Long-term caregiving after stroke: the impact on caregivers' quality of life.
Stroke is the most common disabling chronic condition. A stroke often results in permanent physical, cognitive, and emotional changes for its survivors. Stroke also becomes a family matter because of its effect on the family and the high percentage of family members who provide care for their loved ones with stroke (Anderson, 1992).
There are three distinct periods in the caregiving trajectory: taking up the role, continuing in the role, and relinquishing it (Brereton & Nolan, 2002). The development of responsive caregiver support programs is predicated on understanding the difficulties encountered by the caregiver as well as the impact on the caregiver's health-related quality of life (HRQL) and overall quality of life (QOL) during these critical periods. HRQL is defined as "the value assigned to duration of life as modified by the impairment, functional states, perceptions, and social opportunities that are influenced by disease, injury, treatment, or policy" (Patrick & Erickson, 1993, p. 22). QOL refers to effects that are broader in scope than health and is defined as "individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns" (World Health Organization Quality of Life Group, 1995, p. 1405). This study examined the HRQL and the QOL of family caregivers at two times in the caregiving trajectory: first after being in the role for at least I year and then 6 months later.
Research focused on caregivers taking up the role has demonstrated increased anxiety and distress related to the suddenness of the stroke and the limited preparation time for undertaking the caregiving role (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002; Dennis, O'Rourke, Lewis, Sharpe, & Warlow, 1998; Forsberg-Warleby, Moller, & Blomstrand, 2001; Teel, Duncan, & Lai, 2001). Most interventions were tested at the beginning of the caregiving period (Dennis, O'Rourke, Slattery, Staniforth, & Warlow, 1997; Forster & Young, 1996; Grant, Elliott, Weaver, Bartolucci, & Giger, 2002; Mant, Carter, Wade, & Winner, 2000; Rodgers et al., 1999).
Given the nature of stroke recovery, many survivors require long-term care in the community. More than 6 months after a stroke, rehabilitative services and other forms of professional support are often limited, and stroke survivors frequently must rely solely on their family members to continue their home and community reintegration. Only a few studies have examined caregiving beyond the first year; most such studies were cross-sectional, without a control group. There was wide variability in the time period family caregivers were involved. Two longitudinal studies reported on caregiver outcomes after I and 2 years of caregiving. Psychological morbidity measures have shown that 12%-20% of caregivers were psychologically distressed (Wade, Legh-Smith, & Hewer, 1986). One more measure of HRQL, the group mean on the mental-health subscale, was 8 points lower than on the age-matched norms; this difference is both statistically and clinically significant (White, Mayo, Hanley, & Wood-Dauphinee, 2003). In both studies, few changes in distress and HRQL occurred during the 2 years.
This study was designed to further advance our understanding of families who provide care for stroke survivors after formal resources have diminished. Its objectives were as follows: (a) to describe the HRQL and QOL of family caregivers after at least 1 year of caregiving and 6 months later, and to determine whether change occurred during the 6 months; and (b) to identify stroke-survivor and caregiver factors that may affect the caregiver's QOL.
Sample and Procedures
Stroke survivors discharged into the community from four rehabilitation facilities in Montreal, QC, Canada were identified; family caregivers were then identified through the stroke survivors. Eligible caregivers had provided care for or supervised the care of the stroke survivor on a daily basis; had been in the caregiving role for at least I year; and were fluent in either English or French.
The medical records of stroke survivors who had been admitted for rehabilitation services during the preceding 1-2 years were reviewed, and written information about the study was sent to those who had been discharged into the community. Those who responded by mail were telephoned to obtain information about the family caregiver. The caregiver was then contacted to provide information about the study and obtain informed consent. Of approximately 140 caregivers who were contacted, 52 were eligible and consented to participate in the study Caregivers returned a signed consent form via mail. The reasons for not participating were twofold: (a) caregivers were too busy or not interested in participating; or (b) family members were no longer in the caregiving role because their stroke survivors had made a good recovery.
Caregivers were interviewed by telephone approximately 18 months after the family member had suffered a stroke (Time 1) and then 6 months later (Tune 2). Caregivers completed all study measures, including those describing the condition of the stroke survivor. Each interview, lasting 45-60 minutes, was conducted in French or English by a trained interviewer. Eight caregivers could not be interviewed a second time because of the stroke survivor's death (n = 3), a change in the caregiver (n = 2), or inability to contact the caregiver (n = 3). The study was approved by the research ethics committee of each participating rehabilitation hospital.
Caregivers provided demographic information including their marital status, kin relationship to the stroke survivor, living arrangements, employment status, and information on the presence of any chronic illnesses. Caregivers also provided information on their use of services to help in managing the care of the family member with stroke.
The Stroke Impact Scale (SIS; Duncan et al., 1999), a 59-item instrument, was used to assess eight domains: hand function, strength, mobility, basic and instrumental activities of daily living, emotion, memory, communication ability, and social participation. Each item was scored on a 5-point categorical scale; subscale scores ranged from 0 to 100, with higher scores indicating better function. A final question asked the caregiver to estimate the degree of recovery using a visual analogue scale. Reliability estimates and content and construct validity have been demonstrated (Duncan et al., 1999). A 10-15-point change in a domain score represented a clinically significant change. A proxy version was used in this study, with caregivers completing this measure for the stroke survivors. The proxy version has been validated against several well-known measures. Although there are differences in reporting between stroke survivors and proxies, the magnitude of bias is small and not clinically significant (Duncan et al., 2002).
Behavioral disturbances exhibited by the stroke survivor were reported by the caregiver through a modified version of the Brain Impairment Behavior Scale (Williams, 1994). The caregiver rates the extent to which behavioral problems are present, from never to all of the time, on 37 items, which are summed to yield a total score between 37 and 185, with higher scores indicating more problems. Its reliability and validity have been demonstrated and responses by the caregiver have been found to be moderately correlated with stroke-survivor responses (Williams & Dahl, 2002).
The Caregiver Assistance Scale was used to determine the amount of assistance provided by the caregiver for activities of daily living (e.g., bathing, eating), instrumental activities of daily living (e.g., finances), and treatment-related activities (e.g., administration of medications; Cameron, Franche, Cheung, & Stewart, 2002). Caregivers rated how much assistance they provided for 17 caregiving tasks during the preceding 4 weeks on a 7-point Likert scale ranging from 0 (none) to 6 (a lot). The scores were summed to provide a total assistance score, which ranged between 0 and 102, with higher scores indicating more assistance. In a sample of 44 family caregivers of cancer survivors, construct validity was supported by the moderate correlation with the Caregiver Impact Scale (r = .45, p < .001; Cameron et al.).
In this study, the caregiver's HRQL was measured using the 36-item Short Form Health Survey (SF-36; Ware & Sherbourne, 1992). This generic scale of perceived health status consists of eight multi-item scales. The SF-36 subscales can be aggregated into a Mental Component Summary (MCS) scale and a Physical Component Summary (PCS) scale. These subcomponents have been standardized to have a mean of 50 and a standard deviation (SD) of 10. Higher scores indicate a better quality of life. The SF-36 has been used with family caregivers of stroke survivors (Bugge, Alexander, & Hagen, 1999), and its psychometric properties have been extensively demonstrated (Ware, 2000).
The Pearlin Mastery Scale (Pearlin & Schooler, 1978), a seven-item self-report measure, was used to assess the degree to which people see themselves as being in control of the forces that affect their lives. Items are rated from 1 (strongly disagree) to 4 (strongly agree). The total scores range from 7 to 28, with higher scores indicating a higher degree of believing oneself to be in control. In a longitudinal study of caregivers of persons with dementia (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995), the Pearlin Mastery Scale displayed adequate internal consistency (alpha = .75).
The quality of the relationship between the provider and the recipient of informal care was measured by four items from the University of Southern California Longitudinal Study of Three-Generation Families (1988), termed the quality of the relationship scale. These items assess general closeness, communication, similarity of views about life, and degree of getting along. The response categories range from I (not at all close/well/similar) to 4 (very close/well/similar). In a study of family caregivers, internal consistency reliability was .85 (Lawrence, Tennstedt, & Assmann, 1998).
To assess the impact of caregiving on the caregiver's QOL, the caregivers completed the 37-item Stroke Caregiver Quality of Life Measure (White, 2002). This scale includes four subscales: health, resources, mastery, and rewards. Each measures different dimensions of QOL. The development of this scale was guided by a conceptual framework, built on previous caregiver research, that was traditionally focused on the demands of the caregiver and the corresponding burden and emotional distress that caregiving produces. This measure places emphasis on an overall evaluation of outcome through QOL measurement (White, Lauzon, Yaffe, & Wood-Dauphinee, 2004). In a study of 63 caregivers, subscale test-retest reliability ranged between .83 and .91. Except for the rewards subscale, initial support for construct validity was demonstrated by the significant association of the three other subscales to the mental summary score of a measure of HRQL (r = .49 to .72), a measure of a sense of control (r = .46 to .65), and behavioral disturbances (r = -.48 to -.57; White et al., 2002). Raw scores were transformed so that each subscale score ranged from 0 to 100, with higher scores indicating better QOL.
Descriptive statistics were used to describe the recovery of the stroke survivor and the caregiver's HRQL and QOL. Student's t tests were used to assess for change between Time 1 and Time 2. Linear regression models were used to identify caregiver and stroke-survivor factors that may place the caregiver at risk for diminished QOL. Three subscales (health, resources, and mastery) of the Stroke Caregiver Quality of Life Measure served as the dependent variables. Because of the limited number of study participants, for those scales where the individual subscales could be summarized (SF-36 and SIS), the summary-level variables were considered in the linear regression models. Furthermore, only the most important variables in the patient-level and caregiver-level domains (based on an examination of correlation tables) were entered into the models. Assumptions for multivariate normality were assessed with residual plots and seemed reasonable for these data. After a model was developed for Time 1, the same model was run for Time 2 to look for changes over time as reflected by changes in the parameter estimates.
Because the explanatory variables were measured on different scales, it was difficult to recognize the impact of the magnitude of one variable in comparison with another. To overcome this, standardized regression coefficients were used. These coefficients were interpreted in terms of SD units; for every 1 SD change in an x variable, the y variable changed the value of the coefficient.
Eight caregivers were not interviewed a second time. Fairclough, Peterson, and Chang (1998) demonstrated that individuals lost to follow-up often are those with lower QOL scores. Eliminating these individuals from the analyses could bias the estimate of QOL. However, inputting the data for these caregivers may provide a less biased estimate of QOL. The strategy of multiple imputation was chosen to replace the missing information on these eight caregivers. Information from the dataset is used to identify the distribution of the variables with missing data. Instead of filling in a single value for each missing value, the multiple imputation strategy replaces each missing value with a set of plausible values that represent the uncertainty about the right value to impute (Engels & Diehr, 2003).
The majority of caregivers were female (71%) and the spouse of the stroke survivor (64%; Table 1). Their mean age was 61 years, with a range from 39 to 78 years. Most caregivers lived with the stroke survivor (75%), and 27% were currently employed. The most frequently reported health conditions of the caregivers were arthritis (33%) and hypertension (31%); these rates were similar to those found among the general Canadian population (Statistics Canada, 1999).
Table 2 shows the services the caregivers used in caring for the stroke survivor and for their own healthcare needs. Very few caregivers used services to assist with the care of the stroke survivor, and this figure remained low over time.
Stroke-survivor recovery changed little between the first and second interviews (Table 3). Although most scores increased over time, the differences were not statistically significant. There was a significant decrease in behavioral disturbances between the two interviews, and caregivers reported providing significantly less assistance to the stroke survivor over time.
The mean scores on measures of the caregiver's HRQL and QOL did not change over time (Table 4). A comparison with age-matched Canadian normative HRQL data (Hopman et al., 2000) showed caregivers scoring significantly lower on the vitality, social function, and mental health subscales as well as the MCS scale at both times.
Predictors of caregiver QOL can be seen in Table 5. Approximately 33% of the variation in the health subscale from the Stroke Caregiver Quality of Life Measure, measured at approximately 1.5 years after caregiving began, was explained by caregiver age, the social participation of the stroke survivor (SIS subscale), and the quality of the relationship between the caregiver and the stroke survivor. Advanced age and enhanced social participation of the stroke survivor, along with a better quality relationship with the caregiver, were associated with increased reports of health. Six months later, the same model accounted for approximately 29% of the variation in caregiver health. There were few changes in the parameter estimates, except for a strengthening of the association between health and the quality of the relationship. A 1-SD increase in the quality of the relationship between the stroke survivor and the care giver (all other variables constant) was associated with a 4-point increase in the caregiver's health.
The resources subscale reflects a feeling of having the personal and environmental characteristics inherent to QOL. Caregiver age, kin relationship to the stroke survivor, social reintegration of the stroke survivor, and the caregiver's feelings of mastery (being in control of a situation) explained 46% of the variability at Time 1. Being an older, nonspousal caregiver was positively associated with the resources subscale. There was an independent association between feeling empowered, as measured by the mastery scale, and the feeling of having the requisite personal and environmental characteristics. Finally, with all other variables constant, a 1-SD increase in the social participation subscale was associated with a 6-point increase in the resources subscale. Six months later, however, the associations between kin relationship, empowerment, and resources were not statistically significant.
The mastery subscale measured the caregiver's perception of managing the caregiving situation. The linear regression model, including the stroke survivor's behavior and physical disability and the caregiver's health, accounted for 64% at Time 1 and 63% at Time 2 of the variance in caregiver mastery. Caring for a stroke survivor with behavioral problems was strongly associated with a decreased sense of mastery of the caregiving situation at both interviews. Although caring for a stroke survivor with better physical recovery was associated with caregiver mastery at the first inter view, there was no relationship at the second interview. Finally, caregiver reports of better mental health at both interviews were associated with higher levels of caregiving mastery.
This study examined the caregiving experience at approximately 1.5 and 2 years into the role. There were few mean changes in caregiver outcomes during this period. Parameter estimates in the linear regression models developed for these two time points did change, but there was no consistent pattern. Caring for a stroke survivor with behavioral changes had a negative impact on the caregiver's QOL over time, whereas caring for a stroke survivor with better social participation had a positive impact on the caregiver's QOL.
The significant differences between the caregiver's mean scores on measures of HRQL and the Canadian normative data are important and a cause for concern. Caregivers scored, on average, 5-10 points lower than their Canadian normative counterparts. A 5-point difference on the mental subscales has been found to be clinically significant (Ware, Snow, Kosinski, & Gandek, 1993). This comparison underscores the detrimental impact of the caregiving situation on the caregiver's mental health and the importance of detecting and treating health problems among caregivers.
An important finding of this study of long-term family caregiving is the significant positive association between the stroke survivor's social participation in family and community living and the caregiver's QOL. Social participation or reintegration to normal living entails the resumption of activities at home and in the community. Although some disability or symptoms may be present, many stroke survivors are able to restructure their physical, psychological, and social characteristics so as to resume well-adjusted living (Wood-Dauphinee, Opzoomer, Williams, Marchand, & Spitzer, 1988). The mean scores on the SIS suggest that the stroke survivors sustained moderate physical impairment, in particular in hand function and overall strength (Lai, Studenski, Duncan, & Perera, 2002). Few caregivers reported receiving formal assistance in caring for the stroke survivor. Despite this, social participation of the stroke survivor had the greatest impact on the caregiver's QOL.
Behavioral and mood disturbances following the stroke significantly affected the caregiver's QOL. The ongoing behavioral disturbances, even 2 years after the stroke, predisposed stroke survivors to difficulties in resuming normal living patterns. Long-term disruptions to family routines and changes in established patterns of living are negatively associated with the caregiver's QOL (Anderson, 1992; Bethoux, Calmels, Gautheron, & Minaire, 1996). Behavioral disturbances had a strong negative effect on the caregiver's perception of managing the caregiving situation. A 1-SD increase in the scale measuring behavioral disturbances was associated with a 10-12-point decrease in the caregiver's sense of mastery of the caregiving situation. These findings suggest that the pathway to negative caregiver outcomes may occur through the impact on the caregiver's sense of mastery of the caregiving situation. Although caregivers are likely to receive some instruction in managing the physical aspects of care, the behavioral disturbances following a stroke are less visible and, thus, are largely unaddressed by the healthcare system (Anderson, Linto, & Stewart-Wynne, 1995). This strong association highlights the importance of interventions aimed at helping caregivers manage behavioral and mood disturbances following a stroke, which may help to maintain or increase the caregiver's sense of mastery of the caregiving situation and, subsequently, their overall QOL.
There are several limitations to this study. Difficulty in gaining access to caregivers and defining the target group of caregivers resulted in a small number of participants. Furthermore, this sample represents survivors of the caregiving role; it may not be generalizable to all caregivers, because some caregivers relinquish the role and thus could not be captured by our sampling method. A true understanding of the caregiving role demands an inception cohort followed through all phases of the caregiving trajectory.
All data collected in this study were provided by the caregivers, including the stroke-survivor measures. A review of studies published between 1990 and 2000 found moderate to high levels of stroke survivor-proxy agreement (Sneeuw, Sprangers, & Aaronson, 2002). These researchers concluded that responses provided by significant others about several aspects of the caregiver's HRQL are fairly accurate. For the purpose of understanding the impact on the caregiver, completion of these measures by the caregivers provides the caregivers' perception of the stroke survivor's disabilities, which may be a more important perception in relation to caregiver QOL.
The results of this study demonstrate the significant negative impact on the caregiver's HRQL, even at 2 years after a family member's stroke, and speak to the importance of assessing caregivers over time and not only at the beginning of the caregiving role. The results underscore the negative association between care for a stroke survivor with behavioral disturbances who has been unable to resume activities in the home and community and the caregiver's QOL. Problems related to behavioral and emotional disturbances are less readily recognized and addressed by professionals than those associated with the physical aspects of care. This fact points to the necessity of actively screening stroke survivors for behavioral disturbances. The relationship between the caregiver and the care recipient was associated with the caregiver's QOL. This is an important association and stresses the importance of a family assessment that considers the impact of the stroke and the caregiving role on the dyad's relationship over time. Providing specific information about the behavioral sequelae of stroke may give the caregiver a better understanding of this aspect of stroke and minimize the negative impact on the relationship. Finally, the results highlight the limited services used by caregivers at 2 years after a stroke, despite residual physical and behavioral disabilities. Providing information about resources and facilitating access to support services and programs may improve the caregiver's QOL. Family caregivers make significant, long-term contributions to stroke survivors and to society. Maintaining QOL is a very significant factor in their ability and willingness to provide the care required to maintain a family member with stroke in the community.
This research was supported by the Canadian Heart and Stroke Foundation. We wish to recognize the cooperation and assistance of personnel at the Catherine Booth Hospital Centre, the Constance-Lethbridge Rehabilitation Centre, the Hopital de readaptation Villa Medica, and the Institut de readaptation de Montreal.
Anderson, C. S., Linto, J., & Stewart-Wynne, E. G. (1995). A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke, 26, 843-849.
Anderson, R. (1992). The aftermath of stroke. Cambridge, England: Cambridge University Press.
Aneshensel, C., Pearlin, L., Mullan, J., Zarit, S., & Whitlatch, C. (1995). Profiles in caregiving: The unexpected career Toronto: Academic Press.
Bakas, T., Austin, J. K., Okonkwo, K. F., Lewis, R. R., & Chadwick, L. (2002). Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge. Journal of Neuroscience Nursing, 34(5), 242-251.
Bethoux, F., Calmels, P., Gautheron, V., & Minaire, P. (1996). Quality of life of the spouses of stroke survivors: A preliminary study. International Journal of Rehabilitation Research, 19(4), 291-299.
Brereton, L., & Nolan, M. (2002). 'Seeking': A key activity for new family carers of stroke survivors. Journal of Clinical Nursing, 11(1), 22-31.
Bugge, C., Alexander, H., & Hagen, S. (1999). Stroke survivors' informal caregivers: Patient, caregiver, and service factors that affect caregiver strain. Stroke, 30, 1517-1523.
Cameron, J. I., Franche, R. L., Cheung, A. M., & Stewart, D. E. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer stroke survivors. Cancer, 94, 521-527.
Dennis, M., O'Rourke, S., Lewis, S., Sharpe, M., & Warlow, C. (1998). A quantitative study of the emotional outcome of people caring for stroke survivors. Stroke, 29, 1867-1872.
Dennis, M., O'Rourke, S., Slattery, J., Staniforth, T., & Warlow, C. (1997). Evaluation of a stroke family care worker: Results of a randomised controlled trial. British Medical Journal, 314, 1071-1076.
Duncan, P. W., Lai, S. M., Tyler, D., Perera, S., Reker, D. M., & Studenski, S. (2002). Evaluation of proxy responses to the stroke impact scale. Stroke, 33, 2593-2599.
Duncan, P. W., Wallace, D., Lai, S. M., Johnson, D., Embretson, S., & Laster, L. J. (1999). The stroke impact scale version 2.0: Evaluation of reliability, validity, and sensitivity to change. Stroke, 30, 2131-214.
Engels, J. M., & Diehr, P. (2003). Imputation of missing longitudinal data: A comparison of methods. Journal of Clinical Epidemiology, 56, 968-976.
Fairclough, D. L., Peterson, H. F., & Chang, V. (1998). Why are missing quality of life data a problem in clinical trials of cancer therapy? Statistics in Medicine, 17, 667-677.
Forsberg-Warleby, G., Moiler, A., & Blomstrand, C. (2001). Spouses of first-ever stroke survivors: Psychological well-being in the first phase after stroke. Stroke, 32, 1646-1651.
Forster, A., & Young, J. (1996). Specialist nurse support for stroke survivors with stroke in the community: A randomised controlled trial. British Medical Journal, 312, 1642-1646.
Grant, J. S., Elliott, T. R., Weaver, M., Bartolucci, A. A., & Giger, J. N. (2002). Telephone intervention with family caregivers of stroke survivors after rehabilitation. Stroke, 33, 2060-2065.
Hopman, W. M., Towheed, T., Anastassiades, T., Tenenhouse, A., Potiquin, S., Berger, C., et al. (2000). Canadian normative data for the SF-36 health survey (Canadian Multicentre Osteoporosis Study Research Group). Canadian Medical Association Journal, 163, 265-271.
Lai, S. M., Studenski, S., Duncan, P. W., & Perera, S. (2002). Persisting consequences of stroke measured by the stroke impact scale. Stroke, 33, 1840-1844.
Lawrence, R. H., Tennstedt, S. L., & Assmann, S. F. (1998). Quality of the caregiver-care recipient relationship: Does it offset negative consequences of caregiving for family caregivers? Psychology & Aging, 13(1), 150-158.
Mant, J., Carter, J., Wade, D. T., & Winner, S. (2000). Family support for stroke: A randomised controlled trial. Lancet, 356, 808-813.
Patrick, D. L., & Erickson, P. (1993). Health status and health policy.. Quality of life in health care evaluation and resource allocation. New York: Oxford University Press.
Pearlin, L. I., & Schooler, C. (1978). The structure of coping. Journal of Health & Social Behavior, 19(1), 2-21.
Rodgers, H., Atkinson, C., Bond, S., Suddes, M., Dobson, R., & Curless, R. (1999). Randomized controlled trial of a comprehensive stroke education program for patients and caregivers. Stroke, 30, 2585-2591.
Sneeuw, K. C., Sprangers, M. A., & Aaronson, N. K. (2002). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. Journal of Clinical Epidemiology, 55, 1130-1143.
Statistics Canada. (1999). How healthy are Canadians? Ottawa: Government of Canada.
Teel, C. S., Duncan, P., & Lai, S. M. (2001). Caregiving experiences after stroke. Nursing Research, 50(1), 53-6.
University of Southern California Longitudinal Study of Three-Generation Families. (1988). Measurement of intergenerational relations. Beverly Hills, CA: Sage.
Wade, D. T., Legh-Smith, J., & Hewer, R. L. (1986). Effects of living with and looking after survivors of a stroke. British Medical Journal, 293, 41842.
Ware, J. E., Jr. (2000). SF-36 Health Survey update. Spine, 25, 3130-3139.
Ware, J. E., Jr., & Sherbourne, C. D. (1992). The MOS 36-item Short-Form Health Survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30, 473-483.
Ware, J. E., Snow, K. K., Kosinski, M., & Gandek, B. (1993). SF-36 Health Survey: Manual and interpretation guide. Boston: New England Medical Center.
White, C. L. (2002). The quality of life of family caregivers of stroke survivors. Unpublished doctoral dissertation, McGill University, Montreal, QC, Canada..
White, C. L., Lauzon, S., Yaffe, M. J., & Wood-Dauphinee, S. (2004). Toward a model of quality of life for family caregivers of stroke survivors. Quality of Life Research, 13, 625-638.
White, C. L., Mayo, N., Hanley, J. A., & Wood-Dauphinee, S. (2003). Evolution of the caregiving experience in the initial 2 years following stroke. Research in Nursing & Health, 26(3), 177-189.
White, C. L., Wood-Dauphinee, S., Mayo, N., Lauzon, S., Yaffe, M., & Hanley, J. (2002). Reliability and validity of a measure of quality of life for family caregivers of stroke survivors. Stroke, 33, 343.
Williams, A. (1994). What bothers caregivers of stroke victims? Journal of Neuroscience Nursing, 26(3), 155-161.
Williams, A. M., & Dahl, C. W. (2002). Stroke survivor and caregiver perceptions of stroke survivor behavior: A comparison. Rehabilitation Nursing, 27(1), 19-24.
Wood-Dauphinee, S. L., Opzoomer, M. A., Williams, J. I., Marchand, B., & Spitzer, W. O. (1988). Assessment of global function: The Reintegration to Normal Living Index. Archives of Physical Medicine & Rehabilitation, 69, 583-590.
World Health Organization Quality of Life Group. (1995). The World Health Organization Quality of Life Assessment position paper. Social Science & Medicine, 41-1403-1409.
Questions or comments about this article may be directed to Carol L. White, PhD RN, at firstname.lastname@example.org. She is a faculty associate at the University of Texas Health Science Center in San Antonio, TX.
Lise Poissant, PhD BSc (OT), is an assistant professor at Universite de Montreal in Montreal, QC, Canada.
Genevieve Cote-LeBlanc, MSc BSc (OT), is a faculty lecturer at McGill University in Montreal.
Sharon Wood-Dauphinee, PhD, is a professor at McGill University in Montreal.
Table 1. Baseline Characteristics of Caregivers (N = 52) Characteristic n % Age in years <45 5 9.6 45-64 25 48.1 [greater than or equal to] 65 21 40.4 Unknown 1 1.9 Gender Female 37 71.2 Male 15 28.8 Marital status Married 39 75.0 Single 4 7.7 Separated, divorced, widowed 8 15.4 Unknown 1 1.9 Relationship to stroke survivor Spouse 33 63.5 Adult child 3 5.8 Sibling 5 9.6 Other (parent, niece, friend) 11 21.2 Same residence as stroke survivor 39 75.0 Primary daily activity Employment 14 26.9 Homemaker 30 57.7 Other (student, unemployed, retired) 8 15.4 Income (at end of month) Not enough to meet expenses 5 9.6 Just enough to meet expenses 26 50.0 More than enough to meet expenses 17 32.7 Refused to answer 4 7.7 Most prevalent health problems Arthritis 17 32.6 Hypertension 16 30.8 Angina/history of myocardial infarction 10 19.2 Thyroid problems 6 17.3 Pulmonary problems 8 15.4 Diabetes 6 11.5 Cataracts 6 11.5 Table 2. Percentage of Caregivers Using Healthcare Services Service Time 1 (a) Time 2 (b) Stroke-survivor service Nursing 3.9 2.3 Assistant care 5.8 2.3 Adult daycare center 1.9 2.3 Meals on wheels -- -- Caregiver service Support group -- -- Counseling services 7.7 2.3 Physician visits 28.9 31.8 (a) Median = 21 months; N = 52. (b) Median = 28 months n = 44. Table 3. Stroke-Survivor Characteristics Construct (Variable) Time 1 (a) Time 2 (b) M SD M SD Health-related quality of life (Stroke Impact Scale) Strength (0-100) 51.9 25.7 50.1 23.1 Hand function (0-100) 49.9 35.1 56.6 33.5 Mobility (0-100) 70.9 22.6 74.7 21.3 ADL/IADL (c) (0-100) 69.4 21.6 71.7 20.9 Composite physical (d) (0-100) 63.4 20.8 66.2 20.5 Emotional (0-100) 66.9 16.7 70.2 17.0 Memory (0-100) 77.9 24.8 81.0 24.1 Communication (0-100) 75.1 30.3 78.4 27.1 Social participation (0-100) 50.1 29.0 56.4 24.5 Recovery (e) (0-100) 60.3 20.6 60.1 24.1 Behavioral disturbances (Brain Impairment Behavior Scale (f)) 83.5 26.4 70.4 23.7 Assistance from caregiver (Caregiver Assistance Scale (g)) 36.3 20.7 26.8 21.3 (a) Median = 21 months; N= 52. (b) Median = 28 months; n = 44. (c) Activities of daily living/ instrumental activities of daily living. (d) A composite of the first four domains. (e) The caregiver's global perception of the stroke survivor's recovery from 0 (nonrecovery) to 100 (full recovery). (f) 37-185; [alpha] = .93. (g) 0-102, [alpha] = .92. Table 4. Caregiver Variables Construct (Variable) Time 1 (a) Time 2 (b) M SD M SD Health-related quality of life (SF-36) (c) Physical function (0-100) 77.3 28.9 85.0 19.6 Role physical (0-100) 74.8 38.7 77.8 38.6 Bodily pain (0-100) 69.3 26.3 78.8 23.1 General health (0-100) 70.8 24.0 70.5 17.1 Vitality (0-100) 58.4 23.9 55.3 19.2 Social function (0-100) 77.4 23.1 82.7 18.7 Role emotional (0-100) 73.1 38.5 * 87.1 30.7 Mental health (0-100) 74.0 17.3 72.4 18.0 PCS (d) 47.6 10.7 49.3 8.7 MCS (d) 48.9 11.9 49.4 9.3 Quality of Life (Stroke Caregiver Quality of Life Measure) (e) Health 61.9 17.3 62.5 16.6 Mastery 72.1 23.8 76.1 19.0 Resources 64.4 20.6 69.4 18.8 Rewards 64.4 19.6 61.0 13.8 Overall 53.8 24.9 52.3 22.8 Mastery (Pearlin's Mastery Scale) (f) 19.4 3.1 19.1 2.9 Relationship Quality (Quality of Relationship Scale) (g) 11.2 2.8 11.8 2.5 Note. Raw scores were transformed to a 0-100 scale using the following formula. Transformed scale = [(actual raw score - lowest possible raw score)/possible raw score range] x 100. (a) Median = 21 months; N = 52. (b) Median = 28 months; n = 44. (c) [alpha] =.69-.94. (d) MCS and PCS scores from the SF-36, standardized to M = 50 and SD = 10. (e) [alpha] =. 75-.83. (f) 7-28; [alpha] = .67. (g) 4-16; a = .78. * p < .05. Table 5. Regression Models for Stroke Caregiver Quality of Life Variable Time 1 Standardized [beta] SE Caregiver health Age 5.20 * 2.06 Social participation (a) 7.87 * 2.10 Relationship quality 2.79 2.16 Caregiver resources Age 7.30 * 2.16 Kin relationship 4.93 * 2.24 Social participation (a) 8.41 * 2.32 Sense of control 5.78 * 2.33 Caregiver mastery Behavioral problems (a) -8.45 * 2.38 Physical disability (a) 4.98 * 0.62 Mental health 12.05 * 2.15 Variable Time 1 95% Confidence Interval [R.sup.2] Caregiver health .32 Age 1.16-9.24 Social participation (a) 3.75-11.99 Relationship quality 1.44-7.02 Caregiver resources .46 Age 3.06-11.54 Kin relationship 0.54-9.32 Social participation (a) 3.86-12.96 Sense of control 1.22-10.34 Caregiver mastery .64 Behavioral problems (a) -13.11--3.79 Physical disability (a) 3.76-6.20 Mental health 7.84-16.26 Variable Time 2 Standardized [beta] SE Caregiver health Age 4.33 * 2.16 Social participation (a) 7.84 * 2.45 Relationship quality 4.03 2.18 Caregiver resources Age 8.55 * 2.47 Kin relationship 2.00 2.81 Social participation (a) 6.37 * 1.96 Sense of control 3.44 2.49 Caregiver mastery Behavioral problems (a) -12.78 * 1.89 Physical disability (a) 1.23 2.45 Mental health 4.85 * 2.33 Variable Time 2 95% Confidence Interval [R.sup.2] Caregiver health .33 Age 0.10-8.56 Social participation (a) 3.04-12.64 Relationship quality -0.24-8.30 Caregiver resources .34 Age 3.70-13.40 Kin relationship -3.50-7.50 Social participation (a) 2.53-10.21 Sense of control -1.43-8.31 Caregiver mastery .63 Behavioral problems (a) -16.49--9.07 Physical disability (a) -3.58-6.04 Mental health 0.28-9.42 (a) Stroke-survivor variable. * p < .05.
|Printer friendly Cite/link Email Feedback|
|Author:||White, Carole L.; Poissant, Lise; Cote-LeBlanc, Genevieve; Wood-Dauphinee, Sharon|
|Publication:||Journal of Neuroscience Nursing|
|Date:||Oct 1, 2006|
|Previous Article:||A case of postpartum cerebral venous thrombosis.|