Concept Analysis of Burden in Caregivers of Stroke Survivors During the Early Poststroke Period.

537060 research-article2014

CNRXXX10.1177/1054773814537060Clinical Nursing ResearchByun and Evans

Article

Concept Analysis of Burden in Caregivers of Stroke Survivors During the Early Poststroke Period

Clinical Nursing Research 2015, Vol. 24(5) 468–486 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1054773814537060 cnr.sagepub.com

Eeeseung Byun, PhD, RN, ACNP-BC1 and Lois K. Evans, PhD, RN, FAAN2

Abstract It is important to understand burden in caregivers of stroke survivors during the early poststroke period if we are to prevent or decrease the longer-term experience of caregiver burden and its consequences. This article reports a concept analysis of burden in caregivers of stroke survivors during the early poststroke period. A literature review using MEDLINE, PubMed, CINAHL, PsycINFO, and ISI Web of Knowledge databases (19602014) identified 32 relevant articles published from 1993 to 2013. Rodgers’s evolutionary method of concept analysis was used. Three attributes— objective and subjective aspects, time spent caring for the stroke survivor, and uncertainty about the future for the stroke survivor and caregiver— were identified. Multiple definitions of caregiver burden have been used. In the early poststroke period, burden appears closely interconnected with other factors, some of which may be modifiable. Keywords caregiver, stroke, burden, stress, strain, concept analysis 1School 2School

of Nursing, University of California, San Francisco, CA, USA of Nursing, University of Pennsylvania, Philadelphia, PA, USA

Corresponding Author: Eeeseung Byun, Ruth L. Kirschstein NRSA Postdoctoral Fellow, Department of Family Health Care Nursing, University of California, San Francisco, 2 Koret Way, Room N405E, Box 0606, CA 94143, USA. Email: [email protected]

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Introduction Around the globe, 15 million strokes occur annually (Mackay & Mensah, 2004). Stroke is a common cause of physical disability as well as impairments in cognition and communication; thus, stroke survivors often require short- and long-term assistance from caregivers in performing activities of daily living (Forsberg-Warleby, Moller, & Blomstrand, 2001, 2002; VisserMeily et al., 2009). Because stroke has a sudden onset, family members must quickly assume the role of informal caregivers without an opportunity to learn new skills or adjust. As a result, caregivers may experience stress and a sense of burden even early in the poststroke period (Bugge, Alexander, & Hagen, 1999; Forsberg-Warleby et al., 2001; Van Puymbroeck & Rittman, 2005). Burden is a common phenomenon for caregivers, and it has negative consequences for their health and well-being.

Background Long-term negative health outcomes in caregivers include chronic stress (Ostwald, Bernal, Cron, & Godwin, 2009) and disorders such as hypertension and angina (White, Mayo, Hanley, & Wood-Dauphinee, 2003); high caregiving strain is a risk factor for mortality (Schulz & Beach, 1999). Furthermore, as many as 23% to 33% of caregivers of stroke survivors experience depression (Berg, Palomaki, Lehtihalmes, Lonnqvist, & Kaste, 2003; Berg, Palomaki, Lonnqvist, Lehtihalmes, & Kaste, 2005), and the greater the burden the worse the depressive symptoms in these caregivers (Chumbler, Rittman, Van Puymbroeck, Vogel, & Qin, 2004). Thus, it is important to understand the development of caregiver burden in the early poststroke period if we are to prevent or ameliorate it in a timely fashion and aid families to cope effectively in their role as informal caregivers. No formal analysis of the concept of caregiver burden in the context of caring for stroke survivors for any time period poststroke, however, was found in the literature review. Thus, the purpose of this analysis was to clarify and synthesize the concept of caregiver burden in the early poststroke period and to contrast it with related concepts that have been used to describe such caregivers in this same caregiving period. For the purpose of this analysis, the early poststroke period was defined as within the first 6 months poststroke.

Method Rodgers’s (2000) evolutionary method of concept analysis was used. In the evolutionary method, a concept is “an abstraction that is expressed in some


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Table 1. The Rodgers’s Evolutionary Method. The steps of analysis 1. Identify the concept of interest and associate with expressions (including surrogate terms). 2. Identify and select an appropriate realm (setting and sample) for data collection. 3. Collect data relevant to identify: a. attributes of the concept; and b. contextual basis of the concept, including interdisciplinary, socio-cultural, and temporal (antecedents and consequential occurrences) variations. 4. Analyze data regarding the above characteristics of the concept. 5. Identify an exemplar of the concept, if appropriate. 6. Identify implications, hypotheses, and implications for future development of the concept. Source. Rodgers (2000).

form, either discursive or non-discursive” (Rodgers, 1989, p. 332). Concept analysis is based on “the use phase of development and is directed toward clarification of the concept and its current use, and uncovering the attributes of the concept as a basis for further development” (Rodgers, 2000, p. 83). In contrast with traditional methods of concept analysis, Rodgers (2000) views a concept as dynamic, not permanent. The method emphasizes that concepts are evolving, depending on interconnected—rather than fixed and precise— characteristics and their contextual components. Because the overall concept of burden in caregivers of stroke survivors has evolved and the concept itself is dynamic, Rodgers’s (2000) evolutionary method seemed appropriate for this analysis. It allowed us to reveal antecedents, attributes, and consequences of caregiver burden in the early poststroke period and provided a comprehensive understanding of the concept. The steps of Rodgers’s evolutionary method are described in Table 1.

Data Sources MEDLINE, PubMed, CINAHL, PsycINFO, and ISI Web of Knowledge databases were searched for relevant literature, using the keywords “stroke or cerebrovascular accident,” “caregiver or carer,” and “burden, stress or strain.” Publications from 1960 to 2014 were searched, limited only by English language and human subjects. After duplicate articles were deleted, the search yielded 747 articles and their titles and abstracts were reviewed. The reference lists of publications related to burden in caregivers of stroke survivors were also reviewed to identify studies that might have been missed when


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searching databases. Articles for inclusion in this analysis were selected only if they helped clarify the concept of caregiver burden, its evolution and antecedents, and/or its attributes and consequences in the early poststroke period. A final set of 32 articles that described caregiver burden, published from 1993 to 2013, was selected. These included 20 cross-sectional or longitudinal empirical research studies that incorporated caregiver burden within the first 6 months poststroke; a few of these were longitudinal studies with end points greater than 6 months poststroke, but they included the concept of caregiver burden within the first 6 months poststroke. Also included were one theoretical paper and 11 research articles that did not specify the time period poststroke but included data collection points that were reasoned to capture that early period, for example, time between hospital discharge and measurement of caregiver burden. Definitions of caregiver burden and/or related terms that articles used were reviewed. To obtain antecedents, attributes, and consequences of caregiver burden, statistically significant characteristics related to caregiver burden were considered from quantitative studies. Concepts or themes related to caregiver burden were also derived from qualitative studies and a theoretical paper. Articles related solely to caregiver burden in the longer term, such as 1 year or 5 years poststroke, were excluded from this analysis. Systematic review papers were also excluded, but articles selected from their tables of analysis were reviewed for potential inclusion.

Results The concept of caregiver burden has changed over time. First introduced in the 1960s (Chou, 2000), studies on caregiver burden in those caring for stroke survivors, encompassing any time period poststroke, have been conducted since the mid-1980s. From then through the mid-1990s, investigators focused on negative aspects of burden, measuring burden quantitatively with survey instruments that conveyed a general perspective of caregiver burden; these added little specificity, however, about the meaning of burden to individual caregivers or how individuals’ caregiving experiences may differ. Subsequent qualitative studies helped to fill that gap, revealing that individuals may indeed experience caregiving differently (Greenwood, Mackenzie, Wilson, & Cloud, 2009; Johnson, 1998; Periard & Ames, 1993; Pierce, Steiner, Hicks, & Holzaepfel, 2006). For example, Periard and Ames (1993) found that younger caregivers perceived more lifestyle changes and greater burden after their relatives’ stroke and focused on specific strategies in dealing with their problems, whereas older caregivers were more accepting of their new situations. The dictionary definition of burden is “something oppressive or worrisome” or “the bearing of a load” (Merriam-Webster, 2009). Even this general concept


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of burden is itself dynamic. Zarit, Todd, and Zarit (1986) defined caregiver burden as “the extent to which caregivers perceived their emotional or physical health, social life, and financial status as suffering as a result of caring for their relative” (p. 261). Caregiver burden was related to “an imbalance of perceived demands and resources” (Chou, 2000, p. 399). In the context of stroke survivor caregivers over the long-term, caregiver burden referred to the degree to which family members felt overwhelmed and strained in caring for their care recipients with stroke (Elmstahl, Malmberg, & Annerstedt, 1996). In the early poststroke period, caregiver burden was described as “the amount of time and assistance devoted to dealing with the consequences of disability” (Vincent, Desrosiers, Landreville, Demers, & BRAD Group, 2009, p. 457).

Surrogate Terms and Related Concepts The concept of caregiver burden in the early poststroke period is equivocal because other related concepts or multiple terms have been used inconsistently in describing it. There is also difficulty in differentiating definitions of caregiver burden from other related concepts because several different quantitative instruments have been used to measure burden. Examples of these instruments are found in Table 2. Our analysis revealed five concepts related to caregiver burden in the early poststroke period: stress, strain, burnout, sense of competence, and psychological well-being. In the articles we reviewed, caregiver burden in the early poststroke period was often referred to as stress or strain, and these terms were used interchangeably (see, for example, Bhattacharjee, Vairale, Gawali, & Dalal, 2012; Hung et al., 2012; Segal & Schall, 1996). Likewise, burnout was also used to describe caregiver burden, while sense of competence and psychological well-being were used to describe the opposite of caregiver burden. These are further described below. Stress can be defined as “bodily or mental tension resulting from factors that tend to alter an existent equilibrium” (Merriam-Webster, 2009). In the literature on family caregivers of persons with stroke, the concept of stress has been integrated with the description of caregiver burden: “a multidimensional concept as it entails the physical, social, psychological and financial factors” (Bhattacharjee et al., 2012, p. 114). Strain, defined as “excessive physical or mental tension; a force, influence, or factor causing such tension” (Merriam-Webster, 2009), was also commonly applied to the concept of caregiver burden in the early poststroke period. To describe strain in stroke survivor caregivers, Periard and Ames (1993) borrowed Pearlin and Schooler’s (1978) definition of strain, that is, “those enduring problems that have the potential for arousing threat” (p. 3).


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Table 2. Summary of Instruments Used to Measure Caregiver Burden in the Early Poststroke Period and Cited Literature. Instrument

Cited literature

Burden Assessment Schedule Caregiver Burden Inventory Caregiver Burden Scale Measure of Perceived Burden of Caregivers of People with Physical Disabilities Living at Home Oberst Caregiving Burden Scale Self-Rated Burden Scale Perceived Stress Scale Questionnaire on Resources and Stress Relative’s Stress Scale Caregiver Strain Index

Burnout Measure Sense of Competence Questionnaire General Well-Being Index Psychological General WellBeing Index Well-Being Questionnaire Well-Being Measure Caregiver Reaction Assessment

Sreedharan et al. (2013) Tooth, McKenna, Barnett, Prescott, and Murphy (2005) McCullagh, Brigstocke, Donaldson, and Kalra (2005) Vincent, Desrosiers, Landreville, Demers, and BRAD Group (2009) Bhattacharjee, Vairale, Gawali, and Dalal (2012) van Exel, Koopmanschap, van den Berg, Brouwer, and van den Bos (2005) Teel, Duncan, and Lai (2001) Segal and Schall (1996) Thommessen, Wyller, Bautz-Holter, and Laake (2001); Thommessen et al. (2002) Bhattacharjee et al. (2012); Blake, Lincoln, and Clarke. (2003); Bugge, Alexander, and Hagen (1999); Hung et al. (2012); Ilse, Feys, de Wit, Putman, and de Weerdt (2008); Periard and Ames (1993); Tooth et al. (2005); van Exel et al. (2005); Visser-Meily et al. (2009) Nilsson, Axelsson, Gustafson, Lundman, and Norberg (2001) Chumbler, Rittman, Van Puymbroeck, Vogel, and Qin (2004); Scholte op Reimer, de Haan, Pijnenborg, Limburg, and van den Bos (1998); Van Puymbroeck and Rittman (2005) Hodgson, Wood, and Langton-Hewer (1996) Forsberg-Warleby, Moller, and Blomstrand (2001) Larson et al. (2005); Larson et al. (2008) Nilsson et al. (2001) Teel et al. (2001)

Caregiver burden itself was also defined as strain, that is, “strain or load on people caring for an elderly member of the family” (Thommessen et al., 2002, p. 79).


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Burnout, defined as “a syndrome of physical, intellectual and emotional exhaustion related to strain of a chronic day-to-day type,” was used to describe caregivers of stroke survivors in the early poststroke period (Nilsson, Axelsson, Gustafson, Lundman, & Norberg, 2001, p. 204). Nilsson et al. (2001) reported that examples causing burnout, in general, included failing coping strategies, unrealistic expectations, overload, and emotionally demanding tasks. They also reported that caregivers of stroke survivors in the early poststroke period may experience burnout due to the consequences of the stroke for stroke survivors and their own burdensome everyday life. Sense of competence was used to describe the opposite of caregiver burden in the early poststroke period, often using the Sense of Competence Questionnaire (Chumbler et al., 2004; Scholte op Reimer, de Haan, Pijnenborg, Limburg, & van den Bos, 1998; Van Puymbroeck & Rittman, 2005). Although the dictionary definition of competence is “a sufficiency of means for the necessities and conveniences of life” (Merriam-Webster, 2009), the literature described burden as a lack of competence, helping to explain inclusion of items in measurement tools such as “dissatisfaction with care recipients, dissatisfaction with one’s own performance as a caregiver and negative consequences of involvement in care for the personal life of the caregiver” (Van Puymbroeck & Rittman, 2005, p. 751). The concept of caregiver burden in the early poststroke period also included degree of psychological well-being. This concept was assessed in caregivers of stroke survivors during the period of interest using a range of instruments (Psychological General Well-Being Index, Forsberg-Warleby et al., 2001; General Well-Being Index, Hodgson, Wood, & Langton-Hewer, 1996; Well-being Questionnaire, Larson et al., 2005, 2008; and Well-Being Measure, Nilsson et al., 2001); negative psychological well-being scores were then incorporated into the concept of caregiver burden. No definition was found for psychological well-being in this literature. In the context of caregivers of older adults with Alzheimer’s disease, however, decline in psychological well-being was defined as “a subjective state resulting from both long-term personality dispositions, general psychopathology, and situationspecific stressors, and, therefore, . . . viewed as an outcome of caregiving stress” (Lawton, Moss, Kleban, Glicksman, & Rovine, 1991, p. 182).

Antecedents Antecedents are phenomena or situations that precede development of a concept (Rodgers, 2000). As shown in Figure 1, our analysis revealed the following antecedents of caregiver burden in the early poststroke period: caregiver


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Figure 1. Antecedents, attributes and consequences of caregiver burden in the early poststroke period.

socio-demographic characteristics (e.g., relationship to the stroke survivor, gender), health status and coping capacity, and stroke survivor functional status. Caregiver socio-demographic characteristics. Several caregiver socio-demographic factors were associated with caregiver burden. The relationship to the stroke survivor was a predictor; at 1 month after stroke, spousal caregivers reported higher caregiver burden than did non-spousal caregivers (Van Puymbroeck & Rittman, 2005). Another study reported that daughters-in law felt higher burden than did spousal caregivers (Bhattacharjee et al., 2012). Caregiver age was a predictor of burden at 6 months after stroke (van Exel, Koopmanschap, van den Berg, Brouwer, & van den Bos, 2005): The mean caregiver-burden score decreased as caregiver age increased (Bhattacharjee et al., 2012; Periard & Ames, 1993). Gender also appeared to be important; the majority of caregivers were female, and female caregivers reported higher burden (Bhattacharjee et al., 2012; Bugge et al., 1999) and financial difficulty (Sreedharan et al., 2013) than did male caregivers. Another study reported that female spouses had lower psychological well-being and this, in turn, was related to lower quality of life (Larson et al., 2008), one of the consequences found in our analysis.


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Caregiver health status. Caregiver’s anxiety at 3 months poststroke and depression during the first 6 months poststroke were predictors of caregiver burden (Bhattacharjee et al., 2012; Hung et al., 2012; McCullagh, Brigstocke, Donaldson, & Kalra, 2005). Furthermore, at 6 months poststroke, poorer health status of caregivers was associated with greater caregiver burden (Bugge et al., 1999). Caregiver coping capacity. Coping capacity was highly associated with the burden of these caregivers (Forsberg-Warleby et al., 2001; Van Puymbroeck & Rittman, 2005; Visser-Meily et al., 2009). In addition, caregivers who had better coping strategies on assuming the caregiver role had better outcomes, including a higher quality of life (Visser-Meily et al., 2009). Stroke survivor functional status. After stroke, caregivers were challenged to accept and become accustomed to the functional deficits of stroke survivors (Visser-Meily et al., 2009). The high dependence on the caregiver for activities of daily living was found to be related to increased caregiver burden at 2, 4, and 6 months poststroke (Ilse, Feys, de Wit, Putman, & de Weerdt, 2008). The burden of caregivers at 6 months poststroke was also associated with the degree of stroke survivors’ “handicap” that determined the amount of time needed for care provision (Segal & Schall, 1996). Handicap was defined as “the sum of the effects of an individual’s disabilities in interaction with the environment, or an individual’s performance of normal social roles” (Segal & Schall, 1996, p. 304) and was associated with greater burden (Scholte op Reimer et al., 1998). Other authors used disability to describe handicap. Although a range of terms in addition to disability and handicap were also used, the terms were all defined similarly. Disability affecting daily-living activities was a predictor of caregiver burden (Hung et al., 2012; van Exel et al., 2005). Improved motor and cognitive functional status of stroke survivors was associated with less time spent by caregivers in providing care at 6 and 12 months after discharge to home (Tooth, McKenna, Barnett, Prescott, & Murphy, 2005). Poorer cognitive function in stroke survivors during the first 6 months after stroke was a determinant of greater caregiver burden (Hung et al., 2012; Scholte op Reimer et al., 1998; Thommessen, Wyller, Bautz-Holter, & Laake, 2001). Finally, stroke survivors’ greater communication deficits at baseline were associated with greater caregiver burden at 6 months after discharge from acute care (Vincent et al., 2009). In the early period after stroke, health care providers cannot predict precisely the degree of physical or cognitive impairment stroke survivors will experience (O’Connell, Baker, & Prosser, 2003), and the process of recovery from stroke is itself gradual. Individual caregivers develop their own


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perspective based on their perception of functional deficits of stroke survivors they have known previously rather than the actual functional status of the current care recipients (Forsberg-Warleby et al., 2002). At 3 months and 6 months after stroke, caregiver’s perception of stroke survivor’s physical functional status predicted caregiver burden (Blake, Lincoln, & Clarke, 2003).

Attributes Our analysis revealed three important attributes of caregiver burden in the early poststroke period: (a) objective and subjective aspects, (b) time spent caring for the stroke survivor, and (c) uncertainty about the future for the stroke survivor and caregiver. Objective and subjective aspects. The literature about the early poststroke period distinguished objective burden from subjective burden. Objective burden was defined as the caregiving tasks that are performed, such as assistance with self-care, mobility, instrumental activities, and financial management, as well as the time spent on each task (van Exel et al., 2005). Caregiving tasks include such activities as housekeeping, shopping, or visiting doctor’s offices or hospitals after stroke (van Exel et al., 2005); one third of caregivers, for example, reported overwhelming household responsibilities (Thommessen et al., 2001). Objective burden was also defined as “costs related to caregiving, how much physical assistance and intervention is needed to assist in activities of daily living due to increased physical disability, cognitive impairments and housekeeping tasks” (Bhattacharjee et al., 2012, p. 114) or “demands and disruptions caused by caregiving” (Thommessen et al., 2002, p. 79). Examples of objective burden include “amount of time spent on caregiving or financial problems” (Scholte op Reimer et al., 1998, p. 373). Subjective burden was defined as “the psychological, social, or emotional impact caregivers experience from the objective burden of caregiving” (van Exel et al., 2005, p. 12), “the distress experienced” (Thommessen et al., 2002, p. 79), “the positive or negative feelings and perceptions of the caregiver associated with providing caregiving functions” (Bhattacharjee et al., 2012, p. 114), or “the perception of the impact of caregiving-related demands or problems” (Scholte op Reimer et al., 1998, p. 373). The majority of articles reviewed for this concept analysis measured subjective burden using survey instruments, such as the Caregiver Strain Scale. Time spent caring for the stroke survivor. The more time caregivers spent helping stroke survivors, the greater the burden they felt (Bhattacharjee et al., 2012; Bugge et al., 1999). Family members spent a mean 2 to 3 hr per day


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caring for stroke survivors even when stroke survivors were in the hospital, 13.5 hr per day in the first month after stroke, 16.6 hr per day at 3 months after stroke, and 16.4 hr per day at 6 months after stroke (Bugge et al., 1999). Another study reported that caregivers spent a mean of 10.8 hr per day providing surveillance of stroke survivors and a mean of 3.4 hr per day in caregiving tasks such as housekeeping, shopping, or visiting doctor’s offices or hospitals at 6 months after stroke (van Exel et al., 2005). Uncertainty about the future for the stroke survivor and caregiver. In the early poststroke period, caregivers of stroke survivors were not certain about what to expect, that is, what might happen next and how fully the stroke survivor was likely to recover (Brereton & Nolan, 2002; Forsberg-Warleby et al., 2001; Greenwood et al., 2009; Hunt & Smith, 2004; O’Connell et al., 2003). Family caregivers expressed worry about how the disease would affect the daily activities of stroke survivors and their own occupational and living situations (Forsberg-Warleby et al., 2001). This uncertainty and doubt can be increased by lack of information or knowledge about stroke and incomplete understanding of the process of recovery after stroke (Forsberg-Warleby et al., 2001; Hunt & Smith, 2004). The view about the future was defined as “perception of the disease and its impacts on [the] future health and ability of the stroke patient, changes in daily activities, roles and life circumstances and one’s own coping capacity” (Forsberg-Warleby et al., 2002, p. 509). Caregivers were worried about how to cope with their caregiver roles and situations and their uncertainty about the future (Burman, 2001; Hunt & Smith, 2004). Their views of the future varied by effectiveness in coping with the new role and were also affected by the actual, perceived, and/or feared functional status of their stroke survivors (Forsberg-Warleby et al., 2002).

Consequences Consequences are phenomena or situations that result from a concept (Rodgers, 2000). From our review, we identified three consequences to caregiver burden in the early poststroke period: quality of life and physical and psychological impacts. Caregiver burden and quality of life were reciprocally related. Increased burden resulted in decreased caregiver quality of life (Larson et al., 2005; Van Puymbroeck & Rittman, 2005), and caregiver health-related quality of life at 6 months poststroke was found to be strongly associated with caregiver burden (Scholte op Reimer et al., 1998; van Exel et al., 2005). In the early poststroke period, physical impact included sleep disturbance (Bhattacharjee et al., 2012; Thommessen et al., 2001) related to


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worry about stroke survivor’s sleeplessness or need for care during the night (Pierce et al., 2006). Mental health in general was inversely associated with caregiver burden at both 3 months and 6 months after stroke (Teel, Duncan, & Lai, 2001). Psychological impacts included anxiety (McCullagh et al., 2005), concern (Cameron & Gignac, 2008), anger (Pierce et al., 2006), fear about the recurrence of stroke or other medical complications (ForsbergWarleby et al., 2002), dissatisfaction with care recipients, dissatisfaction with performance as a caregiver (Van Puymbroeck & Rittman, 2005), and depression (Chumbler et al., 2004; Van Puymbroeck & Rittman, 2005). In one study, caregiver burden was a predictor of depressive symptoms (Chumbler et al., 2004), whereas, in another study, caregiver depression was a predictor of caregiver burden (Hung et al., 2012).

Discussion The concept of caregiver burden in the early poststroke period was multidimensional. No single existing definition fully captured this multidimensionality, and the concept appeared to be closely linked with several antecedents and consequences. Furthermore, it was difficult to establish from existing literature a clear linear cause-and-effect relationship between caregiver burden and other factors. These relationships may be nonrecursive in that the direction of causes could run both ways. For example, caregiver burden can both affect and be influenced by the caregiver’s quality of life or depression. In the early poststroke period, caregivers were not sure about how much the stroke patient would recover functionally (Cameron & Gignac, 2008). In contrast, the level of recovery was relatively stable at 1 year poststroke (Anderson, Linto, & Stewart-Wynne, 1995), suggesting a likely difference in the caregiving experience between these two periods. Thus, focusing on the early poststroke period may be uniquely important. Awareness and understanding of the burden of caregivers, even in the early poststroke period, may lead to interventions yielding better longer-term outcomes for caregivers. Although caregivers started to learn about the course of strokes and sought information about the status of stroke survivors during the early poststroke period (Brereton & Nolan, 2002; Cameron & Gignac, 2008), they believed that health care providers had not given them enough information about stroke or the prognosis of their care recipients (Forsberg-Warleby et al., 2001). Another study reported that caregivers of stroke survivors in acutecare settings did not receive sufficient information regarding stroke because it did not come directly from health care providers, nor were they sure what questions they needed to ask (O’Connell et al., 2003). Although these studies did not directly link lack of information with burden, this association seems


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plausible. Health professionals should inform caregivers and stroke survivors about the course of stroke and explain the difficulty in determining the resulting functional status during the early poststroke period (O’Connell et al., 2003). The information should be given to caregivers using language they will understand, both to satisfy their intellectual desire and to provide information about the stroke survivor’s prognosis. In addition, to maximize its effect, caregivers may need information in different forms including verbal, written, or online. We suggest that onset of caregiver burden in the early poststroke period influences later outcomes for both caregiver’s quality of life and stroke survivor’s recovery. Thus, early intervention, for example, education, consultation, or skills training for both caregivers and stroke survivors as suggested above, may be helpful to aid caregivers in coping effectively in their informal caregiving role and, thus, reduce the sense of continued burden seen at 6 months poststroke or beyond. Furthermore, because caregiver well-being and/or depressive symptoms have also been shown to influence stroke survivor’s health (Grant et al., 2013), preventing or reducing caregiver burden and shoring up coping in the informal caregiver role during the early poststroke period may also positively influence recovery of the stroke survivors themselves. Among the 32 articles selected for this concept analysis, 3 studies specifically investigated burden of caregivers at less than 1 month poststroke and 3 studies assessed burden at 1 month poststroke; none included all of the identified antecedents or attributes revealed in this analysis. The sudden onset of stroke is the first challenge family caregivers confront, and the stroke event leads most patients to be hospitalized in acute-care settings (Bugge et al., 1999; Cameron & Gignac, 2008; O’Connell et al., 2003). Hospitalization emphasizes survival and stabilization (Cameron & Gignac, 2008). Data about caregiver burden in the immediate recovery phase after stroke, such as within a few days to a month, can provide insights into the early development of caregiver burden, increase current knowledge regarding caregivers and stroke survivors, and guide the development of caregiver interventions to aid in coping initially with their role. The resultant interventions may lead to better caregiving experiences and caregiver health outcomes over time. After hospitalization, stroke survivors were discharged to home (31%), home with home care services (15%), rehabilitation center (20%), or skilled nursing/long-term care facility (34%; Kind, Smith, Frytak, & Finch, 2007). The burden of caregivers of stroke survivors is a common concept across settings including the hospital, nursing home, residential-care center, and homes of relatives (Bugge et al., 1999). Few studies were found that focused on burden of caregivers of stroke survivors living in nursing homes or


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residential-care centers; a concept analysis of caregiver burden in different settings may discern special needs of caregivers depending on setting. The majority of the literature on caregivers of stroke survivors in the early period after stroke is silent on the possible role of race or ethnicity in the development of or prevalence of caregiver burden. One study reported that racial and ethnic differences had a negative impact on the life of caregivers at 1 month and 6 months after stroke (Van Puymbroeck & Rittman, 2005). African American caregivers of stroke survivors, especially, have not often been investigated (Bakas, Austin, Jessup, Williams, & Oberst, 2004). Burden from caring for stroke survivors may vary depending on racial, ethnic, or cultural background, although caregiving is a common phenomenon across races and ethnicities. Additional studies on caregiver burden that include greater inclusion of various racial or ethnic groups are required, and a concept analysis based on findings from such studies may help clarify these issues.

Limitations This article has limitations. First, articles that did not identify the specific time points after stroke were excluded. There is a possibility that an important antecedent, attribute, or consequence of burden of caregivers of stroke survivors in the early poststroke period found in these articles was not captured. Second, the number of articles selected for this concept analysis is relatively small. Important factors that may have affected outcomes in caregivers of stroke survivors, such as social support, were not studied in the articles selected for this analysis. Yet, other literature suggests that caregivers of stroke survivors with more social support had less depression and better health within 13 weeks post discharge (Grant et al., 2006). And in their systematic review of caregiver burden following stroke, Rigby, Gubitz, and Phillips (2009) reported that factors influencing caregiver burden were not consistent across studies. Finally, we included articles published from 1993 to 2013, and there is a possibility that some predictors affecting caregiver burden may have changed over time.

Conclusion The existing literature has used multiple definitions of caregiver burden, and in the early poststroke period, it appears that burden is closely interconnected with other factors. Additional studies focused on the burden of stroke survivor caregivers in the immediate poststroke period (such as within a few days or 1 month following stroke) and/or the caregiving experience in specific settings (including nursing homes or residential-care centers) will provide


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additional understanding of the special needs of these caregivers. Furthermore, research that includes participants representing diverse racial and ethnic backgrounds is required to better differentiate issues of caregiver burden. Health care providers should acknowledge the multidimensional concept of caregiver burden in the early poststroke period and integrate that concept into their clinical practice to encourage and achieve effective care and better health outcomes for both caregivers and stroke survivors. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by grants from the John A. Hartford Foundation’s National Hartford Centers of Gerontological Nursing Excellence Award Program and the National Institutes of Health/National Institute of Nursing Research (T32 NR009356). Dr. Eeeseung Byun is currently funded by a training grant from the National Institutes of Health/National Institute of Nursing Research (T32 NR007088).

References 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. Bakas, T., Austin, J. K., Jessup, S. L., Williams, L. S., & Oberst, M. T. (2004). Time and difficulty of tasks provided by family caregivers of stroke survivors. Journal of Neuroscience Nursing, 36, 95-106. Berg, A., Palomaki, H., Lehtihalmes, M., Lonnqvist, J., & Kaste, M. (2003). Poststroke depression: An 18-month follow-up. Stroke, 34, 138-143. Berg, A., Palomaki, H., Lonnqvist, J., Lehtihalmes, M., & Kaste, M. (2005). Depression among caregivers of stroke survivors. Stroke, 36, 639-643. Bhattacharjee, M., Vairale, J., Gawali, K., & Dalal, P. M. (2012). Factors affecting burden on caregivers of stroke survivors: Population-based study in Mumbai (India). Annals of Indian Academy Neurology, 15, 113-119. Blake, H., Lincoln, N. B., & Clarke, D. D. (2003). Caregiver strain in spouses of stroke patients. Clinical Rehabilitation, 17, 312-317. Brereton, L., & Nolan, M. (2002). “Seeking”: A key activity for new family carers of stroke survivors. Journal of Clinical Nursing, 11, 22-31. Bugge, C., Alexander, H., & Hagen, S. (1999). Stroke patients’ informal caregivers. Patient, caregiver, and service factors that affect caregiver strain. Stroke, 30, 1517-1523.


Byun and Evans

483

Burman, M. E. (2001). Family caregiver expectations and management of the stroke trajectory. Rehabilitation Nursing, 26, 94-99. Cameron, J. I., & Gignac, M. A. (2008). “Timing it right”: A conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Education and Counseling, 70, 305-314. Chou, K. R. (2000). Caregiver burden: A concept analysis. Journal of Pediatric Nursing, 15, 398-407. Chumbler, N. R., Rittman, M., Van Puymbroeck, M., Vogel, W. B., & Qin, H. (2004). The sense of coherence, burden, and depressive symptoms in informal caregivers during the first month after stroke. International Journal of Geriatric Psychiatry, 19, 944-953. Elmstahl, S., Malmberg, B., & Annerstedt, L. (1996). Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Archives of Physical Medicine and Rehabilitation, 77, 177-182. Forsberg-Warleby, G., Moller, A., & Blomstrand, C. (2001). Spouses of first-ever stroke patients: Psychological well-being in the first phase after stroke. Stroke, 32, 1646-1651. Forsberg-Warleby, G., Moller, A., & Blomstrand, C. (2002). Spouses of first-ever stroke patients: Their view of the future during the first phase after stroke. Clinical Rehabilitation, 16, 506-514. Grant, J. S., Clay, O. J., Keltner, N. L., Haley, W. E., Wadley, V. G., Perkins, M. M., & Roth, D. L. (2013). Does caregiver well-being predict stroke survivor depressive symptoms? A mediation analysis. Topics in Stroke Rehabilitation, 20, 44-51. doi:10.1310/tsr2001-44 Grant, J. S., Elliott, T. R., Weaver, M., Glandon, G. L., Raper, J. L., & Giger, J. N. (2006). Social support, social problem-solving abilities, and adjustment of family caregivers of stroke survivors. Archives of Physical Medicine and Rehabilitation, 87, 343-350. Greenwood, N., Mackenzie, A., Wilson, N., & Cloud, G. (2009). Managing uncertainty in life after stroke: A qualitative study of the experiences of established and new informal carers in the first 3 months after discharge. International Journal of Nursing Studies, 46, 1122-1133. Hodgson, S. P., Wood, V. A., & Langton-Hewer, R. (1996). Identification of stroke carers “at risk”: A preliminary study of the predictors of carers’ psychological well-being at one year post stroke. Clinical Rehabilitation, 10, 337-346. Hung, J. W., Huang, Y. C., Chen, J. H., Liao, L. N., Lin, C. J., Chuo, C. Y., & Chang, K. C. (2012). Factors associated with strain in informal caregivers of stroke patients. Chang Gung Medical Journal, 35(5), 392-401. Hunt, D., & Smith, J. A. (2004). The personal experience of carers of stroke survivors: An interpretative phenomenological analysis. Disability and Rehabilitation, 26, 1000-1011. Ilse, I. B., Feys, H., de Wit, L., Putman, K., & de Weerdt, W. (2008). Stroke caregivers’ strain: Prevalence and determinants in the first six months after stroke. Disability and Rehabilitation, 30, 523-530.


484


Johnson, P. D. (1998). Rural stroke caregivers: A qualitative study of the positive and negative response to the caregiver role. Topics in Stroke Rehabilitation, 5(3), 51-68. Kind, A. J. H., Smith, M. A., Frytak, J. R., & Finch, M. D. (2007). Bouncing back: Patterns and predictors of complicated transitions 30 days after hospitalization for acute ischemic stroke. Journal of the American Geriatrics Society, 55, 365-373. Larson, J., Franzen-Dahlin, A., Billing, E., Arbin, M., Murray, V., & Wredling, R. (2005). Predictors of quality of life among spouses of stroke patients during the first year after the stroke event. Scandinavian Journal of Caring Sciences, 19, 439-445. Larson, J., Franzen-Dahlin, A., Billing, E., von Arbin, M., Murray, V., & Wredling, R. (2008). The impact of gender regarding psychological well-being and general life situation among spouses of stroke patients during the first year after the patients’ stroke event: A longitudinal study. International Journal of Nursing Studies, 45, 257-265. Lawton, M. P., Moss, M., Kleban, M. H., Glicksman, A., & Rovine, M. (1991). A two-factor model of caregiving appraisal and psychological well-being. Journal of Gerontology, 46, P181-P189. Mackay, J., & Mensah, G. (2004). Atlas of heart disease and stroke. Geneva, Switzerland: World Health Organization. McCullagh, E., Brigstocke, G., Donaldson, N., & Kalra, L. (2005). Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke, 36, 2181-2186. Merriam-Webster. (2009). Merriam-Webster online. Retrieved from http://www. merriam-webster.com/dictionary Nilsson, I., Axelsson, K., Gustafson, Y., Lundman, B., & Norberg, A. (2001). Wellbeing, sense of coherence, and burnout in stroke victims and spouses during the first few months after stroke. Scandinavian Journal of Caring Sciences, 15, 203-214. O’Connell, B., Baker, L., & Prosser, A. (2003). The educational needs of caregivers of stroke survivors in acute and community settings. Journal of Neuroscience Nursing, 35, 21-28. Ostwald, S. K., Bernal, M. P., Cron, S. G., & Godwin, K. M. (2009). Stress experienced by stroke survivors and spousal caregivers during the first year after discharge from inpatient rehabilitation. Topics in Stroke Rehabilitation, 16, 93-104. Pearlin, L. I., & Schooler, C. (1978). The structure of coping. Journal of Health and Social Behavior, 19, 2-21. Periard, M. E., & Ames, B. D. (1993). Lifestyle changes and coping patterns among caregivers of stroke survivors. Public Health Nursing, 10, 252-256. Pierce, L. L., Steiner, V., Hicks, B., & Holzaepfel, A. L. (2006). Problems of new caregivers of persons with stroke. Rehabilitation Nursing, 31, 166-172; discussion 173. Rigby, H., Gubitz, G., & Phillips, S. (2009). A systematic review of caregiver burden following stroke. International Journal of Stroke, 4, 285-292.


Byun and Evans

485

Rodgers, B. L. (1989). Concepts, analysis, and the development of nursing knowledge: The evolutionary cycle. Journal of Advanced Nursing, 14, 330-335. Rodgers, B. L. (2000). Concept analysis: An evolutionary view. In B. L. Rodgers & K. A. Knafl (Eds.), Concept development in nursing (2nd ed., pp. 77-102). Philadelphia, PA: W. B. Saunders. Scholte op Reimer, W. J., de Haan, R. J., Pijnenborg, J. M., Limburg, M., & van den Bos, G. A. (1998). Assessment of burden in partners of stroke patients with the sense of competence questionnaire. Stroke, 29, 373-379. Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. Journal of the American Medical Association, 282, 2215-2219. Segal, M. E., & Schall, R. R. (1996). Life satisfaction and caregiving stress for individuals with stroke and their primary caregivers. Rehabilitation Psychology, 41, 303-320. Sreedharan, S. E., Unnikrishnan, J. P., Amal, M. G., Shibi, B. S., Sarma, S., & Sylaja, P. N. (2013). Employment status, social function decline, and caregiver burden among stroke survivors. A South Indian study. Journal of the Neurological Sciences, 332(1-2), 97-101. Teel, C. S., Duncan, P., & Lai, S. M. (2001). Caregiving experiences after stroke. Nursing Research, 50, 53-60. Thommessen, B., Aarsland, D., Braekhus, A., Oksengaard, A. R., Engedal, K., & Laake, K. (2002). The psychosocial burden on spouses of the elderly with stroke, dementia, and Parkinson’s disease. International Journal of Geriatric Psychiatry, 17, 78-84. Thommessen, B., Wyller, T. B., Bautz-Holter, E., & Laake, K. (2001). Acute phase predictors of subsequent psychosocial burden in carers of elderly stroke patients. Cerebrovascular Diseases, 11, 201-206. Tooth, L., McKenna, K., Barnett, A., Prescott, C., & Murphy, S. (2005). Caregiver burden, time spent caring, and health status in the first 12 months following stroke. Brain Injury, 19, 963-974. van Exel, N. J. A., Koopmanschap, M. A., van den Berg, B., Brouwer, W. B. F., & van den Bos, G. A. M. (2005). Burden of informal caregiving for stroke patients. Identification of caregivers at risk of adverse health effects. Cerebrovascular Diseases, 19, 11-17. Van Puymbroeck, M., & Rittman, M. R. (2005). Quality-of-life predictors for caregivers at 1 and 6 months poststroke: Results of path analyses. Journal of Rehabilitation Research & Development, 42, 747-760. Vincent, C., Desrosiers, J., Landreville, P., Demers, L., & BRAD Group. (2009). Burden of caregivers of people with stroke: Evolution and predictors. Cerebrovascular Diseases, 27, 456-464. Visser-Meily, A., Post, M., van de Port, I., Maas, C., Forstberg-Warleby, G., & Lindeman, E. (2009). Psychosocial functioning of spouses of patients with stroke from initial inpatient rehabilitation to 3 years poststroke: Course and relations with coping strategies. Stroke, 40, 1399-1404.


486


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, 177-189. Zarit, S. H., Todd, P. A., & Zarit, J. M. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. Gerontologist, 26, 260-266.

Author Biographies Eeeseung Byun, PhD, RN, ACNP-BC, is a postdoctoral fellow in the Department of Family Health Care Nursing at the University of California, San Francisco. Lois K. Evans, PhD, RN, FAAN, is a professor Emerita of nursing at the University of Pennsylvania School of Nursing.


Understanding stroke survivorship: expanding the concept of poststroke disability.

[Impact on quality of life in caregivers of stroke survivors].

Central poststroke pain in young ischemic stroke survivors in the Helsinki Young Stroke Registry.

Addressing the burden of stroke caregivers: a literature review.

A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation.

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Reported burden on informal caregivers of ICU survivors: a literature review.

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The Concept of "Burden" in Atrial Fibrillation.

Stroke survivors', caregivers' and GPs' attitudes towards a polypill for the secondary prevention of stroke: a qualitative interview study.

Two-dimensional electrophoretic analysis of proteins synthesized during the early cleavage period in rabbit embryos.

Outstanding Symptoms of Poststroke Depression during the Acute Phase of Stroke.

Efficacy of Cognitive Rehabilitation Therapy on Poststroke Depression among Survivors of First Stroke Attack in Ibadan, Nigeria.

Predictors of poststroke health-related quality of life in Nigerian stroke survivors: a 1-year follow-up study.

Telephone-based problem-solving intervention for family caregivers of stroke survivors: a randomized controlled trial.

Potential benefits for caregivers of stroke survivors receiving BTX-A and exercise for upper extremity spasticity.