke, motor functional status, cognitive functional status, depression, mutuality, life satisfaction and return to work for both stroke survivors and their spousal caregivers; three descriptive case scenarios are used to illustrate some of the more common return to work patterns of participants.

2.3 Parent study

The CAReS Study was a National Institute of Health-funded interdisciplinary randomized controlled trial (NR005316) [22] that enrolled 159 stroke survivors and their spousal caregivers over a 5-year period. The aim of the original analysis of the CAReS study was to compare the outcomes of a participant group receiving a home-based psychoeducational program to those of a participant group receiving only mailed information [22]. For the CAReS Study, dyads were recruited from 5 rehabilitation sites before the stroke survivor was discharged from the hospital. Dyads were followed for one year [22], and were randomly assigned to receive either a mail-based educational intervention or a home-based interdisciplinary intervention [22]. Both qualitative and quantitative data were collected from the dyads at baseline (post hospital discharge) and at 3, 6, 9, and 12 months after baseline; data included information on burden, coping, depression, function, health status, mutuality, stress, and support [22]. The CAReS study was approved by the Institutional Review Boards of the two universities involved in the study as well as the five hospital systems from where the dyads were recruited [22]. Recruiters obtained written informed consent from participant dyads upon study enrollment [22]. This paper is covered under the original Institutional Review Boardapproval.

2.4 Sample

CAReS used convenience sampling. To participate in the CAReS study, stroke survivors needed to 1) be 50 years of age or older; 2) speak English; 3) have had a stroke in the past 12 months; 4) have a FIM™ score indicating needing daily assistance with activities of daily living; 5) be planning to go home with their spousal caregiver at discharge; and 6) live no more than 50 miles from the university/hospital area where the study was being conducted [22]. Spousal caregivers also needed to be English-speaking. Stroke survivors who 1) were on hospice care, 2) had disorders such as global aphasia or dementia which prevented them from consenting to being in the study or participating in the education provided by the study, 3) had other major illnesses that would interfere with stroke rehabilitation, 4) had severe psychopathology, or 5) had a spousal caregiver who was unwilling to participate in the study were excluded from the study [22]. As participants had experienced stroke in the past year and baseline assessment occurred post discharge, there was a variation in time post stroke amongparticipants.

2.5 Data collection instruments

As part of the data collection procedures for the CAReS study, a work questionnaire was developed to ascertain the occupation and work status of both stroke survivors and their caregivers, pre- and post-stroke. The questionnaire was administered by the data collector along with the other tools at baseline, 3, 6, 9, and 12 month visits. If the caregiver had difficulty completing the questionnaire, then the data collector assisted. Information was obtained about current work situation, the number of hours (greater or lesser than 20 hours/week), and plans for continuing or not returning to work. Two other questions asked of the dyad pertained to responsibilities for a minor, grandchild, or a person with a disability and the kind of health insurance they had, e.g. HMO, Preferred Provider Organization, Medicaid, Medicare, VA, private, and other.

Cognitive and motor function of the stroke survivor was measured by using the FIM™ at baseline, 3 months, 6 months, 9 months, and 12 months [23, 24]. Dodds et al. [25] showed the FIM™ to have a generally high internal consistency with a Cronbach’s α of 0.93. It has been determined to have acceptable discriminative ability and to be a useful assessment with the post stroke population [23 , 26]. The total FIM™ has demonstrated high interrater reliability (ICC = 0.96) [27]. Cronbach’s α was 0.95 for the FIM™ in the CAReS study.

Stroke survivor and caregiver depression were measured with the 15-item Geriatric Depression Scale (GDS-15) at baseline, 3 months, 6 months, 9 months, and 12 months [23, 28]. The GDS-15 has shown a high level of internal consistency (Cronbach’s α= 0.80) [23 p373] [29 p260]. In the CAReS study, Cronbach’s α was 0.76 for theGDS-15 [22].

Mutuality in the dyad’s relationship was measured at baseline, 6 months and 12 months using a scale describing mutuality [30 –32]. This scale has been shown to have consistent predictive value [30].

Life satisfaction of the stroke survivor and the caregiver was measured at 12 months by the Satisfaction With Life Scale (SWLS) [31, 33]. This scale has demonstrated high temporal reliability and high internal consistency [34 p71].

2.6 Data analysis

Data for the current study were obtained from the CAReS data set which were analyzed for patterns using descriptive statistics. Relationships were explored between work, demographic, and other variables, including type of insurance (HMO/Preferred Provider Organization or Medicaid/Medicare), type of stroke (thrombus compared to hemorrhage), location of stroke (left compared to bilateral; right compared to bilateral), motor functional status, cognitive functional status, depression, mutuality, and life satisfaction. To test the predictive nature of the variables of interest, a series of binary logistic regressions were conducted to predict both stroke survivor and caregiver working status. Binary logistic regressions are used to predict the odds of obtaining a particular outcome of a dichotomous variable from a set of predictor variables. For the purposes of this study, the binary logistic regressions were used to determine the odds of whether a stroke survivor or caregiver was working from baseline scores as well as at three, six, nine, and twelve month follow up scores.

3 Results

The final sample consisted of 159 Caregiver-Stroke Survivor dyads. Frequencies and percentages of the categorical demographic variables are illustrated in Table 1. The majority of caregivers were Caucasian (59.1%), followed by African American (19.5%), and lastly Hispanic (17.0%). Ethnic distribution was similar for stroke survivors. The majority of caregivers were female (74.8%); all caregiver-stroke survivor dyads were heterosexual. Stroke survivors’ ages ranged from 40 to 86 years of age, and from 50 to 87 years of age for caregivers. Approximately one quarter (28.3%) of participant dyads were dual income couples at baseline. Almost half of the stroke survivors and caregivers were working prior to the stroke. The number of caregivers working over the course of the study did not change significantly; however, only 12 stroke survivors were working at the 12 month follow-up (See Table 1).

Table 1
Frequencies and percentages of categorical demographic variables

Caregiver Stroke Survivor

n % n %

Ethnicity

Caucasian 94 59.1 94 59.1

African American 31 19.5 32 20.1

Hispanic 27 17.0 28 17.6

Gender

Female 119 74.8 40 25.2

Male 40 25.2 119 74.8

Working (Yes)

Baseline 72 45.3 73 45.9

3 Months 65 40.9 13 8.2

6 Months 62 39.0 11 6.9

9 Months 62 39.0 9 5.7

12 Months 64 40.3 12 7.5

	Caregiver	Stroke Survivor
Ethnicity
Caucasian	94	59.1	94	59.1
African American	31	19.5	32	20.1
Hispanic	27	17.0	28	17.6
Gender
Female	119	74.8	40	25.2
Male	40	25.2	119	74.8
Working (Yes)
Baseline	72	45.3	73	45.9
3 Months	65	40.9	13	8.2
6 Months	62	39.0	11	6.9
9 Months	62	39.0	9	5.7
12 Months	64	40.3	12	7.5

Return to work predictors are shown in two summary tables. The significant predictors of return to work across all data points for caregivers and stroke survivors are indicated (Table 2 for caregivers and Table 3 for stroke survivors). These have been provided so that the reader may obtain a bird’s-eye view of the data overall.

Table 2

Summary of predictors for caregivers across all data points

Variable	Data Points: Baseline	3	6	9	12
Age	X	X	X	X	X
Gender	X	X	X	X^*	X
Ethnicity			X
Mutuality	X

^* = marginally significant.

Table 3

Summary of predictors for stroke survivors across all data points

Variable	Data Points: Baseline	3	6	9	12
Age			X	X^*
Ethnicity	X
Partner Working	X	X^†	X	X^†
Education		X^*	X^*	X
FIM Cognitive			X
Location of Stroke				X
Medicare/Medicaid					X

^* = marginally significant. ^† = interpret with caution due to insufficient cases in each group.

The following paragraphs, with respective Tables 4–8, will report the significant predictors for return to work for stroke survivors and their spousal caregivers for baseline, 3, 6, 9, and 12 months. As mentioned earlier, since participants had experienced stroke in the past year and baseline assessment occurred post discharge, there was a variation in time post stroke among participants.

Table 4

Predictors of caregivers and stroke survivors working at baseline

	Caregiver		Stroke Survivor
Predictor	OR	p-value	OR	p-value
Age^*	0.86	<0.001	0.89	0.007
Gender (male compared to female)	4.320	0.036
Ethnicity (African American compared to Caucasian)			4.73	0.027
Ethnicity (Hispanic compared to Caucasian)	0.166	0.019
Partner Working (Yes)			3.15	0.024
χ ²		58.54		52.34
df		15		16
p-value		<0.001		<0.001
Nagelkerke R²		0.483		0.448

^*Continuous variable.

Table 5

Predictors of caregivers and stroke survivors working at 3 months

	Caregiver		Stroke Survivor
Predictor	OR	p-value	OR	p-value
Age^*	0.87	<0.001
Gender (male compared to female)	4.41	0.035
Partner Working (Yes)			17.251	0.018
Education (at least a college degree, compared to less than high school completion)			0.135	0.054
χ ²		49.25		21.01
df		14		12
p-value		<0.001		0.05
Nagelkerke R²		0.466		0.393

^*Continuous variable.

Table 6

Predictors of caregivers and stroke survivors working at 6 months

	Caregiver		Stroke Survivor
Predictor	OR	p-value	OR	p-value
Age^*	0.83	<0.001
Gender (male compared to female)	9.85	0.006
Education (at least a college degree, compared to less than high school completion)			0.03	0.054
FIM Cognitive^*			3.272	0.034
Mutuality^*	0.27	0.018
χ ²		59.96		25.94
df		15		14
p-value		0.001		0.026
Nagelkerke R²		0.560		0.511

^*Continuous variable.

Table 7

Predictors of caregivers and stroke survivors working at 9 months

	Caregiver		Stroke Survivor
Predictor	OR	p-value	OR	p-value
Age^*	0.83	<0.001	1.19	0.073
Gender (male compared to female)	3.90	0.089
Education (at least a college degree, compared to less than high school completion)			0.06	0.04
Partner Working (Yes)			18.21	0.016
Location of Stroke (right compared to bilateral)			0.02	0.040
χ ²		58.17		24.98
df		14		13
p-value		<0.001		0.023
Nagelkerke R²		0.550		0.494

^*Continuous variable.

Table 8

Predictors of caregivers and stroke survivors working at 12 months

	Caregiver		Stroke Survivor
Predictor	OR	p-value	OR	p-value
Age^*	0.83	<0.001
Gender (male compared to female)	7.87	0.02
Partner Working (Yes)			33.36	0.012
Medicare/Medicaid (Yes)			17.11	0.045
χ ²		53.28		18.47
df		16		14
p-value		<0.001		0.186
Nagelkerke R²		0.536		0.364

^*Continuous variable.

3.1 Predictors of working at baseline

The overall logistic regression model predicting whether or not stroke survivors and caregivers were working at baseline was statistically significant (Table 4). Age was a significant predictor of working status at baseline for both caregivers (OR = 0.86, p < 0.001) and stroke survivors (OR = 0.89; p = 0.007); older individuals were less likely to be working at baseline than younger individuals. Ethnicity was also a significant predictor of work status at baseline (OR = 0.166, p = 0.019 for caregivers and OR = 4.73, p = 0.027 for stroke survivors); African American stroke survivors were nearly five times as likely as Caucasian stroke survivors to be working at baseline and Hispanic caregivers were less likely to be working than Caucasian caregivers at baseline. Additionally, partner work status was a significant predictor of stroke survivor working status. At baseline those whose caregivers were working were over three times more likely to be working (OR = 3.15, p = 0.024). Lastly, male caregivers were over four times more likely to be working at baseline compared to female caregivers (OR = 4.320, p = 0.036).

3.2 Predictors of working at three months

The overall logistic regression model predicting working status after three months was statistically significant for caregivers and marginally significant for stroke survivors (Table 5). Age was again a significant predictor of work status at 3 months for caregivers (OR = 0.87, p < 0.001) but not for stroke survivors. Compared to female caregivers, male caregivers were over four times as likely to be working at 3 months (OR = 4.41, p = 0.035). Similar to baseline, partner working status was a predictor of stroke survivor working status after three months (OR = 17.251, p = 0.018) but not caregiver working status. However, this should be interpreted with caution due to insufficient cases in each group. Finally, education level of the stroke survivor was a marginally significant predictor of stroke survivors’ work status at 3 months (OR = 0.135, p = 0.054), indicating that stroke survivors who had at least a college degree were less likely to be working at 3 months compared to those who only had some high school education.

3.3 Predictors of working at six months

The overall logistic regression model predicting working status after six months was statistically significant for both caregivers and stroke survivors (Table 6). Age (OR = 0.83, p < 0.001) and gender (OR = 9.85, p = 0.006) were again significant predictors of caregiver working status but not stroke survivor working status; male caregivers were almost ten times as likely as female caregivers to be working at 6 months. Similar to three months, stroke survivors’ educational level was a marginally significant predictor of their work status at 6 months (OR = 0.03, p = 0.054). Additionally, stroke survivors’ FIM™ cognitive scores at 6 months were a significant predictor of stroke survivors’ work status at 6 months (OR = 3.272, p = 0.034), indicating that for every unit increase in FIM™ cognitive scores at 6 months, stroke survivors were over three times more likely to be working at 6 months. Finally, mutuality was a significant predictor of caregiver working status (OR = 0.27, p = 0.018), indicating that higher mutuality scores were associated with higher odds of caregivers working at six months.

3.4 Predictors of working at nine months

The overall logistic regression model predicting working status of both caregivers and stroke survivors at nine months was statistically significant (Table 7). Age remained a statistically significant predictor for caregivers (OR = 0.83, p < 0.001) and was marginally significant for stroke survivors (OR = 1.19, p = 0.073). Caregiver gender was a marginally significant predictor of caregiver work status (OR = 3.90, p = 0.089). Similar to baseline and three months, partner work status was a significant predictor (OR = 18.21, p = 0.016) of the stroke survivor’s work status. The educational level of stroke survivors was also a significant predictor of work status at nine months (OR = 0.06, p = 0.04); those who had a college or graduate degree were only one-half as likely to be working at nine months compared to those who only had some high school education. Additionally, location of stroke was a significant predictor of stroke survivors’ work status at nine months (OR = 0.02, p = 0.040); those who had a stroke in the right hemisphere of the brain, compared to those who had a bilateral stroke, were less likely to be working at the nine month assessment.

3.5 Predictors of working at 12 months

Working status was statistically significant at 12 months for caregivers but not for stroke survivors (Table 8). However, having Medicaid/Medicare was a significant predictor of stroke survivors’ work status at twelve months (OR = 17.11, p = 0.045), indicating that those who had Medicaid/Medicare, as compared to those who did not have this type of insurance, were over 17 times more likely to return to work at the twelve month point. Similar to earlier evaluations, age (OR = 0.83, p < 0.001) and gender (OR = 7.87, p = 0.02) of caregivers continued to predict their working status. Partner working was a significant predictor of stroke survivor working (OR = 33.36, p = 0.012); however, this should be interpreted with caution due to the small numbers in allgroups.

4 Case scenarios

A variety of work patterns were apparent in the work histories of both stroke survivors and caregivers. The following case scenarios serve as examples of some of the more typical patterns. For the purposes of confidentiality, pseudonyms have been substituted for participants’ names throughout.

Pattern 1. Stroke survivor working pre-stroke followed by no work post-stroke; caregiver working pre-stroke and continued post-stroke.

Mr. Orlando was a 61 year old Hispanic male who had worked as a marketing consultant prior to his stroke; he and his younger wife had two school age children. Due to a right ischemic stroke that affected his motor, perceptual, and language functioning, he was unable to return to work. Since the initial contact in the study, he had regained his self-care and instrumental independence, but was unable to work in a full-time capacity. His wife continued to work following her husband’s stroke to maintain their lifestyle and income.

Pattern 2. Stroke survivor working pre-stroke followed by eventual return to work continued beyond one year; caregiver stopped work post-stroke, but then resumed working.

Mr. Long was a Caucasian male in his mid-fifties when he had a right cerebrovascular accident which impaired his left side. He used a wheelchair, and was dependent for most self-care activities. Pre-stroke, he was a professor at a local university; this kind of occupation allowed him to take time off for rehabilitation, following which he was able to resume teaching on a part-time basis. His wife was also an instructor at the same university; she stopped working after her husband’s stroke, but then returned to work after an extended length of time spent caring for him.

Pattern 3. Stroke survivor working pre-stroke followed by unsuccessfully returning to work; caregiver work interrupted by husband’s functional limitations.

Mr. Duff was an African-American male in his mid-fifties who worked as a computer drafstman prior to the stroke. He had a right cerebrovascular accident which affected his left side (his dominant hand) and caused perceptual deficits. He could ambulate unassisted and perform most self-care activities, but when he returned to work a few months after the stroke, he was unable to perform the required tasks. His wife was a bus driver and initially stopped working to be with her husband, then resumed for a while. Eventually, that job became unavailable. Due to lack of health insurance coverage and financial issues, this couple lost their home and returned to family in another State.

5 Discussion

5.1 Stroke survivors

At baseline, stroke survivors who were working were likely to be among younger participants, while stroke survivors who had a working partner were also more likely to be working. Additionally, African American stroke survivors were much more likely to be working than their Caucasian counterparts. This may reflect socioeconomic necessity to work, as well as cultural and gender-based pressures about working. In the present study, there was a clear change in the work status of stroke survivors from baseline (45.9% working) to the end of 12 months (7.5% working). Sreedharan et al. [35] also reported a marked change for stroke survivor work status from 62.7% pre-stroke to 20.7% post-stroke. Similarly, Eriksson et al. [36] reported that 31% of stroke survivors were working before their stroke and 17% were working at 12 months. However, some studies report high percentages (75%) of return to work among stroke survivors [37]. As mentioned earlier, according to Wang et al. [15], 22% to 53% of stroke survivors return to work within 6 to 12 months of having experienced stroke [15 p554]. The percentage of stroke survivors who had returned to work at 12 months post baseline assessment in the present study was well below the lower end of that range.

Sreedharan et al. [35] found that being male was significantly associated with post-stroke employment loss for stroke survivors [35 p97]. Hackett et al. [37] found that being male was a significant predictor of stroke survivor return to work, but, surprisingly enough, we did not find gender a significant predictor of stroke survivor working status in the present study. This finding is supported by Doucet et al. [38]. With the exception of the baseline measure, ethnicity was also not associated with stroke survivor work status; a similar finding to Wozniak et al. [39]. However, a New Zealand study by Glozier et al. [40] found that having “nonwhite ethnicity” [40 p1529] was associated with lower odds of a stroke survivor returning to work at 6 months. It is unclear why gender and ethnicity were not predictors of stroke survivor return to work in the current study.

Hofgren et al. [41] and Wilz & Soellner [42] report that stroke survivor age was not associated with return to work [42 p1492]. However, in the present study, younger age was a significant predictor, and, at 9 months, a marginally significant predictor for stroke survivor working status. Wozniak et al. [39], Treger et al. [17] and Hackett et al. [37] reported similar findings: younger age is associated with stroke survivor return to work.

While Wozniak et al. [39], Wilz & Soellner [42] and Doucet et al. [38] found no association between education and return to work in stroke survivors, we found that at certain data points (marginally significant at 3 and 6 months; significant at 9 months), stroke survivors who had a college degree or higher were less likely to be working than their counterparts who had less than a college degree. This is in opposition to a Swedish study [43] where return to work was associated with having a university education [43 pp1,4]). The difference may partially be due to age differences among the participants in the two studies, as our study recruited persons age 50 and older, while Trygged et al. [43] assessed younger stroke patients (ages 40–59). It could be that (relatively) older stroke survivors who have a higher educational level may have greater access to retirement benefits and may be financially able and more willing to stop working post-stroke. Another Swedish study [44] of stroke survivors who had strokes at age 60 or less reported participants were more likely to return to work if they had a “basic education” [44 p128] as opposed to “upper secondary school education [or] tertiary education” [44 p128].

Regarding cognitive functioning and stroke survivor return to work, our findings showed that a higher FIM™ cognitive score at 6 months was associated with return to work at 6 months (in our study, for every unit increase in FIM™ cognitive scores at 6 months, stroke survivors were over three times more likely to be working at 6 months). This is not surprising and is supported by Vestling et al. [44] who found “preserved cognitive ability” [44 p129] to be one of the most significant predictors of stroke survivors returning to work. This is not always the case, as, conversely, Hofgren et al. [41] reported that cognitive function in their sample of stroke survivors was not a significant variable in their returning to work. Similar to Hofgren et al. [41], our study did not find the motor FIM™ score to predict work status of the stroke survivor. Although Vestling et al. [44] found that the FIM™ motor score was a significant predictor for returning to work in their sample of stroke survivors, walking was the most important predictor.

Although Treger at al [17] reported generally no association, and Wozniak et al. [39], Hofgren et al. [41], Wilz & Soellner [42] and Doucet et al. [38] reported no association regarding location of stroke and stroke survivor return to work, we did find a significant association at 9 months with right-sided strokes (as opposed to bilateral) being associated with decreased odds of return to work. Similar to our study, Saeki [16] and Glozier et al. [40] report no association between stroke subgroup or type and return to work for the stroke survivor. Trygged et al. [43] did report that patients who had experienced subarachnoid hemorrhage had a “comparatively positive outcome” [43 p7] regarding return to work when compared to other stroke subtypes such as cerebral infarction and intracerebral hemorrhage.

Depression in our sample of stroke survivors was not a predictor of stroke survivor’s ability to return to work. This is echoed by Wozniak et al. [39] who found that “depression measured 7 to 10 days after stroke” [39 p2570] was not associated with a stroke survivor working, and Hackett et al. [37], who found that a lack of depression at 28 days post stroke was not associated with a stroke survivor’s work status.

Hackett et al. [37] found that stroke survivors in Australia with private health insurance were more likely to have returned to work within one year. In the present study, stroke survivors with Medicaid/Medicare were actually 17 times more likely to have returned to work when assessed at 12 months. This may reflect fundamental differences between the health insurance systems in Australia and the United States. We did not find that having a HMO/Preferred Provider Organization to be a significant predictor for stroke survivor work status.

In the present study partner working status was a predictor of stroke survivor working status. This occurred at baseline as well as at 3, 9, and 12 months (the 3 and 12 months results should be interpreted with caution due to insufficient cases in each group). Given the dearth of literature on partner work status as a predictor of stroke survivor return to work, our study makes an important contribution in this area. We suggest that in our study some dyads may have been younger in age in general and felt the need to work for both income and other benefits associated with the working role. Also, there could have been a desire on the part of the stroke survivor, who was usually male, to remain in the provider role for as long as possible.

5.2 Caregivers

While the majority of caregivers in this study were female, at baseline, caregivers who were working were considerably more likely to be male. They also were more likely to be younger, and Hispanic caregivers were less likely to be working than Caucasian caregivers. These elements may reflect socioeconomic necessity and desire on the part of younger persons to continue working, as well as cultural and gender-based pressures about working versus caregiving. Little literature exists regarding return to work of the spousal caregivers of stroke survivors. One study by Sreedharan et al. [35] in South India found there was a slight decrease in the amount of (mostly spousal) working caregivers from pre-stroke to post-stroke (from 34.7% to 33.3%). This is somewhat similar to our study where there was a decrease in the amount of working caregivers (from 45% to 40.3%) by the end of 12 months.

Caregiver gender was a predictor of caregiver working status in our sample. We found that male caregivers were more than four times as likely to be working at baseline and three months than female caregivers. Male caregivers were also almost ten times as likely to be working at six months, almost four times as likely to be working at nine months (though marginally significant), and over seven times as likely to be working at twelve months than female caregivers. Our findings that male caregivers were more likely to be working than female caregivers may not be surprising due to traditional gender-based role expectations regarding work. Interestingly enough, Ko et al. [21] did not find a gender-related difference between (mostly spousal) working and non-working caregivers of stroke survivors (Note only descriptive statistics were reported). It is interesting that, while gender was a predictor in our study for caregiver return to work, it was not a predictor for stroke survivor return to work.

It is not surprising that older caregivers were less likely to return to work. Mirroring our findings for stroke survivors at 9 months, this finding is similar to that of Ko et al. [21], who collected data at baseline (which was 3–9 months post stroke), 4 and 8 months, and found that stroke survivor family caregivers who were working were likely to be younger than those who were not working. The authors’ interpretation of these findings was that the older caregivers had either retired before becoming a caregiver, were able to retire when the stroke occurred, or that they were aging and less likely to still be in the workforce [21 p223]. Similar explanations could apply to our findings as well.

Although Hispanic caregivers were less likely to be working than Caucasian caregivers at baseline in our study, ethnicity was not a predictor of caregiver work status at any other data points. In contrast to our study, Ko et al. [21] found at baseline that “minority caregivers were more likely to be employed than white non-Hispanic caregivers” [21 p223].

We did not find caregiver education a predictor of working status, and Ko et al. [21] did not find any difference between working and non-working caregivers based on education (Note that only descriptive statistics were reported). While Ko et al. [21] found that working caregivers were more likely to have depression compared to non-working caregivers [21 p221, 222], Sreedharan et al. [35] found no correlation between depression in caregivers and work. Similarly, we found caregiver depression scores not to be predictive of return to work for caregivers. However, we found that a higher mutuality score between the caregiver and stroke survivor at 6 months predicted that the caregiver was more likely to be working. Although Ko et al. [21] addressed family functioning of the stroke survivor, family conflict regarding the stroke recovery process, and how much support the caregiver received from other family members, these authors did not measure mutuality between the stroke survivor and the caregiver. As little literature exists regarding family caregivers of stroke survivors and return to work, our study with its multiple data points makes an interesting contribution to the literature regarding gender and mutuality as predictors of stroke survivor caregiver work status.

Some interesting patterns emerged in the data when comparing predictors of stroke survivor return to work with predictors of caregiver return to work. In some instances, the two groups appeared to be almost diametrically opposed. For example, although age was a predictor for both groups at baseline and nine months and at all other data points for caregiver return to work, it was not a predictor for stroke survivor return to work at 3, 6, and 12 months. Male gender was a predictor of caregiver return to work throughout all data points, but gender was never a predictor for stroke survivor return to work. At several data points, education was a predictor for stroke survivor working status, but never a predictor for caregiver working status. Partner working status was a predictor for stroke survivor return to work at all but one data point in the study, but was never a predictor for caregiver working status. While mutuality was a predictor of caregiver return to work at six months, it was not a predictor for stroke survivors at baseline, 6 or 12 months (the data points at which it was measured). Finally, while stroke location predicted stroke survivor work status at 9 months, and type of insurance did similarly at 12 months, stroke location and type of insurance were never predictors of caregiver work status. These dissimilarities may be indicators of strong differences between the two groups in terms of factors affecting or motivating return to work.

6 Implications

As in Kuluski et al. [9], the desire to return to work was high for stroke survivors participating in the CAReS study. The small percentage of stroke survivors in our study who returned to work is of concern. Work provides an important role for stroke survivors as well as spousal caregivers, and work loss by either impacts the patient, the caregiver and family members in relation to “financial problems, limitations in leisure and holiday activities, social isolation, reduced self-efficacy, and an overall decrease in quality of life” [42 p1487]. Furthermore, some stroke survivors identify feelings of “loss of their former selves” [9 p5]. Life satisfaction has been found to be lower among stroke survivors at home with no work or activity [45 p5], while quality of life has been found to be lower in non-working caregivers of stroke survivors [46].

There are several issues regarding return to work of stroke survivors expressed in the literature that need further comment. Stroke survivors with improved bodily functions and activities of daily living are usually considered to have met their rehabilitation goals. Few have been encouraged or aided through that process to return to work [13 , 47–49]. Rehabilitation professionals need to address return to work early and regularly as part of personalized intervention planning for stroke survivors who desire to do so [9 , 49–52].

A longer period of time for stroke rehabilitation is warranted, as there is evidence that stroke survivors continue to improve after the acute stage and into the chronic stage [14 , 54], and some concerns do not manifest until after a client has returned to the work environment [55]. As Culler et al. [55 p333] state: “A more comprehensive and longitudinal follow-up is needed to seamlessly assist stroke survivors making the transition from the rehabilitation process to maintaining employment in the work force.” Saito et al. [56] and Scott and Bondoc [13, 49] highlight the importance of partnership between medical professionals at hospitals and vocational rehabilitation organizations to set up work support situations for stroke survivors. Psychosocial rehabilitation is rarely provided for the stroke survivor [57]; stroke rehabilitation programs should recommend that stroke survivors and their spousal caregivers obtain counseling and become involved in support groups [22 p55].

Finally, while Ntsiea et al. [58] report on a randomized controlled trial investigating the effectiveness of a return to work intervention for stroke survivors, more high quality research evidence is needed to develop and document the effectiveness of return to work assessments and interventions on the part of occupational therapy as well as vocational rehabilitation programs in general, including return to work approaches for stroke survivors [13 , 59–61].

Work is one of the 8 main occupations addressed in the domain of occupational therapy; this includes “employment interests and pursuits … employment seeking and acquisition … job performance… retirement preparation and adjustment” [62 pS20]. Occupational therapists are encouraged to address this area for both stroke survivors and caregivers. The occupational therapist can complete an occupational profile and an analysis of occupational performance (including occupations, client factors, performance skills, and context and environment); plan intervention accordingly; and address the outcomes the client wishes to achieve regarding work [62, 63]. For example, one approach the occupational therapist can teach the stroke survivor to use in the work place is self-management techniques such as energy conservation [61, 63]. Other services the occupational therapist may provide could include “job site analysis … [and] job-specific conditioning” [64 pCE-5]. The occupational therapist can also educate the spousal caregiver [65] and stroke survivor about any support services/groups and resources available in the community post-discharge; however, generally these tend to be limited [54]. According to Leng [60], “therapists may need to be more proactive at the workplace to create a more supportive employment climate to enable stroke clients to return to work” [60 p97]. This may include discussing needed accommodations with the employer [63]. Finally, occupational therapists need to educate treatment teams about the contributions occupational therapy can make regarding their clients’ return to work [51].

7 Limitations

Limitations of this study include that work was not directly addressed as part of the intervention for CAReS; different outcomes may have resulted if issues surrounding return to work had been directly addressed with the stroke survivors and their caregivers. Participants were recruited into the study who had experienced stroke in the past year; as a result there was a varied margin of time post stroke for the baseline, 3, 6, 9, and 12 months assessments among participants. This variation could have had an effect on participant scores for the data collection instruments used in this study. Since the study design was descriptive, no causality can beindicated.

8 Suggestions for future research

It would be beneficial to examine socioeconomic status, alone and in interaction with the other variables, as a predictor of return to work in either group. It would also be helpful to examine causes of diminished work outcomes for stroke survivors [61] and their spousal caregivers. Research into the usability of assessments with the stroke survivor population is warranted. Finally, research using mixed methods designs, such as combining randomized control interventions with qualitative interviewing to determine participants’ perspectives, should be employed as a means of investigating the effectiveness of interventions regarding return to work for bothpopulations.

9 Conclusion

Results of this study revealed low levels of return to work of stroke survivors one year post baseline. Partner working status; ethnicity at baseline; stroke survivor education at 3, 6, and 9 months; cognition at 6 months; younger age at baseline and 9 months; right-sided stroke at 9 months; and having Medicare/Medicaid at 12 months were all predictive of stroke survivors returning to work. In addition, results highlighted younger age; male gender; ethnicity at baseline; and mutuality at 6 months as predictors of caregivers working. Return to work post-stroke for both the stroke survivor and the spousal caregiver is a critical and complex concern. Both stroke survivors and their spousal caregivers need support concerning issues of their return to work; return to work should be addressed as a regular component of stroke survivor rehabilitation. Occupational therapists need to incorporate ways in which they can facilitate return to work for their clients, be they stroke survivors or spousal caregivers, who are grappling with the effect of stroke on their ability to work and therefore provide a livelihood as well as enact a meaningful role.

Conflict of interest

None to report.

Footnotes

Acknowledgments

The authors would like to acknowledge Erica M. Pina, MS, OTR as our research assistant for this article; Karen Janssen, MSN, RN for data collection; and all other CAReS team members. We would also like to thank the stroke survivors and their caregivers for their participation in the CAReS study. This work was supported by the National Institutes of Health, National Institute for Nursing Research R01 NR005316 (Sharon K. Ostwald, PI) and the Isla Carroll Turner Friendship Trust.

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