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It has been noted, though, that the psychosocial status of stroke patients is not always in accordance with their functional status; sometimes a small physical disability may coexist with great difficulty in general adaptation.
Despite the evidence that satisfactory social support plays a role in recovery from stroke, three major gaps remain in the literature. First, outcome measures refer only to functional status and not to psychosocial status (depression, social interest), which may change independently of functional status. Second, although the effect of different quantity levels of family social support has been investigated, no study has examined which of the forms of family members' behavior have a profound effect on patients' rehabilitation process. Finally, the initial severity of the stroke and the functional status at discharge, which, along with age, are considered to be the most powerful predictors of stroke recovery, have rarely been tested
The purpose of this study is to examine the impact of the family social support on the rehabilitation process—defined as the functional, depression, and social status changes—of a sample of first-time stroke survivors. The study deals with all the above issues through a longitudinal and multiphasic patient assessment.
The sample of the study is part of a prospective stroke databank developed in the Department of Clinical Therapeutics of Athens University over a period of 5 years (1042 patients).
All study subjects, suffering from an acute first stroke, were admitted to the hospital and were classified according to aetiopathogenic mechanisms of stroke. A brain computed tomography scan was obtained on admission and standard investigations were performed during hospitalization according to the study protocol. Inclusion criteria for our study were: (1) patients with an acute first stroke, (2) hospitalization within 48 hours of the onset of neurologic symptoms, (3) no preexisting stroke deficit, and (4) informed consent for the study from the patient or a family member. Patients with transient ischemic attacks, recurrent stroke, and subarachnoid hemorrhage were excluded. During a period of 3 months (15 February 1993 to 15 May 1993) among 70 patients admitted to the hospital, 50 (71%) were screened (nine patients died, four patients were admitted more than 48 hours from stroke onset, three patients had recurrent stroke, and four patients refused to participate in the study). As the study was carried out, four more died and three dropped out, so data were collected on 43 patients (24 men, 19 women; aged 40 to 83yrs). The procedures followed for patient recruitment were in accordance with the Helsinki Declaration of 1975, as revised in 1983.
Stroke severity and rehabilitation variables assessment
Stroke severity was assessed by a physician on admission, by use of the Scandinavian stroke scale (SSS).
Scores range from 0 (very severe stroke) to 58. Rehabilitation variables—functional capacity, depression status, and social status—were assessed by three scales that were used by repeated measures over a 6-month period from stroke onset.
Functional capacity was measured using the Barthel index of activities of daily living (ADL index),
The ADL items, scored on an ordinal scale, assess ability to perform essential activities such as toilet use and feeding. Index scores range from 0 (complete functional impairment) to 100 (complete functional independence).
Depression status was assessed using the Zung scale.
The Zung scale has been shown to have a sensitivity of 97% and specificity of 63% for depressive disorder in a general medical clinic according to the Diagnostic and Statistical Manual of Mental Disorders, edition 3.
(In this study, three of the 40 items referring to major physical stroke symptoms were omitted. This approach of removing items not relevant to the population under study may be expected to optimize the sensitivity of the scale). The Zung items scored on an ordinal scale, range from 1.00 (no depression) to 4.00 (high depression).
Social status, ie, patients' mood and social involvement, was assessed by the Social scale. This scale was constructed from the three of the four subscales (A, B, and C) (21 items) of the General Health Questionnaire index.
Scores of the scale range from 0 (serious social dysfunction) to 100 (complete social involvement).
Patients' rehabilitation variables were assessed in the hospital before discharge (only functional status, because interviews on depression and social status were not possible for many patients) and at 1, 3, and 6 months from stroke onset, at patients' residences. All assessments were carried out by a physician's assistant who was trained in using the ADL index, the Zung scale, and the Social scale through several sessions on real patients. The assistant completed the three scales
forms after the interview, because several biases may be introduced by patients or proxies who complete questionnaires by themselves. When patients were unable to cooperate, a proxy replied. The interviewer was blind to other patients variables, such as initial stroke severity and family support received.
Social support subvariables
The family social support scale
The level of family social support was assessed using a questionnaire given by an experienced health visitor at the patient's residence, 1 month from stroke onset. We developed a construct of family support to meet two essential requirements not found in the literature.
Assessment of the quantity of social support was based on data from observation and inspection along with patient's (or proxy's) answers. The advantages of observational family assessment are elaborated by researchers.
In the Family Social Support (FSS) scale, each item has two equivalent parts: (1) a behaviorally specific question addressed to the patient, and (2) a question to be answered by the interviewer after inspecting the patient's residence and/or of proxy's attitude and behavior. Each item is scored on a Likert-type 3-point scale in which possible responses are explicitly stated. Both parts are filled out by the interviewer, the sum being the final item score. (For example, “Do they help you to keep yourself clean?” with answers “Always,” “Sometimes,” or “Rarely,” then inspect how clean the patient is, reporting “Very clean,” “Not so clean,” or “Unclean.”)
Consideration of family social support is the sum of three separate subscales reflecting three dimensions of social support: (A) compliance with therapeutic instructions, (B) instrumental support, and (C) emotional support. This conceptualization is based on the idea that a supportive family should adhere to treatment recommendations
The patient and his proxies are asked to show the medication that is being taken and to answer questions regarding the patient's physiotherapy schedule and life style adaptations. This information is then compared with the original therapeutic instructions and the degree of compliance is estimated. Scores range from 0 to 100 (100 = full compliance).
Subscale B, instrumental support, was developed on the basis of stroke patients treatment instructions
in collaboration with a PhD nurse and a physical therapist, both specialized in stroke rehabilitation. It elicits information about practical treatment of the patient (feeding, bathing, etc), as well as about major or minor modifications to the living facility in an attempt to help the patient and make him/her more independent. Scores range from 0 to 100 (100 = satisfactory instrumental support).
Subscale C, emotional support, was developed to assess involvement of family members with the patient, ie, how many hours they spent with him, how much interest they showed in her, how patient they have been with him, and how much they motivated and encouraged her. Scores range from 0 to 100 (100 = satisfactory emotional support).
The three subscales provide a mean, which is the index of family social support. The FSS scale has been tested with a number of first-stroke patients and items were modified accordingly. We worked with each subscale and selected those items that taken together produced a subscale with a high reliability. Test-retest reliability is.85 and split-half reliability is.82. Items yield significant correlations with total scores (Cronbach's alphas ranged between.72 and.89), an indication of internal consistency. To test validity, a discriminant analysis was performed on the FSS scores (assessed blindly) of two groups of stroke patients (home-treated and nursing home–treated). According to relevant evidence (unpublished data), the two groups were expected to yield different amounts of family support (high and low FSS scores, respectively). Results were as expected (60% of the former group and 83% of the latter were correctly predicted).
For the statistical analysis, repeated measures multivariate analysis of variance (MANOVA) on SPSS
a. SPSS Inc. 444 North Michigan Ave, Chicago, IL 60611.
was used, to examine the determinants of change in three outcome variables—functional status, depression, and social status—over a 6-month period. We studied the effect of different quantities of social support (independent variable) on the shape of patients' status trajectories, using prospectively gathered assessments (time) and controlling for stroke severity. Stroke severity was considered as a patient characteristic and was used as a covariate. Our design coupled serial measurement of outcome at standard measurement intervals. The hypothesis tested was that after controlling for time since stroke and stroke severity, patients receiving higher levels of social support have a significantly better and progressively improving functional and also depression and social status than patients with lower levels of support.
For statistical reasons, we grouped the support (FSS) variable. Our intention was to form three groups corresponding to three levels of support, and for this reason we divided patients at the 70th and 40th percentiles. High support (70 to 100) was received by 67% of the patients, medium support (40 to 69) was received by 24%, and low support (0 to 39) by 9%. The latter percentage is low, compared with that of other research data (17.4%),
where support was also grouped. This constriction of our data led us to our final decision to form two groups for two levels of support: the high support group (70 to 100) and the medium/low support group (0 to 69).
Because the FSS variable has three subscales, we tested the effect of each of them separately on the patients rehabilitation variables, by use of ANOVA. Reliability coefficients of the three subscales were satisfactory (.82 to.89).
FSS data collection at 1 month was repeated later, at 3 months, with the same interviewer. Changes over time were nonsignificant and a high correlation across time was obtained (r =.588, p =.001).
Twenty-four (56%) patients were men. This percentage is not statistically different compared with 613 (59%) men of our 5-year stroke registry. The mean age of patients was 70.7 years. The etiology of stroke in our sample was atherosclerosis in 10 patients, cardioembolism in 16, lacunar stroke in 9, infarction of undetermined cause in 11, and intracerebral hemorrhage in 4.
Patients' demographic and clinical characteristics in total and according to level of social support are presented in table 1.
1Table 1: Descriptive statistics of patients by levels of social support
Level of Social Support
Total (n = 43)
Low/Medium (n = 14)
High (n = 29)
Age (yrs) (mean±SD)
Sex (% female)
Marital status (% unmarried)
Stroke severity (SSS), (mean±SD)
Stroke unit/general medical ward
Days of hospitalization (mean±SD)
Discharge (not home) (%)
Diabetes melitus (%)
Coronary artery disease (%)
Atrial fibrillation (%)
Abbreviations: SSS, Scandinavian stroke scale (0 to 58).
Ten of 14 patients with medium/low support were women. Mean SSS was 34.2; 22 patients had a mild stroke (score 41 to 58) and 21 patients had a moderate/severe stroke (score 0 to 40). The high support group and the medium/low support group were equivalent with respect to age and stroke severity. Among 29 patients with high support, 22 had a mild stroke, and among 14 patients with medium/low support 8 had a moderate/severe stroke. After discharge the majority of patients (91%) returned home, where, in most cases, a wife (in 20 cases), sister, or children living in the home or nearby took care of them. Four patients (9%) were taken to nursing homes.
In 75% of the cases, the patient was the primary source of data in the four follow-up rehabilitation status interviews and in the social support assessments. Complementary information was gathered from proxies, wherever this was possible. Total FSS scores ranged from 27 to 95.
Social support levels and rehabilitation variable changes
Patients' consecutive rehabilitation scores correlated highly during follow-up assessments. Descriptive statistics for the three rehabilitation variables (functional status, depression, and social status) are presented in table 2, cross-classified by the level of family social support. The difference in mean functional status scores at discharge between low/medium and high support patients is not significant (t = 1.61) Mean functional status scores of patients with high social support have changed from 58 to 89 within the 6-month period. Change of this size (31% improvement) does not appear in any of the other two rehabilitation variables.
Table 2Mean values of health variables by levels of social support
Multivariate tests for functional status and time are highly significant (p = 0.001) and suggest that functional status, while adjusted for stroke severity, improves significantly with time within the 6-month period. (In repeated measures designs after transformation of variables, time is built into the specification of the dependent variable, one of which, in the present study, is functional status. Consequently, the effect of any other variable cannot be divorced from time. Moreover, in repeated measures designs the between- subjects effects are adjusted for the covariate, which in the present study is stroke severity.) The interaction of functional status with support and time (adjusted for severity) is also significant (p =.019), indicating that patients who receive more family social support, improve more over time with respect to functional status and according to stroke severity. (The test for the support effect is based on the constant [ADL in time] adjusted for the covariate [severity].) The univariate effect of time agrees with the above and is also highly significant (p =.001), indicating that the functional status improves with time since onset.
Depression status changes
Multivariate tests for depression status and time (table 3) are also significant (p =.001), suggesting that this variable (when adjusted for stroke severity) changes with time. This change, however, is not as continuous an improvement as that of functional status (table 2). The interaction of depression status with support and time (adjusted for severity) is not significant, which implies that the amount of social support does not affect the depression status of patients with different stroke severity levels over the 6-month period. The univariate effect of support on depression status is significant (p =.002), which suggests that patients who receive a high level of support (regardless of stroke severity) have a different depression status from patients who receive a low level of support.
Social status change
Multivariate results for patients' social status (table 3) indicate that this variable changes significantly over time (p =.020). Its interaction with support and time (adjusted for severity), however, is not significant. On the other hand, the univariate effect of support on patients' social status (regardless of severity) is significant (p =.001) and indicates that, overall, patients receiving high support have a significantly better social status.
The crucial role of stroke severity is manifested by the univariate results; the average scores of the four functional status measurements differ according to stroke severity (p =.021) and the same is true for the three depression status average scores (p =.001) and for the three social status average scores (p =.002). (To test the robustness of the cut point used to differentiate high from low/medium support groups, data were also analyzed using ordinary least-squares regression, with stroke severity and support as continuous variables. Results were analogous to the above. For simplicity, only MANOVA is presented here.) Further interpretation of the above effects will be possible by visual inspection of average curves.
Figure 1 illustrates the trajectories of recovery from stroke, showing changes in functional, depression, and social status over time for each level of support.Here, the stroke severity (SSS) scores are split into two groups: mild (scores 41 to 58) and moderate/severe scores (0 to 40). Figure 1A shows that in patients with mild stroke, mean functional status scores are high regardless of the quantity of support and have already plateaued within the first month. The high support curves slope upward, and the slope and height of the moderate/severe stroke and high support curve are quite noticeable, indicating continuous functional status improvement up to the sixth month. Findings suggest that the functional benefits of social support are not equal among those with less and more severe strokes and, therefore, that more severely impaired patients may require higher support. Further, among patients with moderate/severe stroke, those with high support have relatively better functional status scores at discharge than those with medium/low support; the difference, though, is not statistically significant (t = 1.95, NS). Mean levels of depression status (fig 1B) decline after the third-month measurement in both mild and moderate/severe stroke groups. Overall, major differences in depression status were not found between groups; patients receiving high support had only a slightly better depression status at the follow-up assessment than patients receiving medium/low support. This finding was also evidenced by the support effect finding of univariate statistics (p =.020) mentioned earlier. Regarding the social status of the patients (fig 1C), high support axes are well above the medium/low support ones with the same stroke severity. A decline after the third month, however, is obvious in these high support axes. Moreover, the social status of patients with mild stroke and medium/low support is not as high as their functional status.
Overall, the impact of social support on depression and social status already becomes apparent by the first month, but is more dramatic and lasting (fig 1, table 2) with regard to functional status.
Social support subvariables and rehabilitation variables
To determine the degree to which the three family support subvariables (compliance, instrumental support, and emotional support) affected patients' rehabilitation variables, we performed ANOVA tests with patients of high and medium/low support. F values and levels of significance of these comparisons are given in table 4. The amount of compliance with therapeutic instructions was found to have no significant effect on patients' functional, depression, and social status scores. Instrumental support of high quantity significantly affected patients' functional and social status throughout the 6-month period, while its effect on depression was limited. Last, emotional support in large amounts significantly affected the psychosocial health variables at the first- and third-month measurement and the functional variable at the third- and sixth-month measurements. Probably, the functional and social status of high support patients improves until the sixth month, mainly as a result of high instrumental and emotional support. The depression status improves at first through third month, mainly as a result of high emotional support.
Table 4Analysis of variance tests of functional psychological and social status by high and medium/low support*
Significance of F
Compliance with therapeutic instructions
* At each support subvariable, patients are grouped as high support (score 70-100) or medium/low support (score 0-69) subjects. NS, not significant.
The longitudinal method applied in this study revealed that the quantity of family social support received by the 43 first-stroke patients was found to significantly predict changes in their functional status as well as in their social and depression status within the first 6 months after the stroke. Among more severely impaired patients, a high level of support was found to be predictive of a great amount of progressive functional improvement. Functional recovery in these patients showed the steepest curves (fig 1), even after the third month, although it did not reach the level shown by the mild stroke patients, who also sustained their improvement over a longer period. Depression and social status recovery were not found to have a significant interaction with family support and stroke severity. However, the trajectories of change in moderate/severe stroke and higher support were more or less similar to those of mild stroke and lower support (fig 1). Lower scores and a lower rate of improvement were found for depression and social status than for functional status, revealing a more rigid and less predictable character. A certain decline noticed in these latter variables between 3 and 6 months, particularly in the high support groups, indicates that psychosocial rehabilitation does not eventually follow functional rehabilitation. The reason is possibly related to patients' disappointment that the process was not as complete as expected. Further investigation on this issue is required, because researchers
have found a significant correlation between depression and failure to resume social activity after stroke. Besides, it might be argued that because depression is affected by family support, it may at the same time have in itself a profound effect on the family. In studies where social support is not taken into account, a worse recovery picture
is observed in the majority of patients. Our findings stress the benefits of social support even in more severely impaired patients. The data also indicate that functional recovery alone should not be considered as the evidence of patient well-being.
The importance of family environment and social support for stroke disease, which has been stressed also by other authors,
is extensively illustrated in this study, which was carried out in the Athenian urban milieu; FSS scores did not change over time. Two-thirds of the patients received high levels of social support at home, although families in general have been reported to have limited initial knowledge about the special characteristics of the illness
and community rehabilitation services are rare. Only 9% of the patients received low levels of support. In fact, these patients were mostly those taken to nursing homes. Nursing homes are considered inefficient, and, for this reason, most Athenian families keep their patients at home, intending to offer appropriate amounts of support. Also, because in our sample most patients were recovering at home, the small percentage of low support seems reasonable. Most of the patients were married and a number of them lived with their spouse and/or children, while three patients moved to their children's home after the incidence. Caregivers were women in most cases (20 wives) and by tradition after milieu, women are more supportive than men. This may be the reason why the majority of patients receiving medium/low support were also women.
The present data also provide evidence about specific dimensions of social support. It was observed that the contribution of the three support subvariables to the beneficial effect of high social support is not equivalent. Compliance with therapeutic instructions, which is known to affect positively the course of a number of illnesses,
did not significantly affect the recovery process. On the other hand, instrumental support in high quantity was found to have a positive impact on functional status as well as on social status. Finally, high levels of emotional support from family members also had a profound effect on patients' rehabilitation variables (table 4).
The small sample size in this study calls for cautious interpretations. Consecutive and systematic measurements were intended to balance this shortcoming. The FSS was constructed for a direct and objective assessment of social support and an attempt to overcome any weakness of this instrument was made by reliability and validity tests and reassessment of all patients in the third month by the same interviewer. Yet, ratings by the same interviewer may imply bias, which could affect some variables.
Recruitment of all patients by the same facility is another shortcoming of the study.
Given the correlational nature of the study design, cause and effect relationships between support and stroke severity cannot be clearly distinguished, and therefore this is one more study limitation.
It has been recommended by a consensus conference on stroke research that follow-up assessment be performed from the time of stroke onset.
All follow-up assessments in our study were performed at 1, 3, and 6 months from disease onset, but, before those, the first assessment of functional status was performed before discharge, the day of which varied.
Premorbid measures of family social support were not available. It is thus impossible to know whether support before stroke differs from support after stroke. It is also not possible to assess whether more social support is a function of either stroke severity or recovery progress. Any such assessment, though, would not minimize the noteworthy association of social support with functional capacity and other rehabilitation variables.
In this study, ordinal level scores were treated as if they were equal interval and this places a great deal of trust in the robustness of the multivariate statistics.
Patients who received high support had a slightly less severe stroke, a younger age, and a relatively better ADL score at discharge—a tendency noticed also in other studies
—and the majority were men. A possible correlation between gender and support was revealed in this study. This correlation, however, which is crucial though not surprising, requires more extensive consideration. If, for instance, caregivers were men in most cases, would scores of social support have been much lower? Further investigation is needed to clarify which patient subgroups tend to be at a disadvantage regarding family care, and how this can be avoided.
In conclusion, the amount of family social support can, to a considerable extent, predict patient well-being better than features of the illness believed to be powerful, such as severity. The present evidence stresses the healing effect of a supportive family environment and the particular importance of instrumental and emotional support, illustrating at the same time how vulnerable stroke patients are to depression. Further research is needed to define factors that improve patients' psychosocial well-being, thus contributing to a holistic stroke recovery. Finally, it is suggested that stroke rehabilitation programs should aim at high levels of family support through education and other forms of assistance. Such procedures will help families to maintain and strengthen their supportive dynamics.
We thank Dr. Lia Tselika-Garfe, Department of Health Science, Athens, for helpful feedback and suggestions, and Ms. Sofia Argyropoulou, Ms. Kallioppi Vakrakou, and Ms. Despina Savvidou, for contacting the patients and carrying out the interviews.
☆No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors or upon any organization with which the author are associated.
☆☆Reprint requests to Evie Tsouna-Hadjis, PhD, Acute Stroke Unit, Department of Clinical Therapeutics, University of Athens School of Medicine, Alexandra Hospital, 80 V. Sofias & Lourou St, 11528, Athens, Greece.