Home > RNJ > 2009 > July/August > Comparing Perceived Burden for Korean and American Informal Caregivers of Stroke Survivors

Comparing Perceived Burden for Korean and American Informal Caregivers of Stroke Survivors
Smi Choi-Kwon, PhD RN Pamela H. Mitchell, PhD RN FAAN FAHA Richard Veith, MD Linda Teri, PhD Ann Buzaitis, MN ARNP Kevin C. Cain, PhD Kyra J. Becker, MD David Tirschwell, MD MPH Michael Fruin, MN ARNP Jimi Choi, RN Jong S. Kim, MD

Little is known about the burden of cross-cultural care for stroke patients. This article compares the perceived burden for caregivers of stroke survivors in Korea and the United States. A brief interview was conducted to determine specific problem areas for caregivers. Caregiver burden (using the Sense of Competence Questionnaire) and social support (using the ENRICHD Social Support Inventory) also were measured. The overall-sense-of-burden-from-caregiving score was significantly higher in the Korean cohort than in the American cohort, as was the scale regarding satisfaction with the relationship with the recipient of care. The primary predictors of overall burden for the combined sample were caregiver and patient depression and insufficient social support. Lower perceived social support among Korean caregivers was strongly related to caregiver depression, while it was more strongly related to increased hours of caregiving in the American sample. These findings can help rehabilitation nurses plan supportive interventions that incorporate cultural values for stroke survivors and their caregivers.

Caring for stroke survivors can be burdensome for their informal caregivers, with additional burden perceived when caring for stroke survivors with emotional problems (Choi-Kwon, Kim, Kwon, & Kim, 2005; Clark, 2006; Clark, Dunbar, Aycock, Courtney, & Wolf, 2006; Han & Haley, 1999; Pierce, Steiner, Hicks, & Holzaepfel, 2006). Although there is extensive literature evaluating caregiver burden and benefit in stroke patients (Mant, Winner, Roche, & Wade, 2005; McCullagh, Brigstocke, Donaldson, & Kalra, 2005; Morimoto, Schreiner, & Asano, 2003; Tooth, Mckenna, Barnett, Prescott, & Murphy, 2005; van Exel, Koopmanschap, van den Berg, Brouwer, & van den Bos, 2005), there has been little comparison of informal caregiver burden across cultures for any chronic condition.

The degree to which caregiver work is perceived as a burden may differ among societies and cultures depending on cultural ideas of familism and individualism (Morimoto et al., 2003; Youn, Knight, Jeong, & Benton, 1999). In Korea, Confucian ideology places the eldest male at the head of the family, receiving loyalty from his offspring. In addition, societal supports such as nursing homes or therapeutic day care for people with chronic illness generally are less available in Korea than in the United States (Grant, Bartolucci, Elliot, & Giger, 2000). Consequently, care for a chronic illness such as stroke in an elderly family member may exert a considerable amount of burden on female caregivers, particularly daughters-in-law (Choi-Kwon, Kim, et al., 2005). In Western countries, on the other hand, individualism predominates. Caregivers in Seattle, WA, where Western European-American culture dominates, may feel loss of time and privacy more burdensome than caregivers in Seoul.

The effect of ethnicity and culture on the caregiving experience has most commonly been measured among caregivers of people with dementia of the Alzheimer’s type, usually within a given culture rather than cross-culturally. Youn and colleagues (1999) compared Korean, Korean-American, and White-American informal caregivers of people with dementia in terms of familism and caregiver burden. They found that familism was highest in Korean caregivers and lowest among White Americans, with Korean Americans in the middle. Contrary to their hypothesis, perceived caregiver burden was highest among Koreans and Korean Americans, with Korean caregivers reporting higher levels of depression and anxiety than other groups. No comparable studies were found with respect to cross-cultural comparisons of caregivers of stroke survivors.

Because our two research groups used common measures of caregiver burden for depressed stroke survivors residing in Korea and the United States, we had the opportunity to compare factors related to caregiver burden in two cultures. The parent studies did not have a common conceptual framework, but an identical analytic framework was used for the comparison to assess perceived burden for partners of community-dwelling stroke survivors (Scholte op Reimer, de Haan, Rijnders, Limburg, & van den Bos, 1998).

Social support was an inferred but unmeasured component of the Sense of Competence Questionnaire (SCQ) framework. Social support may be a buffering factor in increasing a stroke caregiver’s emotional well-being and moderating the depression that often is seen after life-changing illness of significant others (Egbert, Koch, Coeling, & Ayers, 2006; Glass, Matchar, Belyea, & Feussner, 1993; Grant et al., 2000; Hong et al., 2000; Mant et al., 2005; Sit, Wong, Clinton, Li, & Fong, 2004; Yoon, Cha, & Cho, 2000; Youn et al., 1999). The literature cited reflects work that has been conducted on social support and its relation to caregiver burden in stroke survivors; however, we did not locate any studies that compared social support for caregivers of stroke survivors in Western and Asian countries. To meet this need, we conducted independent studies in Korea and the United States on emotional distress among urban stroke survivors and their caregivers. Each study used the same instruments to measure caregiver burden and social support. These studies provided an opportunity to explore the relationships among several variables regarding social support and caregiver burden for stroke survivors that are known to influence caregiver burden in Western cultures.

Study Purpose

The purpose of this study was to compare the perceived burden of Korean and American informal caregivers of ischemic stroke survivors and to identify factors affecting caregiver burden in different cultures.


This was a descriptive comparative design using baseline data from two independent studies of treatment of stroke survivors with emotional distress.


Participants who provided data for this analysis were enrolled in primary studies in Seattle and in Seoul, Korea. The Seattle participants included 33 ischemic stroke survivors and their caregivers who were enrolled in a study of poststroke depression (PSD) between December 2002 and October 2005.

Participants from Seattle were stroke patients with clinical depression (as measured by the Diagnostic Interview and Structured and Hamilton (DISH; Freedland et al., 2002) who were enrolled in the parent study, a randomized trial of a behavioral intervention. At the baseline period, after randomization but before intervention (4 months poststroke), partners, defined as the person who lives with the stroke survivor and has primary responsibility to help with their care, were given questionnaires to measure the impact of stroke caregiving.

Participants from Seoul were enrolled between December 2003 and August 2004. Stroke survivors who attended the outpatient clinic at a large academic medical center were interviewed for the presence of PSD. The interview was performed an average of 14 months after the onset of stroke by one of researchers. Forty-one patients and caregivers agreed to participate, and these pairs are included in this analysis. Eligible caregivers were defined in the Seoul sample as above. The primary outcomes of the clinical trial have been reported (Choi-Kwon, Han, Kwon, Kang, Choi, & Kim, 2006), but data used in this analysis have not been previously published.

Ethical Considerations

Each parent study was approved by the respective institutional review board in accordance with Helsinki principles and included authority to release nonidentifiable data for secondary analyses. All enrolled patients and caregivers provided informed consent.


Data Collection Instruments and Procedure

Both sites collected data from stroke survivors and informal caregivers upon entry to the parent treatment trial. Data were collected with structured questionnaires and structured interviews performed by trained research nurses whose interviewing consistency was overseen by the project coordinator and principal investigator in each research group. Data collection occurred an average of 14 months after the onset of stroke in the Korean population, and within 4 months after stroke in the U.S. group. Data collection occurred before any interventions in both studies so results could not be influenced by differing treatments in the main studies. We compared the Seattle cohort caregiver burden scores for entry and 12 months following stroke and found no statistically significant difference. We then elected to use entry scores to maximize numbers and avoid any potential confounding by intervention effects.

To avoid any possibility that the presence of patients might influence caregivers to modify their responses regarding burden, caregivers’ perceived burden was assessed in the absence of patients after the patients’ information was obtained (Choi-Kwon, Kim, et al., 2005).

Stroke Survivor Data

Clinical and functional data about stroke survivors included age, gender, and other demographic data; history of stroke; depression; and other comorbidities including impairment in functional ability (as measured by the NIH Stroke Scale and Barthel Index). Current employment status after stroke also was recorded.

Informal Caregiver Demographic and Caregiving Data

A primary informal caregiver was defined in both samples as “a person who lives with the patient and is most closely involved in taking care of him/her at home” (Choi-Kwon, Kim, et al., 2005). Demographic data regarding the primary caregiver and information regarding the presence of an alternative caregiver, hours of care per day, the most challenging tasks performed for the patient, the relationship of the caregiver to patients, and self-rated global health status of the caregiver before and after the patient’s stroke were obtained using the same structured interview in both studies.

Social Support for Caregivers

Social support for caregivers in both studies was assessed using the ENRICHD Social Support Instrument (ESSI), which features six items with scores of 1–5, plus an item regarding marital status. This instrument measures structural, instrumental, and emotional support, but not social networks. The score ranges from 8 to 34, with higher scores indicating greater social support. Cronbach alpha (internal consistency) was 0.86 for the developmental sample. There was good evidence for convergent validity, with another tool measuring emotional support and divergent validity with instruments measuring structural support (Mitchell et al., 2003). Internal consistency was acceptable in this study’s combined sample (standardized Cronbach alpha = 0.86).

Caregiver Burden

Although many instruments are used to assess caregiver burden and benefits, few have been used frequently or in cross-cultural comparisons (Visser-Meily, Post, Riphagen, & Lindeman, 2004). We used English and Korean translations of the Sense of Competence Questionnaire (SCQ; Choi-Kwon, Kim, et al., 2005; Scholte op Reimer, de Haan, Pijnenborg, Limburg, & van den Bus, 1998). The SCQ provides subscale and overall scores for perceived burden and benefit in three subdomains with a total of 27 items, each on a four-point scale. Subdomain 1 has seven items indicating satisfaction with the impaired person as a recipient of care; subdomain 2 has 12 items indicating satisfaction with one’s own performance as a caregiver, and subdomain 3 has eight items indicating consequences of involvement in care for the personal life of the caregiver. The overall scores for the total and subdomains were represented as the mean of each score, ranging from 1 to 4; the higher the score, the higher the burden. The instrument was selected because the relative contributions of both patients’ and caregivers’ characteristics to the burden of caregiving are included, and because it has been tested specifically with stroke survivors and their partners. Reliability of the total SCQ score in the development studies was excellent (Cronbach alpha coefficient = 0.83; intraclass correlation coefficient = 0.93). Construct validity was supported by principal-components analysis and clinical validity was supported by significant association between higher SCQ burden scores and the patients’ impaired functional health, cognitive function, disability, handicap, and quality of life (Scholte op Reimer, de Haan, Pijnenborg, et al., 1998; van Exel et al., 2004). To our knowledge, this is the first cross-cultural comparison with this instrument.

Caregiver/Partner Mood

In the Seattle sample, depressive mood was evaluated with the Geriatric Depression Scale (GDS) in both stroke survivors and caregivers (Brink et al., 1982; Brink, 1989; Yesavage et al., 1982). The GDS is a 30-item scale in a yes/no format, which typically takes approximately 10 minutes to complete. Scores of 0–10 indicate normal mood; 11–20 indicates mild or moderate depression; and 21–30 indicates severe depression. The original scale had high internal consistency (Cronbach alpha = 0.94), with a score of 11 or more providing best sensitivity and specificity for differentiating those with and without clinical depression symptoms (Brink et al.; Yesavage et al.). For analytic purposes, caregivers who scored higher than 11 on the GDS were classified as depressed. Stroke survivors who scored 11 or higher were further evaluated with Diagnostic and Statistical Manual, 4th edition (DSM IV) criteria to enter the parent study on treatment for PSD; consequently, the Seattle informal caregivers in this analysis were partnered with a stroke survivor who met DSM IV criteria for clinical depression.

The Hospital Anxiety and Depression (HAD) Scale was used to assess the Seoul caregivers (Zigmond & Snaith, 1983). This scale consists of 14 items (seven for anxiety and seven for depression), each measured on a 4-point scale. Internal consistency averages 0.83 for the anxiety scale and 0.82 for the depression scale, averaged over 747 studies using this instrument. The best sensitivity and specificity for identifying “caseness” for both anxiety and depression was at a cut score of 8 (Bjelland, Dahl, Haug, & Neckelmann, 2002). For the Seoul sample, depression or anxiety was considered to be present if the caregivers had a score higher than 10 in depression or in anxiety inventory, respectively. Scores between 8 and 10 were considered borderline. For analytic purposes, patients with scores of 8 or higher were categorized as having depression/anxiety. Among Korean stroke survivors, PSD was considered to be present when either the DSM IV criteria or a Beck Depression Inventory (BDI) score higher than 13 was met (Choi-Kwon, Choi, Kwon, Kang, & Kim, 2006; Choi-Kwon, Han, et al., 2006).


Data from the two studies were merged into an SPSS data file. All Korean responses were represented in English, with any ambiguous translations verified by the Korean principal investigator. Responses were described by group using percentages, means, and standard deviations. Group mean scores on the burden instrument were compared with ANOVA, with Tukey post-hoc comparison. Predictors of burden were analyzed with multiple linear regression.


Characteristics of Stroke Survivors and Caregivers

Participants included 41 stroke survivor/informal caregiver pairs from Korea and 33 pairs from the United States. Among the stroke survivors from Korea, 12 were classified as depressed and 29 were not. The stroke survivors from the United States were all depressed because this was a criterion for entry into the Seattle study.

As shown in Table 1, the characteristics of stroke survivors among the three groups were similar except for marital status (Seattle participants were more likely to be divorced or single), years of education (Seattle participants were more highly educated), employment status (Seoul participants were more likely to be employed), the presence of diabetes mellitus (which was higher in Seattle), and Barthel Index of Current Disability score (disability was lower in Seoul). The mean age of the both stroke survivors and caregivers ranged between 52 and 61. The majority of stroke survivors at both sites were men, while caregivers predominantly were women.

Table 1

Caregiver characteristics are shown in Table 2. The caregivers in the Seattle depressed stroke survivor group were more educated than the Korean caregivers. The caregivers in Seoul’s not-depressed stroke survivors group more often were employed than those of depressed stroke survivors in Seoul and Seattle. Korean caregivers were more likely than Seattle caregivers to say their health had deteriorated from excellent or good to fair after the patient’s stroke. Caregivers in Seoul were more often classified as depressed (more than 50% versus 37%), had lower ESSI mean scores (17–19 versus 22), were less likely to provide more than 15 hours of caregiving per day (14%–17% versus 23%), and had a higher mean burden score (2.8 versus 2.3) compared to caregivers of Seattle depressed stroke survivors.

Table 2

Caregiver Burden

Mean overall burden scores for informal caregivers of Seoul’s depressed and not-depressed survivors and Seattle’s depressed stroke survivors, respectively, are shown in Table 3. Mean total burden score differed significantly among the groups (p = 0.009), with Seattle group scores significantly lower than either Korean caregiver group (Tukey post-hoc test, p < .01). In addition, both Korean caregiver groups had significantly higher burden scores in the subscale regarding satisfaction with relationship with the recipient of care than did the Seattle group (Tukey post-hoc test p < .01). The scores for each item are shown in Table 4.

Table 3

Table 4

The Most Challenging Aspects of Care

For both Seattle and Seoul caregivers, dealing with patients’ anger and mood were the most challenging aspects of caring for patients with depression (Table 5). Informal caregivers in Seoul more often felt they had higher economic burden and more worry about the patient’s illness than did their counterparts in Seattle. No Seattle caregivers reported challenges in dealing with the patients’ fatigue, while this was reported as most challenging by Seoul caregivers of patients who were depressed and not depressed. It is notable that only two Seoul caregivers of patients with depression reported no “most challenging things,” while this category accounted for the largest proportion of Seattle caregivers.

Table 5

Factors Related to Caregiver Burden and Depression

To understand the contributions of patient and caregiver factors in determining perceived caregiver burden, we performed multiple regression analysis, choosing variables from our dataset known to be related to burden in the literature. Univariate relationships for each cohort that were statistically significant include the following: In Seoul, the higher the level of caregiver education, the lower the overall burden score (r = -0.34, p < .05), while in Seattle this association was more modest and nonsignificant (r = 0.27). Less social support in Seoul was strongly associated with caregivers being depressed (r = -0.62, p < 0.01, N = 41), whereas lower social support in Seattle was moderately related to increased hours of caregiving (r = -0.48, p < 0.05, N = 33) and higher social support was associated with increased caregiver age (r = 0.39, p < .05). In Seattle, the higher the number of caregiving hours, the higher the total burden score (r = 0.51, p < .01) and the more likely the caregiver was to be depressed (r = 0.31, p < .05). In Seoul, hours of caregiving were strongly related to greater patient disability (r = -0.75, p < .01), accounted for by the small number of Korean stroke survivors who still had significant motor disability at 14 months after stroke. Social support for caregivers of Korean patients with depression was significantly lower in Korea than in Seattle (t = 1.82, df 43, p = 0.08).

The best multivariate model explained approximately 39% of the variance in total burden score and included measures of hours of caregiving, caregiver social support, caregiver age, caregiver education, patient disability, patient depression, caregiver depression, and location (Seattle or Seoul; R = 0.68, R2 = 0.46, adjusted R2 = 0.39, R2 change = 0.46, F change 6.49, df 8, 62, p = < .0001)


This is the first comparison across Korean and U.S. cultures of burdens for urban informal caregivers of stroke survivors with emotional dysfunction. Although patients’ negative emotion has been related to caregiver burden (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002; Choi-Kwon, Kim, et al., 2005; Clark et al., 2006), Seoul caregivers reported higher burden than Seattle caregivers regardless of the presence of patient depression. These differences were largest in the overall score and in the subscale measuring satisfaction with relationships with a stroke survivor. Caregiver depression in Korea was strongly associated with a lower level of perceived social support. Since these data were collected before treatment began in both groups, we do not believe treatments for depression could have played a role in these findings. Due to the rapid industrialization of Korea during the past few decades, we suspect family-based support is not as strong as it once was. It also is possible that Korean families have yet to develop support networks outside their families as evidenced by low social support for Korean caregivers—a finding that is in agreement with a previous study (Sung, 2001). According to Cattell’s (2001) typology of support networks, which was developed as a way to describe networks, associated norms, and values of residents including cultural issues, it appears the Korean social support network is in a transitional state. It is moving from either homogeneous or traditional networks to heterogeneous or solidarity models. The tie to the extended family for support has lost some of its essential features, yet informal or formal organizations such as self-help groups for caregivers and daycare centers for patients and caregivers offered by the community are just beginning to emerge (Hong et al., 2000; Yoon et al., 2000). A great need for support groups also has been reported (Park, Yu, & Song, 1999). Because we do not have direct data about social networks in the Seoul or Seattle groups, we can only speculate about support transitions.

Consistent with previous notions of an American culture that emphasizes individualism (Youn et al., 1999), caregivers in Seattle perceived loss of time for self and loss of privacy as more challenging than caregivers in Seoul. This was evidenced by a relatively high score (3.8) on the item have enough time for myself. Although these caregivers’ responses may have reflected the acute stage of the disease process, the concept of an independent and individualized self is congruent with Western European-American-dominant culture (Landrine & Klonoff, 1992). Further, these findings were consistent with Youn and colleagues’ finding of Korean and U.S. caregivers’ sense of burden in relation to traditional familism and independence in caring for people with dementia (Youn et al., 1999).

The overall and subscale burden scores in this study are similar to those seen in another sample of stroke caregivers in Choi-Kwon’s earlier work (Choi-Kwon, Kim, et al., 2005). However, scores in both the Seattle and Korean samples are higher than scores reported by the developers of the SCQ. That sample consisted of 166 partners of stroke survivors interviewed in their homes in the Netherlands within 6 months of the initial stroke (Scholte op Reimer et al., 1998). The scores we report are more similar to those seen in a later Netherlands study developing the SCQ (van Exel et al., 2004). The differences between our study and earlier studies may be accounted for by differing severity of stroke among the samples, different time frames, or differing cultures.

Choi-Kwon’s previous work has shown poststroke fatigue to be a common sequela of stroke, occurring in 40%–57% of patients (Choi-Kwon, Choi, et al., 2006; Choi-Kwon, Han, Kwon, & Kim, 2005). It was interesting to note fatigue was cited as a challenge by only a relatively small percentage of Korean caregivers and none of the U.S. caregivers. One would not expect a cultural difference in either the incidence or challenge of fatigue. Rather, the difference may reflect the different point at which stroke survivors were in their recovery. The degree to which fatigue poses challenging problems for informal caregivers indicates that this variable should be routinely recorded in studies of stroke recovery.

Seoul-based caregivers were more likely to report depressive symptoms above the specific scale score, cutoff for more clinical depression than their Seattle counterparts. It is possible that a high level of emotional distress may be general among Koreans and not limited to caregivers. Previously, Choi-Kwon and colleagues reported that Korean caregivers often are depressed and anxious, and these were the factors influencing the caregiver burden (Choi-Kwon, Kim, et al., 2005). Although caregiver burden among stroke patients has not been studied cross-culturally, a previous study of caregivers of elderly people with dementia found that Korean and Korean-American caregivers had higher levels of burden, depression, and anxiety than White Americans (Youn et al., 1999). Another cross-cultural study of caregivers of people with dementia found depression was higher in Korean and Korean-American wives than in White-American wives or daughters (Lee & Farran, 2004). The absence of a noncaregiver comparison group in the current study, however, leaves open the possibility that results reflected general ethnic or cross-national differences rather than ethnicity and caregiving interactions. An alternative explanation might be the lack of social support available to Korean caregivers compared to counterparts in Seattle who perceived a higher level of social support. This is consistent with a previous finding that Korean caregivers expressed a lack of socioemotional support and social acknowledgement, which increased feelings of entrapment and depression (Chun, Knight, & Youn, 2007). It also is possible that nursing homes and daycare centers for stroke patients are less available in Korea than in the United States, and that Korean caregivers may be depressed more often and have higher levels of burden (Choi-Kwon, Kim, et al., 2005).

Our study has several limitations that should be considered in interpreting the findings. First, caregiver burden was assessed at different time points (Seoul averaging 14 months after stroke, Seattle within 4 months). We may have overestimated caregiver burden in the Seoul patient group because data were collected during chronic stages when emotional burden may have been high. Overestimation is less likely, however, because we previously reported that the mean overall burden score 3 years poststroke was 2.3, which was lower than in the present study (Choi-Kwon, Kim, et al., 2005). Furthermore, when we compared the SCQ means and sums on the Seattle group at the 4-month and 12-month follow ups, the Seattle caregivers were a little more burdened with respect to satisfaction with their own performance, but no statistical differences were found between two different follow ups.

Second, we excluded patients who had severe communication problems and cognitive dysfunction. Because cognitive dysfunction and aphasia have been reported as factors affecting caregiver burden (Thommessen, Wyller, Bautz-Holter, & Laake, 2001), we might have underestimated caregiver burden in all groups. We also have a small sample size from two urban populations that may not be generalizable to other regions of each country.

Third, the interviews were carried out by trained research nurses in each country with the use of structured questionnaires. Although interviewing consistency was overseen by the project coordinator and principal investigator in each research group, unwanted bias may have been inadvertently introduced during interviews.

Finally, it is important to note that patients and caregivers in the Korean sample were classified as “depressed” on the basis of describing prominent depressive symptoms, whereas diagnostic criteria for major depression were employed in addition to symptom ratings in the Seattle sample. It is possible that some patient participants in the Korean sample were classified as “depressed” when their depressive symptoms might not have qualified for a diagnosis of major depression using DSM-IV criteria. Patients and caregivers from the Seattle sample who were classified as depressed might have had more intense or severe symptoms than subjects from the Seoul sample. If this were true, study findings indicating a higher level of caregiver burden in the Korean sample are even more impressive.


Despite the limitations of our study, it confirms for stroke survivors’ informal caregivers what has been previously found in cross-cultural studies of caregiving in dementia. Caregiver burden is higher in the urban Korean caregiver group than in the urban U.S. caregiver group, particularly in the area of satisfaction with relationships, and this possibly is related to lower perceived social supports.

Implications for Practice

Rehabilitation nurses worldwide are increasingly becoming involved in supporting family caregivers in the community. These findings support the need for nurses and other health professionals to assess family caregiver burden, emotional status, and available supports based on cultural background. The findings also suggest that strategies to assist caregivers should be developed differently for urban caregivers in the United States and Korea. A prominent potential strategy for the Seattle group would be to help caregivers increase privacy and time for themselves. For the Seoul caregivers, the data suggest a need for integrated extended family support systems to provide additional resources for caregivers facing distress. Elderly Koreans could be supported by church and community organizations and have more flexible support from kin. Although interventions for PSD now are being reported, little research has been conducted that would help caregivers reduce their caregiver burden related to depressed stroke survivors. Our data suggest that cultural factors should be included in the design and application of such research.

About the Authors

Smi Choi-Kwon, PhD RN, is a professor at the College of Nursing & Research Institute of Nursing Science at Seoul National University in Seoul, Korea.

Pamela H. Mitchell, PhD RN FAAN FAHA, is a professor and associate dean for research at the University of Washington, School of Nursing in Washington in Seattle, WA.

Richard Veith, MD, is a professor and chair of the department of psychiatry and behavioral science at the University of Washington, Seattle, WA.

Linda Teri, PhD, is a professor in the department of psychosocial and community health at the University of Washington in Seattle, WA.

Ann Buzaitis, MN ARNP, is a research nurse supervisor of the department of biobehavioral nursing and health systems at the University of Washington, Seattle, WA.

Kevin C. Cain, PhD, is a research scientist in the department of biostatistics and office for nursing research at the University of Washington, Seattle, WA.

Kyra J. Becker, MD, is a professor of neurology at the University of Washington in Seattle, WA.

David Tirschwell, MD MPH, is an associate professor of neurology at the University of Washington, Seattle, WA.

Michael Fruin, MN ARNP, is on the clinical faculty of the department of biobehavioral nursing and health systems at the University of Washington, Seattle, WA.

Jimi Choi, RN, is a graduate student at the College of Nursing, Seoul National University, Seoul, South Korea.

Jong S. Kim, MD, is a professor in the department of neurology at the University of Ulsan, Asan Medical Center, Seoul, South Korea.


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.

Bjelland, I., Dahl, A. A., Haug, T. T., & Neckelmann, D. (2002). The validity of the Hospital Anxiety and Depression Scale. An updated literature review. Journal of Psychosomatic Research, 52(2), 69–77.

Brink, T. L. (1989). Proper scoring of the geriatric depression scale. Journal of the American Geriatric Society, 37(8), 819–820.

Brink, T. L., Yesavage, J. A., Lum, O., Heersema, P. H., Adey, M., & Rose, T. L. (1982). Screening tests for geriatric depression. Clinical Gerontology, 1, 37–43.

Cattell, V. (2001). Poor people, poor places, and poor health: The mediating role of social networks and social capital. Social Science & Medicine, 52(10), 1501–1516.

Choi-Kwon, S., Choi, J. M., Kwon, S. U., Kang, D. W., & Kim, J. S. (2006). Fluoxetine is not effective in the treatment of post-stroke fatigue: A double blind, placebo-controlled study. Cerebrovascular Disease, 23(2), 103–108.

Choi-Kwon, S., Han, S. W., Kwon, S. U., Kang, D. W., Choi, J. M., & Kim, J. S. (2006). Fluoxetine treatment in poststroke depression, emotional incontinence, and anger proneness: A double-blind, placebo-controlled study. Stroke, 37(1), 156–161.

Choi-Kwon, S., Han, S. W., Kwon, S. U., & Kim, J. S. (2005). Poststroke fatigue: Characteristics and related factors. Cerebrovascular Disease, 19(2), 84–90.

Choi-Kwon, S., Kim, H. S., Kwon, S. U., & Kim, J. S. (2005). Factors affecting the burden on caregivers of stroke survivors in South Korea. Archives of Physical Medicine & Rehabilitation, 86(5), 1043–1048.

Chun, M., Knight, B. G., & Youn, G. (2007). Differences in stress and coping models of emotional distress among Korean, Korean-American and White-American caregivers. Aging & Mental Health, 11(1), 20–29.

Clark P. C. (2006). Commentary. Rehabilitation Nursing, 31(4), 173

Clark, P. C., Dunbar S. B., Aycock, D. M., Courtney, E., & Wolf, S. L. (2006). Caregiver perspectives of memory and behavior changes in stroke survivors. Rehabilitation Nursing, 31(1), 26–32.

Egbert, N., Koch, L., Coeling, H., & Ayers, D. (2006). The role of social support in the family and community integration of right-hemisphere stroke survivors. Health Communication, 20(1), 45–55.

Freedland, K. E., Skala, J. A., Carney, R. M., Raczynski, J. M., Taylor, C. B., Mendes De Leon, C. F., et al. (2002). The Depression Interview and Structured Hamilton (DISH): Rationale, Development, Characteristics, and Clinical Validity. Psychosomatic Medicine, 64(6), 897–905.

Glass, T. A., Matchar, D. B., Belyea, M., & Feussner, J. R. (1993). Impact of social support on outcome in first stroke. Stroke, 24(1), 64–70.

Grant, J. S., Bartolucci, A. A., Elliot, T. R., & Giger, J. N. (2000). Sociodemographic, physical, and psychosocial characteristics of depressed and non-depressed family caregivers of stroke survivors. Brain Injury, 14(12), 1089–1100.

Han, B., & Haley, W. E. (1999). Family caregiving for patients with stroke. Review and analysis. Stroke, 30(7), 1478–1485.

Hong, Y. S., Suh, M. J., Kim, K. S., Kim, I. J., Cho, N. O., Choi, H. J., et al. (2000). Relations between perceived burden and social support of stroke patient’s family caregiver. Journal of Nurses Academic Society (Taehan Kanho Hakhoe Chi), 30(3), 595–605. [article in Korean]

Landrine, H., & Klonoff, E. A. (1992). Culture and health-related schemas: A review and proposal for interdisciplinary integration. Health Psychology, 11(4), 267–276.

Lee, E. E., & Farran, C. J. (2004). Depression among Korean, Korean American, and Caucasian American family caregivers. Journal of Transcultural Nursing, 15(1), 18–25.

Mant, J., Winner, S., Roche, J., & Wade, D. T. (2005). Family support for stroke: One year follow up of a randomised controlled trial. Journal of Neurology, Neurosurgery and Psychiatry, 76(7), 1006–1008.

McCullagh, E., Brigstocke, G., Donaldson, N., & Kalra, L. (2005). Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke, 36(10), 2181–2186.

Mitchell, P. H., Powell, L., Blumenthal, J., Norten, J., Ironson, G., Pitula, C. R., et al. (2003). A short social support measure for patients recovering from myocardial infarction: the ENRICHD Social Support Inventory. Journal of Cardiopulmonary Rehabililitation, 23(6), 398–403.

Morimoto, T., Schreiner, A. S., & Asano, H. (2003). Caregiver burden and health-related quality of life among Japanese stroke caregivers. Age and Aging, 32(2), 218–223.

Park, Y. H., Yu, S. J., & Song, M. S. (1999). Caregiver burden of families with stroke patients and their needs for support group intervention. Journal of Korean Academic Society of Adult Nursing (Sungin Kanho Hakhoe Chi), 11(1), 119–134.[article in Korean]

Pierce, L. L., Steiner, V., Hicks, B., & Holzaepfel, A. L. (2006). Problems of new caregivers of persons with stroke. Rehabilitation Nursing, 31(4), 166–172.

Scholte op Reimer, W. J. M., de Haan, R. J., Pijnenborg, J. M., Limburg, M., & van den Bos, G. A. M. (1998). Assessment of burden in partners of stroke patients with the sense of competence questionnaire. Stroke, 29(2), 373–379.

Scholte op Reimer, W. J. M., de Haan, R. J., Rijnders, P. T., Limburg, M., & van den Bos, G. A. M. (1998). The burden of caregiving in partners of long-term stroke survivors. Stroke, 29(8), 1605–1611.

Sit, J. W., Wong, T. K., Clinton, M., Li, L. S., & Fong, Y. M. (2004). Stroke care in the home: The impact of social support on the general health of family caregivers. Journal of Clinical Nursing, 13(7), 816–824.

Sung, K. T. (2001). Family support for the elderly in Korea: Continuity, change, future directions, and cross-cultural concerns. Journal of Aging & Social Policy, 12(4), 65–79.

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 Disease, 11(3), 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(12), 963–974.

van Exel, N. J., Koopmanschap, M. A., van den Berg, B., Brouwer, W. B., & van den Bos, G. A. (2005). Burden of informal caregiving for stroke patients: Identification of caregivers at risk of adverse health effects. Cerebrovascular Diseases, 19(1), 11–17.

van Exel, N. J., Scholte op Reimer, W. J., Brouwer, W. B., van den Berg, B., Koopmanschap, M. A., & van den Bos, G. A. (2004). Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: A comparison of CSI, CRA, SCQ and self-rated burden. Clinical Rehabilitation, 18(2), 203–214.

Visser-Meily, J. M., Post, M. W., Riphagen, II, & Lindeman, E. (2004). Measures used to assess burden among caregivers of stroke patients: A review. Clinical Rehabilitation, 18(6), 601–623.

Yesavage, J. A., Brink, T. L., Rose, T. L., Lum, O., Huang, V., Adey, M., et al. (1982). Development and validation of a geriatric depression screening scale: A preliminary report. Journal of Psychiatric Research, 17(1), 37–49.

Yoon, H., Cha, H., & Cho, S. (2000). The impact of social support on the family caregivers’ burden and depression. Journal of the Korea Gerontological Society (Hankook noyeon Hak), 20(1), 1–19.[article in Korean]

Youn, G., Knight, B. G., Jeong, H. S., & Benton, D. (1999). Differences in familism values and caregiving outcomes among Korean, Korean American, and white American dementia caregivers. Psychology & Aging, 14(3), 355–364.

Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361–370.