Outcomes Among Family Caregivers of Aphasic Versus Nonaphasic Stroke Survivors

Rehabilitation Nursing • Vol. 31, No. 1 • Jan/Feb 2006 33

Rehabilitation NURSING

Outcomes Among Family Caregivers of Aphasic Versus Nonaphasic Stroke SurvivorsTamilyn Bakas, DNS RN FAHA • Kurt Kroenke, MD • Laurie D. Plue, MA • Susan M. Perkins, PhD • Linda S. Williams, MD FAHA

Adverse consequences are known to occur in family members responsible for providing care to stroke survivors. However, the differential effect of aphasic versus nonaphasic stroke on caregivers has not been well studied. This study compares selected outcomes (e.g., perceived task difficulty, depressive symptoms, and other negative stroke-related outcomes) among caregivers of aphasic (n = 46) and nonaphasic (n = 113) stroke survivors. Results indicated that caregivers of aphasic survivors perceived greater difficulty with tasks and had more negative stroke-related outcomes than caregivers of nonaphasic survivors. Communication with the survivor was rated as most upsetting and difficult by caregivers in the aphasic group, followed by managing behaviors. Lack of time for family and friends was evident. Female caregivers and caregivers of survivors with self-care deficits also perceived greater difficulty with tasks and negative outcomes. Comprehensive assessment of the unique needs of caregivers of aphasic survivors is suggested for more individualized nursing interventions.

More than two thirds of the nation’s 4.6 million stroke survivors require the daily assistance of a family caregiver (American Heart Association, 2003; Dewey et al., 2002; Dorsey & Vaca, 1998). Caregiv-ers help their loved ones deal with multiple motor, sensory, visual, language, cognitive, and affective im-pairments inflicted by stroke, with depression being particularly common (Kelly-Hayes et al., 1998).

Research has documented the needs and concerns of stroke caregivers (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002), task difficulties (Bakas, Austin, Jes-sup, Williams, & Oberst, 2004; Bakas & Burgener, 2002; Hartke & King, 2002), high pr evalence of caregiver depression (34%–54%; Anderson, Linto, & Stewart-Wynne, 1995; Han & Haley, 1999), social complications (Bakas & Champion, 1999; Hartke & King, 2002), and even deterioration of physical health and incr eased risk of mortality as a result of providing care (Bakas & Champion, 1999; Schulz & Beach, 1999; Silliman, Fletcher, Earp, & Wagner, 1986; Williams, 1993). Little research, however, has focused specifically on caregiv-ers who provide care for aphasic stroke survivors (Han & Haley, 1999). Aphasia greatly affects communication between stroke survivors and their caregivers (Booth & Swabey, 1999; Kagan et al., 2004), making caregiver tasks more difficult, especially those focused on manag-ing difficult behaviors and providing emotional sup-port. Social isolation and other negative caregiver qual-ity of life (QOL) outcomes are also likely to occur. The one study exploring differences in outcomes between caregivers of aphasic and nonaphasic stroke survivors (McClenahan & Weinman, 1998) found no differences in general health perceptions, dispositional optimism, per-ceived social support, coping, generalized self-efficacy,

or illness perception, although the measures were rather global. No reported study has explored differences in stroke-specific caregiver outcomes in this context.

This article compares differences in perceived task difficulty, depressive symptoms, and other stroke-related outcomes between family caregivers of aphasic and non-aphasic survivors at 1 and 4 months after stroke. Stroke-related outcomes were defined as perceived changes in social functioning, subjective well-being, and physical health as a result of providing care (Bakas & Champion, 1999). A secondary purpose was to identify caregiver tasks perceived as difficult, upsetting survivor communi-cation and behavior problems, and worst stroke-related caregiver outcomes in the aphasic group.

MethodsParticipants and Data Collection

A convenience sample of 159 family caregivers of aphasic (n = 46) and nonaphasic (n = 113) stroke survivors was recruited from hospitals and clinics after approval from university and hospital institutional review boards. Following informed consent, questionnaires about survi-vor impairments, perceived task difficulties, depressive symptoms, and other stroke-related caregiver outcomes were administered at 1 and 4 months after stroke. One and 4 months were chosen in order to provide caregiv-ers with the opportunity to provide care. Data collection occurred in the clinical setting or by telephone. Attrition rate between 1 and 4 months was 6.3%.

Caregivers of aphasic survivors also completed ques-tionnaires about upsetting survivor communication and behavior problems. Assignment of caregivers to the aphasic versus nonaphasic groups was based on chart evidence of aphasia (any type noted in the progress notes

KEY WORDS

aphasiacaregiverdepressionoutcomestroke

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34 Rehabilitation Nursing • Vol. 31, No. 1 • Jan/Feb 2006

by physicians, neuropsychologists, or speech therapists) or by caregiver report of aphasia symptoms. Eligibility criteria included being an unpaid family caregiver or sig-nificant other of a noninstitutionalized stroke survivor within 1 month after stroke who could read and speak English and who provided at least two different types of caregiver tasks from the Oberst Caregiving Burden Scale (OCBS; Bakas et al., 2004; Carey, Oberst, McCubbin, & Hughes, 1991).

Measures

The 5-item language subscale from the Stroke Specific Quality of Life Scale Proxy Version (SSQOL Proxy; Williams, Redmon, Martinez, & Weinberger, 2000; Williams, Weinberger, Harris, Clark, & Biller, 1999) was used to measure communication problems in stroke survivors as rated by their caregivers, with lower scores indicating more impairment. The 6-item mobility subscale and the 5-item self-care subscale were also used. Items are rated on a 5-point scale ranging from couldn’t do it at all to no trouble at all (Williams et al., 1999). Since proxy measures com-pleted by caregivers tend to yield only slightly higher disability scores than disability measures completed by patients (Knapp & Hewison, 1999; Williams et al., 2000), the SSQOL Proxy was chosen as a general indicator of communication, mobility, and self-care impairment. Both the SSQOL and the SSQOL Proxy have good evidence of internal consistency reliabil-ity, construct validity, and responsiveness to change for all 12 subscales (Williams et al., 1999; Williams et al., 2000). Cronbach alpha for the SSQOL Proxy subscales used in this study (language, mobility, self-care) ranged between 0.87 and 0.94.

The 15-item difficulty subscale from the OCBS (Bakas et al., 2004; Carey et al., 1991) was used to measure caregiver perceptions of task dif ficulty. Items are rated on a 5-point scale ranging from not difficult to extremely difficult (Bakas et al., 2004). Evi-dence of internal consistency reliability, unidimen-sionality, and content and construct validity for the OCBS has been previously reported (Bakas et al., 2004; Bakas & Burgener, 2002; Bakas & Champion, 1999; Carey et al., 1991; Oberst, 1990). Cronbach al-phas for this study at 1 and 4 months were 0.89 and 0.90, respectively.

Depressive symptoms experienced by caregivers were assessed by the 9-item Patient Health Ques-tionnaire Depression Scale (PHQ-9), which has sat-isfactory evidence of internal consistency reliability, validity, specificity, and sensitivity (Kroenke, Spitzer, & Williams, 2001; Spitzer, Kroenke, & Williams, 1999; Spitzer, Williams, Kroenke, Hornyak, & McMur-ray, 2000). The PHQ-9 items are the nine DSM-IV

depressive disorders criteria rated on a 4-point scale ranging from not at all to nearly every day (Kroenke et al., 2001). Cronbach alphas for the PHQ-9 in this study at 1 and 4 months were 0.80 and 0.86 respec-tively.

Stroke-related caregiver outcomes were mea-sured by the 15-item Bakas Caregiving Outcomes Scale (BCOS; Bakas & Champion, 1999). Items ad-dress perceived changes in social functioning, subjec-tive well-being, and physical health specifically as a result of providing care and are rated on a 7-point scale ranging from changed for the worst to changed for the best (Bakas & Champion). Satisfactory internal consistency reliability and content, criterion-related, and construct validity have been reported (Bakas & Champion). Cronbach alphas for the present sample at 1 and 4 months were 0.85 and 0.90, respectively.

Only caregivers in the aphasic group completed the 24-item Revised Memory and Behavior Problems Checklist Upset Subscale (MBPC), which measures caregiver reaction to problematic behaviors in de-mentia (Teri et al., 1992). An additional 25 stroke-specific behavior items were added based on a re-view of the literature (Bakas et al., 2002; Williams, 1994; Williams & Dahl, 2002), as well as three items measuring upsetting survivor communication prob-lems (trouble speaking, trouble understanding, and trouble keeping up with conversation). The MBPC with additional items was analyzed at the item level because psychometric properties have not yet been determined in stroke caregivers at the summative scale level.

Data Analyses

Descriptive statistics were used to summarize caregiver and stroke survivor characteristics and mea-sures. Longitudinal data were analyzed using two-way repeated measures analysis of variance (ANOVA) for each dependent variable. Dependent variables were survivor communication as well as caregiver task difficulty, depressive symptoms, and stroke-related outcomes. Independent variables were time (1 versus 4 months after stroke) and group (aphasic versus nonaphasic). Post-hoc paired t tests measured within-group differences over time, and independent samples t tests measured between group differences at 1 and 4 months. With four post-hoc comparisons for each dependent variable, a more stringent alpha of p < .0125 was used based on the Bonferroni correction for multiple comparisons (Munro, 2001). Assumptions for compound symmetry and equality of variance-covariance matrices were tested (Munro) and cor-rected for if necessary. Although a few measures were skewed, there were no changes in the results when

Outcomes Among Family Caregivers of Aphasic Versus Nonaphasic Stroke Survivors


these scales were transformed using recommended procedures (Tabachnick & Fidell, 1996). SSQOL Proxy ratings for mobility and self-care at 1 month were added as covariates, and caregiver gender was added as another independent variable using repeat-ed measures analysis of covariance (ANCOVA). Item frequency distributions from the OCBS, the MBPC (with added items), and the BCOS were inspected to determine difficult caregiver tasks, upsetting survivor communication and behavior problems, and the worst caregiver outcomes in the aphasic group.

ResultsCaregiver and Stroke Survivor Characteristics

Most caregivers were female and either spouses or adult children (Table 1). The proportion of female caregivers was larger in the aphasic group than in the nonaphasic group (Chi Square = 6.20, p < .05). Using the total sample, female caregivers had signifi-cantly more difficulty with tasks (t = –3.23; –4.12, p < .01), more depressive symptoms (t = –3.43; –4.70, p < .001), and more negative stroke-related outcomes (t = 2.88; 2.81, p <.01) than male caregivers at both 1 and 4 months after stroke. Caregivers of aphasic survivors rated survivor mobility (t = –3.86, p < .001) and self-care (t = –4.86, p < .001) as being significantly more severe than caregivers of nonaphasic survivors using the 1-month SSQOL Proxy. Therefore, these variables were entered as covariates in subsequent analyses using ANCOVA, with caregiver gender added as an additional independent variable. The remaining de-mographic characteristics for caregivers and stroke survivors were similar for both groups (Table 1).

Survivor Communication

With both groups combined, caregivers rated sur-vivors’ communication impairments as mild, on av-erage, at both 1 and 4 months (Table 2). As expected, two-way repeated measures ANOVA revealed rela-tively more severe communication problems for the aphasic group, F(1,146) = 96.12, p < .001, although the ratings did impr ove significantly over time, F(1,146) = 13.19, p < .001. There were no significant time-by-group interaction effects. Post-hoc indepen-dent samples t tests were significant, indicating that communication problems were more severe for the aphasic group at both 1 and 4 months after stroke (t = –7.52; –7.40, p < .001). Paired t tests of within-group changes over time were significant for the aphasic group (t = –2.67, p < .01), but not for the nonapha-sic group using the Bonferroni corrected alpha of p < .0125. Subsequent ANCOVA revealed significant main effects for group, F(1,141) = 51.5, p < .001; care-giver gender, F(1,141) = 10.93, p < .01; survivor self-care, F(1,141) = 7.46, p < .01; and time, F(1,141) = 6.16, p < .05; but not for survivor mobility. Only the time by

self-care interaction was significant, F(1,141) = 4.29, p < .05. In other words, the ANCOVA revealed that survivor communication was rated more severe by caregivers in the aphasic group, female caregivers, and by caregivers of survivors with more self-care deficits, although communication did improve over time. More severe survivor communication problems were significantly related to increased caregiver task difficulty (r = –.38, –.29, p < .001), caregiver depres-sive symptoms (r = –.18, –.20, p <.05), as well as more negative stroke-related caregiver outcomes (r = .23, .31, p < .01) at both 1 and 4 months after stroke.

Caregiver Task Difficulty

With both groups combined, the OCBS scor es were fairly low, indicating that tasks were perceived as only slightly to moderately difficult overall (Table 2). Two-way repeated measures ANOVA revealed that caregivers in the aphasic group experienced rela-tively more difficulty with tasks, F(1,144) = 16.89, p < .001. Across both groups, tasks also became less dif-ficult between 1 and 4 months after stroke, F(1,144) = 5.14, p < .05, and there were no significant interaction effects. Post-hoc t tests showed greater task difficulty for the aphasic group at both 1 and 4 months after stroke. Paired t tests of within-group changes be-tween 1 and 4 months failed to reach significance for either group based on the corrected alpha of p <.0125 (Figure 1). Subsequent ANCOVA revealed significant main effects for survivor self-care, F(1,139) = 23.26, p < .001; and caregiver gender, F(1,139) = 8.85, p < .01; but not for group, time, or survivor mobility. There were no significant interactions. In other words, the ANOVA revealed that caregivers in the aphasic group experienced relatively more difficulty with tasks. The ANCOVA revealed that female caregivers and those caring for survivors with self-care deficits also expe-rienced more difficulty with tasks.

Difficult Tasks and Problematic Behaviors

Because tasks were significantly more difficult for the aphasic group at both 1 and 4 months in the ini-tial ANOVA, item distributions from the OCBS and the MBPC (with added items) in this gr oup were inspected to determine which caregiver tasks and survivor communication and behavior pr oblems were perceived as most problematic (Table 3). Only items rated moderately, very, or extremely difficult or upsetting are listed in Table 3. Communication with the stroke survivor was difficult for approximately half of the caregivers, followed by managing diffi-cult behaviors and finances and talking with health professionals. The survivors’ trouble speaking was upsetting for about half of the caregivers. Sad or de-pressed survivor behaviors were rated as upsetting by close to 40% of caregivers at both 1 and 4 months

Communication with the stroke survivor was difficult for approximately half of the caregivers


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after stroke. Additional difficult tasks and upsetting survivor behaviors are detailed in Table 3.

Caregiver Depressive Symptoms

The overall PHQ-9 means were relatively low at both 1 and 4 months (Table 2), although 18.1% of the caregivers scored in the moderately depressed

range (PHQ-9 score > 10; Kroenke et al., 2001). An additional 18.1%, although scoring in the nonde-pressed range, were currently taking antidepres-sant medications, suggesting that as many as 36% of the caregivers suffered from depression. There were no significant main or time-by-group effects. Despite these findings, post-hoc paired t tests for the

Table 2. Descriptive Statistics for Measures

MeasureNo. of Items N M SD

Actual Range*

Cronbach Alpha

Survivor impairment (SSQOL Proxy)1 Month

Mobility 6 159 3.9 1.0 1–5 0.91Self-care 5 159 4.0 1.0 1–5 0.87Language 5 159 3.9 1.2 1–5 0.94

4 MonthsLanguage 5 147 4.1 1.0 1–5 0.93

Caregiver task difficulty (OCBS)1 Month 15 159 23.2 8.7 15–51 0.894 Months 15 147 22.1 8.7 15–51 0.90

Caregiver depressive symptoms (PHQ-9)1 Month 9 159 5.0 4.6 0–19 0.804 Months 9 149 4.0 4.5 0–27 0.86

Caregiver outcomes (BCOS)1 Month 15 159 57.2 9.5 25–99 0.854 Months 15 149 58.4 10.8 15–105 0.90

*Possible ranges: SSQOL Proxy, 1–5; OCBS, 15–75; PHQ-9, 0–27; BCOS, 15–105.

Figure 1. Perceived Task Difficulty (OCBS) Among Caregivers of Aphasic (n = 42) and Nonaphasic (n = 104) Survivors 1–4 Months After Stroke

Note. Higher scores indicate greater task difficulty.


nonaphasic group showed a significant improve-ment in depressive symptoms over time, whereas the aphasic group remained unchanged (Figure 2). Sub-sequent ANCOVA revealed significant main effects for survivor gender, F(1,142) = 11.93, p < .01; and survivor self-care, F(1,142) = 5.34, p < .05; but not for group, time, or survivor mobility. There were no significant interactions. In other words, the ANCOVA revealed that female caregivers and caregivers of survivors with more self-care deficits experienced relatively

more depressive symptoms. Depressive symptoms, however, were similar for caregivers of aphasic and nonaphasic survivors.

Stroke-Related Caregiver Outcomes

The BCOS means for the combined groups at both 1 and 4 months (57.2 and 58.4, respectively) were less than the scale midpoint of 60 for possible scores, in-dicating that caregiver lives on average had changed for the worst (Table 2). Although there were no


Table 3. Outcomes Rated as Moderate, Very, or Extremely Difficult or Upsetting, or Changing for the Worst, by >20% Caregivers in Aphasic Group

1 Month (N = 46) 4 Months (N = 42)

Number Percentage Number PercentageDifficult Caregiver Tasks

Communication with survivor 25 54.3 20 47.6Managing behaviors 21 45.7 16 38.1Managing finances 15 32.6 11 26.2Talking with health professionals 15 32.6Providing emotional support 14 30.4Finding care while away 13 28.3Household tasks 12 26.1 13 31.0Assisting with mobility 11 23.9Providing transportation 10 21.7 14 33.3Shopping or running errands 10 21.7Managing services and resources 10 21.7

Upsetting survivor communicationTrouble speaking 22 47.8 21 50.0Trouble understanding 17 37.0 18 42.9Trouble keeping conversation 13 28.3 10 23.8

Upsetting survivor behaviorsSad or depressed 18 39.1 17 40.5Anxious or worried 15 32.6No interest in others or activities 12 26.1 9 21.4Personality changed, not the same 11 23.9 14 33.3Crying or tearful 11 23.9 13 31.0Arguing, irritable, or complaining 11 23.9Waiting for others to do things 10 23.8Doesn’t appreciate help 9 21.4

Worst caregiver outcomesTime for social activities 39 84.8 30 71.4Time for family activities 34 73.9 23 54.8Level of energy 24 52.2 21 50.0Financial 24 52.2 18 42.9Emotional 23 50.0 20 47.6Roles in life 23 50.0 18 42.9Ability to cope with stress 16 34.8 15 35.7Relationship with friends 16 34.8 15 35.7Future outlook 14 30.4 9 21.4Physical health 11 23.9 9 21.4Relationship with family 11 23.9 9 21.4Relationship with survivor 10 23.8Self-esteem 9 21.4Physical functioning 9 21.4


significant changes in outcomes from 1 to 4 months after stroke, caregivers in the aphasic group experi-enced relatively more negative outcomes, F(1,147) = 4.17, p < .05. A post-hoc t test indicated that this difference was significant at 1 month after stroke, but not at 4 months, based on the corrected alpha of p < .0125 (Figure 3). Subsequent ANCOVA revealed significant main effects for survivor gender, F(1,142) = 8.84, p < .01; and survivor self-care, F(1,142) = 6.38, p < .05; but not for group, time, or survivor mobility. Time by self-care, F(1,142) = 7.19, p < .01; and time by mobility, F(1,142) = 5.74, p < .05, interactions were significant. In other words, the ANOVA revealed that caregivers in the aphasic group experienced rela-tively more negative caregiver outcomes. The AN-COVA revealed that female caregivers and caregivers of survivors with self-care deficits also experienced relatively more negative caregiver outcomes.

Worst Outcomes

Because overall stroke-related caregiver outcomes were significantly worse for the aphasic group in the initial ANOVA, item distributions from the BCOS were inspected to determine which aspects of caregiver lives had deteriorated most. Time for family and social activi-ties had deteriorated for most (55%–85%) caregivers in the aphasic group at both time points. Negative changes in level of energy, financial well-being, emotional well-being, and roles in life were found in approximately half of the caregivers. Roughly 24% at 1 month and 21% at 4 months indicated their physical health had wors-ened from providing care. Additional negative changes in caregiver lives are detailed in Table 3.

DiscussionThis study found that survivor communication

was rated more severely for the caregiver in the aphasic group, even when adding covariates in sub-sequent analyses. Survivor communication problems were also associated with more task difficulty, care-giver depressive symptoms, and negative stroke-re-lated caregiver outcomes. These findings support the challenges that caregivers must face in communicat-ing with aphasic survivors (Booth & Swabey, 1999; Kagan et al., 2004). In fact, the survivors’ trouble with speaking was upsetting for a larger proportion of caregivers in the aphasic group than any of the other problem behaviors or caregiver tasks. Past studies have found that managing problem behaviors and providing emotional support are among the most difficult tasks for stroke caregivers (Anderson et al., 1995; Bakas et al., 2002; Bakas et al., 2004; Williams, 1994). Without exploring the effect of aphasic versus nonaphasic stroke on caregivers, the unique difficul-ties related to communicating with aphasic survivors would not be fully appreciated.

This study also found that caregivers of aphasic survivors experienced more difficulty with tasks than caregivers of nonaphasic survivors, although caregiver gender and survivor self-care prevailed in subsequent analyses. These findings suggest that female caregivers and those caring for survivors with self-care deficits were also likely to perceive tasks as being difficult. Again, the most difficult tasks for caregivers of aphasic survivors were communicating with the survivor, managing difficult behaviors such as sadness or depression, dealing with finances, and

Figure 2. Depressive Symptom Severity (PHQ-9) Among Caregivers of Aphasic (n = 42) and Nonaphasic (n = 107) Survivors 1–4 Months After Stroke

Note. Higher scores indicate more depressive symptoms.


talking with health care professionals. Comprehen-sive assessment and individualized interventions are needed, particularly because mobility and self-care impairments were significantly more severe in the aphasic group. Better communication with health-care professionals is also needed (Bakas et al., 2002). The OCBS (Bakas et al., 2004; Carey et al., 1991) or the Caregiver Needs and Concerns Checklist (CNCC; Bakas et al., 2002) could be used to help nurses iden-tify particular areas where caregivers might require assistance.

The severity of caregiver depressive symptoms was very similar for both the aphasic and nonapha-sic groups, although communication problems as measured by the SSQOL Proxy were mildly related to caregiver depressive symptoms (p < .05). Depres-sion can be attributed to many causes outside of the caregiving situation, which may have overshadowed the effect of aphasia, but a substantial proportion of caregivers were experiencing moderate depres-sion and would have benefited from antidepressant therapy or counseling. This is particularly important because caregiver stress is a leading cause of costly long-term institutionalization of stroke survivors (Han & Haley, 1999). Female caregivers and those dealing with survivor self-care deficits were espe-cially prone to depressive symptoms in this study. The PHQ-9 (Kroenke et al., 2001) is a brief instrument that could be used to screen caregivers for depressive symptoms in practice settings.

Caregivers of aphasic survivors had more nega-tive stroke-related outcomes; however, these findings were no longer significant in subsequent analyses. Caregiver gender and survivor self-care were more strongly associated with caregiver outcomes than the presence of aphasia. Nevertheless, substantial propor-tions of caregivers in the aphasic group experienced negative stroke-related caregiver outcomes. Similar to the findings of other studies (Bakas & Champion, 1999; Hartke & King, 2002; Schulz & Beach, 1999; Sil-liman et al., 1986; Williams, 1993), well over half of the caregivers in the aphasic group reported a lack of time for social activities with family and friends, and almost a quarter indicated that their physical health had deteriorated as a result of providing care. To pro-tect QOL for stroke caregivers, nursing assessment of stroke-related outcomes is an essential prerequisite to intervention. One brief scale to quickly assess these factors is the BCOS (Bakas & Champion, 1999).

Limitations

This study has several limitations. The SSQOL Proxy language ratings of communication impairment supported the assignment of caregivers to aphasic versus nonaphasic groups. Because the specific types of aphasia exhibited by the stroke survivors were not assessed, some types of aphasia may not have been well represented. Male caregivers were underrepre-sented in the aphasic group, limiting generalizabil-ity of the findings to primarily female car egivers.


Figure 3. Stroke-Related Outcomes (BCOS) Among Caregivers of Aphasic (n = 42) and Nonaphasic (n = 107) Survivors 1–4 Months After Stroke

Note. Lower scores indicate more negative outcomes.


Exploring group-by-group gender interactions was also not possible. Other than African Americans, mi-norities were underrepresented as well.

Also noteworthy is the mean age of survivors (M = 62.5 years, range 27–89) and caregivers (M = 51.7 years, range 21–78). Findings may not fully repre-sent survivors and caregivers 65 years and older. Ap-proximately one-third of the caregivers in the study were adult children, and another 15% were relatives other than spouses. This lowered the mean age for caregivers. A little under half of the caregivers were employed either full or part time showing that many had competing demands for their time. This was es-pecially the case with the adult child caregivers.

Last, many of the findings were not significant after subsequent analyses, possibly because of the modest size of the sample, but also because caregiver gender and survivor self-care might be more impor-tant than the presence of aphasia in this context. This supports the need for individualized assessment and interventions rather than providing generic one-size-fits-all interventions for family caregivers. Nurses are in an ideal position to assess, intervene, or refer caregivers to other professionals for specific needs they have, particularly because nurses interact with families during rehabilitation.

Nursing ImplicationsThis study revealed that family car egivers of

aphasic survivors experienced r elatively poorer communication with the survivor, perceived more difficulty with tasks, and had more negative stroke-related caregiver outcomes than family caregivers of nonaphasic survivors. These findings were also more evident in female caregivers and caregivers of survivors with self-care deficits. Tasks that were particularly difficult or upsetting for caregivers in the aphasic group were communicating with the survi-vor, managing survivor behaviors, such as sadness or depression, managing finances, and talking with healthcare professionals about the survivor’s condi-tion. Deterioration of family and social activities, lack of energy, and poor emotional and financial well-being were also common. Almost a quarter of care-givers in the aphasic group reported that their physi-cal health had changed for the worse.

The wide array of caregiver difficulties and negative outcomes makes it challenging for rehabilitation nurses to intervene and support caregivers. Detailed assessment of family caregiver needs, difficulties, and outcomes are suggested as a way of selecting individualized nursing interventions or referrals to appropriate resources. The 32-item CNCC (Bakas et al., 2002), 15-item OCBS (Bakas et al., 2004), 15-item BCOS (Bakas & Champion, 1999), or the 9-item PHQ-9 (Kroenke et al., 2001) are examples of tools that could be used in practice settings to identify

specific areas where individual caregivers need help. Once problem areas for caregivers have been identified, rehabilitation nurses in both inpatient and outpatient settings can then focus their efforts on specific individu-alized interventions or referrals for family caregivers of stroke survivors.

SummaryThis study provides important preliminary data

comparing caregivers of aphasic with nonaphasic stroke survivors regarding tasks they perceive as dif-ficult, depressive symptoms, and stroke-related out-comes. Further study is recommended using larger, more representative samples to explore differences between caregivers of aphasic and nonaphasic stroke survivors matched in terms of caregiver gender and survivor self-care. Studies should also be conducted that test multicomponent interventions based on detailed assessments of individual caregiver needs. Individualized multicomponent interventions that are feasible in practice settings are greatly needed. Meanwhile, nurses should consider compr ehen-sive assessment of the unique needs of caregivers of aphasic stroke survivors in order to select more individualized nursing interventions and referrals for this vulnerable population.

AcknowledgmentsFunding for this study was provided by the Cen-

ter for Enhancing Quality of Life in Chronic Illness, National Institute for Nursing Research, NIH #P30 NR05035 (Center PI: Joan K. Austin, Pilot PI: Tamilyn Bakas), and the National Institute for Neurological Disorders and Stroke, NIH #R01 NS39571-01 (PI: Linda S. Williams). Joan K. Austin, DNS RN FAAN, and Carol J. Farran, DNSc RN FAAN, are acknowl-edged for their consultation and mentoring. Phyllis Dexter, PhD RN, is acknowledged for her editorial assistance. Approvals for the protection of human subjects used in this manuscript have been obtained from IUPUI and Clarian/Methodist Hospital Insti-tutional Review Boards filed under study numbers 0106-11B and 9903-06, and from Community Hospi-tals Indianapolis, Community Medical Research In-stitute Institutional Review Board filed under study number 0106-11B/Bakas.

About the Authors

Tamilyn Bakas, DNS RN FAHA, is an associate professor in the Indiana University School of Nursing, Indianapolis, IN.

Kurt Kroenke, MD, is a senior scientist at Regenstrief Insti-tute and Department of Medicine, Indiana University School of Medicine, Indianapolis, IN.

Laurie D. Plue, MA, is an assistant implementation research coordinator for VA Stroke QUERI in the Roudebush Veterans Administration Medical Center, IN.


Susan M. Perkins, PhD, is an associate professor in the divi-sion of biostatistics at the Indiana University School of Medi-cine, Indianapolis, IN.

Linda S. Williams, MD FAHA, is chief of neurology in the Roudebush Veterans Administration Medical Center, and associate professor in the Indiana University School of Medi-cine, Indianapolis, IN.

Direct correspondence to Tamilyn Bakas, DNS RN FAHA, Associate Professor, Indiana University School of Nursing, 1111 Middle Drive, NU 417, Indianapolis, IN 46202-5107, or to [email protected].

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Outcomes Among Family Caregivers of Aphasic Versus Nonaphasic Stroke Survivors