Well-Being After Stroke in Canadian Seniors
Findings From the Canadian Study of Health and Aging
Background and Purpose— After a stroke many people continue to live with their residual impairments and disabilities in the community, which can pose a significant problem for survivors’ well-being. The purpose of this research was to investigate patterns of well-being in community-dwelling stroke survivors to identify those factors that restrict and enhance well-being.
Methods— A secondary analysis was conducted on data from the second wave of the Canadian Study of Health and Aging (CSHA-2). A national sample of 5395 community-dwelling Canadian seniors (aged ≥65 years) was interviewed for CSHA-2, including 339 stroke survivors (6.3%). Information was collected on health, social and demographic characteristics, and well-being. Comparisons were made between the health and functional status of stroke survivors and community-dwelling seniors who have not experienced a stroke. Multiple regression was used to examine the factors associated with well-being in stroke survivors.
Results— Compared with community-dwelling seniors who have not experienced a stroke, stroke survivors report a lower sense of well-being. Stroke survivors are also more likely to be restricted in their physical and cognitive function, to report worse mental health, and to be living with a greater number of comorbid health conditions. Mental health and physical and cognitive disabilities are associated with a reduced sense of well-being in stroke survivors, but social supports and educational resources moderate the impact of functional status on well-being.
Conclusions— Community-dwelling seniors who have had a stroke experience a reduced sense of well-being. However, social resources can help to alleviate the subjective burden of this common neurological condition.
Close to 300 000 Canadians are stroke survivors,1,2⇓ while the prevalence of stroke in the United States is estimated to be as high as 3 million.3 As stroke mortality rates decline,4–6⇓⇓ individuals are increasingly likely to live with their residual impairments and disabilities, which can pose a significant problem for survivors’ subsequent well-being. Restrictions in mobility and physical functioning have repeatedly been found to reduce the quality of life of stroke survivors,7–9⇓⇓ and survivors often report difficulty with family and social relationships.10
The purpose of this research was to investigate patterns of well-being in community-dwelling seniors who have experienced a stroke with the use of data from the Canadian Study of Health and Aging (CSHA), a national representative survey of Canadian seniors. Although CSHA has been instrumental in documenting the prevalence and incidence of dementia in Canada,11,12⇓ the scope of the study also included a wider range of issues of concern to older people, including the more positive aspects of health. Specifically, in the second wave of the study (CSHA-2), measures were included to explore the factors associated with subjective well-being.
Subjects and Methods
Secondary analyses were conducted on data from the CSHA, with particular emphasis on data collected in the well-being module of the second wave of the study (CSHA-2). The first wave of the study (CSHA-1) began in 1991 with a representative sample of community-dwelling (n=9008) and institutional-dwelling (n=1255) Canadians aged ≥65 years from 36 urban and surrounding rural areas in all 10 Canadian provinces. A second wave of the study (CSHA-2) was conducted 4 years later (1995–1996) when surviving subjects from the first wave were recontacted for follow-up. Details of the study methods have been previously published.11 The procedures followed in this study were approved by the ethics review board in each of the 18 study centers. Informed consent was given by all participating subjects.
Of the original community sample of 9008 seniors, 5395 community-dwelling seniors (59.9%) were interviewed at CSHA-2, while 3613 (40.1%) did not participate for various reasons: 1867 (20.7%) died between the 2 waves of the study, 308 (3.4%) had moved to an institutional setting, 402 (4.5%) were diagnosed with dementia, 587 (6.5%) refused, 251 (2.8%) could not be contacted, and 198 (2.2%) were unable to participate because of severe cognitive problems.
The Ryff Measure of Psychological Well-Being was included in CSHA-2.13,14⇓ This self-report measure assesses 6 core theoretical dimensions of well-being that are common to the mental health, clinical, and life-span developmental theories of positive psychological functioning. These 6 dimensions are as follows: self-acceptance, or positive attitudes toward oneself; autonomy, including qualities of self-determination and independence; environmental mastery, which is the individual’s ability to engage in and manage activities in one’s surrounding world; purpose in life, including the feeling that there is purpose in and meaning to life; personal growth, which represents one’s continual development and striving to realize one’s potential; and positive relations with others, which includes the ability to engage in close relationships with others.
The original measure consists of 120 items,13 but because of the time and cost restrictions of a national survey, the shorter 18-item version was included in CSHA-2, which includes 3 items for each of the 6 dimensions of well-being.15 Respondents rate themselves on each item according to a 6-point scale ranging from “strongly agree” to “strongly disagree.” For instance, 1 item assessing the dimension of autonomy reads, “I have confidence in my own opinions, even if they are contrary to the general consensus”; another, assessing personal growth, reads, “For me, life has been a continuous process of learning, changing, and growth.” Items are divided between positively and negatively phrased items, with reverse scoring performed for the negatively phrased items so that greater agreement with items results in a higher score. Total scores for each of the 6 dimensions are calculated by summing scores on the 3 items within each dimension, with a high score (maximum 18) indicating greater well-being.
While the Ryff measure has not been validated specifically with stroke patients, it has been used in several national surveys in the United States and has been found to have strong construct and concurrent validity in samples of older adults.13,15⇓ Psychometric analyses of the shortened 18-item version indicate that it performs similarly to the original 120-item version of the measure.13,15⇓ Each item correlates strongly and positively only with its own scale, and scale intercorrelations are generally low (ranging from 0.13 for purpose in life and autonomy to 0.46 for self-acceptance and environmental mastery), indicating that the 6 dimensions do not demonstrate excessive construct overlap. However, while the internal consistency reliability of the larger 120-item scale is high13 (α coefficients ranging from 0.86 to 0.93), estimates of internal consistency reliability in the shorter 18-item version are low to modest (α coefficients range from 0.33 [purpose in life] to 0.56 [positive relations]), likely because of the small number of indicators per scale.15 Additional psychometric analyses with the 18-item Ryff measure in CSHA14,16⇓ reinforce its construct validity. However, similar to the findings in the US data,15 the reliability of each of the 6 dimensions was not found to be high, with α coefficients ranging from 0.26 (purpose in life) to 0.52 (self-acceptance).14,16⇓
Apart from the Ryff measures of well-being, information on demographic, health, and socioeconomic factors was also collected in CSHA-2. Information on whether a person had experienced a stroke was collected through the self-report question, “Have you experienced a stroke or the effects of a stroke in the previous year?” Self-reports of stroke have been found to be valid in other community surveys,17,18⇓ demonstrating high sensitivity and specificity.
Seniors were also asked about the occurrence of 16 additional common health problems (including urinary incontinence, hypertension, and arthritis). According to recommendations in the literature,19 conditions were summed to create an additive measure of comorbidity. Cognitive function was assessed with the Modified Mini-Mental State Examination,20 which ranges from 0 to 100, with a high score indicating higher cognitive function. Self-rated health was assessed with the question, “How is your health these days?” Respondents answered this question on a 5-point scale (very good, pretty good, not too good, poor, very poor). Functional ability was assessed through a measure of activities of daily living (ADL).21 Seven questions probe independence in basic self-care ADL, and an additional 7 items probe independence in more complex instrumental ADL (IADL). Respondents are given a score of 2 if they can perform the activity without any help and a score of 1 if they need some help; a score of zero indicates that the respondent cannot perform the activity at all. Scores were summed to create 2 continuous measures of ADL and IADL (each ranging from 0 to 14), where a high score indicates greater independence.
Respondents were also asked about their educational level (in years of completed education) and annual household income, which was documented according to 12 ordinal $5000 income categories. Social support was assessed with 2 measures. Respondents were first asked about the number of people they can count on for general help and support, indicating the size of one’s support network. Satisfaction with social support was assessed with the question, “Do you ever feel that you need more support?” The responses “often” and “sometimes” were collapsed to indicate dissatisfaction with social support, while the response “never” indicates satisfaction with social support. Although no measure of depression was included in the CSHA community questionnaire (the Geriatric Depression Scale22 was only administered to seniors who were referred to the clinical examination component of the study), 5 questions from the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36)23 were included as a short screen for mental health. These items ask how often respondents have felt “happy,” “nervous,” “calm and peaceful,” “downhearted and blue,” and “down in the dumps” in the past 4 weeks. Total scores range from 5 to 30 and are transformed to a percentile score out of 100, with a high score indicating better mental health.
Descriptive statistics (including χ2 and t tests) were first used to summarize the characteristics of Canadian stroke survivors living in the community, comparing them with community-dwelling seniors who have not experienced a stroke. With a forward stepwise approach, multiple regression was then used to determine the relationships between well-being and the various demographic, health, and socioeconomic variables in stroke survivors, paying attention to possible confounding and interaction effects between variables. As a prerequisite for multiple linear modeling, the data were checked for both linearity, by examining scatterplots and testing the significance of polynomial terms where appropriate, and multicollinearity, by examining the linear correlation matrix and the variance inflation factor for the continuous variables.
The well-being measures used in this study are examples of additive hierarchical scales, which have been found to be valid for use with robust parametric statistical techniques (such as regression) in large samples.24,25⇓ All statistical analyses were performed with the use of the Statistical Analysis System (SAS) Version 8 for Windows. Statistical significance was assessed with a 2-tailed α of 0.05. All analyses used weighted data to correct for the oversampling of the original CSHA-1 sample by age and region.
Of the total sample of 5395 community-dwelling seniors in CSHA-2, 339 (6.3%) reported experiencing a stroke or the effects of a stroke in the previous year. (With the use of expansion weights, this is estimated to represent a population prevalence of 125 500 Canadian seniors living with the effects of stroke in 1995–1996. This is comparable to prevalence figures published with the use of data from the National Population Health Survey in Canada,1 which estimated that there were 128 500 community-based Canadians aged ≥65 years living with the effects of stroke in 1994–1995.) Of these 339 stroke survivors, 282 (83.2%) have complete data on at least 1 of the Ryff measures of well-being, while 57 (16.8%) have no well-being data, largely because of cognitive problems (including aphasia) that prevented the completion of the questionnaire. Of the 5056 seniors who did not report a stroke, only 4524 (89.5%) have well-being data, again because of the presence of cognitive problems. The focus of this research is therefore limited to community-dwelling stroke survivors and seniors without significant cognitive impairment.
Table 1 summarizes the sociodemographic and health characteristics of these 282 stroke survivors and 4524 seniors who did not report a stroke. There were no significant differences in the demographic characteristics of stroke survivors compared with seniors in the survey who did not report a stroke. However, there were significant differences in the self-reported health status of stroke survivors compared with seniors living without stroke. Stroke survivors were much less likely to state that their health was very good and more likely than seniors who have not had a stroke to rate their health as poor or very poor (χ2=111.86, P<0.001).
Community-dwelling seniors who have had a stroke are also more likely to be living with a greater number of other health conditions (t=9.32, P<0.0001). Compared with seniors who have not had a stroke, stroke survivors were more likely to report diabetes (11.8% versus 20.1%; χ2=16.21, P<0.001), hypertension (37.0% versus 59.4%; χ2=52.46, P<0.001), and heart and circulation problems (29.9% versus 52.2%; χ2=58.24, P<0.001), which are all conditions that are risk factors for stroke. Stroke survivors also experience lower levels of cognitive function, as measured by the Modified Mini-Mental State Examination (t=2.87; P<0.004). However, the generally high scores for both groups reflect the fact that seniors with severe cognitive impairment are not included in these analyses.
Seniors living with stroke in the community experience more restriction in ADL than seniors living without the effects of stroke, as indicated by the lower mean scores on the ADL measures (for self-care ADL, t=10.35, P<0.0001; for IADL, t=13.19, P<0.0001). Table 2 illustrates the proportion of stroke survivors and unaffected seniors who require assistance in both basic self-care ADL and IADL. Community-dwelling stroke survivors are more than twice as likely to experience difficulty with bathing (χ2=69.24, P<0.001) and meal preparation (χ2=121.42, P<0.001) compared with seniors who have not had a stroke. Stroke survivors are also 3 times more likely to require assistance with walking (χ2=78.76, P<0.001) and getting around outside the home (χ2=66.09, P<0.001). Additional data (not shown) indicate that 23% of stroke survivors in the community report that they use a walker or 4-pronged cane compared with only 7% of seniors who have not had a stroke (χ2=100.06, P<0.001), and 13% of stroke survivors use a wheelchair compared with 4% of seniors who have not had a stroke (χ2=58.89, P<0.001).
Seniors who have experienced a stroke are more likely to report significantly lower scores on the mental health scale of the SF-36 (t=5.92; P<0.001) than seniors who have not had a stroke (Table 1). In terms of social supports, stroke survivors and seniors who have not had a stroke report a similar number of people that they can count on for general help and support. However, in terms of their satisfaction with those supports, stroke survivors are much more likely to feel that their supports are not adequate for their needs. The question, “Do you ever feel that you need more support?” revealed that 32% of stroke survivors indicated that they were dissatisfied with their supports compared with only 22% of seniors without stroke (χ2=15.52, P<0.001).
In general, community-dwelling Canadian seniors report a high level of well-being. Table 3 presents the mean scores on each of the 6 dimensions of the Ryff measure of well-being. For both stroke survivors and seniors who have not had a stroke, the scores are generally high, with mean scores on most dimensions falling within the top third of possible scores. Nevertheless, despite the high levels of well-being in seniors in general, stroke survivors are at a disadvantage with respect to their sense of well-being, reporting significantly lower scores on all dimensions of the Ryff measure except for the autonomy and purpose in life dimensions.
Multiple Regression Models for Stroke Survivors
Table 4 reports the results of multiple regression models for 5 of the 6 dimensions of well-being in stroke survivors. No statistically significant effects were found for the dimension of autonomy. All models control for age, sex, and the number of comorbid health conditions to better isolate the effects of stroke on well-being apart from the effects of other health conditions. (These control variables are only displayed in Table 4 if they are statistically significant.) As is usual in survey-based research, participant nonresponse produces slightly varying numbers of cases in different models.
Physical and cognitive disabilities were repeatedly associated with a lower sense of well-being after stroke. When we controlled for age, sex, and the number of comorbid health conditions, stroke survivors requiring greater assistance with IADL reported a significantly lower level of well-being than those survivors who were functionally independent in terms of their sense of personal growth, environmental mastery, and positive relations with others. (Independence in basic self-care ADL was not associated with well-being in this sample.) Similarly, survivors with lower scores on the cognitive impairment measure reported a lower sense of purpose in life than those with higher cognitive function. Mental health or mood state was also related to well-being. Stroke survivors with lower scores on the mental health scale of the SF-36 reported lower scores on the environmental mastery and self-acceptance dimensions of well-being.
While depressed mood and physical and cognitive disability were associated with a lower sense of well-being after stroke, social resources were associated with a higher sense of well-being in stroke survivors. Survivors with a larger social support network perceived greater opportunities for personal growth and reported more positive relationships with others. Moreover, in comparison to stroke survivors who perceive their supports to be inadequate, survivors who expressed satisfaction with their social supports reported higher scores on the environmental mastery, positive relations, and self-acceptance dimensions of well-being. In terms of socioeconomic resources, survivors with a greater number of years of education reported a greater sense of personal growth, purpose in life, and environmental mastery than survivors with fewer years of education. Household income was not associated with any of the dimensions of well-being.
Social resources actually had a buffering effect in survivors, serving to reduce the adverse effects of physical disability on subjective well-being after stroke. As indicated in Table 4, 2 significant linear interaction effects were detected for the dimension of environmental mastery, indicating that the effects of functional disability on well-being vary according to survivors’ educational level and degree of satisfaction with their social supports. For stroke survivors who express dissatisfaction with their social supports, disability in IADL has a much greater impact on their sense of mastery and control than for survivors who feel that their supports are adequate. Similarly, the adverse impact of disability in IADL on one’s sense of mastery or control after a stroke is attenuated in those with a greater number of years of education. Together, these variables explain 43% of the variance in the environmental mastery dimension of well-being.
Most of the data on the effects of stroke are gathered from hospital or clinical samples,7–9⇓⇓ while little is known about the more subjective well-being of stroke survivors coping in the community setting. With a national representative sample of Canadian seniors, the CSHA provides a unique opportunity to examine the patterns and correlates of well-being after stroke in community-dwelling seniors.
The results indicate that a stroke can significantly compromise the well-being of Canadian seniors living in the community. Stroke survivors are much more likely to experience a restriction in their ADL, particularly in IADL, such as getting around outside the home, shopping, and meal preparation. These findings are consistent with data published from the Canadian National Population Health Survey, which showed that community-dwelling seniors who have had a stroke are anywhere from 4 to 8 times more likely than seniors who have not had a stroke to need help with 1 or more ADL.1,26⇓ These functional disabilities in IADL are associated with a reduced sense of well-being after stroke, particularly in terms of survivors’ sense of mastery and control over their lives, their perceived opportunities for personal growth, and their ability to engage in positive social relationships.
Difficulties in cognitive function are also problematic for seniors who have had a stroke, especially in relation to the purpose in life dimension of well-being. Although stroke survivors with severe cognitive impairment were excluded from these analyses, the results indicate that even mild or moderate difficulties with cognitive function limit survivors’ ability to plan and develop goals in life, constraining their sense of purpose and meaning. Similarly, depression has repeatedly been found to be associated with poststroke well-being,7–9,27⇓⇓⇓ and our results confirm that a negative mood state compromises one’s sense of mastery and self-acceptance.
However, although both physical and cognitive disabilities constrain the subjective well-being of stroke survivors living in the community, social resources can moderate the adverse effects of residual disabilities. We found that the adverse impact of disability on one’s sense of mastery or control after a stroke is substantially reduced in those with a greater number of years of education. Perhaps this is because life course educational resources foster flexible coping skills that empower survivors to adapt to the problems and challenges associated with living with a disability.28
Similarly, survivors with adequate social supports are less adversely affected by functional dependence in terms of reporting a sense of mastery and control over their lives. Social supports have elsewhere been found to be associated with a higher quality of life in stroke survivors,9,27,29,30⇓⇓⇓ and our results help to explicate the operative role that social support plays as a moderator of the effects of disability on well-being. The positive influence of larger social networks on stroke outcomes has also been documented,31 and in this study network size was independently related to a greater sense of personal growth and more positive social relations. Collectively, these findings highlight the salience of support systems for well-being after stroke and emphasize the ongoing importance of developing appropriate programs that enhance and reinforce the social supports and social networks of stroke survivors. Not only are strong supportive social systems vital for the well-being of seniors who have had a stroke, but they may also operate indirectly to reduce further strain on the healthcare system.
While the multidimensional measure of well-being is a strength of this analysis, internal consistency estimates of the 6 dimensions indicate low levels of reliability (α=0.26 to 0.56).13–16⇓⇓⇓ These reliability estimates are considerably weaker than those demonstrated by other measures that are used to assess quality of life after stroke,32 such as the Sickness Impact Profile33 (α=0.94), and the Nottingham Health Profile34 (α=0.90 to 0.94). However, the α coefficient is a conservative estimate of internal reliability,35 particularly with only 3 items per scale, and the items were chosen to cover the conceptual breadth within each dimension rather than to maximize internal consistency.13,15⇓
These findings are also limited to community-dwelling Canadian seniors, without severe cognitive impairment or aphasia, who survived to the second wave of the CSHA. Consequently, it is likely that the results underestimate the impact of stroke on the well-being of Canadian seniors. Further research is needed to assess well-being in seniors with severe cognitive impairment or aphasia. Nevertheless, these results indicate the substantial impact of a stroke on the daily lives of many Canadian seniors and highlight those resources that may help to alleviate the burden of living with this prevalent neurological condition.
The data reported in this article were collected as part of the CSHA. The core study was funded by the Seniors’ Independence Research Program, through the National Health Research and Development Program (NHRDP) of Health Canada [project No. 6606-3954-MC(S)]. Additional funding was provided by Pfizer Canada Incorporated through the Medical Research Council/Pharmaceutical Manufacturers Association of Canada Health Activity Program, NHRDP [project No. 6603-1417-302(R)], Bayer Incorporated, and the British Columbia Health Research Foundation [projects No. 38(93-2) and No. 34(96-1)]. The study was coordinated through the University of Ottawa and the Division of Aging and Seniors, Health Canada. Partial support for these analyses was also received from the Heart and Stroke Foundation of Canada in the form of a PhD fellowship in applied cerebrovascular health research (to Philippa Clarke), cosponsored by the National Health Research and Development Program of Health Canada.
- Received September 10, 2001.
- Revision received November 19, 2001.
- Accepted December 17, 2001.
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