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Caregiver Strain and Caregiver Burden of Primary Caregivers of Stroke Survivors with and Without Aphasia
Little is known about how the burden and strain of caring for stroke patients with or without aphasia affects primary caregivers. This article (a) critically examines the literature on the burden and strain of care experienced by caregivers of stroke patients and (b) examines the relationship between aphasia and caregiver burden and strain. Two literature reviews of three databases were conducted. Fourteen articles (12 quantitative articles, 1 mixed-design article, and 1 qualitative article) were found to comply with the study criteria for the first literature search. A second literature search focused on the effects of stroke survivors’ aphasia on caregiving; none of the articles retrieved met the inclusion criteria. This article suggests that there is a lack of research in this area and that several key initiatives are needed, including the development of an instrument with psychometric properties appropriate for assessing the burden and strain on caregivers of stroke patients. Implications for future nursing practice and research are highlighted.
Background and Clinical Significance
Stroke is a sudden injury to a part of the brain caused by an interruption in its blood supply. According to the American Heart Association (AHA; 2004), approximately 700,000 individuals will experience a new or recurrent stroke in the United States (500,000 of these strokes will be first attacks and 200,000 will be recurrent attacks). Stroke is the third largest cause of death in America, ranking behind heart disease and all forms of cancer (AHA). According to the November 2004 report titled “Impact of Stroke,” the number of American adults living with the effects of stroke each year is estimated to be 4.8 million. In 2004 the estimated direct and indirect cost of a stroke was $368.4 billion (AHA).
Despite advances in treatment and care, stroke remains a devastating disease for patients and their families. Stroke survivors often suffer from various degrees of permanent disability and sustain impairments that significantly affect their personal, familial, and social well-being. Due to its sudden and unpredictable onset, a stroke often leaves stroke survivors and their caregivers unprepared to deal with its impact on daily life. Often the caregiver and stroke survivor experience fear, anxiety, and worry about failing health and the possibility of stroke recurrence or death. Caring for a family member in the home can therefore be a burden. Supporting the primary caregiver is a critical aspect of rehabilitating the stroke survivor and reintegrating him or her into the community. Hence, successful rehabilitation requires an environment that facilitates caregivers achievement of their goals.
The ability to communicate is central to the rehabilitation process and reintegration of stroke survivors back into their community (Kaplan, Cailliet, & Kaplan, 2003). Aphasia is a multimodal disorder resulting from brain damage that affects the stroke survivor’s ability to process linguistic input and produce language, while leaving other intellectual abilities intact (Davis, 1997; Wertz, 1990). The AHCPR Post-Stroke Rehabilitation Clinical Practice Guidelines (2003) defines aphasia as the “loss of ability to communicate orally, through signs, or in writing, or the inability to understand such communications; the loss of language usage ability.” Similarly, Darley (1982) notes that aphasia is generally described as an impairment of language that results from focal brain damage to the language-dominant cerebral hemisphere. Aphasia is thus distinguished from language and cognitive-communication disorders associated with damage to the non-language hemisphere, such as dementia and traumatic brain injury (Orange & Kertesz, 1998). Aphasia affects an estimated 23%–33% of stroke survivors (Aminoff, 2001; Millette-Petit, 2001) with the great majority suffering left hemispheric lesions, although patients may occasionally also have language dominance in the right hemisphere (Zaidat & Lerner, 1995). The loss or impairment of the ability to communicate is typically devastating and frustrating to both the stroke survivor and his or her primary caregiver and can result in fear, feelings of hopelessness, and depression (Hickey, 2001). In addition to helping the stroke survivor adapt to his or her immobility, the caregiver often assumes added responsibility for interpreting non-verbal cues and communicating on behalf of the stroke survivor.
A recent document by Teasell, Doherty, Speechley, Foley, and Bhogal (2002) titled “Evidence-based Review of Stroke Rehabilitation” prepared for the Ministry of Health and Long-Term Care and the Heart and Stroke Foundation of Ontario showed that little is known about the effects of aphasia on the stroke survivor and his or her primary caregiver in the home environment.
Study Identification and Selection
A comprehensive review of three electronic databases—Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature On-line (MEDLINE), and Psychology Information (PsycINFO)—was conducted to identify all published peer-reviewed literature to examine the association between primary caregivers’ burden or strain, and caring for stroke survivors with or without aphasia. Dates of the literature searches included CINAHL 1982 to November 2004, MEDLINE 1966 to October 2004, and PsycINFO from 1967 to October 2004. The first search included the key words stroke OR cerebrovascular accident OR cerebral vascular accident poststroke/post-stroke and the combined more general key words caregiver OR caregiving AND burden OR strain. The second search included the key words stroke OR cerebrovascular accident OR cerebral vascular accident OR poststroke/post-stroke and the combined general key words caregiver OR caregiving AND burden OR strain AND aphasia OR aphasic OR speech OR communication (see Figure 1). Exclusion criteria were editorials, letters, non-English articles, and non-peer reviewed.
Articles identified in the CINAHL, MEDLINE, and PsycINFO literature searches were included if the purpose of the study was to research the influence of caring for stroke patients with or without aphasia on caregiver burden and/or strain. Studies that included non-stroke patients were excluded. Although caregivers of stroke and dementia patients face some of the same challenges (such as patients’ cognitive impairment, communication difficulties, and behavioral problems), the impact of a stroke is more sudden and dramatic than the impact of dementia. Unlike the caregivers of patients with dementia who may have had time to adapt to their patients’ deterioration, caregivers of stroke patients may have little time to adjust to the significant shift in circumstances. Literature found on caregivers for cancer and HIV patients was excluded, because these caregivers experience unique issues that would not be relevant to caregivers of stroke patients.
A single reviewer recorded data from the selected studies in data abstraction tables. Information recorded included article sources, characteristics of caregivers (including sample population), study design, variables examined, demographic data, research findings, and identification of caregiver strain and burden measurement tools.
Based on searches using CINAHL, MEDLINE, and PsycINFO, the first literature review identified 14 relevant articles. One hundred and fifty-eight articles were originally retrieved, and 14 were determined to meet the inclusion criteria based on a screening of the abstracts, or, if necessary, whole articles. These articles included 12 quantitative articles, 1 mixed-design, and 1 qualitative article. The second literature search yielded 15 articles, none of which met the inclusion criteria for aphasia.
Characteristics of Selected Studies
Table 1 shows the characteristics of the caregiver samples for each of the studies. Of the 14 studies, five were carried out in the United States, four were conducted in Asia (three in Taiwan and one in Japan), three were carried out in the United Kingdom, and two were conducted in the Netherlands. Variability in ethnic origin may have had an impact on the study findings.
Table 2 provides a summary of investigations that examined the strain and burden on primary caregivers on stroke survivors. The number of caregivers included in the fourteen studies (12 quantitative, 1 mixed-design, and 1 qualitative) ranged from 22 to 222, resulting in a total of 1,471 caregivers. The characteristics of the caregivers differed among the studies. In 10 of the 14 studies, the majority of the caregivers were female (67%–92.3%). Eight of these indicated that the spouse did the majority of the caregiving (62%–100%). For all of the studies combined, the age of the caregivers ranged from 18 years to 91 years with a mean age of 60.59 years. With respect to the severity of stroke, the study populations were heterogeneous.
The characteristics of the caregivers in the Jeng-Ru, Hills, Kaplan, and Johnson (1998) study varied greatly from the above-mentioned studies: 49% of the caregivers were male, 57% were children and the mean age of the caregivers was 47.2 years. The investigators concluded that the large percentage of male caregivers may have been due to the males’ perception of themselves as the primary caregiver, even though they actually did not provide much care for the patients.
Demographic data of the caregivers, such as their employment status and educational background varied among the studies. For example, 54.5% of the primary caregivers in the Tang and Chen (2002) study were unemployed and retired, whereas all of the caregivers in the Kao and McHugh (2004) study were employed with female caregivers working an average of 25.19 hr/week and male caregivers working an average of 41.08 hr/week. Thirty-three percent of the caregivers in the Jeng-Ru et al. (1998) study had received education at an elementary level or below, while 43% of caregivers had received education at the junior high or high school level, 45% of the caregivers in the Printz-Feddersen study (1990) had completed 4 years of college and 13% had received some college or vocational training. This study demonstrated that advanced education and high income of caregivers, combined with moderate physical disabilities of the patients, were related to reduced feelings of caregiver burden.
The method of measuring caregiver strain or burden varied between the studies. Figure 2 summarizes the six different instruments that measure caregiver burden or strain as identified in the literature search: Caregiver Burden Scale–Chinese Version (CBS-CV, n = 1), Caregiver Reactions Assessment (CRA, n = 1), Caregiver Strain Index (CSI, n = 6), Physical Caregiving Responsibility Inventory (PCRI, n =1), Sense of Competence Questionnaire (SCQ, n = 1), and Zarit Burden Interview (ZBI, n = 3). One qualitative study utilized seven open-ended questions to assess caregiver strain or burden. Because the ZBI and the Burden Scale comprise the same measuring tool, the terms were often used interchangeably (Watson, Modeste, Catolico, & Crouch, 1998). Table 3 summarizes the operational definitions of caregiver strain or burden as defined in the instruments utilized in these studies.
The most commonly used scales were the CSI and the ZBI. Caregiver strain measures only objective burdens such as restriction of free time, family adjustments, changes in personal plans, and disturbance in sleep (Robinson, 1983). Caregiver burden, on the other hand, assesses both objective and subjective effects such as anxiety, work demands, tension, loss of privacy, and inability to engage in social activities (Hooyman, Gonyea, & Montgomery, 1985). The subjective effects of caregiver burden describe how caregivers feel about their roles. Both the CSI and the ZBI are designed to measure caregiver workload and psychological responses. These instruments contain several duplicate items and have been used simultaneously in other studies to ensure comprehensive assessment of the caregiver’s response (van Exel et al., 2004). It is not clear, however, whether these instruments, used individually, are fully sensitive to the needs of caregivers. Without a comprehensive and valid instrument that addresses the full impact of aphasic stroke patients on their caregivers, it may be impossible to compare studies.
Two studies that used the CSI observed no significant differences between male and female spouses in level of strain (Blake & Lincoln, 2000; Blake, Lincoln, & Clark, 2003). Four articles clearly demonstrated that female caregivers, especially wives, had significantly higher perceived burden than male caregivers (Jeng-Ru et al., 1998; Kao & McHugh, 2004; Morimoto, Schreiner, & Asano, 2003; van den Heuvel, 2001). Five studies cited a significant association between poor health of caregivers and increased caregiver burden or strain. One study was directed at caregivers with poor physical health (van den Heuvel et al., 2001); three studies identified caregivers with poor mental health who suffered from conditions such as depression and emotional distress (Macnamara, Gummow, Goka, & Gregg, 1990; Morimoto et al., 2003; Scholte op Reimer, de Haan, Rijnders, Limburg, & van den Bos, 1998); one study identified caregivers with poor perceived health (Tang & Chen, 2002); and one study identified caregivers with poor mental and physical health (Bugge, Alexander, & Hagan, 1999).
Two studies demonstrated that higher caregiver burden and strain were associated with increased stroke severity of patients (Bugge et al., 1999; van den Heuvel et al., 2001). One study cited a significant association between low self-esteem and caregiver burden (Blake & Lincoln, 2000), and one study demonstrated a relationship between caregiver burden and lack of social involvement (Hartke & King, 2002).
Although the second literature search yielded no articles that met the inclusion criteria for the relationship between caregiver strain or burden and caring for aphasic stroke survivors, the first search yielded an article by Scholte op Reimer et al. (1998) that identified 11% of caregivers’ patients were not communicative. This study did not clearly identify whether these patients were unable to communicate as a result of the stroke. None of the studies reviewed addressed differences in patients’ levels of independence, nor delineated the differences between mild, moderate, or severe aphasia and the relative effects on caregivers.
Johnson (1998) utilized a qualitative cross- sectional research design with seven open-ended questions, which demonstrated an association between caregiver burden and personal lifestyle changes. Although the author noted caregivers’ frustration and difficulties due to patients’ communication deficits, little information was provided about the meaning of the term non-communicative. The author also did not use an instrument to determine the presence or degree of speech deficit. Further, it is not known whether the communication barriers resulted from a stroke. Only one qualitative article was identified in this review that indicated a dearth of qualitative research examining the effect of aphasia on primary caregivers of stroke survivors.
Discussion and Implications for Nursing
Despite the increased interest in caregiver strain and burden experienced by primary caregivers of stroke survivors, the present literature review revealed only a few studies with this focus. Our review may not have been exhaustive, but we tried to identify as many studies as possible by utilizing several search approaches. Because research with statistically significant results is more likely to be published, our analysis was biased because it was limited to published studies.
The literature review revealed a number of inconsistencies in assessing sample size and demographics. For example, the study by Jeng-Ru et al. (1998) identified more male than female primary caregivers. The rationale for sample size was not provided in any of the studies. Nor did the authors report power analyses for sample sizes.
Some studies showed that caregivers’ burden and strain were associated with stroke severity, lower socioeconomic level, the caregivers’ health, amount of care hours required, and a smaller social network. More research is needed to elucidate the effects of these factors on the burden and strain experienced by the caregivers.
Caregiver strain and burden have been measured by a number of instruments (CBS-CV, CRA, CSI, PCRI, SCQ, and ZBI), which tend to vary somewhat in their intent. Together these instruments assess a broad range of problems—including psychological or emotional, financial, physical, and social—that the caregivers of stroke survivors may experience. In examining issues related to the instruments, it was found that there was no clear delineation between the tools utilized in the literature search. This may have hampered comparisons of the various studies that were reviewed. Further, the validity of these instruments has not been established. More studies that employ multiple instruments to measure caregiver burden and strain are therefore needed to cross-validate the findings. Moreover, we suggest that a universal or global instrument be developed and empirically evaluated so that more valid comparisons between studies can be made.
Our review revealed six different caregiver strain or caregiver burden scales, although other scales may have been missed because the key words strain or burden were not contained in the abstract. Another limiting factor was the lack of information provided about the caregiver samples. Few studies gave in-depth demographic details about their caregivers or revealed how they defined them. There may be several reasons for this. Traditionally, stroke research focuses on the stroke survivor and not the caregiver. The studies reviewed were conducted on participants from a range of cultures. This may also affect the generalizability of studies to a larger population.
This review of the literature suggests that caregiver burden and strain plays a major role in the recovery of stroke survivors in the community. A better understanding of how these concepts affect caregivers is fundamental for developing nursing interventions for rehabilitation programs for successful reintegration of stroke survivors back to their community. Various agencies, such as the Heart and Stroke Foundation in Canada, have begun to identify the need for rehabilitation programs and nursing interventions to focus on lessening the burden and strain experienced by caregivers of stroke survivors.
Before further research in this area is conducted, several key initiatives should be addressed. These include the following: development of a standardized measurement tool with appropriate psychometric properties that link the particular manifestation of aphasia to caregiver reactions, identification of a representative population source for research purposes, and employment of data triangulation studies that may yield a more insightful assessment of caregiver burden and caregiver strain. More research is needed, with each study employing a larger sample size, to study caregiver burden and caregiver strain of primary caregivers of stroke survivors with or without aphasia to close the existing gap in the literature. In addition, randomized, controlled, longitudinal, and interventional studies are needed to assess the relationship between caregiver burden and strain resulting from aphasia in stroke patients.
About the Authors
Rosemarié E. Rombough, MSc RN, is employed at the School of Nursing, Queen’s University, 92 Barrie Street, Kingston, ON, Canada, K7L3N6.
Ena L. Howse, PhD RN, is associate professor, School of Nursing, Queen’s University, 92 Barrie Street, Kingston, ON, Canada, K7L3N6.
Wally J. Bartfay, PhD RN, is associate professor and graduate program director, University of Ontario, Institute of Technology (UOIT), Faculty of Health Sciences, 2000 Simcoe Street North, Oshawa, ON, Canada, L1H7K4.
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